Zucchini caused a lot of symptoms and we stopped before getting to full FPIES vomit-till-bile session with dehydration. Little man suffers for weeks recovering from those reactions, we know from his past all too well. Slow food trials are intended to avoid that, to stop at first signs that the body is not tolerating a food….for whatever reason-. If his body cannot tolerate a food, it shouldn’t be in his diet causing problems and preventing him from expanding his diet. Unfortunately, for our little man that has meant a very limited diet. He isn’t the only FPIES kiddo with a very limited diet still at 2yrs.old. It may be because that he has other things going on alongside his FPIES (one being a disaccharide deficiency, others unknown), or it may just simply be his FPIES.
We didn’t get to full FPIES vomit till bile (although we did see vomit);and yet we still had weeks of recovery time- weird diapers with mucus and blood and undigested food, terrible irrational behavior, decreased appetite, not trusting his safe foods, is he reacting to his safe foods?, whining, tantrums….and we stopped before the FPIES vomit. In the past, doctors not familiar with FPIES, or our little man, have previously advising us to push through until we get to the vomit (and not sure if we’d be advised to stop even then). With Little man not on an elemental formula, and missing nutrients in his restricted-unable-to-expand-diet; some doctors are sure any symptoms and reactions we encounter surely do not outweigh his needs for the nutrients those foods would supply. I know, from the outside looking in, it seems quite bizarre. It IS bizarre, that his body would not just reject food, but attack it in the way that it does!! It’s very bizarre. But that doesn’t make it not real, a very scary, exhausting reality that his daddy and I live with day in and day out. Unfortunately, we feel it is poor advice to tell us to push through symptoms that make our little man sick, especially without factoring in his illness complexity. There isn’t many other ways to put it- it is poor advice to not consider his allergic mechanisms when advising us to treat other symptoms. I have explained it this way to people- this is the logic we face….it is like telling someone with celiac disease that they need the vitamins in fortified bread so they must eat the bread, even though it contains the very gluten protein they are allergic to. The allergy isn’t anaphylaxis, so it will be fine. NO! It won’t be fine! A person with celiac ingesting gluten is doing chronic, and often silent, damage to their system. It is vitally important for a person with celiac disease to avoid gluten- in any form and in any contamination of. That is how our little man's body responds to corn, and many other of his triggers. His body suffers internal inflammation, oftentimes inflamed before he shows us overt outward signs (FPIES vomit till bile); so we watch his other signs- other signs that tell us that something is causing inflammation in his system. Will his body be able to cope? Will the inflammation subside? Or will his body try to cope, only to exhaust every internal anti-inflammatory mechanism until it is too tired to continue? And then everything starts to go “haywire”. That is what happened with zucchini, and countless other foods we have had to shelve….his little body just gets too tired to continue fighting- so instead of making it, watching as he gets weaker and more off character and unrecognizable, we stop giving that food.
We are now a few weeks past zucchini, ready for the next trials. But what we did learn was that an in hospital stay for a trial isn't going to work for our little man. The symptoms we see and the symptoms doctors are measuring are too different. We are responsible for keeping him safe, keeping him from being sick and increasing his nutrients.....and we remain his voice during these reactions- FPIES or not. Where does that bring us? We need a new plan.....
Showing posts with label gut inflammation. Show all posts
Showing posts with label gut inflammation. Show all posts
Wednesday, December 21, 2011
Tuesday, July 26, 2011
Scope results
Initial scope findings showed inflammation in the stomach and duodenum, similar to how it has looked in the past. Colonscopy was clear, despite having continued blood in stools. We would wait for the biopsy results to assess more but initial findings were concerning for the course we have been on. What could be causing this? My mind races to the fails he has had recently, to the new things in his diet, to a darned if you do, darned if you don’t place in the road.
Our GI doctor is perplexed and will discuss things further with us when we get biopsy results back. I e-mailed Dr.J for her insights to which she replies how, from their studies, she is beginning to find how there are two sets of FPIES kids- ones who respond to the elemental/elimination diet and ones who do not, whose immune systems are different. This makes a lot of sense for what we see among FPIES kids- those that are typical and classic and those that are atypical and then a spectrum in between- which equates to a lot of variables in reactions, there must be just as many variables in treatments.
I have said for months that we need to do individualized treatment, think outside of the box, follow Little man’s signs and symptoms to find his path to healing. With the biopsy results still pending, we head to see an MD trained in Functional medicine, to explore this path to healing. The consult could not have come soon enough as clearly we need a different path to heal Little man and help him thrive.
Our GI doctor is perplexed and will discuss things further with us when we get biopsy results back. I e-mailed Dr.J for her insights to which she replies how, from their studies, she is beginning to find how there are two sets of FPIES kids- ones who respond to the elemental/elimination diet and ones who do not, whose immune systems are different. This makes a lot of sense for what we see among FPIES kids- those that are typical and classic and those that are atypical and then a spectrum in between- which equates to a lot of variables in reactions, there must be just as many variables in treatments.
I have said for months that we need to do individualized treatment, think outside of the box, follow Little man’s signs and symptoms to find his path to healing. With the biopsy results still pending, we head to see an MD trained in Functional medicine, to explore this path to healing. The consult could not have come soon enough as clearly we need a different path to heal Little man and help him thrive.
Saturday, May 28, 2011
Blueberry, GAPS and your FoodPrint....
Much like our banana, blueberry trial happened one day. Little man wants to eat, he wants to explore and taste foods. Of course we can't just let him eat anything, he has severe allergies. So, we must practice discipline and restraint. We have discussed in the past, ways of introducing foods- which foods to trial, even rotation trialing....all trying to find the "fit" that works for our Little Man. One thing we've discussed is letting him try foods that aren't on his trigger list. If it is not dairy, soy, rice, corn, tapioca, or wheat; we will let him try it. We have a growing list of fruits and veggies on the "shelved" list because of this method. We have to start somewhere, we have to trial something.
One afternoon this past week, I had gotten blueberries at the store because our 3yr.old has always loved them. Little Man "asked" for them. I hesitated, skins...seeds....really, I know better. In the hospital where I work as a Dietetic Technician, one of my roles is to provide dietary guidance to those who have just had intestinal surgeries- the main "rule" with that diet? No nuts, no seeds, no skins, until the gut has healed and then cautiously and one at a time introductions from there until tolerance is determined. Little man's main nutrition is seeds! Hemp seeds- ground, strained and made into milk. Millet is also a seed- puffed into puffs or ground into flour.
Awhile back, I had given thought to an order for food introductions. Following the low-allergen scale doesn't really seem to apply to FPIES as those foods are all on the "common trigger" list (rice, sweet potatoes, squash, chicken....). What about a rotation type diet? Would that work for my little delayed reactor or would it just make things more muddy and confusing? Having training in nutrition, I also am aware of every whole food playing a role in our body, some foods (called Functional foods) even beyond basic nutrition. Each food has a class of digestive components, could this be a way to introduce foods? And where do I find a guide for that?
A fellow FPIES mom, looking for healing for her daughter- who was not finding true healing on the corn-based elemental formula- was re-introduced to something called GAPS diet. GAPS stands for Gut And Psychology Syndrome. There are also diets that follow GAPS, and others such as Weston Price, SCD (specific carbohydrate diet) and Paleo among others. Which ones could work? Would any work? Are they all hype? Or are they clues to what could work? Would any of these work for FPIES? As this fellow FPIES mom began studying the concepts of the GAPS, it became clear that the GAPS MD, a Dr.Natasha McBride, had outlined a diet with those considerations in mind- which foods would promote healing and nutrition and then encourage gut flora to flourish and provide homeostasis in the gut, so that all systems tied to it would flow better from it. A guide for food introductions not based on low allergen scale but beyond that, into the effects these foods have on the digestive system through recovery and beyond. But how does this translate to FPIES, a severe food allergy?
I am a big advocate for individualized approaches to health. We all have our own set of genes, our own environmental backgrounds and exposures, our own "footprint"- or as a speaker I once attended called it, a "foodprint". I began to wonder if something like GAPS could be tailored to FPIES? Could it at least be a guide?
I have not fully studied the GAPS diet as this fellow mom has, but other moms have and are also finding some successes, which I find encouraging. I hope these moms can be encouraging to others looking to find the the right fit for their little ones. It is a lot of work, it requires thinking outside the box, it requires taking risks you hadn't planned on taking, it requires time and energy, and resources.
I'm just trying to figure out where Little Man fits - hemp milk formula provides nutrition and has provided healing for his inflamed gut. The essential fatty acids have been critical to support his healing from inflammation but there is still healing the leaky gut. We are working through that with probiotics and have noticed significant changes already. But now what? What foods come next to continue to encourage this healing path we are on?
Blueberry's are not. And Little man's system confirmed that for us. That first day, while his brother T. had a snack, he had 2 blueberries- that he devoured before I could turn around! My apprehension for how he was going to digest those skins was pushed aside by the fact that he ATE those skins! A little boy who has not had much for flavors and textures, who still struggles with gagging on his millet flour recipes, just ate a whole blueberry!
He had no adverse effects all evening....maybe he was hyper- we were enjoying an evening out on a bike ride and walk to the park- he seemed to have more energy but who doesn't when summer finally comes after a long winter? During the night, he had difficulty sleeping- whimpering, legs curled, stomach pains. Nothing extreme but clearly there....and my apprehension came back. The morning diaper filled with blood confirmed his tummy pains, and that it was just too much to expect his sensitive digestive system to digest these skins yet. Not wanting to take away a treat he was ENJOYING, I boiled the blueberries and blended them to a syrup. I made them into Dippin Dots, maybe he would be fooled- they are still round! He wasn't completely fooled but he did enjoy them! That night, no pain filled tummy aches but he was up every 45-60minutes all night long...but he did take a bottle every time....so maybe he was just hungry? The next day, he was particularly fussy all day- was this from the blueberries or 'typical' toddler behaviors? Yesterday, after a nasty diaper, he was back to baseline....confirming some issues with blueberries. FPIES symptoms building? Or digestive system not ready? Either way, another fruit is shelved for now.
One afternoon this past week, I had gotten blueberries at the store because our 3yr.old has always loved them. Little Man "asked" for them. I hesitated, skins...seeds....really, I know better. In the hospital where I work as a Dietetic Technician, one of my roles is to provide dietary guidance to those who have just had intestinal surgeries- the main "rule" with that diet? No nuts, no seeds, no skins, until the gut has healed and then cautiously and one at a time introductions from there until tolerance is determined. Little man's main nutrition is seeds! Hemp seeds- ground, strained and made into milk. Millet is also a seed- puffed into puffs or ground into flour.
Awhile back, I had given thought to an order for food introductions. Following the low-allergen scale doesn't really seem to apply to FPIES as those foods are all on the "common trigger" list (rice, sweet potatoes, squash, chicken....). What about a rotation type diet? Would that work for my little delayed reactor or would it just make things more muddy and confusing? Having training in nutrition, I also am aware of every whole food playing a role in our body, some foods (called Functional foods) even beyond basic nutrition. Each food has a class of digestive components, could this be a way to introduce foods? And where do I find a guide for that?
A fellow FPIES mom, looking for healing for her daughter- who was not finding true healing on the corn-based elemental formula- was re-introduced to something called GAPS diet. GAPS stands for Gut And Psychology Syndrome. There are also diets that follow GAPS, and others such as Weston Price, SCD (specific carbohydrate diet) and Paleo among others. Which ones could work? Would any work? Are they all hype? Or are they clues to what could work? Would any of these work for FPIES? As this fellow FPIES mom began studying the concepts of the GAPS, it became clear that the GAPS MD, a Dr.Natasha McBride, had outlined a diet with those considerations in mind- which foods would promote healing and nutrition and then encourage gut flora to flourish and provide homeostasis in the gut, so that all systems tied to it would flow better from it. A guide for food introductions not based on low allergen scale but beyond that, into the effects these foods have on the digestive system through recovery and beyond. But how does this translate to FPIES, a severe food allergy?
I am a big advocate for individualized approaches to health. We all have our own set of genes, our own environmental backgrounds and exposures, our own "footprint"- or as a speaker I once attended called it, a "foodprint". I began to wonder if something like GAPS could be tailored to FPIES? Could it at least be a guide?
I have not fully studied the GAPS diet as this fellow mom has, but other moms have and are also finding some successes, which I find encouraging. I hope these moms can be encouraging to others looking to find the the right fit for their little ones. It is a lot of work, it requires thinking outside the box, it requires taking risks you hadn't planned on taking, it requires time and energy, and resources.
I'm just trying to figure out where Little Man fits - hemp milk formula provides nutrition and has provided healing for his inflamed gut. The essential fatty acids have been critical to support his healing from inflammation but there is still healing the leaky gut. We are working through that with probiotics and have noticed significant changes already. But now what? What foods come next to continue to encourage this healing path we are on?
Blueberry's are not. And Little man's system confirmed that for us. That first day, while his brother T. had a snack, he had 2 blueberries- that he devoured before I could turn around! My apprehension for how he was going to digest those skins was pushed aside by the fact that he ATE those skins! A little boy who has not had much for flavors and textures, who still struggles with gagging on his millet flour recipes, just ate a whole blueberry!
He had no adverse effects all evening....maybe he was hyper- we were enjoying an evening out on a bike ride and walk to the park- he seemed to have more energy but who doesn't when summer finally comes after a long winter? During the night, he had difficulty sleeping- whimpering, legs curled, stomach pains. Nothing extreme but clearly there....and my apprehension came back. The morning diaper filled with blood confirmed his tummy pains, and that it was just too much to expect his sensitive digestive system to digest these skins yet. Not wanting to take away a treat he was ENJOYING, I boiled the blueberries and blended them to a syrup. I made them into Dippin Dots, maybe he would be fooled- they are still round! He wasn't completely fooled but he did enjoy them! That night, no pain filled tummy aches but he was up every 45-60minutes all night long...but he did take a bottle every time....so maybe he was just hungry? The next day, he was particularly fussy all day- was this from the blueberries or 'typical' toddler behaviors? Yesterday, after a nasty diaper, he was back to baseline....confirming some issues with blueberries. FPIES symptoms building? Or digestive system not ready? Either way, another fruit is shelved for now.
Saturday, April 23, 2011
Anemia
Little man has always had low hemoglobin, the first blood work we did (around 6mo.) showed a low hemoglobin and low Vit.D. It was one of my confirmations of the intestinal inflammation I suspected he had, that matched his ever-growing symptoms. A change from breast milk to elemental formula where we could be assured he was getting the iron his body needed, but his hemoglobin continued to teeter and his iron stores continued to fall. Iron is needed for the body to make hemoglobin. We got him started on some oral iron pills- even compounded to avoid his allergens (corn), initially he seemed to respond to them and we had hopes it would do the job- slowly but safely. He had a lot of weird symptoms at that time but we attributed to iron upsetting a sensitive stomach and resigned that it would be part of the side affects he would have to deal with....to avoid a blood transfusion. A few weeks later and he was no longer responding (even reacting to) his iron pills, his iron stores were severely depleted and his hemoglobin dropped severely low. By the end of October, he was admitted for a blood transfusion....a very scary time for us. He responded well to the blood transfusion and his hemoglobin raised nicely; however it did little for his iron stores and within a few weeks, he was quickly declining again. After the soy challenge, it went very low. That is when IV iron was decided to be the best course for him, along with IV nutrition. That was almost 4mo.ago. We have been checking his blood labs frequently, with two checks in a row revealing a wonderful hemoglobin within normal limits. We last checked March 15. We had a follow up appointment on April 15 with our GI doctor, it was time to check his labs again....he was chewing on wood, he was fatiguing easily, his appetite was declining, he had had accidental ingestion reactions, he was spiraling....the blood work came back and we were all surprised to find a low hemoglobin once again (8.8)! Back to IV iron....
Why are his iron stores always so low? Is it his diet? From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula. IV iron has been the only thing to bring his levels back to where they should be. His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.
His gut is not absorbing his iron enough- regardless if his diet is complete in it or not. But why?
http://www.loveyourbelly.com/resources/gut.html
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).
He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia. We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.
Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him. But I'm not working fast enough....
Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting. He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take. Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.
Why are his iron stores always so low? Is it his diet? From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula. IV iron has been the only thing to bring his levels back to where they should be. His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.
His gut is not absorbing his iron enough- regardless if his diet is complete in it or not. But why?
http://www.loveyourbelly.com/resources/gut.html
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).
He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia. We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.
Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him. But I'm not working fast enough....
Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting. He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take. Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.
Monday, March 14, 2011
Gut Homeostasis
The functioning of the gut is important to our overall health. I've been doing a few posts on this: Nutrigenomics, Probiotics, GI immune system.
Indeed, we now know that intestinal flora plays an important role in health: stimulating the immune system, protecting the host from invading bacteria and viruses, aiding digestion and assimilation of food. Yet, the importance of these bacteria in the gastro-intestinal “GI” tract has been neglected for a long time, while the focus was merely placed on enteric pathogens and other factors leading to gastrointestinal "disorders".Custom Probiotics
Gut microflora is specific to each individual, established at birth- resident flora does not change substantially from birth. However, many things in life can change the density,numbers/concentration, and ratio of good to bad microflora. These things include: diet, antibiotics, illness, stress, infection, the list goes on but these are the main effectors. To achieve homeostasis, there needs to be a balance of good gut flora to bad. "Lactobacilli and Bifidobacteria, should predominate, presenting a barrier to invading organisms. Around 85% of the intestinal microflora in a healthy person should be good bacteria and 15% bad bacteria. The greater the imbalance, the greater the symptoms" Custom probiotics
You'll notice my above links, a fellow FPIES mom shared the link in her search for probiotics for her child. I typically don't quote websites that are also selling something and proceed with caution with their information (as I just need to re-research it to be sure it is medically sound information) but the above information is good information from their site, which I found easy to read through (although they are selling something and although it looks like a promising probiotic, as always check with the manufacturer for safe ingredients first!). The reason I have bookmarked their site is because they have a GREAT illustration of the intestines and it's tie to the immune system. So, if you'd like a look at that- visit this site and scroll down the page a few paragraphs.
It shows the villi and crypt of the intestines. The villi and crypt can be damaged in severe/chronic FPIES inflammation, therefore causing further cascading problems of illness from increased intestinal permeability (leaky gut) due to the inflammation opening "holes" in the intestine, thereby causing further damage, deficiencies and mostly allergies/intolerance's as proteins "leak" into the blood stream (via the lymph). Villi damage can also lead to nutritional deficiencies and weight loss as this is where nutrients are picked up from the broken down food molecules.
Intestinal flora forms a natural barrier to pathogens and also work together with the GALT (intestinal immune system within the GI tract made of lymphoid cells), comprised of Peyer's Patches (which facilitate the beginning of the immune response in the GI tract), Paneth cells (control microbes) and dendritic cells (micro flora communication). When the antigenic presenting dendritic cell (where micro flora have their role) activates the lymphocytes, it leaves the mucousa via the lymph and enters the blood stream via the thoracic duct. The activated lymphocytes then travel back to the gut and can colonize in the same mucousa or other mucousal sites along the GI tract. This is where the Tmemory cells are then stored and activated upon re-exposure to trigger (antigen) proteins (and likely why the re-exposure can be a more intense response because of the recognition from previous activated lymphocytes.
Probiotics can help manage that balance once it has been established (past infancy). Probiotics have antimicrobial effects (pathogens, toxins), maintain intestinal epithelium (barrier), and regulate the immune system via the GALT (inflammatory responses to allergens and other inflammatory substances).
It is clear the balance (homeostasis) of micro flora in the gastrointestinal tract is important to immune responses.
Indeed, we now know that intestinal flora plays an important role in health: stimulating the immune system, protecting the host from invading bacteria and viruses, aiding digestion and assimilation of food. Yet, the importance of these bacteria in the gastro-intestinal “GI” tract has been neglected for a long time, while the focus was merely placed on enteric pathogens and other factors leading to gastrointestinal "disorders".Custom Probiotics
Gut microflora is specific to each individual, established at birth- resident flora does not change substantially from birth. However, many things in life can change the density,numbers/concentration, and ratio of good to bad microflora. These things include: diet, antibiotics, illness, stress, infection, the list goes on but these are the main effectors. To achieve homeostasis, there needs to be a balance of good gut flora to bad. "Lactobacilli and Bifidobacteria, should predominate, presenting a barrier to invading organisms. Around 85% of the intestinal microflora in a healthy person should be good bacteria and 15% bad bacteria. The greater the imbalance, the greater the symptoms" Custom probiotics
You'll notice my above links, a fellow FPIES mom shared the link in her search for probiotics for her child. I typically don't quote websites that are also selling something and proceed with caution with their information (as I just need to re-research it to be sure it is medically sound information) but the above information is good information from their site, which I found easy to read through (although they are selling something and although it looks like a promising probiotic, as always check with the manufacturer for safe ingredients first!). The reason I have bookmarked their site is because they have a GREAT illustration of the intestines and it's tie to the immune system. So, if you'd like a look at that- visit this site and scroll down the page a few paragraphs.
It shows the villi and crypt of the intestines. The villi and crypt can be damaged in severe/chronic FPIES inflammation, therefore causing further cascading problems of illness from increased intestinal permeability (leaky gut) due to the inflammation opening "holes" in the intestine, thereby causing further damage, deficiencies and mostly allergies/intolerance's as proteins "leak" into the blood stream (via the lymph). Villi damage can also lead to nutritional deficiencies and weight loss as this is where nutrients are picked up from the broken down food molecules.
Intestinal flora forms a natural barrier to pathogens and also work together with the GALT (intestinal immune system within the GI tract made of lymphoid cells), comprised of Peyer's Patches (which facilitate the beginning of the immune response in the GI tract), Paneth cells (control microbes) and dendritic cells (micro flora communication). When the antigenic presenting dendritic cell (where micro flora have their role) activates the lymphocytes, it leaves the mucousa via the lymph and enters the blood stream via the thoracic duct. The activated lymphocytes then travel back to the gut and can colonize in the same mucousa or other mucousal sites along the GI tract. This is where the Tmemory cells are then stored and activated upon re-exposure to trigger (antigen) proteins (and likely why the re-exposure can be a more intense response because of the recognition from previous activated lymphocytes.
Probiotics can help manage that balance once it has been established (past infancy). Probiotics have antimicrobial effects (pathogens, toxins), maintain intestinal epithelium (barrier), and regulate the immune system via the GALT (inflammatory responses to allergens and other inflammatory substances).
It is clear the balance (homeostasis) of micro flora in the gastrointestinal tract is important to immune responses.
Sunday, March 13, 2011
Gut Micro flora and The Immune System
One of the roles of gut micro flora is to help regulate the immune system. I've done a few posts on probiotics and the pros of probiotics. But probiotics aren't residential gut flora- they are visitors to help that flora flourish, and even heal a damaged or immature gastrointestinal system.
We are most familiar with probiotics being responsible for changing the composition (numbers and density) of the resident microflora and thereby restore gut damage but another critical role is in regulation of the immune system.
"As such, your gastrointestinal tract is lined with its own set of immune cells to help prevent these harmful substances from gaining entry to your body. These immune cells are called the gut-associated lymphoid tissue (GALT). The GALT is the largest mass of immune tissue (lymphoid tissue) in the human body and as such is an important element of the body's immune system. You may be familiar with other lymphoid tissues such as the tonsils and spleen. The tonsils are also located in an area where you are commonly exposed to harmful substances (the throat)."- Allison Tannis, Probiotic Rescue: How You can use Probiotics to Fight Cholesterol, Cancer, Superbugs, Digestive Complaints and More.
Multiple studies have shown Lactobacillus strains promote Th3 (oral tolerance) immune responses.
This article shows that "overall pieces of evidence are beginning to accumulate that support a model whereby disruption of the micobiota also disrupts oral tolerance, potentially by interfering with the dendritic cells (DC) that promote allergen specific regulatory Tcell responses".
The mucosal barrier function of the gut depends on the establishment of of the microflora (at birth). "The immature gut barrier may lead to aberrant antigen transfer and immune responses, thus explaining increased vulnerability to breakdown of oral tolerance....In particular, intestinal colonization acts as an important antigenic stimulus for the maturation of the gut-associated lymphoid tissue. The demonstration that the gut microflora are an important constituent of the intestine's nonimmunologic and immunologic barrier has brought about the concept of probiotic therapy: therapeutic application of consumption of cultures of potentially beneficial bacteria.....Moreover, the intestinal microflora contribute to the processing of food antigens in the gut, and probiotics have been shown to modify the structure of potentially harmful antigens and reduce their immunogenicity in vitro and in vivo, together with a potential to dampen hypersensitivity reactions . These effects are seen as a significant improvement in the clinical course of atopic dermatitis (eczema) in infants given probiotic-supplemented elimination diet, and in parallel, markers of intestinal and systemic allergic inflammation decreased significantly."Functional Foods and Probiotics.
As I read through several articles in my research on the role of probiotics and established micro flora, I come across language that suggests that with impaired immunity regulations, the body isn't just attacking food proteins but the established micro flora as well. This article on Early Nutrition is an insightful read for this concept.
Within much of the research is reminders that there is so much more to be researched in the field of microbiota and probiotic therapy (effects and limitations of). Initial research has shown addition of beneficial strains of lactobacillus and bifida bacteria to be a helpful component in the treatment of inflammatory disorders.
We are most familiar with probiotics being responsible for changing the composition (numbers and density) of the resident microflora and thereby restore gut damage but another critical role is in regulation of the immune system.
"As such, your gastrointestinal tract is lined with its own set of immune cells to help prevent these harmful substances from gaining entry to your body. These immune cells are called the gut-associated lymphoid tissue (GALT). The GALT is the largest mass of immune tissue (lymphoid tissue) in the human body and as such is an important element of the body's immune system. You may be familiar with other lymphoid tissues such as the tonsils and spleen. The tonsils are also located in an area where you are commonly exposed to harmful substances (the throat)."- Allison Tannis, Probiotic Rescue: How You can use Probiotics to Fight Cholesterol, Cancer, Superbugs, Digestive Complaints and More.
Multiple studies have shown Lactobacillus strains promote Th3 (oral tolerance) immune responses.
This article shows that "overall pieces of evidence are beginning to accumulate that support a model whereby disruption of the micobiota also disrupts oral tolerance, potentially by interfering with the dendritic cells (DC) that promote allergen specific regulatory Tcell responses".
The mucosal barrier function of the gut depends on the establishment of of the microflora (at birth). "The immature gut barrier may lead to aberrant antigen transfer and immune responses, thus explaining increased vulnerability to breakdown of oral tolerance....In particular, intestinal colonization acts as an important antigenic stimulus for the maturation of the gut-associated lymphoid tissue. The demonstration that the gut microflora are an important constituent of the intestine's nonimmunologic and immunologic barrier has brought about the concept of probiotic therapy: therapeutic application of consumption of cultures of potentially beneficial bacteria.....Moreover, the intestinal microflora contribute to the processing of food antigens in the gut, and probiotics have been shown to modify the structure of potentially harmful antigens and reduce their immunogenicity in vitro and in vivo, together with a potential to dampen hypersensitivity reactions . These effects are seen as a significant improvement in the clinical course of atopic dermatitis (eczema) in infants given probiotic-supplemented elimination diet, and in parallel, markers of intestinal and systemic allergic inflammation decreased significantly."Functional Foods and Probiotics.
As I read through several articles in my research on the role of probiotics and established micro flora, I come across language that suggests that with impaired immunity regulations, the body isn't just attacking food proteins but the established micro flora as well. This article on Early Nutrition is an insightful read for this concept.
Within much of the research is reminders that there is so much more to be researched in the field of microbiota and probiotic therapy (effects and limitations of). Initial research has shown addition of beneficial strains of lactobacillus and bifida bacteria to be a helpful component in the treatment of inflammatory disorders.
Tuesday, March 8, 2011
FPIES and IBD
Probiotics are microbes, taken in that reside along the established micro flora of the gut. Micro flora (hundreds of gut microbes) is established at birth. It changes very little over the course of your lifetime, it is unique to you. Antibiotics, allergies, prebiotics and probiotics all will affect this established micro flora (it's numbers and strength so to speak) while passing through, but the base (established at birth) remains the same. Little man's micro flora was already disrupted before he got a chance to fully establish it. He had antibiotics at birth due to his quick delivery as a precautionary against my GBS+ status. That coupled with my IBS (and poor gut micro flora), his genetics with atopic (allergic) background, made him susceptible to increased intestinal permeability....only I didn't know how much the risk was at the time....and we stumbled around in the dark for months.
Once he started reacting, and he would go from constipation to diarrhea and back again, and he had so-so much trapped gas....my instincts told me he needed a probiotic. I began taking larger doses for myself, so it would be passed through my milk to him; I also took enzymes. I felt like these helped, we noticed differences, they bought us time anyway. Until we trialed the formula, and started to introduce foods....
Once we found out he had "non specific" intestinal inflammation on his first scope at 8mo.old, my instinct was to get him on a probiotic and a good source of Omega 3 fatty acids. He failed both, even though I thought I was getting "clean" and "hypoallergenic" sources. Looking back with FPIES eyes, I now know better (added ingredients and cultured on dairy, etc). But then, I have been too nervous for setbacks to trial any again. I didn't want to set him back trialing a probiotic when what he needed was food.
Dr.J has helped us see that we did in fact need to take that step back....correcting the gut flora first- the body will continue to attack itself basically if we don't first re-align it's inhabitants (gut flora). Dr.J has studied the effects of probiotics on kids with non-IgE food allergies and studied probiotics in general. She was excited to tell me that just in recent years has there been more information about the specific effects of specific strains of probiotics- that each strain has their role. More research is needed to fully understand but having more to work gives her a base to go from. With Little Man reacting to so many things, she wanted us to start very slowly, low doses with low strains. We started with a double lactobacillus strain in a low "sprinkling" dose. And we got to see why starting low was essential as he showed signs of adjusting or die-off for the first week; but then it all just "evened-out" and he has been doing really well with them....he even likes the taste!!
Once he evened out with tolerating the dose, I started to notice he was maybe "peaking" on that morning dose- he was doing really, really well all day but was starting to melt down in the evenings and had disturbed sleep at night (but then was napping more during the day)....it seemed if he was within the "window" of the probiotic, his body was relaxed- he could sleep and eat, and play "normally", but that once that wore off- he reverted back to how he has been for months-- which isn't overtly off baseline but not as good as he is when "covered" by the probiotic. So, I began to wonder if I should start a 2x/day dose- a morning and an evening. I started this on Sunday and he did beautifully with it and continues to show signs of improvement (able to hold his baseline all day); but if we get behind or miss a dose- we start to see whiny behavior, pale look with bags, and more flat affect (nothing extreme but a noticeable difference). On the probiotic, he is running, playing, giggling, learning new words, eating full bottles, sleeping well (falling asleep on his own), pink cheeks and vibrant color eyes. There is a difference, and I am a little amazed at how much this small change can be making such a big impact on his demeanor. And it makes me curious as to how and why....
I sent Dr.J an e-mail to inquire her insights on it. She relays how much it is individualized and how we can learn a lot from the bodies response to a probiotic. She agrees to try twice daily doses, or try increasing his once daily dose- or both...experiment to see where he responds best (now that we know what his responses to the probiotic looks like). She also relayed that his body showing good response to the bigger strains could show that he has inflammation throughout- small and large intestines (from poor gut flora- an underlying inflammation from the poor numbers of good gut flora- essentially his gut is attacking itself, or not able to properly restore and rebuild itself. It makes a lot of sense and I can see what she means about being able to tell what is going on in the gut by the effects of a probiotic. She relates that it is similar to what happens with people with IBD (whose body can attack itself regardless of what foods are eaten).
Each day I learn more, we take a step, we watch symptoms and process through what is happening and move to the next step. Wait, don't look now but are we taking steps forward???
The next days will be spent working out his dosage and timing of dose with the current lactobaccillus strain. The next step is to add a bifidia strain, and watch and learn how his body responds to that. We also will be finding out his tests results within the next 2 weeks. I will be posting more about what those results will be showing in an upcoming post, as well as posting his results when we find them out! Stay tuned!
Once he started reacting, and he would go from constipation to diarrhea and back again, and he had so-so much trapped gas....my instincts told me he needed a probiotic. I began taking larger doses for myself, so it would be passed through my milk to him; I also took enzymes. I felt like these helped, we noticed differences, they bought us time anyway. Until we trialed the formula, and started to introduce foods....
Once we found out he had "non specific" intestinal inflammation on his first scope at 8mo.old, my instinct was to get him on a probiotic and a good source of Omega 3 fatty acids. He failed both, even though I thought I was getting "clean" and "hypoallergenic" sources. Looking back with FPIES eyes, I now know better (added ingredients and cultured on dairy, etc). But then, I have been too nervous for setbacks to trial any again. I didn't want to set him back trialing a probiotic when what he needed was food.
Dr.J has helped us see that we did in fact need to take that step back....correcting the gut flora first- the body will continue to attack itself basically if we don't first re-align it's inhabitants (gut flora). Dr.J has studied the effects of probiotics on kids with non-IgE food allergies and studied probiotics in general. She was excited to tell me that just in recent years has there been more information about the specific effects of specific strains of probiotics- that each strain has their role. More research is needed to fully understand but having more to work gives her a base to go from. With Little Man reacting to so many things, she wanted us to start very slowly, low doses with low strains. We started with a double lactobacillus strain in a low "sprinkling" dose. And we got to see why starting low was essential as he showed signs of adjusting or die-off for the first week; but then it all just "evened-out" and he has been doing really well with them....he even likes the taste!!
Once he evened out with tolerating the dose, I started to notice he was maybe "peaking" on that morning dose- he was doing really, really well all day but was starting to melt down in the evenings and had disturbed sleep at night (but then was napping more during the day)....it seemed if he was within the "window" of the probiotic, his body was relaxed- he could sleep and eat, and play "normally", but that once that wore off- he reverted back to how he has been for months-- which isn't overtly off baseline but not as good as he is when "covered" by the probiotic. So, I began to wonder if I should start a 2x/day dose- a morning and an evening. I started this on Sunday and he did beautifully with it and continues to show signs of improvement (able to hold his baseline all day); but if we get behind or miss a dose- we start to see whiny behavior, pale look with bags, and more flat affect (nothing extreme but a noticeable difference). On the probiotic, he is running, playing, giggling, learning new words, eating full bottles, sleeping well (falling asleep on his own), pink cheeks and vibrant color eyes. There is a difference, and I am a little amazed at how much this small change can be making such a big impact on his demeanor. And it makes me curious as to how and why....
I sent Dr.J an e-mail to inquire her insights on it. She relays how much it is individualized and how we can learn a lot from the bodies response to a probiotic. She agrees to try twice daily doses, or try increasing his once daily dose- or both...experiment to see where he responds best (now that we know what his responses to the probiotic looks like). She also relayed that his body showing good response to the bigger strains could show that he has inflammation throughout- small and large intestines (from poor gut flora- an underlying inflammation from the poor numbers of good gut flora- essentially his gut is attacking itself, or not able to properly restore and rebuild itself. It makes a lot of sense and I can see what she means about being able to tell what is going on in the gut by the effects of a probiotic. She relates that it is similar to what happens with people with IBD (whose body can attack itself regardless of what foods are eaten).
Each day I learn more, we take a step, we watch symptoms and process through what is happening and move to the next step. Wait, don't look now but are we taking steps forward???
The next days will be spent working out his dosage and timing of dose with the current lactobaccillus strain. The next step is to add a bifidia strain, and watch and learn how his body responds to that. We also will be finding out his tests results within the next 2 weeks. I will be posting more about what those results will be showing in an upcoming post, as well as posting his results when we find them out! Stay tuned!
Saturday, February 12, 2011
Nutrigenomics...we really are what we eat.
As I sort through some articles I have been meaning to read, as well as online resources about research Dr.J has done to prepare for our upcoming appointment. I come across a home study guide I purchased at a seminar a year or two ago. It is called "Nutrigenomics: The Scientific Link Between Genetics and Nutrition". Yes, I've been meaning to complete this for awhile now, maybe now is the time. The home study course is put out by the Institute for Natural Resources and I am unable to locate an online version. But I did find this link that outlines much of the same information: Nutrigenomics
I wanted to share a few key thoughts from the INR home study course as I thought was interesting and helped "kick start" some of my direction in readings this afternoon. I also wonder if it isn't part of what Dr.J's research is coined.
I feel like I understand FPIES, I understand leaky gut/dybiosis (not only from my own research but mainly from living it everyday); but I'm missing something and that something is what I want to discuss with Dr.J....but I need to organize my thoughts first (maybe I'll get my answers in my own readings!).
The article begings with a great introduction essentially introducing you to the world of nutrigenomics...did you ever wonder what it would be like if we knew what we could and couldn't eat from the day we are born?....or if we knew what we were predisposed to and could alter our eating habits specifically for those diseases. (Diabetes, heart disease, Cronhs, Cancer). We may be able to with combining the worlds of Nutrition and Genomics. "Nutrigenomics tries to determine the influence of common dietary ingredients on the genome and relate the resulting phenotypes to differences in the cellular and/or genetic response of biologic systems. It analyzes the response of whole systems to nutrients and studies how food or food ingredients affect the metabolic pathways and alter gene expression".
A major project took place from 1990-2003: The Human Genome Project yielded this field of nutrigenomics. "Information from the human genome is making it possible to identify the genetic factors that influence a person's susceptibility to disease associated with diet.....In dietary related disorders, these interventions will involve dietary changes or the inclusions of functional food components, or both."
"Genes evolve in response to many types of environmental stimuli including nutrition." (genetics loads the gun, environment pulls the trigger). There are genetic markers for many chronic diseases, one has not been found yet for FPIES but it is clear from the research thus far that there is a genetic component. But what component turns it on? It is the maternal diet? Is it the infants diet? Is it the gut flora? It is antibiotic use? Dr.J's research shows that it is an abormal immune response and that there is a connection to gut flora (more on that later, oh- so much more on that later).
The tools used in Nutrigenomics are multidisplinary: Transcriptomics, Proteomics, Metabolomics, and Bioinformatics.
"Transcriptomics measures the level of expression of all or a selected subset of genes based on the amount of RNA in a sample, using mircoarray analysis to see how genes react to change. Nutrients can have a direct effect and interact with transription factors to regulate gene expression."
"Proteomics is the study of proteins that can be expressed within an organism. Proteomics focuses on the analysis of proteins and their interactions with other biologic molecules>'
"Metabolomics is the study of the complete set of metabolites that an organism produces. Genes are turned on and off according to metabolic signals that the nucleus receives from internal factors such as horomones and external factors such as nutrients."
"Bioinformatics handle the vast amount of data produced. It is now possible to predict gene function and identify the regulatory regions in the genome that influence gene expression".
Understanding nutrigenomics requires an understanding of the cell. DNA is the genetic material of the cell, it is arranged in untis called chromosomes, of which we have 23 and genes are spread throughout these chromosomes.
The study of nutrigenomics also requires knowledge of polymorphisms. "A polymorphism is the quality of existing in several different forms. These differences can result from genetic predisposition, environmental influences, or a combination of both.....Several genetic polymorphisms important to nutrition have been identified." These can be catagorized into 2 catagories:
1). Monogenic Diseases, in which a disease arises from on abnormal gene, these can range from lactose intolerance to PKU or galactosemia.
2). Chronic Diseases such as cardiovascular disease, diabetes, cancer, obesity, and inflammatory bowel disease.
There is much research being done in all these disease states, my research goes toward Inflammatory Bowel Diseases such as Crohns as FPIES shares commonality's of immune regulators and inflammatory responses. (again, this will be covered more in another post but does involve what Dr.J is researching).
The course goes on to discuss effects of micro and macro nutrients at the molecular level as well as the current dietary inteventions and guidelines for disease. This is my job description in a nutshell so I skimmed over this! But essentially, nutrients have many roles in the body from influencing metabolism and physiology at the molecular level to fuel and co-factor roles. The role of foods from macronutrients (carbohydrates, fats, proteins) to micronutrients (vitamins, minerals) play is complex and closely intertwined. "Eat a balanced diet" is always good advice! It does go on to discuss Dietary Inteventions and Guidelines and how with the possibilities of nutrigenomics, one could "tailor" their diet to offer precise dietary advice for specific genetic testing results. Currently, genetic predisposition with generalized healthy recommendations are what we work with but this can be restricting if there are multiple genes interacting with each other coupled with environmental variables that contribute to the diseases.
It continues to describe how bioactive food components "alter gene expression in a host of cellular events".
The paragraph within the functional food chapter was of interest to me, and I think will be to other FPIES families: "One of the targets of functional foods will be the gut, which acts as an interface between ingested food and the body. In addition, the gut serves as the barrier to harmful substances entering the circulation. Ingestion of functional foods will be beneficial to the microflora of the gut. These bacteria, in addition to their protective function, generate energy by digesting fermentable carbohydrates. The microflora of the large intestine is aquired shortly after birth, and its composition is dependent on diet. We all have our own specific microflora. Certain species of gut microflora can help reduce the risk of gastrointestinal infections, constipation, irritable bowel syndrome, inflammatory bowel diseases, and possibly colorectal cancer. Therefore, intestinal microflora could be a part of a personalized nutritional program." (which is what I've been told is part of Dr.J's program in her research study). It goes on to describe probiotics and prebiotics. "Probiotics and prebiotics could be developed to alter the microflora of the gut....a prebiotic is a non-digestible food ingredient that beneficially affects the host by selectively stimulating the growth and/or modifying the metabolic activity of one or a limited number of bacterial species in the colon that have the potential to improve host health....to be classified as a prebiotic, a food must not be absorbed in the upper part of the gastrointestinal tract and must stimulate growth of the beneficial microflora that is resident in the colon. Prebiotics also have additional benefits on the immnue system and may inhibit the formation of adenomas and carcinomas".
Little Mans main diet is a functional food: Hemp. And we are working towards including good amounts of coconut, which is both a functional food and a prebiotic, in his diet.
The conclusion is "Genes are turned on and off by what we eat". "The interaction between nutrition and the human genome determines gene expression and the metabolic response".
So, we really are what we eat....
I wanted to share a few key thoughts from the INR home study course as I thought was interesting and helped "kick start" some of my direction in readings this afternoon. I also wonder if it isn't part of what Dr.J's research is coined.
I feel like I understand FPIES, I understand leaky gut/dybiosis (not only from my own research but mainly from living it everyday); but I'm missing something and that something is what I want to discuss with Dr.J....but I need to organize my thoughts first (maybe I'll get my answers in my own readings!).
The article begings with a great introduction essentially introducing you to the world of nutrigenomics...did you ever wonder what it would be like if we knew what we could and couldn't eat from the day we are born?....or if we knew what we were predisposed to and could alter our eating habits specifically for those diseases. (Diabetes, heart disease, Cronhs, Cancer). We may be able to with combining the worlds of Nutrition and Genomics. "Nutrigenomics tries to determine the influence of common dietary ingredients on the genome and relate the resulting phenotypes to differences in the cellular and/or genetic response of biologic systems. It analyzes the response of whole systems to nutrients and studies how food or food ingredients affect the metabolic pathways and alter gene expression".
A major project took place from 1990-2003: The Human Genome Project yielded this field of nutrigenomics. "Information from the human genome is making it possible to identify the genetic factors that influence a person's susceptibility to disease associated with diet.....In dietary related disorders, these interventions will involve dietary changes or the inclusions of functional food components, or both."
"Genes evolve in response to many types of environmental stimuli including nutrition." (genetics loads the gun, environment pulls the trigger). There are genetic markers for many chronic diseases, one has not been found yet for FPIES but it is clear from the research thus far that there is a genetic component. But what component turns it on? It is the maternal diet? Is it the infants diet? Is it the gut flora? It is antibiotic use? Dr.J's research shows that it is an abormal immune response and that there is a connection to gut flora (more on that later, oh- so much more on that later).
The tools used in Nutrigenomics are multidisplinary: Transcriptomics, Proteomics, Metabolomics, and Bioinformatics.
"Transcriptomics measures the level of expression of all or a selected subset of genes based on the amount of RNA in a sample, using mircoarray analysis to see how genes react to change. Nutrients can have a direct effect and interact with transription factors to regulate gene expression."
"Proteomics is the study of proteins that can be expressed within an organism. Proteomics focuses on the analysis of proteins and their interactions with other biologic molecules>'
"Metabolomics is the study of the complete set of metabolites that an organism produces. Genes are turned on and off according to metabolic signals that the nucleus receives from internal factors such as horomones and external factors such as nutrients."
"Bioinformatics handle the vast amount of data produced. It is now possible to predict gene function and identify the regulatory regions in the genome that influence gene expression".
Understanding nutrigenomics requires an understanding of the cell. DNA is the genetic material of the cell, it is arranged in untis called chromosomes, of which we have 23 and genes are spread throughout these chromosomes.
The study of nutrigenomics also requires knowledge of polymorphisms. "A polymorphism is the quality of existing in several different forms. These differences can result from genetic predisposition, environmental influences, or a combination of both.....Several genetic polymorphisms important to nutrition have been identified." These can be catagorized into 2 catagories:
1). Monogenic Diseases, in which a disease arises from on abnormal gene, these can range from lactose intolerance to PKU or galactosemia.
2). Chronic Diseases such as cardiovascular disease, diabetes, cancer, obesity, and inflammatory bowel disease.
There is much research being done in all these disease states, my research goes toward Inflammatory Bowel Diseases such as Crohns as FPIES shares commonality's of immune regulators and inflammatory responses. (again, this will be covered more in another post but does involve what Dr.J is researching).
The course goes on to discuss effects of micro and macro nutrients at the molecular level as well as the current dietary inteventions and guidelines for disease. This is my job description in a nutshell so I skimmed over this! But essentially, nutrients have many roles in the body from influencing metabolism and physiology at the molecular level to fuel and co-factor roles. The role of foods from macronutrients (carbohydrates, fats, proteins) to micronutrients (vitamins, minerals) play is complex and closely intertwined. "Eat a balanced diet" is always good advice! It does go on to discuss Dietary Inteventions and Guidelines and how with the possibilities of nutrigenomics, one could "tailor" their diet to offer precise dietary advice for specific genetic testing results. Currently, genetic predisposition with generalized healthy recommendations are what we work with but this can be restricting if there are multiple genes interacting with each other coupled with environmental variables that contribute to the diseases.
It continues to describe how bioactive food components "alter gene expression in a host of cellular events".
The paragraph within the functional food chapter was of interest to me, and I think will be to other FPIES families: "One of the targets of functional foods will be the gut, which acts as an interface between ingested food and the body. In addition, the gut serves as the barrier to harmful substances entering the circulation. Ingestion of functional foods will be beneficial to the microflora of the gut. These bacteria, in addition to their protective function, generate energy by digesting fermentable carbohydrates. The microflora of the large intestine is aquired shortly after birth, and its composition is dependent on diet. We all have our own specific microflora. Certain species of gut microflora can help reduce the risk of gastrointestinal infections, constipation, irritable bowel syndrome, inflammatory bowel diseases, and possibly colorectal cancer. Therefore, intestinal microflora could be a part of a personalized nutritional program." (which is what I've been told is part of Dr.J's program in her research study). It goes on to describe probiotics and prebiotics. "Probiotics and prebiotics could be developed to alter the microflora of the gut....a prebiotic is a non-digestible food ingredient that beneficially affects the host by selectively stimulating the growth and/or modifying the metabolic activity of one or a limited number of bacterial species in the colon that have the potential to improve host health....to be classified as a prebiotic, a food must not be absorbed in the upper part of the gastrointestinal tract and must stimulate growth of the beneficial microflora that is resident in the colon. Prebiotics also have additional benefits on the immnue system and may inhibit the formation of adenomas and carcinomas".
Little Mans main diet is a functional food: Hemp. And we are working towards including good amounts of coconut, which is both a functional food and a prebiotic, in his diet.
The conclusion is "Genes are turned on and off by what we eat". "The interaction between nutrition and the human genome determines gene expression and the metabolic response".
So, we really are what we eat....
Friday, January 21, 2011
Stuck on the wheel....
That is where we were a year ago. But today, we have made many advances in recent months and yet- we can't seem to stay off this wheel. Trial followed by fail, followed by inflammation- is it healing, is it not healing? What is going on in there?
We had plans for next steps, but we're stuck. How long will we stay stuck? Even with the best laid plans, FPIES is in complete control and it's not giving an inch.
It is understood that when a trigger food is ingested, the reaction is a t-cell response; where the body attacks the food as if it was a toxin in the body. This results in an acute and severe gut inflammation. We know Little Man had complete gut healing with TPN, a mere week before we trialed the multivitamin, we had confirmation of that from the upper endoscopy he had done. But now, we are not sure how much inflammation he has from the vitamin fail (thought to be from the corn starch in the vitamin), and an even bigger question- how long does it take to heal?
We continue to watch for the signs of decreased inflammation, a weight gain would be a a good sign. We don't have that, despite eating 1100+calories/day. Sleeping for more than 2-3hours at a time would be good. We certainly don't have that. I feel like I have a newborn baby, eats every 2hrs all day long and then up 3-4times a night. I'm lucky if he eats and goes right back to sleep. We are looking into other reasons why he is not getting restful sleep though- more on our upcoming Sleep Study later.
For now, we go back to the GI- we have agreed he needs another scope. We need to know why we are stuck on this wheel- is there something more than inflammation going on and how bad is it? We go in Monday morning for that. We will also get a flex.sigmoidoscopy as well, to check for sources of bleeding as his diapers show signs of blood tinged stools again (along with the flecks of blood thought to be from a fissure).
In the words of another FPIES mom this week: "Where do I send in my resignation papers?" I want to be done with FPIES. Or, at least- if I can't resign...where can I get a vacation? Not even a vacation from little man- can I just get a break from his FPIES? It's been a long week- as the stress of a food trial and fail brings on is both emotional and physical. And I've felt deflated more than once. On my knees....asking for help from Above....asking for the continued strength, the direction to go in next, and most of all- to be a better mom to all my little men. FPIES has grabbed such a strong hold on our lives for so long, we struggle everyday still. It is less and less these days than it was a year ago but we still look for new ways to cope with it all. New challenges that keep coming our way and more and more on this wheel. We were just ready for a break. Will that come soon?
The family that prays together, stays together....we will get through this....we thank all our family, friends and supporters for all the prayers over the past year. We feel the strength of the prayers offered up for us- we have been held up by your prayers....bless you.
Saturday, January 15, 2011
Squirms in the night....
A possessed monkey another mom describes it as, I giggle. A squirmy caterpillar? How do you describe this dance they do? This, my-tummy-hurts-and-I-have-gas, I'm awake-but-don't-want-to-be dance in their sleep.
A few nights ago- just fresh on the excitement that Little Man was eating his Merry Muffins; we had a rough night of no sleep, coupled with gas? attacks. He was just so uncomfortable. But it wasn't constant, it wasn't inconsolable- he would console, fall into what seemed like a relaxing deep sleep; only to be awoken by a waxing/waning, what I can only think to be gas pain. It wasn't reflux-y pain, he wasn't arching and it was lower. He was thrashing and kicking his legs...and passing gas.
We make it through the night, and he is a happy boy in the morning. What is this about? These are his safe foods, safe ingredients to make a safe food- muffins. What is going on? Are his safe foods not safe? Is his inflammation hurting him? How much inflammation does he have, from the fermented corn starch (tested negative for detectable proteins but apparently still has trace or cross contamination of corn) in that vitamin trial.
Is the inflammation making it difficult for his body to breakdown/process/digest even his safe foods? Maybe.
I post the question for feedback on the active FPIES support group and am reminded of the other little one's that experience similar "threshold" to foods - grains, vegetables, fruits, and sugars. Daily servings need to be monitored closely as to not cross over a threshold of tolerance (for unknown reasons, not FPIES triggers- simple digestion tolerance)- carefully teaching the body of the safe food. Also, other mom's express success in pseudo-rotation type diets. I have had this thought about Little Man for some time....that even when we do get "passes" for a tiny menu- we will have to watch his menu closely as his body appears to be so sensitive to subtle changes.
Why does this happen is my pondering question. Pondering....pondering....pondering....because if I can figure out why it is happening, then I can help him more- right? I hope so.
I wonder if it is similar to a flare in Chrons or colitis, a flare of intestinal inflammation so bad it causes a bowel obstruction. The treatment for this is often bowel rest and a bland/low-residue type diet. Millet and peaches are safe-nonFPIES trigger foods, but if he has inflammation - his body may be less able to digest the sugars and proteins in these foods. We will have to limit his consumption for now, play around with recipe modifications, and monitor for signs of healing from the recent fail.
The next 2 days, with scaled back amount of muffins- we have had better sleep. Still waking up, but to eat and then goes back to sleep (mostly)...
For now, Little man continues to take his hemp milk formula very well - meeting his caloric needs daily. Weight gain should follow.....
A few nights ago- just fresh on the excitement that Little Man was eating his Merry Muffins; we had a rough night of no sleep, coupled with gas? attacks. He was just so uncomfortable. But it wasn't constant, it wasn't inconsolable- he would console, fall into what seemed like a relaxing deep sleep; only to be awoken by a waxing/waning, what I can only think to be gas pain. It wasn't reflux-y pain, he wasn't arching and it was lower. He was thrashing and kicking his legs...and passing gas.
We make it through the night, and he is a happy boy in the morning. What is this about? These are his safe foods, safe ingredients to make a safe food- muffins. What is going on? Are his safe foods not safe? Is his inflammation hurting him? How much inflammation does he have, from the fermented corn starch (tested negative for detectable proteins but apparently still has trace or cross contamination of corn) in that vitamin trial.
Is the inflammation making it difficult for his body to breakdown/process/digest even his safe foods? Maybe.
I post the question for feedback on the active FPIES support group and am reminded of the other little one's that experience similar "threshold" to foods - grains, vegetables, fruits, and sugars. Daily servings need to be monitored closely as to not cross over a threshold of tolerance (for unknown reasons, not FPIES triggers- simple digestion tolerance)- carefully teaching the body of the safe food. Also, other mom's express success in pseudo-rotation type diets. I have had this thought about Little Man for some time....that even when we do get "passes" for a tiny menu- we will have to watch his menu closely as his body appears to be so sensitive to subtle changes.
Why does this happen is my pondering question. Pondering....pondering....pondering....because if I can figure out why it is happening, then I can help him more- right? I hope so.
I wonder if it is similar to a flare in Chrons or colitis, a flare of intestinal inflammation so bad it causes a bowel obstruction. The treatment for this is often bowel rest and a bland/low-residue type diet. Millet and peaches are safe-nonFPIES trigger foods, but if he has inflammation - his body may be less able to digest the sugars and proteins in these foods. We will have to limit his consumption for now, play around with recipe modifications, and monitor for signs of healing from the recent fail.
The next 2 days, with scaled back amount of muffins- we have had better sleep. Still waking up, but to eat and then goes back to sleep (mostly)...
For now, Little man continues to take his hemp milk formula very well - meeting his caloric needs daily. Weight gain should follow.....
Wednesday, December 29, 2010
Biopsy Results!
This week we found out the biopsy results, and confirmation of true gut healing for Little Man!! We are so excited at this prospect of a "reset" button on the last many months of trying to play catch up since corn fail (and before).
Inflammation healed, villous atrophy gone. Christmas wish (and many months of prayers), answered.
We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate. The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing. He needs a multivitamin/mineral supplement. Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development. Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure). But, taking away the Neocate also took away our complete vitamins/minerals. This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu. So, next steps....to trial a vitamin. My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist. We found one that is worth trialing....to give him that complete component he needs in his diet.
But, trialing a vitamin with corn derivatives does not come without it's concerns. We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion. Not a lesson easily forgotten.....
But he needs the vitamin....
Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy. The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials. The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday.
But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!! We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.
Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well. In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap. He has learned other words such as chair, door, car, bye, thank you. He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are. He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time. His brothers visited when possible. We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it!
We are ready to close the door on 2010, and greet 2011 with optimism and health. May the New Year bring us (all FPIES families) a renewed FPIES path!
Inflammation healed, villous atrophy gone. Christmas wish (and many months of prayers), answered.
We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate. The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing. He needs a multivitamin/mineral supplement. Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development. Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure). But, taking away the Neocate also took away our complete vitamins/minerals. This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu. So, next steps....to trial a vitamin. My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist. We found one that is worth trialing....to give him that complete component he needs in his diet.
But, trialing a vitamin with corn derivatives does not come without it's concerns. We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion. Not a lesson easily forgotten.....
But he needs the vitamin....
Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy. The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials. The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday.
But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!! We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.
Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well. In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap. He has learned other words such as chair, door, car, bye, thank you. He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are. He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time. His brothers visited when possible. We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it!
We are ready to close the door on 2010, and greet 2011 with optimism and health. May the New Year bring us (all FPIES families) a renewed FPIES path!
Monday, November 22, 2010
Thankful for...
I am thankful for this little face. Little man has been recovering from recent "fails" and returning back to a baseline. His demeanor has been good, great. His activity level has been good. His pain has been minimal. His appetite has been good. Tomorrow we bring him in for a weight check to see if he is gaining (he should be - he's eating 1000 calories/day, so he is meeting his needs). But weight loss has always followed his reactions. Was soy a "reaction"? It wasn't an FPIES trigger but we still are not sure what the symptoms we saw were- if they were attributed to soy or to food dye. Whatever it was, it has done it's damage as Little Man's recent scope biopsy's have been coming back and are showing some villous atrophy, along with his inflammation that was visible on scope. The colon biopsy isn't back yet and that may tell more. More tests will need to be ran because we are not sure why there is this villous atrophy. We do know what it means, villous atrophy means malabsorption. Little man can not afford malabsorption of nutrients on his already restricted diet. We meet with the GI doctor tomorrow to discuss next steps.
More pieces to the puzzle...
Monday, August 30, 2010
Yogurt starter and a glimpse into reaction symptoms...
A few months back, I was always in search for ways to help heal my little man's gut. Even before coming to his FPIES diagnosis, I knew something was just not healthy with his gut mucosa.
I looked into many things that could help gut healing and inflammation in the body. I tried some Fish oil (Omega 3) supplements....unfortunately they were made from fish and he reacted to those with what looked like an IgE type reaction- spots around his mouth. I bought probiotics (http://www.giprohealth.com/giprostart.aspx) I bought the probiotic and the probiotic starter. I gave him a few days of the probiotic but he was getting tummy aches with this- we thought likely from the inulin (we were already suspecting a fructose intolerance). So, that was stopped as well. I didn't have any safe "milk" to make the yogurt with, with the probiotic starter but I gave it a try (to see if I could do it) with some coconut milk (in the hopes that one day he could tolerate coconut milk as many dairy intolerant kids can). I did not succeed and it never "set" and it tasted a bit like...well, vomit. So, in the trash it went. And in the fridge the probiotic starter stayed. Now with hemp milk safely in his diet, I remembered that I could probably use this to make him some yogurt from.
I successfully made Hemp milk yogurt last night! I gave it a chance to cool this morning and gave it to him with lunch today. It is fun to be finding "new" things from his safe ingredients to put in a bowl at the table so he can be sitting at the table with his brothers when they eat. It makes meal time much less stressful (although I still don't sit down).
I put some hemp milk yogurt in a bowl for him (he has his own bowls and spoons so when he sees me getting these out- he gets excited!). He took a lick and wasn't interested. I put his millet puffs (that we have been giving him for "fun" in a low-dose kind of trial way) on top of them in the bowl- he proceeded to pick off the millet puffs and eat them, while only taking tiny licks off his fingertips of the yogurt. Soon enough he was "all done".
Within 2 hrs, the hyperactivity started- he couldn't settle down for a nap, he wasn't eating very well and just kept fussing off and on. He has been teething this week (1yr. molars) so we have that wrapped up in things throughout the week- but that is usually a bit of fussiness while he grabs his cheeks and it is consolable and short-lived. I gave him some of his compounded ibuprofen. This seemed to help because within 20min he finally went to sleep. His nap was short and he woke up screaming- clinging to a stuffed lamb toy from his crib (not a good sign). He remained fussy and refused to eat. We took a short van ride (ok, ok- the other boys talked me into a McDonald's dinner because they were "starving" and knew my hands were going to be too full to prepare much). The van rides almost always calm him down, and he was better. He has been having mouth itching and his skin is mottled (again, more of his signs of his body reacting). He is starting to play well, so hoping it is working it's way through without much more increase in symptoms.
This picture is, of course- before the yogurt....happy Little Man that we've begun to see more and more of every day.....a "normal" 14mo. old little boy- playing, exploring, running, chasing brothers, playing jokes on brothers, giggles, hugs, kisses....we are establishing a baseline and it is a beautiful thing (what today's post was supposed to be about, maybe tomorrow)....
I looked into many things that could help gut healing and inflammation in the body. I tried some Fish oil (Omega 3) supplements....unfortunately they were made from fish and he reacted to those with what looked like an IgE type reaction- spots around his mouth. I bought probiotics (http://www.giprohealth.com/giprostart.aspx) I bought the probiotic and the probiotic starter. I gave him a few days of the probiotic but he was getting tummy aches with this- we thought likely from the inulin (we were already suspecting a fructose intolerance). So, that was stopped as well. I didn't have any safe "milk" to make the yogurt with, with the probiotic starter but I gave it a try (to see if I could do it) with some coconut milk (in the hopes that one day he could tolerate coconut milk as many dairy intolerant kids can). I did not succeed and it never "set" and it tasted a bit like...well, vomit. So, in the trash it went. And in the fridge the probiotic starter stayed. Now with hemp milk safely in his diet, I remembered that I could probably use this to make him some yogurt from.
I successfully made Hemp milk yogurt last night! I gave it a chance to cool this morning and gave it to him with lunch today. It is fun to be finding "new" things from his safe ingredients to put in a bowl at the table so he can be sitting at the table with his brothers when they eat. It makes meal time much less stressful (although I still don't sit down).
I put some hemp milk yogurt in a bowl for him (he has his own bowls and spoons so when he sees me getting these out- he gets excited!). He took a lick and wasn't interested. I put his millet puffs (that we have been giving him for "fun" in a low-dose kind of trial way) on top of them in the bowl- he proceeded to pick off the millet puffs and eat them, while only taking tiny licks off his fingertips of the yogurt. Soon enough he was "all done".
Within 2 hrs, the hyperactivity started- he couldn't settle down for a nap, he wasn't eating very well and just kept fussing off and on. He has been teething this week (1yr. molars) so we have that wrapped up in things throughout the week- but that is usually a bit of fussiness while he grabs his cheeks and it is consolable and short-lived. I gave him some of his compounded ibuprofen. This seemed to help because within 20min he finally went to sleep. His nap was short and he woke up screaming- clinging to a stuffed lamb toy from his crib (not a good sign). He remained fussy and refused to eat. We took a short van ride (ok, ok- the other boys talked me into a McDonald's dinner because they were "starving" and knew my hands were going to be too full to prepare much). The van rides almost always calm him down, and he was better. He has been having mouth itching and his skin is mottled (again, more of his signs of his body reacting). He is starting to play well, so hoping it is working it's way through without much more increase in symptoms.
This picture is, of course- before the yogurt....happy Little Man that we've begun to see more and more of every day.....a "normal" 14mo. old little boy- playing, exploring, running, chasing brothers, playing jokes on brothers, giggles, hugs, kisses....we are establishing a baseline and it is a beautiful thing (what today's post was supposed to be about, maybe tomorrow)....Sunday, July 25, 2010
So quiet....
at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...
Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.
Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.
Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.
Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.
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