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.   

The FPIES puzzle...more on probiotics....

We have been through 5 days of a small dosing of a probiotic.   We are starting small doses and simple strains, we will build from there.  

Little man is among the many FPIES children with a gut dysbiosis that is making their FPIES more complex: more intolerance's than tolerances, more symptoms than not, symptoms build on symptoms and the dysbiosis complicates itself. 

Before FPIES diagnosis, we were lost in a sea of murky waters of chronic symptoms - piling on top of each other and drowning us.    We could barely see straight, much less breath above water.    Once we finally found FPIES, we were able to slowly get ahold of not only his symptoms but his triggers.  Once we got ahold of his triggers, we were left with the dysbiosis in his gut....but not before the damage had been done to his gut.   Now, we have repaired that damage (with gut rest and IV nutrition), we are ready to begin healing his dysbiosis.   

We began the probiotic this week.  Simple strain.  We have noted varying degrees of symptoms on every day.  I have read information from other moms about the "die off" effect with treatments such as yeast protocols, even antibiotics, and probiotics.   The dysbiosis is disturbed and the body is reacting to that.  I recently got a book to review for further information, hoping for more light on our path....The Gut and Psychology Syndrome, referred to as GAPS.  The information presented in this book addresses the neurological effects of gut health and nutrition and has information applicable to the gut health of FPIES kids as well (much like Dr.J is researching the similarity's of the immune dysfunction of ASD kids and PI kids).  In this book, there is a chapter on probiotics.  It is a good chapter, and I jumped ahead to it today as my concern for Little Man's symptoms grow.   This is what she says about probiotic treatments: "...a good therapeutic strength will always produce a so-called "die off reaction".  What is it? As you introduce probiotic bacteria into a digestive system, they start destroying pathogenic bacteria, viruses, and fungi.  When these pathogens die they release toxins.....symptoms may temporarily get worse....may feel more tired than usual, generally "off color", or develop a skin rash. It is a temporary reaction and usually lasts from a few days to a few weeks in different individuals.  To make this reaction as mild as possible, build the dose of your probiotic slowly.  Start with a very small amount.  Observe for any "die off" symptoms.  If there are none, then increase the dose.  When you see a reaction, settle on this dose until the "die off" symptoms disappear.  Then increase the dose again....keep on increasing the dose until a therapeutic level is reached.   This period of building the dose can take from a few weeks to a few months in different patients.  It is very individual and depends on how much overgrowth of pathogenic microbes the person has in the gut."   She goes on to clarify that you should always work with a knowledgeable physician to find this therapeutic dose.  And also, once the therapeutic dose is achieved, that someone with a gut dysbiosis will need supplemental probiotics for life (whether in pill form or fermented foods) as the gut flora is established at birth and probiotics will not colonize this established resident gut flora, but will flourish alongside it to give the benefits of beneficial bacteria to control the pathogens and correct the dysbiosis. 

I am pulling pieces from Immunology, Allergy, Digestion, Gut-Brain connections....all add up to the pieces in this FPIES puzzle.  Dr.J and her research at the PCRCD is giving us some light into the puzzle - not only from her research but from her multiple articles written on the subjects of gut dysbiosis and Non-IgE food allergies.  But also, I am looking for, and finding pieces to the puzzle in other places too.  Every one's puzzle is unique to their own genetics, environment and nutrition. Every child has their own unique-ness in their own puzzle.   We need the base to the puzzle in order to even begin to solve it.   But what is that base?  What happens first?  The Immune dysfunction?  The Gut dysbiosis? The immune dysregulation from the gut dysbiosis?  The gut dysbiosis from the immune dysfunction?   Will we ever really know?