Tailored Nutrition for FPIES?

My brain isn't going to shut off until after I've visited with Dr.J....then I'm taking an FPIES vacation!! Well, not really as we know that isn't possible but....

After reading through some of Dr.J's research, and then the Nutrigenomic course.   My thoughts go back to where I was before these readings, before hearing of the promising links with Dr.J's research....that FPIES needs guidelines for food introductions/trials, with a solid understanding of why but then each child needs their own individualized introductions.  From the order of foods, to the days of trials, to the amount of the trial and how many foods you do in a set time period.   Is this the missing link?  A tailored nutrition program for food introductions and FPIES diet?  

Even from the beginning- doctors were trying to put Little Man in a box he didn't fit in....am I trying to do the same?   FPIES protocols have been developed but I also hear of mom's going "off the beaten path" and trying something new- and it works!  Or just adding to current protocols, and finding success.  The common thread is that everyone uses FPIES protocols as the base and adapts them to their child's needs, their lifestyle, their contributing complexities (genetic or environmental).   What will work for our Little Man? 

A few months ago, with thoughts of food trials whirling in my head, shortly after soy trial in which things seemed to go "ok" (some build symptoms but nothing major) for 3 days and then by day 4 everything fell apart and came crashing down around us.  A thought came to me that maybe we are looking at it from the wrong angle for Little Man.  Maybe he needs 3day trials, or 3 different foods at the same time? 

His soy fail symptoms were no doubt because of the large volumes we were giving him had something to do with how hard he crashed but his body wasn't tolerating it- would a long trial have made any difference?   But a pattern was noted, Little Man seems to do ok on a food for 3days (with other trials and before FPIES diagnosis), and then by the 4th day is when things start to cascade- is it build symptoms or yeast die off from gut microflora changes, or is it the body fighting to win the imbalance with the immune response?   What makes his body want to accept a food, seemingly have developments of oral tolerance, and then hit with the attack mechanisms?  Why the delay?  Why the build?   This is where our FPIES protocol needs to be adapted for our little man specific needs.....where nutrition meets immune response?....where nutrition meets genetics?.....click, click, click- I can't seem to make it all fit together....

Back to my thought a few months ago...I just kept thinking- what if we trialed something for 3 days and then switched it up?  Not giving his body the chance to build the intolerance mechanisms?   Or, what if we trialed 3 foods at the same time, 3 foods that would have different roles on gut response?  We didn't trial hemp, arrowroot or safflower oil...why did those work out?   Then again, tapioca was before arrowroot and that fail landed us in the hospital with a very sick little man with acidosis.

So, what do we risk?  We risk a reaction.   Well, we risk a reaction with every food trial.    What we really risk is a reaction and not knowing what from; but with a build reactor- we risk that anyway already.   We risk introducing foods and then having to take them away; but with Little man- he barely any foods anyway- so what do we have to lose?  He isn't gaining weight like he should be, he is missing micro nutrients, he begs for food....is this just my desperation talking?  

Right now, we are still trialing coconut.   We had a chicken ingestion...not intended but I didn't stop him either...bad, bad mommy but I wanted to see if he would actually put it in his mouth or chew it, he did - we regretted it.   The chicken had seasoning on it that was corn derived.  He didn't directly eat the seasoning and really barely directly ate the chicken but he suffered for it.   Not a full blown reaction, but enough for him to associate what he had eaten the day before with the pain and symptoms that followed.  He stopped accepting the newly trialing coconut.   Even stopped eating for a day.   Restless sleep, wide awake sleep disturbance, acidic poop, diaper rash, rosy cheeks, ongoing fussiness, pallor....and he stopped eating.  Stopped trusting food, even his formula (which most often he will consume more of when his tummy is hurting).  So, was it the seasoned chicken (crock pot chicken sitting in chicken broth with seasoning salt on it- he got an inside piece, reached for it and grabbed it while I made dinner for his brothers) or was it a build from the coconut?  We had done 3 days of coconut and then stopped for a day, this was the day of reintroduction, had planned to wait until the next morning but had to distract him from taking away the chicken (he wanted to eat more, but even knew he couldn't- put his hand over the plate of cut up chicken for his brothers and said "no-no" waving his hand over it....so sad).  I gave him a spoon of coconut butter (a spread made out of coconut) to distract him- so the re-trial of coconut began that night instead of the next morning as planned.  But, then he refused the coconut milk I had made for the trial for the next 3days; although he did eat his safe peaches. 

We have also re-introduced the millet puffs.   At this point, it came down to a risk vs. benefit decision.   We do not know for sure if the potential cross contamination of wheat with these puffs is a real issue for him or not; we don't even know if he has an intolerance to wheat, except through suspicions from reactions through my breastmilk when he was still nursing (way before FPIES knowledge or diagnosis).   He LOVES his millet puffs, including them in his diet gives him a consistent snack, a finger food, a texture practice...and he tries new foods much more readily when he consumes them daily.   We don't see any consistent symptoms that we could relate to the puffs- we had pulled and re-introduced them many times before in the past as well to be sure; so for now- we will keep them in his diet....until something arises that will outweigh his benefit vs. risk.  For now the benefit outweighs the risk.  

So, right now he consumes millet puffs consistently.   I still am making merry muffins with millet flour and peaches, oil, baking soda and arrowroot but he doesn't love them so doesn't eat them everyday.   He doesn't even eat his peaches everyday.  It's as if he knows, he can handle them every 2-3days but not everyday. 

Millet puffs, millet flour, peaches, trialing coconut and without knowing if coconut is safe, we have started an apricot trial.   In the middle of an apricot trial, we have given him raw organic carrot sticks twice.   He has 3 foods, in TEENY TINY amounts that he is consuming, that I have no idea if they are safe....but I don't know they aren't safe...

What will I do if he reacts?  I don't know.  Fall apart and pick myself up again as I have done dozens of times throughout the last 20mo.   But maybe too, we'll connect another piece to the puzzle.  And maybe, just maybe he won't react and we'll build his tiny menu.  

He has been sleeping better, playing well during the day but he had mucous in his diaper this morning and a pallor look to his face.   But, he may have (likely did) ingest bath soap 2 nights ago!  We have a "safe" soap for him of coconut oil but that night, his 3yr old brother dumped bath soap, regular Johnson's bath soap, in the tub before I could notice.  No vomiting from it, so assumed he just got some drips of water washing over his face and not actually drank it.  He had wet burps and hiccups almost immediately following the bath, disturbed sleep that night with stomach pains.  

Are we tired yet?  This is all just this week.  How do we move forward when every food causes some symptoms?  How do we introduce foods he won't eat?   How do we get him to take his formula when he has symptoms from a food and associates eating with pain?  How do we get him to sleep better at night when he needs more calories in his diet during the day?  We need a break in this viscous cycle....will the missing puzzle pieces be that break?  Will a tailored nutrition protocol based on Little Man's intolerances, his delayed reactions, nutrition from his formula, his personal gut microflora?  Nutrition from functional foods, pre and probiotics, missing micrnutrients...all tailored for his specific needs within his FPIES.....what if this could work?

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....