Millet puffs safety questionable....

Since the news of villous atrophy in Little Man, I have been worried about every little thing in his diet.  Villous atrophy is most often recognized in Celiac disease but can be seen from any allergic enteropathy response.   We do not know if we will ever know what caused it but that isn't stopping me from trying to figure it out, or at least narrow it down.

Was it something he received small amounts of/trace amounts?   Was it from soy challenge?  Was it from prolonged/unhealed inflammation?   We have ruled out that it was from celiac (he is not on wheat), but what about gluten contamination?  Is his system sensitive enough?  Does he have gluten intolerance?   I do not tolerate gluten, but I do not have Celiac (confirmed on biospy due to my symptoms and persistent/worsening IBS) so despite not being able to tolerate wheat in my daily diet- I can have small amounts, in a rotation type style diet.  While nursing, when I had more wheat then I was accustomed to having, Little Man would be affected that night with gas, wet burps, and pain.  We suspected a wheat intolerance.   His first scope was to rule out celiac disease.   Biopsy and blood test do not show any evidence of Celiac disease in his system.   In July, we ruled out an autoimmune disorder by scope.   This last scope ruled out a small bowel bacterial overgrowth.   So, the questions remain: soy, contamination of something in his diet, or villi injury from unhealed inflammation.   His inflammation (refluxing pain) had started flaring before soy challenge but the soy challenge could have pushed him "over".    

I am nervous about villous atrophy happening again.   We had no idea- we know he has had many bouts of inflammation, we knew that was part of his FPIES.   Villous atrophy was an unexpected finding.   We have successfully healed it, but how do we prevent it from happening again if we don't know what caused it?   We proceed very, very carefully.  

I've had a nagging feeling about millet safety, we stopped it in Sept (after a reaction that we later discovered was from tapioca starch in Vit.C compounded Iron supplement) and I re-trialed it but he wouldn't eat the porridge anymore.  He avoided it, when I served it.  I tried making peach dots with it- he picked around the ones with millet porridge mixed in.   But,he LOVED his puffs! They have helped SO much with his oral aversion and texture practice- and pincer grasp!  I felt if he was going to have a reaction, he would upon reintroduction, even if it was minute amounts like millet puffs.   We didn't see anything that I could label as a reaction to the puffs, so we continued to let him enjoy his treats.   

Recently, another mom was trialing millet- with puffs.   The puffs were from another company.   Her daughter began to have symptoms consistent with a possible cross contamination issue (recognized from a previous issue with a quinoa trial with cross contamination issues).   I had known of her quinoa cross contamination.  But I had not thought to double check the millet puffs for cross contamination potential.   Millet is a gluten free food.   Right?   Well, before reintroducing millet puffs (hoping the 4 weeks in the hospital would allow him to "forget" about the puffs since previously he would ask for them daily)- I contacted the company (e-mail and by phone).  This was their reply (via e-mail)- my response was similar (not as much background) in my phone call inquiry as well.

Bottom line.  Millet is a grain.  Millet is a gluten free grain.   Not all millet can be considered gluten free because of manufacturing and processing potential for cross contamination.   This company makes wheat puffs and rice puffs, along with their millet puffs.   Their practice is to sanitize the line before changing products as well as discarding the first and last batches but that they do not have dedicated equipment so could not guarantee the puffs to be free of gluten.  Here is their e-mail response.   I'm not sure if it is a real answer?   Or more of a CYA (PS- I'm disheartened by how much CYA I have had to encounter on this journey).  

Dear Ms. M


Thank you for taking the time to contact us regarding our Puffed Millet. We strive to maintain the highest quality products and appreciate your patronage.


We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.

Consumer health and safety is our number one concern. We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is a major ingredient, it will be specified in the ingredient list.

Hain Celestial Group products that make a gluten-free claim will carry the triangular Gluten-Free symbol, be labeled gluten-free, or specify Gluten Free certification by GFCO. To learn more about the wide variety of gluten free foods we offer please visit www.glutenfreechoices.com. We hope you find the information, recipes and articles to be a useful resource.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Sincerely,
Consumer Relations Representative
Ref # 2182464


This last statement confuses me the most....the "potential allergen" of cross contamination is not listed on the Millet Puffs- which is why I assumed they were allergen friendly (being a gluten free grain).    A lesson learned.   But also, we may never know if that was the culprit to the atrophy.  Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.

Not just an intolerance....

When I first began to learn about FPIES, there is a lot of language about it being an intolerance....a protein intolerancece.   Yes, it fits in protein intolerance category.   But even protein intolerance is not "just" an intolerance.  

An intolerance (such as lactose or fructose intolerance) is a lack of tolerance, the body lacks sufficient enzymes or digesting particles to sufficiently breakdown components of the foods for proper digestion.   This causes pain, cramping, diarrhea, constipation, and general dysbiosis and possibly some malabsorption as the foods pass too quickly and improperly digested through the GI tract.  It is a limited response, and it does not cause a systemic allergic reaction in the body. 

FPIES is not just an intolerance.   It is an allergy, not an antibody producing allergy but it is a full system response -- ask any FPIES mom....it is not restricted to "just" the gut.   It is an allergy of the gut but it is not limited to the gut.   The allergic response is a gut response but the allergy is system wide.   There is a brain-gut connection, recent years research has come a long way to show more and more connections to the brain-gut connection for such things as Autism, Crohns, Fibromyalgia, and....allergies.   Maybe that is the only connection....but why, in a reaction (before or after or during) does my little man experience eczema, asthma, disturbed sleep, hyperactivity, mottling of the skin, edema/puffiness, etc??   This is not just an intolerance.

Celiac disease is an allergy to gluten.   FPIES is an allergy to proteins- any proteins can fall in this category.   Gluten proteins in Celiac disease cause villi damage in the small intestine, resulting in atrophy of the villi and malabsorption of the nutrients.   Mild villious atrophy, inflammation, gastritis, colitis are all seen in FPIES- it is why it is so named Enterocolitis (entire intestines are affected).

A good article was shared today from http://www.celiac.com/: Unglued:The Sticky Truth About Wheat Dairy Corn and Soy and also discusses the malabsorption of nutrients in response to allergy from proteins.  

Little Man is receiving nutrition via IV- his calories, protein, fats, and carbohydrate plus vitamins and minerals are going into his body directly into his bloodstream.  He has villous atrophy and has been unable to absorb his nutrients sufficiently.  He also has inflammation, furthering his malabsorption of nutrients.  We anticipate this to heal his intestines so he can once again have the chance to absorb nutrients properly, and hopefully begin to pass more foods to include in his tiny menu.   His IV nutrition has corn derivatives in it.  He is allergic to corn, has confirmed FPIES trigger response to corn.    Dextrose is derived from corn.   Mannitol in his multivitamin is corn derived.  These are broken down, hydrolyzed.   These are not going in the gut, but through the vein.   FPIES is thought to be a T cell response.   T cells are the gate keepers....are we sneaking by the gate keepers by not going through the gut?  I want to believe we can....but something tells me we are not completely.   My main hope right now is that we are sneaking by enough and that his body doesn't continue to build this response we have been seeing, that it can "tolerate" it long enough to continue to provide him the other nutrients he needs - giving his gut the rest it needs. 

Dextrose and Mannitol are hydrolyzed to be broken down to be very low protein....FPIES triggers recognize trace proteins, cross contamination of proteins.   This is understood in Celiac disease in the medical community (although still new, it is recognized and understood- why not FPIES?).  

Nutramagin is a formula that has hydrolyzed whey proteins (dairy), less allergenic dairy proteins.  Little man could not tolerate (and had full blown vomiting reactions from this formula, on two separate trials) hydrolyzed dairy proteins.   We know his dairy trigger is sensitive (his vomit covered my kitchen floor from sucking on a McD's fry that has dairy in it's seasoning).   We know he can not tolerate even trace amounts of dairy protein, and we don't even try to give him something that has a chance of trace or cross contamination of dairy protein in it.    Dairy intolerance, dairy allergy is better understood than a corn allergy. 

Corn syrup solids are broken down to not contain corn proteins, but trace proteins can remain.  Corn syrup solids were still causing random vomiting and ongoing gut inflammation for my little man.  Citric acid induces violent vomiting.   Gypsum board (sheetrock made from corn derivatives) caused a full blown vomiting reaction.  Same for cardboard, and paper.  His corn allergy is as sensitive as a celiac's allergy to gluten.  Would a Celiac be able to tolerate wheat proteins (even broken down or hydrolyzed) in their IV? 

Little man is primarily doing well, he is getting nutrition he needs, he is getting the only treatment plan that is an option left for him at this point in the road.  The side affects this may cause (even re sensitizing his body to corn) may have to be par for the coarse, the risks outweigh the benefits.....if it is healing his gut.  I can't help but worry....what else is going on in his body in the meantime?