Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Thursday, January 6, 2011

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 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.

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.


  1. I am so sorry to hear about your struggles. I can certainly relate to many of them. This question is totally unrelated to this post, but I think the answer could help us tremendously... Did you have any external signs that neocate was not the magical solve for all of Sam's problems? We are on a neocate infant only diet and my DS still has some symptoms of allergy. I don't know what to attribute this to, but I thought that maybe you could help. Thank you! I appreciate you and the many moms who have taken time to share their experiences online. It has helped my family tremendously!

  2. Yes, we had many external signs. If I had known then what I know now- I would've recgonized them for what they were. Not only did we have a myrid of symptoms, Sam was scoped after 5mo. of elemental formula only diet and he had worsened inflammation on scope and biopsy. We knew without a shadow of doubt that all the symptoms he had on Neocate were from the Neocate....and from the corn syrup solids in the Neocate. I moved away from it and re-trialed it 3x just to be sure we couldn't find a way to work with it.
    Symptoms included: self restriction of the Neocate. Random vomiting every 3-4days, vomiting and extreme stomach aches if he went above a certain amount in a day, he had continous colic in the evenings, and he continued to have sleep disturbance and pain. The voilent vomiting on Nutra was the worst and then when we tried to increase his neocate to 22cal/oz and his vomiting began everyday again,and he started self limiting even more...we just knew we had to move away from the Neocate. Many things improved when we did that (his pain and our daily life for one) but the damage had been done for so many monthes so we are still dealing with issues from that.
    The only recommendation I would say if a corn intolerance is suspected, and an intolerance to to assume a corn intolerance and NOT trial it -- trialing it sensitized Sam's body to it 100-fold and we could no longer work with trace amounts. We should've assumed he had it and found alternatives for everything corn in his diet. Corn fail not only sensitized his body but it left us with a sick-sick little boys for weeks, and the inflammation took a long time to heal.
    Thank you for your kind goal has been to share my experiences the best I can so other families can benefit from what we've been through. Not every child's triggers are the same and not every situation is the same...each child's needs need to be looked at individually. I hope you can find the right combo of things to help your son. What are his symptoms still on Neocate only and how long has he been on it exclusively?

  3. My son is only 15 weeks old. He has been on the neocate exclusively for just over 8 weeks. We were told to add rice to his bottle to help with aspiration caused by GERD (I am convinced this is because our issues with milk were misdiagnosed for quite some time - so long that by the time I took him off of it, you could see large amounts of bright blood in his stool). The rice sent us into the hospital for many days due to the vomiting and diarrhea. When we made the switch to neocate, we were still adding a dallop of Karrow syrup to his bottles. I noticed the vomiting would increase when we added the Karrow so I took him off it and we had a dramatic improvement. Now, the only things he ingests are neocate infant and Zantac. He still has diarrhea and random bouts of vomiting. Lots of spitting up. He never sleeps - I mean never. He has terrible gas and abdominal pain. I took him off of the Zantac for a while and the reflux increased. I put him back on it and he had three watery explosive diapers in one day after just two doses. To me, this means that all things point to a corn intolerance - but I am hoping against all hope that I am wrong, or that maybe just the Zantac is the issue. We also had a reaction that seemed to be caused by flavored infant Tylenol that consisted of bright green diarrhea for a few days. What do you think? I know you aren't a doctor, but your experience is worth a lot more than what many doctors have to offer (in my limited experience with this so far). Thank you so much for your time. If it were not for people who share their experiences online, I don't know what we would do - especially since there are no physicians in our area with experience in dealing with FPIES.

  4. Sounds like he needs an endoscopy at the very least. Whata are the doctors saying at this point? Wait and see? (we got a lot of that). What area are you in? (I am active in a lot of support groups so might be able to point you in the right direction).
    Would your doctor be willing to give you a Rx for compounded Zantac? Seems to me, that would be the place to start. Compounded Zantac, an endoscopy/colonscopy, and then go from there. The zantac has no broken down corn, it's all in full form- so that could easily be the culprit. I can't remember but Zantac may also have dairy in it (some reflux meds do).
    Have you tried Elecare? Sometimes just switching elemntals can do the trick.
    I KNOW it is rough, but unfortunatly with a clinical diagnosis- so many other things need to be ruled out first.
    The bright green diarrhea after tylenol would be concerning to me. Also the watery explosive diapers and symptoms on Zantac.

  5. The doctors at this point have pretty much just told us to avoid the things that seem to give him problems - Except rice... they want me to do another trial with rice at home just to confirm the diagnosis. The last time he got rice the reaction was so horrific (days of hospitalization, vomiting bile, diarrhea for a week) that I refuse to do it. I think an Rx for compounded Zantac is absolutely the way to go. I wish I would have thought of that. Zantac does not contain dairy. Prevacid contains dairy. We found that out the hard way when B reacted to the Prevacid. Thank you so much for the suggestions. We are in the Greenville, SC area, so if you know of any local resources I would LOVE to use them! Thanks so much for your time. We are praying for you guys!