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....
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.
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.