My daughter was finally diagnosed with FPIES when she was 10 months old. Oats were the first trigger then followed by Rice, Barley and Wheat. Mostly all grains.
Wanted to ask a question and share an ER letter that has been very helpful for us. Forgive me if there is another ER letter listed on the site somewhere but haven't had a lot of time to investigate the site.
1st the question: Has anyone used tapioca flour or coconut flour with these triggers? My concern is with the tapioca with her Rice allergy. I'm afraid to try.
Here is the ER Letter I have in the diaper bag just in case:
Dear Doctor (To Whom It May Concern),
The patient named above has a food allergy called Food-Protein Induced Enterocolitis Syndrome (FPIES). This is a type of allergy that usually does not result in typical "allergic" symptoms such as hives or wheezing, but rather with isolated gastrointestinal symptoms. The foods that this child is avoiding include: Oats, Wheat, Barley and Rice. The symptoms of this type of allergic reaction include repetitive vomiting that may not start for a few hours (e.g., 1 hour) following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea that starts later (after 6 hours). In some cases (~20%), the reaction includes lethargy, hypotension, acidemia, and/or methemoglobinemia. The treatment is symptomatic and can include intravenous fluids (e.g., normal saline bolus, hydration) and steroids (e.g., Solumedrol 1-2 mg/kg) for significant symptoms. The latter is given because the pathophysiology is that of a T cell response.
This information is being given so that this could be considered in the differential diagnosis for this patient in the event of symptoms. Of course, this illness does not preclude the possibility of other illnesses (e.g., infection, toxin ingestion, etc.) or even other types of allergic reactions leading to symptoms, so it is up to the evaluating physician to consider all possibilities. Similarly, the treating physician is encouraged to pursue any other treatments deemed necessary (e.g., symptomatic such as epinephrine for shock, antibiotics for presumed infection, etc).