14 month old FPIES with Oats, Rice, Barley and Wheat triggers

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).

Original Post

Hi Angela,

We don't have more than one grain trigger but avoided all other grains for a long time (about one and a half for the oldest and just introduced wheat at 10 months to the youngest basically so I could get a sense of some more safe foods so I could wean from pumping at work around his first birthday) with both our kids who have FPIES to oats. Eventually wheat was safe for us but before it was we only used corn. Kix cereal, corn muffins, etc. not sure the other things in those and/or if your LO is allergic to those. We also ordered these potato wheels called Chee Cha puffs off of amazon with our first but can't find them anymore. They were a great substitute for puffs. 

Would almond meal possibly also work or do you have nut allergies?

Thanks for sharing the letter! We have been so lucky to be near am ER that is a children specific one with lots of fpies knowledge but go to a much smaller hospital if we have to go when we visit grandparents.

My daughter (now almost 16 months old) has FPIES to rice and oats. She hasn't been exposed to barley or wheat yet.

I've used a number of "alternative" flours and she is ok with all of them: potato starch, tapioca starch, plantain flour, corn flour, chickpea flour, buckwheat flour, coconut flour, quinoa flour, almond flour. 

I found coconut flour impossible to use for baking, particularly if you are avoiding eggs. It absorbs tons of liquid. 

There are light, medium and heavy "alternative" flours and you can't bake with only heavy ones (quinoa, almond, buckwheat - coconut it's another category, XXX heavy). You need to mix them with medium (chickpea) or light flours (the most typical is rice, which we are both avoiding, others are tapioca, potato, plantain). If I had to start again I would use a mixture of chickpea and potato/plantain flour to bake. I haven't baked with corn flour yet - it's our most recent pass. 

It is so good to hear there is light at the end of the tunnel and she will out grow some of the allergies. No nut or dairy allergy.   Thanks so much for all the great suggestions.  I will be trying in the near future.  Really appreciate everyone who responded. 

The ER letter has helped so much. Living in Birmingham AL FPIES is not very common.   

One more question: Has anyone seen a pediatric gastroenterologist?  And has anyone heard of a child being allergic to something on top of FPIES.  The allergist we went to said she not only had oats as a trigger but was also allergic to oats based on their tests. Mentioned she would probably not outgrow that until she is much older if ever. 

Angela

Hi Angela, I am from MD, my LO has the same triggers as your kid. She had severe reactions to rice, oats, wheat. Severe, severe vomiting with all grains. I am a nurse and had not heard of FPIES, we were struggling with it until she was finally diagnosed at 15months by an allergist. Thinking back about it, I think she had started with the symptoms since 3months of age when she was still being BF and supplemented with formula. My pediatrician kept telling me it should be food allergies so we got her tested for almost all kinds of food that I eat (almost  50 tests). Her Ige reaction did comeback positive to a bunch of foods and we were relating all symptoms to regular food allergies. Long story short we saw significant improvement in her extreme whole body cradle cap/eczema with steroids and antibiotics prescribed by dermatologist. Initial Allergist at 8months told us that the vomiting was from her food allergy and she will outgrow it. Pediatrician asked us to repeat cereal and solid trials every 1-2 weeks. And we kept torturing our poor kid every 2 weeks until we could take no more! Finally  at 15 months changed allergist and got diagnosed right away with FPIES. What a relief!!! He asked us to hold off all grains until her 2nd birthday and at 2yrs will do an in office food challenge. She is now 21 month old, all her milestones are delayed and weight gain is very slow but she is a happy baby!

Did your LO have any delay in milestones? Weight gain was it normal?

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