What next?

[KathrynA]

I have been taking my daughter to the doctor for stomach pain since she was 3 and her preschool teacher noticed her stomach pains started everyday at the same time. I've always felt brushed off. In December 2021 things finally came to a head because she had the "stomach flu" 4x in a month and I between it was non stop stomach pain. I went to the doctor and had a lengthy conversation about it without my daughter present and when I told her the naturopath diagnosed me with a brewers yeast intolerance she decided we both needed to be tested for celiac disease. We both started consciously eating wheat and we got horrendously ill. It was very obvious that wheat was in fact our problem. I gained so much weight in that month I couldn't  go skiing cause I couldn't get my snow pants on that I wore 5 weeks earlier with no issue. I got migraines and joint pain felt nauseous non stop and had so much diarrhea I thought I'd die. My daughter was exhausted cranky crying non stop and miserable. Alas we both tested negative for celiac disease with the TTG. She then sent us both for wheat IG-E testing. Mine was positive but my daughter was negative. We both stopped eating wheat but it took 3 months to recover and the diarrhea to stop. We both still seem to get sick quite frequently despite not eating wheat and hardly eating out cause we easily get super sick. I feel my daughter is so tiny and behind her peers in growth. I was worried she still has something going on but I get dismissed by our family dr cause our blood work is fine. Out of desperation and the hope that I might be able to rule something out I did a home DNA swab for celiac disease for my daughter. It came back positive for HLA DQ2,2 heterogeneous. But now I wondering is it safe to assume with her severe projectile vomiting and non stop belly pain that she has celiac disease? I keep reading that you need a positive TTG cause the gene could not necessarily be active. They reccomend a gluten challenge. She went to a birthday party where the mom got her a gluten-free Cupcake that clearly was contaminated and she threw up for 4 hours and was sick with belly pain for a week how do I force her to ingest full blown wheat when she gets so incredibly sick. It seems like torture. Any ideas or help would be greatly appreciated. Shes been gluten free now since February 2022.

[trents]

Is she still consuming dairy and oats? The proteins in these two foods closely resemble gluten and can cause celiac reactions in a minority of those with celiac disease. It is also possible that your daughter has NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is no test. 10x more common than celiac disease. Celiac disease must first be ruled out. Some experts feel NCGS can be a precursor to celiac disease.

How old is your daughter now? Was a "total IGA" test ordered? If total IGA is low, then the tTG-IGA test and other IGA tests results can produce false negatives. And if she is still a child her immune system is immature and there should have been tTG-IGP and DGP-IGA tests run. Here is an overview of testing for celiac disease: 

 

[KathrynA]

She does still consume milk and oats however we do use only lactose free products. She consumes both those things daily and her episodes are about 3-4x a month. Should i trial taking it away? Tons of gluten-free kids snacks contain oats....thats a hard one to limit. Oats do make me really sick as well and i need to stay away even if they are gluten-free but she seemed to thrive for about months after going gluten-free and now it seems to be popping up again. We were both only tested for TTG. My daughter is currently 9yrs old, was 7 when we got the negative TTG. My dr wouldn't refer us to anyone else and I know putting her back on gluten to do further tests would be horrific. And how important is it to know if she is celiac or NCGS. And with her having the gene for celiac disease can she out grow the sensitivity? 

[trents]

Lactose is the sugar component of milk. It may be the protein component, casein, that is causing the problem. It can mimic gluten for some celiacs. 

At the end of the day, the antidote for both celiac disease and NCGS is the same, total avoidance of gluten and possibly some other cross reacting foods.

[KathrynA]

Interesting. She's been on lactose free milk since she was about 3years old as it seemed to improve her tummy issues for a short time. Maybe ill try and remove it and see how it goes. Thanks