It has been a while since I posted. Our daughter is doing great on the gluten-free diet. We recently celebrated her two year anniversary of being gluten free.
Just to catch you up on her history (sorry this is long). She was diagnosed as growth hormone deficient when she was around 7 years old. She was too underweight to start growth hormone treatment. Endocrinologist suspected a food absorption issue so we were referred to ped GI. Endo did basic celiac panel (not full panel) in her initial testing and it was negative. Ped GI put us on an aggressive eating schedule with pediasure supplements. Feeding tube is suggest but I decline. She gained weight but her stomach pain got worse and worse during this time. She was diagnosed with mild pancreatic insufficiency (fat malabsorption). Since pancreatic insufficiency is rare in children, they suspected cystic fibrosis. She had a sweat test that was not a clear negative (borderline range) so she had a cystic fibrosis gene test which thankfully ruled out that diagnosis. She starts missing school due to stomach aches. She often curls up in a ball in school and home due to stomach pain. She starts having behavior issues - grumpy, moody due to near constant pain. She is on 4 GI medications (omnezeprole, creon, mirlax, periactin) at this point and nothing is working. We switch Ped GI. She has an MRI of her pancreas and all is normal. Later, she has a upper GI scope that shows chronic gastritis and is negative for celiac disease and h.pylori. Ped GI suggests it is "functional abdominal pain" but given evidence of pancreatic insufficiency, gastritis, constipation, and almost constant stomach aches, I did not accept that diagnosis. One day I just googled all her diagnosis together (added the individual diagnosis together) and got celiac disease. I know there is not medical basis their testing methods but I needed a piece of paper to show we needed to try a gluten-free diet for her and used Enter*lab testing. Her numbers were very high for gluten sensitivity and she has DQ7 and DQ9 genes.
We put her on a gluten-free diet. Within a couple of weeks, stomach aches were much better. Her mood improves. We stopped the periactin. Constipation was better. She gained a couple of pounds. Within 5-6 months she was retested for pancreatic insufficiency. No longer an issue so we were able to stop the creon. We switch back to our original Ped GI. He did not "believe" she could be gluten sensitive and suggested that we put her back on gluten to have her retested for celiac disease. I declined. At her next follow up appointment, he suggested that I put her back on gluten because she is still underweight (she is finally at a healthy level BMI for the first time in her life and at the 3% level on weight charts). He said that I was omitting a food group without a medical reason to do so. He gets very frustrated with me because I "seem to have all the answers." He told us to call us if we needed to but did not schedule a follow up appointment. So she is without a Ped GI at this point.
After two years on the gluten free diet, we have seen so many positive changes. She takes an OTC omnezeprole daily. Stomach aches occur once or twice and week and are mild. She still has occasional constipation, painful gas, and loud painful belches. While she is finally at the 3% level on weight, her weight gain has tapered off and still a concern (10.75 years old and weighs 52 lbs). She is adopted from China and I believe she is genetically going to be small. We are very strict with the gluten-free diet. We usually take food with us to restaurants. I prepare her lunch and snack for school. She knows how to read labels to look for wheat, rye, and barley. She is also lactose sensitive so she is lactose free as well but we are a little lenient with the lactose free part. We will let her have ice cream when she takes lactaid. We try to only use the Kraft cheese that says 0g lactose or cheese that has 0g sugar.
Since she is still having some GI issues, could there be something else still going on? I would have thought we could give up the acid reflux (gastritis) medicine at this point but the couple of times we have stopped it, her stomach pain and burping increases so we put her back on it. Is there something we are missing? Should we find another Ped GI?