Our middle child (of 3) was our family's canary. We have been gluten free for almost 7 years now, and it has been a long road for our family. We had a very difficult time understanding the severity of our gluten issues and have found the best guidance to come from those that are "Super Sensitive". We quickly realised that the severity of our middle child's condition required a gluten free home. We also have had to implement very strict protocols for care, school and those that enter our home after eating gluten.
We have worked with doctors that have tried to reduce our super sensitivity, but the most effective protocols for our family remain strict eliminations of gluten. I am happy to share more details of our story if you want.
You haven't mentioned the status of your home related to gluten, and I wonder if he continues to be contaminated from his environment. There is a rather recent posting related to gluten contamination and refractory celiac which may be interesting to you. I hope that you are able to figure out more information to help your son recover his health. We have had several complications related to our celiac and severe gluten hypersensitivity and have had to endure severe complications due to our lack of understanding of the effects of chronic gluten exposure that is outside the "normal" tolerance levels for a "standard" celiac. I wish you well in the journey and share that our family has had to deal with a lot of testing, investigation and interrogation for understanding the extent of our complications. I hope that you find relief and resolution quickly. I understand how exhausting and scary the rounds of investigation for complications can be. Big hugs from another celiac mama!
We have three children, two are adopted and one is our biological child. Our biological child is the one with celiac.
Two weeks ago, his AST and ALT were retested and they were getting very close to normal. I knew the enzymes were getting better because his poop was starting to actually look normal. Two days ago he started having classic celiac symptoms again: diarrhea, white poop, bad rash, tummy ache. I'm sure if they tested his liver enzymes, they'd be high again.
I have noticed one thing, which is that he has celiac symptoms whenever they have corn for lunch at daycare, so we need to cut out corn. The other piece of this puzzle is that he was on an antibiotic for thirty days due to a chronic sinus infection. His celiac symptoms improved dramatically while on the antibiotic. Now, we are back with white poop, diarrhea, rash, etc.
Our house is separated into shelves and cupboards that are gluten-containing and gluten free. All our evening meals are gluten free, then I save the leftovers for our celiac child to take to daycare the next day. Breakfast is usually an Udi's muffin and banana.
We're frustrated, because the pediatric gastro sent us on our way after doing the testing and said, "I'm not even sure he has celiac." When I pushed back and said, "oh good, then I guess we can go back to eating gluten," he responded with, "I would keep him gluten free."
So, we have all these celiac symptoms, we have one doctor's diagnosis and instructions to keep him gluten free, but a boatload of more questions as to the recurring symptoms.
I think we will go ahead and take him to Mayo. Any one else take their child there?