SMDBill

I think a major part of your problem may be that you've been gluten-free for so long. Damage may not be present, so if you are celiac or just intolerant, neither will show physical evidence. I was gluten-free for only 2 months and I showed no signs of damage so my gastro could not conclude definitively if I'm celiac or NCGI. In the end it really doesn't matter because your solution to the problem is the same for either. I'm in the unknown like you and I just treat it like I have celiac. It's just easier to explain to others and whether it is one or the other is more a matter of semantics for me because I avoid gluten in the same manner and wouldn't change a thing if I knew it was one instead of the other.

You will also not show signs for intolerance to milk. I've been lactose intolerant my entire life and there's no physical evidence to be seen to confirm that via endoscopy. And I think in your case if you avoid gluten and soy and milk, then feel better....then you have an intolerance to all of them. Simple solution is to just continue avoidance and use enzymes to help with the milk issue if they help.

What a wonderful story! It's always great when our little ones get back to their old selves. And you already have your answer for his problem whether or not the doctor agrees What a blessing.

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

It sure appears possible. My question is whether you have been completely gluten-free or just light? If it's DH it would suggest you haven't been totally gluten-free and you mentioned Thanksgiving and carryout. Were those foods prepared gluten-free as well?

Did your GI mention anything about gastritis or other digestive issues that are also present? I am not a medical professional so this is all guessing, but I'm wondering if an over the counter drug like Prilosec OTC or similar would help ease discomfort when eating? Digestive enzymes as well if you knew which type you needed and in what quantity. For example, I'm lactose intolerant so a couple pieces of hard cheese requires 3 strong lactase enzymes where most people seem to need 1. My first thought was you either have severe food allergies along with celiac or some other condition undiagnosed because the foods you have chosen are safe for celiacs.

Priolosec or similar will cut down on stomac acid production while food is present and there are others that treat symptoms as they happen. Have you experimented with any to see if they help the symptoms after you eat or to prevent them before you eat?

Those probiotics will for a few days make you wonder if they're even worth the money, but a month or two of taking them daily and you will hopefully feel thankful to have made that purchase! Mine have made a huge difference.