5 Years Gluten Free - But Now Wondering If I'm Actually Celiac. Help!

[Lissa]

Hello everyone,

This forum has been a huge help for me throughout my entire gluten free journey. Five years ago I was super ill all the time - D, stomach gurgling, constant nausea, brain fogginess, exhaustion. Blood test came back negative (I think? It might have been inconclusive), but with my doctor's advice, I went gluten free anyways. The D, gurgling and nausea cleared up within days and life was good. I had a biopsy a year later to look for Celiac (that's how long the wait was for the test) so my results came back negative/inconclusive because I had healed.

In the five years that I've been gluten free, I've never intentionally ingested gluten. I have been sick a few times that I figured was cross - contamination. Once, I actcidently ate the casserole with wheat noodles instead of my gluten free casserole. I freaked out, took some pepto bismol, and was a-okay, except for a bit of gas.

Almost a year ago, I started suffering from gallstone attacks and had my gallbladder removed in early Feb. My family is trying to convince me that all my symptoms that I attributed to Celiac/gluten intolerance are due to my gallbladder. I didn't believe them - until tonight when I accidently ate 4 wheat filled sugar cookies. I didn't have any pepto bismol and I didn't want to run out and get ill while out, so I figured I'd just ride it out. And guess what? I was completely fine.

So I guess I am completely confused. I was never officially diagnosed with gluten intolerance or Celiac, and I have felt much better since the gallbladder was removed. I do still suffer from brain fogginess and exhaustion - possibly because they are thinking that I have sleep apnea. My doctors are no help - my family gp is bitter and doesn't really care about anything and because I live in a doctor short area of Canada, I cannot afford to loose her. And then on the other hand, I have what looks like a patch of excema/DH on my inner elbow for the first time ever (been there for a few months, doctor brushed it off and could've cared less).

Basically I'm just looking for some advice or thoughts. Should I try more gluten? Or should I stick with gluten free? Has anyone else experienced this "accidently ingesting gluten but not experiencing negative side effects" and also "got super ill from cross contamination"?

I'm just so confused. Thanks in advance to anyone who read through this whole rambling post!

[Waverlywoods]

I would remain gluten free based on there is no harm in it, only potential harm if you go off it. I would get a stool test done soon and allergy testing soon. There's an online lab that you can use to basically order your own tests, if you can't find a doctor to order what you think you need. I don't know if I'm allowed to say the name of the company here. Plus, I have not used them yet, but plan on doing so.

I have had good good results going whole foods only route and sticking to meat and veges. Hope this helps!

[curlyfries]

It's not unusual to have no reaction after so many years of a strict gluten free diet. If you are, indeed, celiac, most likely your villa have healed by now. But....the more gluten you eat, the more damage is being done, and you eventually will start seeing symptoms again.

My advice would be to have a biopsy done of that rash. And make sure the doc knows the correct way to do it....not the actual rash, but the surrounding tissue.

[Jestgar]

..... so I figured I'd just ride it out. And guess what? I was completely fine.

So I guess I am completely confused.

Think of how your immune system works. You get exposed to something, you make a bunch of cells that recognize that something and attack it. After the threat is gone, most of the cells die, but a few live on to be prepared for another attack. The longer you go without being exposed to that something, the fewer cells remain. Fewer cells mean less of a chance of them seeing that something and mounting an attack.

So you have two options to believe here.

1) I never had gluten intolerance, I'll start eating gluten and everything will be fine.

2) I have so few memory-gluten cells that I have some protection from cc. If I start eating gluten I'll reestablish the population and it will take another five years of strict diet control to get the population down again.

Only you can decide which one you think is true.