Gluten Once A Day Enough For Biopsy?

[freeme808]

I finally saw my GI. Im scheduled for a endoscopy/colonoscopy(biopsy of duodenum & ileum) in about 3 weeks cause that is the soonest one available . I had to wait a month for my GI appointment that I just had...so I ate gluten everyday, and well Im eating it almost all day long now. I feel so sick and depressed and my stomach aches all day. This is so hard.

 

Anyways, the doc just said maybe go gluten free until a week before...I looked at him like huh? Then he said, well maybe about two weeks before load up...like really load up. And I still looked at him like he was crazy. So I told him, that Im just going to continue eating it...it's too hard for me to stop, go through withdrawals, all to consume it again. He is knowledgable about Celiac, I just think that he, like other articles I've read, thinks that if I/you truly have Celiac that eating just two weeks prior should trigger a response to do something to the intestines-if you "truly" have it. 

 

Well, I think that's a load of poo....Im just going to keep eating it everyday. My question is, If I just eat gluten in the morning would that be okay-enough? I was doing that in the beginning of my 4 week wait before, but found I actually felt a little less nauseous and sick if I ate it all day long..Does that make sense? It's like I feel worse with small amounts, but Im SO HUGE and bloated right now and sore...I think I need less? Ugh.

 

Advice? 

 

Also, he was concerned about my Ferritin levels that I showed him from previous blood work. They are/were VERY low. He said that the small intestine is where iron is absorbed, and Celiac affects that area....and that could be an indicator of it in the very early stages-hence why I don't have chronic diarrhea yet. SOOO, we won't know much until he goes in and investigates. lol. 

I don't have the "specific" genes...so we'll see. I have HLADQ 1,1 (Subtype 5,6)

IM SO CURIOUS RIGHT NOW!   

[freeme808]

Sorry, I think I put the wrong title to my question. I know all over the internet it says about 2-4 slices of bread a day. Im just wondering because I've been eating so much gluten the last 3 months, if I cut back just a little, will it matter too much?

 

What were your experiences on the gluten challenge, biopsy results, etc.?

 

Thank you!

[greenbeanie]

I'd been gluten-light for about 15 years (knowing that wheat made me feel sick but not suspecting celiac until recently), then was totally gluten-free for 12 days, then did a gluten challenge for six weeks before my endoscopy. I ate one medium-sized serving of wheat on most days for the challenge, and two servings some days. I felt so sick and my hair started greying rapidly and falling out (I'm a 37 year old woman), I sweat through many shirts every night, my tongue swelled up, and my intestinal symptoms worsened, so even though I knew I wasn't quite eating the recommended amount of bread I figured it must be enough to show a clear problem. However, I was wrong. I haven't seen my actual pathology report or repeated blood tests yet, but the form letter summary that I got in the mail the other day did not seem to suggest that my biopsy indicated celiac. It did show other things - redness in stomach visible during the procedure, inflammation in the biopsies from my esophagus - but that alone doesn't seem to explain my problems. I haven't seen my doctor for the follow-up appointment yet, but I'm pretty sure I'm going to end up without a clear diagnosis (despite the fact that my daughter has celiac and I have a 20+ year history of documented symptoms consistent with celiac).

So the moral is: Keep eating as much gluten as you can! Don't assume that awful symptoms will mean the biopsy is positive! I honestly don't know how much more gluten I could have eaten while still functioning, but in retrospect I do regret not having pushed myself even harder to consume a full 4 slices every day.

[freeme808]

Hi greenbeanie, thank you for responding. What you said totally makes sense! The good news is, that I had only gone gluten-free for like a month and half. Which means, by now, I've been on gluten for about 4 months now. I've gained weight like crazy! And my stomach is rock hard and hurts...surely, if I have Celiac, it should show some damage. I don't think I went gluten-free long enough for things to heal up in there. 

 

You mentioned you were gluten-light for 15 years...this is why Im going through this horrible challenge now. I know it presents a problem for me, I want to know for sure "how much" of problem it really is and if there's a potential that it can cause problems for my future children. Since I've been back on gluten I too am suffering from hair loss(talking more than the usual handful a day that hairstylists say), and I too have a bunch of white hairs now- Im 24. I noticed the white hairs this last year or so. 

 

Thank you for sharing your experience with me! I sure hope they call me to come in sooner! Im going to be a whale by the time this is all over!