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beansmom

Confused - Need Advice

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Hi all,

I could use some help making sense of what has been going on with and what has been recommended.

About a year and a half ago I was having a very wierd symptom that no one seemed to know or care about. I had blisters on the inside of my mouth. I did my own extensive research and could only come up with that it was possibly an oral form of dermatitis herpetiformis. No real GI symptoms. I had some blood tests done and the only antibody positive was the anti-gliadin. All the docs I spoke to dismissed this as "nothing". Unfortunately, I never had the blisters biopsied. A few months later I started the South Beach diet. The first 2 weeks have no carbs. I felt so much better. Then when starting back on carbs I noticed that I retained water and gained weight when I ate wheat. So I stopped eating wheat. I wasn't obsessive about gluten but with South Beach I was really only eating real, whole foods. No processed anything. I stopped getting the blisters! I forgot to mention that I also had been lactose intolerant for the last 10 years. About 4 months ago I forgot to use lactase when I had cottage cheese. No problem. Wow. So, carefully, lol, I tried having milk. I am no longer lactose intolerant!! I think I healed myself but quiting wheat!

Unrelated, or so I thought, the last few months I have been feeling unwell with fatigue, bloating and heartburn. Blood work showed a very low, but still in the normal range, B12. Huh? I eat plenty of red meat, fish, eggs, etc. So researched that and asked to be tested for H. pylori. Came back positve antibodies. Turns out that that could mean current OR past infection. Consulted with a GI specialist who said "think you have celiac". Wants to do an endoscopy/biopsy for the H. pylori before recommending the difficult 2 week treatment with multiple antibiotics. But he wants to also check for celiac. Problem is I haven't eaten wheat/gluten for over a year. He said a 2 week challenge is sufficient. Not so sure about that. The truth is, however, I've been very careful about not eating wheat but haven't been "celiac careful". I use wheat free soy sauce, but don't worry about using the margarine in the fridge that has bread crumbs (love my kids) in it. Do you think I have been getting enough gluten along with a 2 week challenge to test positive?

I really glad I have a doc that is actually on top of this. I'm actually thinking I will test positive for the H. pylori and that I may or may not have celiac. I guess if I have to have the endoscopy to prove that anyway, I'm fine with a 2 week challenge. The problem is that when I was eating wheat, I didn't have all that many symptoms. The mouth blisters were not all the time.

Any thoughts out there? Thanks!

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Some celiacs are highly sensitive, some less so. If you've been gluten free to the point where you are only having occasional crumbs in the mayonnaise, there is no guarantee of antibodies.

What I've read for a challenge is four weeks with 4 slices' of bread worth of gluten a day. DH can be biopsied. I wonder if they could test the rash in your mouth if it shows up again for a positive diagnosis?

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Some celiacs are highly sensitive, some less so. If you've been gluten free to the point where you are only having occasional crumbs in the mayonnaise, there is no guarantee of antibodies.

What I've read for a challenge is four weeks with 4 slices' of bread worth of gluten a day. DH can be biopsied. I wonder if they could test the rash in your mouth if it shows up again for a positive diagnosis?

Thanks for the response. Fortunately, or unfortunately, I haven't had any blisters in my mouth for over a year. I don't think they just pop up with wheat ingestion but I guess we'll find out.

I forgot to mention that I also have autoimmune hypothyroidism. Does this all go together?

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The fact that you know you have to be "celiac careful" if you're diagnosed is a good sign that you will cope well with the transition.

Trust your body.

Thanks for the reply. Yeah, I think I'll be fine if I need to be "celiac careful", but not necessarily happy (who is?).

I'm just afraid I will get a false negative. Then I still won't know. I don't think this will be a definitive diagnosis unless it comes back positive. If it's negative, it may just be that I didn't have enough of a gluten challenge. If I haven't been "celiac careful" will I still have enough damage to get a positive biopsy after only 2 1/2 weeks of a gluten challenge? The doc seems to think 2 weeks is more than enough but would be perfectly fine to schedule the endoscopy later. I want to get it done because of the positive H. pylori antibodies. I would love to have something to explain my symptoms that just requires a few weeks of antibiotics and not necessarily a life time of reading labels!

So even if the biopsy comes back negative for celiac, I'm not going back to eating wheat. The only reason I'm agreeing to the endoscopy at all is to get a definitive diagnosis of H. pylori. While he is there, go ahead and biopsy for celiac. I started having some wheat and haven't really noticed anything other than water weight gain.

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Thanks for the reply. Yeah, I think I'll be fine if I need to be "celiac careful", but not necessarily happy (who is?).

I'm just afraid I will get a false negative. Then I still won't know. I don't think this will be a definitive diagnosis unless it comes back positive. If it's negative, it may just be that I didn't have enough of a gluten challenge. If I haven't been "celiac careful" will I still have enough damage to get a positive biopsy after only 2 1/2 weeks of a gluten challenge? The doc seems to think 2 weeks is more than enough but would be perfectly fine to schedule the endoscopy later. I want to get it done because of the positive H. pylori antibodies. I would love to have something to explain my symptoms that just requires a few weeks of antibiotics and not necessarily a life time of reading labels!

So even if the biopsy comes back negative for celiac, I'm not going back to eating wheat. The only reason I'm agreeing to the endoscopy at all is to get a definitive diagnosis of H. pylori. While he is there, go ahead and biopsy for celiac. I started having some wheat and haven't really noticed anything other than water weight gain.

2 and a half weeks is not long enough for a gluten challenge. If you are determined to try and get a biopsy defined diagnosis go back to a full gluten diet for at least 2 months. You have good reason to be fearful of a false negative. Even back on a full gluten diet for 2 months you still have a 20% chance of a false negative.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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