beansmom

Thanks for the info, my theory was wrong Swelling is down so it must've been a temporary thing, and still not sure if it was even thyroid related.

Hi. Found your theory interesting. Actually, I have thought something quite opposite. I just started a gluten challenge and a week into it have noticed that my thyroid hurts to touch. I have autoimmune thyroiditis and have been on thyroid replacement for some time. I was thinking that the antibodies to the gluten may cross react with the thyroid antibodies...

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.

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?

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!

Thanks for all the replies and support. I still would like to have a formal diagnosis. I don't have GI symptoms for the most part. I went to an oral surgeon a while back. Of course I had no blisters in my mouth at the time... So should I still try to see a dermatologist? What if I don't have any itchy bumps when I go???

I really appreciate everyones's help.

p.s. the lab that did my bloodwork said that the anti-gliadin antibody is basically a worthless test - I was so glad to hear that and still have to pay for it!! But it does seem like no one really knows what it means on it's own... Except for here where everyone thinks it means I should go gluten free!

I am not gluten free. I don't want to be if I don't have to be. As you all know it would be extremely difficult as I am a mom of 4 and have a busy life - where would I be without fast food??

Hi. I have had some random symptoms that led me to be tested for celiac. The blood test was positive for IgA anti-gliadin antibodies but negative for the transglutaminase antibodies. Iwas told that it is common to have the anti-gliadin antibodies and b/c the other test was negative, I did not have celiac and did not need to pursue further testing.

My most annoying symptom has been small blisters in my mouth. Now, however, for the past month I have had randomly placed small pimple like bumps that itch like crazy! They have been mostly on my back, stomach and legs. Never on elbows or knees (most pictures I've seen show these to be common). They are usually not in groups either.

I called a dermatologist to make an appt but they didn't take my insurance and then my resolve to figure this out went out the window

I'm curious to hear what you all have to say. Thanks in advance!

Thanks for all the replies. How can the biopsy be positive if the blood tests are negative? I'll have to think about that one... As for the other possibilities, yes, they are possible. I don't think the blisters are infectious (coxackie or herpes). Coxackie goes away and herpes looks like clusters of small blisters. I have had some blisters up to 0.5cm. I also have tried a steroid mouth rinse with no relief and remember having some when I was on oral steroids for a pinched nerve. Anyway, I think I will go ahead with a biopsy of my mouth before going to see GI. I don't want to go and be told nothing's wrong, why are you here...

Well I guess I don't have to worry anyway... I just spoke with the doc that ran the tests. He spoke to a GI doc who said she only runs a total IgA and the tTG IgA. If those are normal she doesn't pursue anything more. Those tests were normal for me. No one can explain why the antigliadin is abnormal only that it should not have been done. So I'm left thinking I'm a lunatic for going down this path in the first place. I just want to stop having a sore mouth, please.

Thanks for the replies. I'm still at a loss for what to do. Should I schedule an appt with a GI doc? I don't really feel like I have a lot of GI symptoms. I have tried eating what I think causes the occasional D but sometimes it happens but sometimes it doesnt'. I also had a normal blood count and various vitamin and mineral levels come back normal. I don't really want to go throught a biopsy - I'm a chicken - if I'm just fishing in a large ocean of possibilities...

If anyone can shed some light here... I don't think I have typical celiac symptoms. I have occasional GI symptoms but I was tested because I was researching why I have a very painful and annoying problem. I get blisters in my mouth - inside my cheeks, on my palate, even on my tongue. They pop within 12-24 hours and leave a sore that heals in a few days. I have talked to my dentist, an oral surgeon, and an ENT, all with no real help.

My searching led to a possibility of celiac so I had a blood test - celiac panel done. I just got the results:

IGA, serum = 216 (normal 81-463)

Gliadin AB (IGA) = 26 (normal <11)

tTG AB (IGA) <3 (normal <5)

The doc that ordered them wasn't sure what they meant and spoke to the lab (Quest). They said b/c a "comprehensive" celiac panel wasn't ordered they didn't do the tTG IGG or the antiendomysial antibody. Furthermore, the lab said the Gliadin AB is not a reliable test for celiac - I'm so glad I get to pay for it . So now before I spend anymore money I want to know if A) I need to do anymore tests and B)what tests!

Has anyone known any celiacs with mouth blisters?! My only GI symptoms are frequent bloating and occasional diarrhea within an hour of eating. I have also been lactose intolerant for the last 5 years and was diagnosed with autoimmune thyroiditis (hypothyroid) last year. Thanks for your help!!