Advice Please

[lemontree1]

I am not going to go through my whole list of symptoms. It's much too long and it looks a lot like others I have read here. Two months ago, I asked my Dr to test for Celiac and Hashimotos (I had a slightly elevated TSH). The results finally came back last week. Positive for Hashimoto's. The following for Celiac:

Gliadin AB IgA 14 (Neg <11, Eqiuvocal 11-17, Pos >17)

Gliadin AB IgG 25 (same range as above)

Endomysial AB IgA POSITIVE

Endomysial AB Titer 1:20 (<1:5)

Last week, I opted not to have the biopsy because I'm also having problems with a swollen throat. I have a swallow test scheduled for today. Instead, I decided to go gluten free. Yesterday I saw an allergy Dr. He said the celiac tests I had were not good enough (not sure if he saw the page with the Endomysial results), but he said I should eat gluten for three weeks then do the TtG test. I ate a piece of bread last night and I feel awful today-- I think I had been feeling better through the week. I'm not sure I want to go back to eating gluten for so long for this test. Do you have any thoughts or advice on this?

Also--allergy prick testing revealed a wheat allergy (though it didn't show a positive reaction until I had left his office).

Also wondering if anybody knows if a prick test can cause other reactions-- light headedness, vertigo,etc even without a strong local reaction?

Thanks in advance for sharing any thoughts with me.

[AVR1962]

I am not going to go through my whole list of symptoms. It's much too long and it looks a lot like others I have read here. Two months ago, I asked my Dr to test for Celiac and Hashimotos (I had a slightly elevated TSH). The results finally came back last week. Positive for Hashimoto's. The following for Celiac:

Gliadin AB IgA 14 (Neg <11, Eqiuvocal 11-17, Pos >17)

Gliadin AB IgG 25 (same range as above)

Endomysial AB IgA POSITIVE

Endomysial AB Titer 1:20 (<1:5)

Last week, I opted not to have the biopsy because I'm also having problems with a swollen throat. I have a swallow test scheduled for today. Instead, I decided to go gluten free. Yesterday I saw an allergy Dr. He said the celiac tests I had were not good enough (not sure if he saw the page with the Endomysial results), but he said I should eat gluten for three weeks then do the TtG test. I ate a piece of bread last night and I feel awful today-- I think I had been feeling better through the week. I'm not sure I want to go back to eating gluten for so long for this test. Do you have any thoughts or advice on this?

Also--allergy prick testing revealed a wheat allergy (though it didn't show a positive reaction until I had left his office).

Also wondering if anybody knows if a prick test can cause other reactions-- light headedness, vertigo,etc even without a strong local reaction?

Thanks in advance for sharing any thoughts with me.

A prick test puts the allergins into your body and you definately would have a reaction to anything that you were intolerant/allergic to.

If you think you could tolerate the glutens as long as docs wants to get your test it is worth it BUT the thing with that it is not always conclusive and the testing is not real realiable. You could very well have celiac and test negative, a year later test again and test positive.

I had to make a big choice not long ago....after being on gluten-free diet doc wanted me back on for 2 months to test. I made it to day 12. I was so sick! So I made the decision to go off glutens without the testing. I was having lots of issues due to deficiency, went thru 7 months of testing trying to eliminate any other possibility and all the while not getting better while on gluten. Once my doc saw everythig like putting pieces of a puzzle together he diagnosis me with celiac. The difference is he is no longer searching and eliminating but we can now focus on celiac and how to proceed.

My suggestion, no matter which way you go, is document everything thru a doc so they know what you are doing and it is in your records. Best of luck to you!

[Skylark]

The advantage to TTG testing is that you can establish a baseline. TTG is often used to follow how well you are responding to the diet if it's positive when you eat gluten. For example, you can introduce gluten-free oats and find out with a blood test a few months later whether you can eat them safely. You can also know with a blood test when you are following the diet carefully enough to get rid of the antibodies.

As far as diagnosis, there is very little question about celiac (or at least latent celiac) if eating wheat makes you sick and you have anti-gliadin and anti-endomysial antibodies. Do make sure your allergist saw the positive anti-endomysial results. He may have recommended TTG based on only the anti-gliadin results which would be very appropriate.

[GlutenFreeManna]

I am not going to go through my whole list of symptoms. It's much too long and it looks a lot like others I have read here. Two months ago, I asked my Dr to test for Celiac and Hashimotos (I had a slightly elevated TSH). The results finally came back last week. Positive for Hashimoto's. The following for Celiac:

Gliadin AB IgA 14 (Neg <11, Eqiuvocal 11-17, Pos >17)

Gliadin AB IgG 25 (same range as above)

Endomysial AB IgA POSITIVE

Endomysial AB Titer 1:20 (<1:5)

Last week, I opted not to have the biopsy because I'm also having problems with a swollen throat. I have a swallow test scheduled for today. Instead, I decided to go gluten free. Yesterday I saw an allergy Dr. He said the celiac tests I had were not good enough (not sure if he saw the page with the Endomysial results), but he said I should eat gluten for three weeks then do the TtG test. I ate a piece of bread last night and I feel awful today-- I think I had been feeling better through the week. I'm not sure I want to go back to eating gluten for so long for this test. Do you have any thoughts or advice on this?

Also--allergy prick testing revealed a wheat allergy (though it didn't show a positive reaction until I had left his office).

Also wondering if anybody knows if a prick test can cause other reactions-- light headedness, vertigo,etc even without a strong local reaction?

Thanks in advance for sharing any thoughts with me.

With those positive tests and a bad reaction to trying to reintroduce gluten, I would consider myself diagnosed with celiac if I were you. I have both an intolerance to gluten and an allergy to wheat. The wheat allergy was not revealed by the skin prick test, it was revealed by IgE allergy blood tests. My skin prick test was negative, however after leaving the office I had terrible itching and all my normal symptoms of glutening. So, yes, it is very likely the skin prick test glutened you. If you really want to do the TtG test you could always just do it right away without re-glutening yourself. Since you have only been gluten-free for a week you might be able to still get a positive test. IMO, however I would just get a new dr that knows more about the tests and will diagnose you based on those positive tests and your reaction to trying to eat gluten again.

[lemontree1]

Thank you for the replies. It makes feel better about the decision I made. I did more research yesterday, and your replies agree with what I think is the best decision for me. I'm going to remain gluten free. I'm convinced that it is the right thing to do. I just need to get better, and I can't do that if I continue poisoning myself. I went ahead and did the blood test for the ANA panel and UT Index but not the TtG. It just doesn't make sense to wait three weeks and continue feeling awful.

I really wish I could just say I had a dx though. It would give me some fighting power to insist my family members get tested. Still- I'm not willing to feel like I'm going to die for another month just to get that dx.