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Frustrated

lopo7883

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lopo7883 Rookie
lopo7883
Posted

Hi everyone,

A week ago I got a call from my endo who tested me for celiac (she thought i might have it cause I have some stomach problems and hashimotos) and she told me that the results indicate I might want to try and avoid gluten and see what happens. She thought one of the values seemed high although it was within the ref range.

I called today because I was wondering what the actual results were. They are all completely normal and I definitely do not have celiac, which is what the nurse practioner there told me.

I had this done at a qwest lab.

IGG- <20 (ref range: <20= negative, 20-30= weak positive, >30 = strong positive)

TTG AB IGG - <3 (ref range: <7 negative, 7-10= equivocal, >10 = positive)

Serum IGA- 162 (ref range 81-463)

IGA- 8 (ref range: <11= negative)

TTG AB IGA- <3 (ref range: <5 = negative)

My serum IGA seems a little low, like clearly in the very very low section of the range, and my IGA seems a little high. That I guess is what my doctor thought seemed suspicious. I have hashi, pretty bad hairloss, low iron stores, low b12 without serious supplementation, my teeth are getting weaker and since I was a child I have a really bizarre set of ridges inside my teeth which my dentist has always made seem were related to a fever, but I didn't have a really high fever when I was developing my permanent teeth apparently- at least according to my parents.

My stomach problems are very much on and off.

I guess I dont have it. Would anything throw that off? I had been avoiding gluten, but definitely not entirely gluten free for a week or so before the test. And after my doc told me a week ago to avoid gluten, I stopped eating it. but should I just start again?

Thanks!

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RiceGuy Collaborator
RiceGuy
Posted

I won't be the only one to suggest that the diet is the best way to know for sure. If it were me, I'd go completely gluten-free, no cheating, and see how it goes. I started seeing results after about six months, but I have a lot of damage from what I can tell, so it's gonna be a long time for me.

If you don't have the intestinal damage yet, that's great news, and that may be what the tests are indicating. I am not an expert on that by any means. I never got any tests done, as my experience with doctors has always benn aweful. They never had a clue what was wrong, so I suffered for years, and not even my parents would believe I was really ill. The doctors kept telling my parents I was making it up to get attention.

Don't put it off just because you didn't get an absolutely positive indication. If going on the diet helps you, that's all that matters. Many think the diet is so hard that they don't want to "go through all the trouble for nothing". I can tell you for certain that NOT going gluten-free is far worse if it's what you actually need to do.

Look at it this way: The diet is perfectly safe to try, while waiting for Celiac to develop is not.

tarnalberry Community Regular
tarnalberry
Posted

Yep, just echoing the "I also didn't have conclusive results, but the dietary challenge certainly demonstrated it was an issue" sentiment.

lopo7883 Rookie
lopo7883
Posted
  • Author

Thanks!

Its just tricky for me, because to some extent I'm not sure what symptoms are related to this at all and I could expect to see alleviated. Then again, I guess that if I tried gluten free and watched to see what happened to my body in general that would be good. I think it's just frustrating, because my stomach problems are very much on and off, and really dont seem as bad as some people's that I read about on the board... I thought I had an ulcer or IBS through college, but never got off my butt to get tested. But when I got my last blood test and saw how low my iron and b12 were and in general started to realize that I think I'm generally undernourished, I started looking for other possibilities that made more sense, and celiac disease happened to fit the bill. I have hashi and stomach problems and other assorted symptoms.

My only real issue, is that I feel borderline phony... since my stomach problems are not as horrible- at least not constantly horrible as other people's that I read about here, I just feel odd telling people I believe I have celiac when my blood test came back overwhelmingly negative. And I'm still really confused as to why my endo would tell me to avoid gluten when she saw such negative results and we didn't really discuss in detail my stomach problems at all.

Very confused.

Rusla Enthusiast
Rusla
Posted
Thanks!

Its just tricky for me, because to some extent I'm not sure what symptoms are related to this at all and I could expect to see alleviated. Then again, I guess that if I tried gluten free and watched to see what happened to my body in general that would be good. I think it's just frustrating, because my stomach problems are very much on and off, and really dont seem as bad as some people's that I read about on the board... I thought I had an ulcer or IBS through college, but never got off my butt to get tested. But when I got my last blood test and saw how low my iron and b12 were and in general started to realize that I think I'm generally undernourished, I started looking for other possibilities that made more sense, and celiac disease happened to fit the bill. I have hashi and stomach problems and other assorted symptoms.

My only real issue, is that I feel borderline phony... since my stomach problems are not as horrible- at least not constantly horrible as other people's that I read about here, I just feel odd telling people I believe I have celiac when my blood test came back overwhelmingly negative. And I'm still really confused as to why my endo would tell me to avoid gluten when she saw such negative results and we didn't really discuss in detail my stomach problems at all.

Very confused.

Well the blood tests can come back negative even if you are celiac, they are not infallable. Now some people have some symptoms and some have none and many don't have the same or severe as anyone else. Thyroid and b12 problems go with this disease also. Try going gluten-free and see if you see a difference. Some take longer to see a difference than others and some see them right away. I see some right away and know when I have been glutened because of my dh, bowels, burning stomach and general lack of energy and malaise. Keep a diary, I do.

We all have gone through something whether we show positive or negative.

Don't worry there is lots of great help here and in here I learned more in one month than I think most doctors know in their whole lives.

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