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How many of you had indications, but no diagnosis and then later developed full-blown celiac?   12 members have voted

  1. 1. How many of you had indications, but no diagnosis and then later developed full-blown celiac?

    • There was indication,no treatment & later developed celiac
      4
    • I didn't develop full-blown celiac, I went on g/f diet
      4
    • I was full-blown celiac at the first idication
      1
    • I have no idea what this poll is about
      3

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6 posts in this topic

There appears to be many here that have the pre-celiac stage of gluten sensitivity and perhaps (like me), need to know the risks of non-treatment. Due to misdiagnosis or perhaps poor advice from their doctor, those who had even a slight positive in any of the blood tests were not counseled to go on a gluten-free diet ... did they develop full-blown celiac later in life?

Gretchen

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It's hard for me to say whether or not I had celiac disease before I was tested...either I was asymptomatic or I developed the disease over the past 5 mos.

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I had neg. blood tests (without serum IgA to check for deficiency, so they are inconclusive), then after the doctor refused a biopsy I went gluten-free. I had tried the diet before and always felt better off wheat/gluten. Then went back on gluten for two months for the biopsy, which also came back negative. Enterolab tests showed positive for antibodies and genes.

I do not have an official diagnosis and I will not go back on gluten to try to get one. The two months back on gluten made me so sick it took a good 4 months to start feeling better and even now, eight months later, I am still having problems digesting other foods. I am definitely gluten intolerant and I am not willing to spend my life being sick waiting to get "full blown" Celiac. I carry the genes and react to gluten, that is a diagnosis in my mind.

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My mother has Celiac and an area hospital was doing a free screening for family members due to a study they were doing. The Tissue transglutaminase IgA Elisa result was 39.8, which they rated as a moderate positive. Follow-up blood testing, however, was negative - Reticulain AB, Endomysal AB, IgA, Anti-Gliadin IgG and IgA. That was in 2000. (I don't know much about these tests.)

A month ago, during my physical, I asked to be screened again. I wasn't having any symptoms (that I recognized as such - now I think I may have had symptoms for a few years, perhaps on and off). The Tt IgA came back as 124 this time - anything over 30 was again a moderate to strong positive. The other 3 tests were negative. I had an endoscopy last week, and some evidence of "scalloping" was seen. I'm waiting for the biopsy results, but after all I've read on these posts, I'd be quite surprised if it was negative.

But then again, I haven't seen much on the endoscopy itself, only the biopsy.

So, so far I'd say it looks like I did develop Celiac. I'm not gluten-free, never have been, but will go gluten-free upon receiving the biopsy results.

Is there any reason to wait?

Or, since only one blood test was positive, should I not be so sure it is Celiac?

Maybe this is the wrong area to be posting these questions.

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Armarti2,

My understanding is that the tTg is the most specific... especially to damage. If it would help, you could probably do a web-search on that test and you can pull up a ton of studies and articles. Your mother has it, which is a pretty good indication that you're geneticallly pre-disposed. Sometimes those blood tests are strange and the more I learn the more I have found that there are seldom who have all positive... however, they have still benefited greatly from going gluten free. It is also not uncommon for your not to be experiencing the typical celiac symptoms... there is such a thing as silent celiac, yet it doesn't mean that your body is not being adversly effected. It's great to hear that such screening & studies are being taken place and that they found you :)

Good luck!

Gretchen

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Thanks, Gretchen.

Well, it's official - the biopsy results are positive. I think they were a little suprised at my reaction - I took it as good news, because now I can move forward! (Ok, I am having a "send off" tonight and having a beer or two.) :D

So, I can now answer your original question:

those who had even a slight positive in any of the blood tests were not counseled to go on a gluten-free diet ... did they develop full-blown celiac later in life?

Yep!

-Amy

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