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Latent Celiac - I Guess That's What You'd Call It.
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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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