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Not Sure If I Have Celiacs

Linzee

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Linzee Newbie
Linzee
Posted

I am 24 now and about a year and a half ago I started getting hives when I would exercise, if something was rubbing my skin, and from certain lotions. The hives would mostly appear on my legs, after benedryl or zyrtec they would go away. I have always had bad gas and a bad stomach, usually constipated, but sometimes had the runs, but almost always bloated. I was told I had IBS when I was 12, which I later realized IBS means they really don't know what you have. In college my thyroid tested out of normal level but the following test was fine. Also in college a blood test made my GI suspect I might have celiac but an endoscopy and colonoscopy proved I didn't have it.

So when the hives and bloating got really bad about 9 months ago I was so frustrated. And GI's didn't help. I went to an allergist who ran several blood tests. The gluten blood test came up as weakly positive and the Doc thought I was in early stages of celiac. Since cutting out wheat the hives aren't as bad, but stomach is still bloated from time to time, although to be hoest I cheat from time to time, but when I do cheat with some pasta here or a cookie, I don't really seem to be bothered by it, there are no immediate effects. And I have no symptoms when I eat breaded chicken. Can anyone offer any advice, because I'm beginning to think I don't have a wheat allergy. Are there different levels? Do you suffer from wheat right away? And if docs didn't find anything from endoscopy and colonoscopy about 4 years ago, could I still have Celiac's? Thanks!

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mamaw Community Regular
mamaw
Posted

You have no way of telling what is going on inside your intestinal tract, many people show or present with NO symptoms. Plus just because you do not have celiac does not mean you also are not gluten intolerant. If you cheat you will never find out for sure.

It can take up to ten years for a doctor to get a correct dx's....

To clarify celiac disease also states no wheat, rye or barley. Just because a product states no wheat does not mean it doesn't contain gluten , you need to look for products with no gluten. If you are going to take this seriously.

You could do the gene testing to see if you had one or more genes too.

Many have had an IBS dx's before finding out what their true health issue.......

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    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      Is it gluten?

      By trents · Posted

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      nothing has changed

      By RMJ · Posted

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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