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redjoy

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redjoy Newbie

Hi, for yrs I thought I was suffering w/IBS, tried treating it but not much changed. I just had a lung infection that started in March & went on 3 months. I have lost so much weight I look like skin & bones. I am also depressed, very tired & no energy. When I read about this diesease it seemed I had the same symptoms. I remember my Dr saying a long time ago he was going to test me for this but never got around to it. I go back to the lung Dr tommorrow he took another CS then I am going to ask my Dr to run blood work to see. I see you really have to watch what you eat, I ate cookies, ice cream bread etc & would run to the bathroom. A man that works w/my husband sd he has it & has to look at everything, sd it's even in shampoo which surprised me.


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drewsant Rookie

I've been told all my life basically it was IBS. I went to specialists and everything, and have had tons of tests done, and ruled out everything but Celiac or allergies.

Finally 2 years ago, I went back to my GP, and talked with the Advanced Registered Nurse Practitioner, and told him that I would eat 3 bites of a sandwich or toast or crackers, and I'd be running to the bathroom. He mentioned Celiac, and said to do the gluten-free diet. That totally overwhelmed me. I also went to an allergist and found out I'm allergic to wheat, soy, chicken, fish, and tree nuts. The 1st 4 foods were my primary diet. If I eat just fresh fruits and veggies, and basic red meat, I don't have any symptoms at all.

I think that until just a few years ago, Drs. still thought Celiac was a really rare disease, but now they're coming around to it.

Crystalkd Contributor

I'd been told that I had IBS, a spasming colon or that it was all in my head. I've been on the diet for three weeks. I'm still learning where the hidden gluten is but I'm doing a lot better.

blueeyedmanda Community Regular

I for a long thought I had IBS from being a constant worrier and my job really stressed me out. It seems as if the symptoms between celiac and IBS are very similar. I am so glad it is Celiac I have and not IBS, I can control celiac. I eat gluten free. I honestly felt as if I was taking my life back when I went gluten free.

rsm Newbie

According to the doctors I had IBS, 25 years. After being gluten free for 3 months things are changing, stomach doesn't hurt, digestion is starting to return. I tried atkins a few years ago and noticed a definite change for the better. Once my daughter discovered the celiac connection it all clicked. We are both doing better gluten free.

gfmolly Contributor

I hope you are feeling better soon! I, too have been told that I have IBS and was told to try gluten-free and it made a world of difference! Many on the boards have trouble with dairy as well due to damaged small intestines, so you may want to try that as well. A month and a half into the diet and I have normal bm's instead of d everyday. I feel much more healthy and have energy. It's worth looking into.

Best wishes!

Terri

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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