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Current Been Tested


Lisa79

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Lisa79 Enthusiast

Hi Everyone

Well I have had a recent blood test which showed a very High intolerance to wheat, my GI has me booked for a gastroscopy in 10 days. He suspects celiac, I am unsure of which blood test he has done.

I have had ongoing history with my stomach for 7 years, I had major bloating to the extent I look 8 months pregnant. During the search I have had laproscopic surgery twice, one for ovarian cysts and once for a gallbladder removal. Neither of which fixed my bloating problem.

I have also had CT scans and issues with major ongoing headaches that last days or weeks at a time.

After reading a list of possible symptoms I have so many.

Dry Lips and mouth.

Mood swings and difficulty to focus.

Extremely tired and body aches

Bloating

Constipation and occasional Diarrhea

Anemia

Anxiety

and I am sure many more.

I was tested for Celiac 7 years ago, although test was negative, deep down I felt that was incorrect but left it at that.

I think the bad thing here now I feel sick from eating, and I cant stop eating wheat until after the biopsy.

Anyway I am please to have found this site and will be posting more once the results are in.

Thanks

Lisa


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ravenwoodglass Mentor

Welcome to the board. You have found a great place to learn what you need to learn about the celiac lifestyle. You don't have to wait for the biopsy results to start the diet. You can start the day the biopsy is done and hopefully you will heal quickly.

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  • Posts

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      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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