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ragidyann

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ragidyann Rookie

Someone please help me. I have been told for years that I have IBS. And then I had polups removed and the GI sad I have diverticulosus. Stay away from nuts and stuff. What ever. They didnt hurt me. I always noticed that bread and pasta made me bloat. So I wouldnt eat them if i went out .And forget beer oh God that was the worst.So anyways, finally I got really sick no bm for 5 days i coulnt stand up to long. thought this is it im dead. went to a Dr and she ran some blood work and I was low in b12. I get shots now. nothing else was said about the pain and the bloating and the weakness. So I put myself on the gluten-free diet and within 3 days wow I wasnt bloated anymore. i couldnt believe it. so 6 months after that i go back to the doc for more blood work and i had been having leg cramps. i was still low in b12 and now d. she did a test for celiac and it was neg. i think a range of 3. Although I have been on the diet for 6 months she said that was ok. But does recomind the biopsy. I dont know what to do I feel really tired and and does it really matter if im staying on the diet? And why dont drs tell You what do do? Im so fed up I just want to cry. The only good thing is that im not crying from pain. Just frustraited.


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Wolicki Enthusiast

A biopsy after 6 months gluten free will not tell you anything. You probably have additional vitamin deficiencies. Can you ask your doc to run a vitamin panel?

GFinDC Veteran

If you have been gluten-free for 6 months don't waste your money on a biopsy or blood tests. You need to be actively eating gluten for 6 weeks or more for the blood antibodies to buildup to detectable levels. And the endoscopy is the same deal, probably not going to show anything at this point. At least that's what I've read. There is Enterolab testing which says it can work up to a year later. Your doc doesn't sound real familiar with celiac disease.

ragidyann Rookie

Thanks. today was not a great day had d all morning and leg pain. does anyone else get leg pain or cramps in their calves or toes?

GFinDC Veteran

Thanks. today was not a great day had d all morning and leg pain. does anyone else get leg pain or cramps in their calves or toes?

There are people here who are told they have fibromyalgia or arthritis. So yeah, they get joint and muscle pain. My joints hurt from eating soy, so I don't do that no more. Celiac can cause malabsorption of vitamins and minerals. The resulting vitamin / mineral deficiencies have their own negative affects. It doesn't matter if you are taking vitamin pills or eating healthy food if your gut can't absorb it. your doc can test you for vitamin and mineral levels and that can help decide if there is something going on.

It sounds to me like you are not 100% totally gluten-free. Or you have another food intolerance in addition to gluten.

ragidyann Rookie

Thanks i guess i can really watch what I eat even more. I dont do milk or soy we eat pretty healthy. I will try it though Thanks again for yalls help.

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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
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      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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