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Going Nowhere


jeannine

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jeannine Apprentice

Hello, I am a 41 year old woman. I have had a horrible itching, burning rash on my lower legs for a year now. I also am very tired all of the time, if I'm not constipated then I have diarhea, my hair is falling out and my joints just ache most of the time. When I first went to the doctor a year ago I was misdiagnosed with Lupus. My dermatologist thinks it may be Celiac disease. Before doing a biopsy, however, he has me on a 2 week course of cephalexin and clobetasol. He said that he will do a biopsy in 4 weeks to check for dermatitis herpetiformis. My husband is in the army and I have seen 11 doctors in the past 12 months in relation to my symptoms.

Do my symptoms suggest Celiac disease? If the rash starts to clear up with this lastest round of medications (every doctor I've seen has prescribed somethng), should I still have the biopsy? I would also like to add the when I had the diagnosis of Lupus I was put on prednisone and the rash cleared up until I was taken off of it.

Thank you.


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mftnchn Explorer

This does sound like it could be celiac. I would for sure have the biopsy done. Look on this forum and read about the skin form of celiac, because if I remember right, the biopsy has to be done in a certain stage of the blisters.

If that is positive, then you are celiac. This is a lifelong lifestyle change to remove all gluten from your life.

In addition, you can have blood tests for celiac, and a biopsy of the intestine.

If the tests are negative, then I think if I were you I would try the diet, to see if there is improvement. Many people here have been diagnosed by dietary response only.

Please keep asking your questions and looking around this forum, I think you will find lots of support and help.

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      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      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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