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Elbow Pians


lorna

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lorna Rookie

I was diagnosed with Celiac when I was 5 years old and was in and out of hospital getting all the tests and biopsy's etc.

Up until I went to secondary school I did stick strictly to a gluten-free diet with the aid of my mum to keep me right. Unfortunately in my teens I rebelled a bit and decided I knew everything and started introducing wheatproducts into my diet, mainly crisps & fat cakes etc. I didn't seem to be suffering any side effects although was a bit irratable at times but this was just put down to my age. Had another few test done and low and behold it came back I was no longer Celiac.

I have then since carried on with a normal diet, although through the years have had very bad eczema, psiorias of the scalp, and now I am begining to suffer from short pain spasms in my knee. My hair has been thinning at the front of my head for the last 10 years and have learned to accept this by colouring my hair light shades to camaflage my scalp.

I have been to my GP twice now enquiring if there are any treatments available to re-grow my hair, the first time was about 20 years ago and the second time was in December of last year. Both times I have been told that there are no roots therefore it is unlikely that re-growth will occur. Never has there been any link to my Celiac history, but I am starting to wonder if all this time I have actually been Celiac and wrongly diagnosed in my teenage years.

I have bloods back and I am definately ceoliac, been and had DXA scan done for osteoporisis this is clear as i do regulary go to the gym I think this has helped. Bloods also show that I am severely aneamic and on 400mg of ferrous sulphate daily.

I have been on a gluten free diet since February this year and the changes I have notice is that I do now sleep at night and feel drugged when I get up in the morning for havingso much rest. How ever since changing my diet I now have joint pain that I never had before in both my elbows, not sure whats causing this, can anyone shed some light. have had 2 different anti inflamitary courses from docs but to no availe. This may not be related to ceoliac the doc did say I had golfers elbows but I have not done anything different apart from change my diet and thats when it started.

The big test will be on friday of this week when I have my Endoscopy again!!!


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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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