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Myopathy with Celiac Disease?
I am wondering about other people's experience of myopathy with Celiac Disease. How long does it take to heal and regain full movement of limbs? For the past twelve years I have had strange symptoms that would come and go, including paralysis of my legs (treated with IV steroids that helped the symptoms to slowly dissipate over the course of a month), debilitating hip joint pain that came for a period of days and then went away, and now myopathy in my legs, particularly my thighs, and inhibits normal walking; even walking across a small parking lot is difficult. This symptoms started eight months ago. When I have "maxed out" my legs cramp up terribly, sometimes for days after. My symptoms of leg pain and stiffness seem to be worse when I am stressed or close to/during menses. I have never experienced muscle pain and stiffness like this, even with my bouts of paralysis which seemed to be really more nerve related (brain and muscles did not feel connected and movement was very broken during those times). This feels different and more like a muscular issue. I was finally diagnosed with Celiac disease 3 months ago and am told that being gluten free should help alleviate these symptoms that have basically kept me in a wheelchair outside of my house. I'm wondering if anyone would be willing to share their experiences and what types of doctors they saw and if they have any recommendations on who to see. So far, almost all tests are normal or unchanged... Even all inflammatory markers seem to remain normal, in spite of my Celiac
panels to be very high, and intestinal damage severe. Thank you for any information you can provide!
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A mí me diagnostican ataxia cerebrlosa y después de años me dicen que soy celíaca y con dieta aliviaría la rigidez y la marcha. De esto hace 4 años. No mejoró nada. No hay estudios de estos casos. Por suerte dolor no tengo ni tuve pero si inestabilidad en la marcha.
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3 ReactionsThank you so much for your reply. I am so sorry that you are still suffering so much with the damage caused by Celiac Disease! It does seem that there is just so much not understood. Anyway, I really appreciate your reply... It does seem that this is a rarer manifestation of Celiac... which makes it challenging to find people who understand. I hope that in time you are able to heal!
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1 Reaction@silvana123 Welcome to Mayo Clinic Connect! I’m glad that you’ve found this site and hope you get the answers that you’re looking for. What caused you to have cerebral ataxia and how are you being treated for it?
And what about the celiac disease—are the doctors suggesting treatment other than a celiac diet (which is a gluten-free diet).
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1 ReactionI've had celiac for 14 years, and was likely gluten intolerant for decades before that (I'm 70). It does take a long time to heal the GI tract and other damaged systems. but it does happen if someone is gluten free (GF). Celiac mostly hits my GI, skin, and nervous systems. I have had PT for balance and cramping issues. I get frequent leg cramps that are controlled with exercise, and stretching during the day and before bed. Consider keeping a food log and trying an elimination or FODMAP diet to see if you are sensitive to other things. I developed collagenous colitis 7 years ago and figured out that I'm sensitive to legumes and NSAIDs (but not dairy or other). Celiac hits us emotionally as well; I call it a verbally transmitted social disease because it can isolate us. There are online and other celiac groups (such as national and local NCA clubs). Gluten is in a lot of things, so a strict GF diet is important, and eating out can be tricky because of cross contamination risks. There are online apps for GF, such as Findmeglutenfree .
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