Myopathy with Celiac Disease?

Posted by cmmichaela @cmmichaela, Apr 10, 2024

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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cmmichaela | @cmmichaela | Jul 22 10:32pm

Glutamate is a really tricky thing and certainly something that I am not an expert in! But I do find it fascinating and I know reducing my dietary Glutamate has helped me tremendously, so I keep investigating and learning.
Glutamate is in nearly every food, but is found in especially high levels in foods that are also high in protein (meat, dairy, nuts, beans) as well as any processed foods, fermented, foods cooked for long periods of time, leftovers etc. I found a government website that categorizes foods by their Glutamate content, so that has been helpful; I also keep a food log. I've learned that I can tolerate some of the higher glutamate foods, like almond butter, but I have to have just a bit, a serving or part of one... a little at a time. I have calculated the amount of protein I'm consuming to make sure I'm getting enough, even if it on the lower side of "normal". I have eggs, quinoa, and/or a serving of chicken, or beef per day.
Also, being tired increases Glutamate levels and I have noticed some slight leg muscle achiness when I get fatigued. Exercise also increases Glutamate levels but the body simultaneously also uses more of it.... So I exerciseand practice running up stairs to build my strength for now. Yoga is apparently useful for increasing GABA which I believe helps to balance Glutmate. Fascinating stuff! And again.... I am learning (!!) and grateful.

I think the relationship between glutamate and Celiac (the only article I could find directly written about the two) was written by Dr. Vikki Peterson, a Functional Doctor who specializes in Celiac. The article references other neurodegenerative diseases and high glutamate levels in the brain and talks about neurological damage in Celiac as being a precursor to such issues with glutamate. I believe it is suggesting either damage to the blood brain barrier creating the possibility for dietary glutamate to cross directly into the brain or Vagus nerve damage as a result of Celiac (therefore destroying parts of the brain and blood brain barrier). She also talks about how gluten is roughly 30% glutamate. All things to ponder.

There is soooo much to learn. I have written to Chicago University's Celiac Research Center and offered my story in hopes that maybe this would be something they would find worth investigating. I hope that maybe this will help others suffering with neurological issues as a result of Celiac, or at least draw awareness to Celiac Disease and the fact that going gluten free is not always enough to feel better.
I am so grateful to be feeling better and hope others may benefit from my experience too!