Myopathy with Celiac Disease?

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.

Thank 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!

@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).

I'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 .

Problem is, you may have neurological damage from prior gluten exposure &/or may be ingesting gluten through cross contact

After nearly two years of being in a wheelchair and worsening symptoms I am, by the grace of God, walking and running as of April 11, 2025.

I was having a difficult time getting into new neurologists and none of the doctors knew what to do with me. My gait was worsening and I was experiencing "gait freeze" (unable to step over even the smallest toy on the floor) and it was becoming increasingly difficult to think clearly. I was hunched over when I did walk and quite stiff. I have always kept moving as much as I could, exercising in whatever little way I could, (forcing myself to use the stairs etc) through this time and did not use the wheelchair in my house.

In late February 2025 I began researching early-onset Parkinsons, as my gait most resembled that of a person with Parkinsons. I was very much afraid of losing my mind, most of all, as I have young children. I prayed and trusted that God knew what He was doing even if this disease was to progress further. I asked Him for more time with my children and told Him I was going to do whatever I could to take the best care of the body He has given me. Though I had mostly been on a whole food diet anyway, I stopped eating gluten free bread, and anything that was prepackaged whatsoever. I simplified my diet to sweet potatoes, potatoes, broccoli, romaine, chicken, turkey, a very small bit of dairy milk, coffee, rice, sardines, and a bit of yellow fin tuna. I noticed after a few weeks that although I still had an issue with walking, I could get a bit further without stopping! During this whole time I was also gathering info on other ways to take care of my gut (I had been eating a lot of yogurt and fermented veggies already and drinking bone broth) all of which were supposed to be very healing to the gut and I continued to notice this come up when listening to functional doctors on you-tube etc... and there was something else that kept coming up. Glutamate. There was discussion on how important glutamate is for healing leaky gut as it provides the mucosa lining of the gut. I even bought a bottle of l-glutamine to try to supplement with as was recommended.... But though I had it in my hand I listened to a very small voice that cautioned me not to take it (God!) This word "glutamate" continued to pop up in my research. Though many are deficient, people with neurodegenerative disease such as MS, Parkinsons, Huntington's etc have elevated amounts of glutamate in their brain! The last article that I stumbled upon (grace of God!), was from Dr. Vikki Peterson that spoke of the connection with Celiac Disease and Neurological Disease. When a person suffers from a neurological manifestation of Celiac Disease (as I had-- no seeming gut issues for years, but had been paralyzed twice in 12 years) and still has persistent symptoms, even after being on a gluten free diet, glutamate may be the trigger. Glutamate is a naturally occurring amino acid, not essential, as the body makes it, and is in nearly all food but is in elevated amounts in certain foods (and MSG-- the artificially made glutamate). Something called "free-glutamate" is really the issue here. Although the brain can usually keep the levels in check a person who has leaky gut (and though this is much debated "leaky brain" from years of trauma) may not be able to. The protein "gluten" that a person with Celiac cannot handle is 30% glutamate. When levels of glutamate increase in the brain and go unchecked, it causes a state of excitotoxicity-- allowing far too many neurons to fire too quickly and allowing calcium into these neurons and leads to neuron death. Glutamate excitotoxicity.
I wanted to test my theory to see if glutamate was a part of my problem. My husband took a video of me walking... It was not great but a better walk having been on an elimination diet. I then ate 75g. of a block of Parmesan cheese (a nice big chunk). (Parmesan has the highest naturally occurring amount of free-glutamate of any food.) Within two hours, I was no longer able to walk at all. My legs became completely stiff and in pain and I had terrible brain fog. I had a trigger.
Here I had, through my Celiac diagnosis, been eating foods that were so good for people with Celiac (bone broth, fermented veggies, yogurt) and they are SO HIGH in GLUTAMATE!! After my experiment with Parmesan, I eliminated everything else that I was still eating that is high in glutamate-- broccoli, potatoes, dairy, coffee etc. I started eating only sweet potatoes, a hard boiled egg per meal or a small serving of chicken (no more than one serving per day as it is high in glutamate but I need protein), a bit of quinoa, avocados, olive oil, romaine, celery, chamomile and ginger tea, a pear or an apple per day.
After one week of this diet, I was still in the wheelchair when I went for a shopping trip. But on Day 13, April 11, I brought my children to the park so they could run around.... I decided to walk just in front of my parked van. Well .... I walked.... And walked.... And walked and I didn't have to stop! I kept walking! A little faster! I said, "I think I can run!" And I could!! I RAN!!!!!!!!!! I KEPT RUNNING!!!!!! I just kept going!!!! I ran and walked over a mile that first day!! My movement was no longer broken or stiff!!! It was smooth and it felt amazing!!! I called my husband and ran to him!!!!! It truly is miraculous and a beautiful puzzle that only God could put together!!!!!! I am so grateful!!!!!!!
It has now been a little over a month since I have been able to walk! My doctors are saying that I'm a miracle. I am feeling better than I have in years!! I continue to add foods back into my diet and keeping a record of how I feel. There are some that I will likely not ever have in my diet, though if I can heal my gut lining I may be able to someday. I will just keep going! God is so good!!
I hope that this information may be helpful to someone suffering from any neurodegenerative disease... A low glutamate diet is something that may be helpful! And God does work miracles!! 🙂

What has been your doctor’s’ reaction? Did you get a blood test to measure your glutamate?

My doctors are amazed! One saying that I'm a walking miracle!
Unfortunately, in my research, I'm finding that blood tests for glutamate levels are somewhat futile because in order to measure true glutamate excitotoxicity, you need to measure the amount of glutamate in the brain-- which requires a cerebrospinal fluid test. I have had two spinal taps before, though not while I experienced these symptoms, and I'm not sure that insurance would cover one now that I'm feeling so great! So, I will keep plugging along and see if I can possibly get into a neurologist who has a focus on Parkinsons (and I'm thinking a very solid understanding of brain chemistry and levels of glutamate and dopamine etc). I know there are technically drugs that can lower glutamate levels in the brain, but I'm not sure I would want to go that route anyway because all of brain chemistry is so complicated and one change can cause a domino effect.... So we'll see. I know in the least I will see if I can write a letter to one of these doctors, share my story and see if perhaps they would be willing to see me for a consult. (?) We'll see!