I have been diagnosed with gluten ataxia and sensory ganglionopathy.

What are/were your symptoms?

My husband has the following symptoms and was diagnosed with Parkinsonism:

Difficulty walking or maintaining balance
Uncoordinated movements or clumsiness
Tremors or shaking in the hands
Problems with fine motor skills like writing or buttoning clothes
Slurred or slow speech
Difficulty swallowing
Eye movement problems or blurred vision
Frequent falls or stumbling
Muscle weakness or stiffness
Tingling or numbness in the hands and feet

Lilly (George's Wife)

You are not alone! ( @georgescraftjr Lilly, neither is your husband.)

My response is long ... But I am no longer suffering the debilitating effects of Celiac and the Parkinsonian like symptoms I experienced; I explain how I got to this point. Maybe it would be of some help to you? For reference, I am currently a 43 year old wife and mom of two young children.

I was eventually diagnosed with gluten ataxia, after two episodes of leg paralysis and delayed movement in my arms that happened ten years apart from each other. I never had GI issues and, unfortunately, was not checked for gluten sensitivity until twelve years after my first episode of paralysis (all other testing was coming back normally, aside from nerve conduction testing which showed I have neuropathy in my hands and feet. I have gone through episodes of horrible nerve pain.) I was given a very high dose of IV steroids (methylprednisolone) which knocked me out of paralysis. Each episode took about a month to recover from.

By the time I was diagnosed with Celiac in 2024, I had developed other debilitating symptoms that were very reminiscent of Parkinsons. My legs were terribly stiff and frequently cramped even more than the stiffness (they increasingly hurt terribly) I could not walk without having a stooped posture, my gait was unsteady, my knees were always bent, and I shuffled if I walked. My speech was at times slurred. I had always been active but now was in a wheelchair anytime I was outside of the house.

Doctors could not figure out what was wrong. The only thing they could not rule out was Parkinsons. They supposed that going gluten free would help my symptoms... But after a year of being gluten free my symptoms were only worsening. I was eating like a health nut trying to take care of my brain and gut (I ate lots of plain yogurt, bone broth, fermented veggies, kimchi, sardines, etc).

During this time I did a great deal of research about Parkinsons and other neurodegenerative diseases. One word kept sticking out to me "glutamate". Then, by the grace of God, I stumbled across an article written by Dr. Vikki Peterson that talked about neurological manifestations of Celiac and dietary glutamate. She spoke of how a person with Celiac, who as a result, also had neurological issues, may not be able to process dietary glutamate well, and may continue to suffer the neurological symptoms even after maintaining a gluten free diet, because their bodies cannot process dietary glutamate effectively. When, glutamate levels build in the brain and are not effectively dealt with, it causes "glutamate neurotoxicity" and over firing within the brain, this continuing the neurological symptoms in the person with Celiac. Interestingly enough, all neurodegenerative diseases have this common issue of having high glutamate levels in the brain.

Glutamate is one of the most abundant amino acids in the body and our bodies make it. It is also the most abundant neurotransmitters in the brain. We also eat foods that contain glutamate and glutamate levels are highest in foods that are heavily processed and have additives like MSG or flavor enhancers, leftover foods, or foods that have been sitting out, dairy, fermented vegetables, and high protein foods like bone broth, any foods that have been cooked for long periods of time.

After learning this, I decided to test myself by eating a half a block of Parmesan cheese, which has the highest concentration of glutamate in a naturally occurring food. Within 45 minutes my legs locked up terribly, my husband had to move my legs for me, even while resting on the couch. At that point, I knew that I had a trigger for what was worsening my symptoms!

I kept careful track of the dietary glutamate I was consuming. I chose my protein foods very carefully, eating an adequate amount but without overdoing. I focused on plain, whole foods, and lots of veggies. I learned about the foods that are lowest in Glutamate and the with highest nutritional value. Within two weeks of changing my diet I not only walked, but I was able to run!! (That was just a year ago on April 11!) I am continuing to eat very carefully and feel better than I ever have. I am quite literally a walking miracle and I am so grateful to be able to be able to keep up with my young kids.

This diet is not always easy. I have had to learn to eat to live and not live to eat. I eat only modest amounts of chicken, eggs, beef, nut butters etc. I do eat these high Glutamate foods because I need the protein and nutrition they offer, but I do so with care.... Overdoing causes me to be tired and achy. I never eat anything processed outside of an occasional rice cake with sunflower seed butter. I have learned that a person's tolerance level is unique to them... You try a bit and see how you react and keeping a food journal is helpful. It is not easy but the relief from my symptoms makes it soooo worth it.

There is so much that is just not understood about all of this. I advocate for more widespread Celiac testing so that others may not have to go through such severe complications. My daughter, who went through three years of on again-off again symptoms of her legs giving out on her, starting at age three, was only diagnosed after I had finally tested positive for Celiac. So many people have no idea they have Celiac and for multiple reasons it seems, testing is not being done.

I am so sorry for the symptoms you are experiencing. With gluten ataxia being a more rare presentation of Celiac, it makes it challenging to have a conversation with a doctor about this... All that has been ever said to me is to go gluten free. I think that although this may help some people entirely, there is so much more to it than that for so many others. I don't know how useful this information on glutamate may be to you but maybe, if for nothing else, it is food for thought.

How long have you been on a gluten free diet? I hope you are able to find relief from your symptoms!

@georgescraftjr
Sorry to hear that. Mine is mainly balance and coordination problems. Some swallowing difficulties. It was diagnosed following nerve conduction tests and MRI scans and MRS brain scans.

Thank you for the information and I’m so glad that you have found some respite. I have been entirely gluten free for a year but so far the autoimmune response in bloods and also my symptoms are unchanged. I feel that it is a long road ahead with no quick fix. I have checked absolutely everything that I eat ( vegetarian and cook everything from scratch). Also meds, toiletries and make up. All are gluten free. But thank you for the info and I shall be looking up the article that you recommended and reading with interest. There are several articles by Professors Hadjivassilliou about gluten ataxia and other neurological conditions which might be of interest.