Anybody Diagnosed With Gluten Ataxia?

[balanc]

I haven't found any or many postings relating to gluten ataxia. I was diagnosed as having this version of celiac disease a little over a year ago and would be most interested in hearing from members who are "in the same boat". Thanks.

[gf4life]

Pardon my ignorance, but what is gluten ataxia? What are the diefferences between it and regular celiac?

Mariann

[Guest ellcrys11]

I too have been told I have gluten ataxia. I have been tested for everything from vertigo to MS. I have extreme tremors, lost of balance and difficulty in walking. And this symptons seems to come and go. I never have a warning when they will strike. This gluten ataxia is a real trip.

Harriet

[spk1954]

From what I gather Gluten Ataxia is one manifestation of celiac disease. Evidently a lot of people present to doctors with no intestinal problems at all. They invariably have remittance of symptoms with a gluten free diet.

I guess it is like Dermetitis Herpetiformus. With one the antibodies appear in the skin lesions (on testing the blisters are positive for antibodies), with this they go to the brain and cause the ataxia.

I have done a fair bit of research on celiac disease, its manifestations and complications, but what suprises me is the number of other disorders that seem to have very similar symptoms and that aren't responding to any other types of treatment. A lot of celiac sites mention the neurological manifestations of celiac disease, including epilepsy from bi-lateral occipital calcifications in the brain. Facinating stuff!

I am positive a lot more things will eventually turn out to be gluten antibody related when they do more research. As they can't get wheat out of the picture (heavens, the country runs on wheat!) they will just have to come up with a vaccine/cure whatever. The more people that are diagnosed the better, not for them, but for everyone else eventually, as they will be forced to do something drastic to come up with a solution. Otherwise, half the population of Australia, and the world probably, will be on diets that don't contain wheat, rye or barley.

So it isn't a new type of celiac, just a manifestation. By the way, did they test for MS, vertigo etc before they said you had gluten ataxia? Did they put you on a gluten free diet? Have you been tested for celiac disease?

[Guest ellcrys11]

I found out in June of 2002 that I have celiac disease. I was diagnosed by biopsy and bloodwork. I have been on a gluten free ever since. The neurological manifestations were not dealt with until Oct of 2002. At the time the doctors didn't know if it was gluten ataxia or cerebellum ataxia. Both will act the same way and they still don't know.

I have been hospitalized twice for treatment. I was given 5 units of IGG both times. The last treatment was last week. That is very expensive medicine. I don't know waht else to expect.

Harriet

[Guest aramgard]

Harriet, Do you also have muscle cramps? Because my ataxia and muscle cramps went away when I added bananas to my diet every day. Also you might try some magnesium ( liquid is easier to absorb) to your diet. Even when I'm sick my ataxia does not come back unless I forget my potasium and magesium. Shirley

[Guest ellcrys11]

Shirley

Yes, I do have muscle cramps. They are from my neck down to the bottom of my feet. I have them in my neck, hands,arms,back, sides, chest, legs and feet. Even my insides will have muscle cramps. I have ate so many bananas I feel like I could swing from trees. I am now on neurontin, that has helped some, but it has never completely gone away. I now carry a card from my doctor that states I have a walking and balance problem. That way if and when I can start driving again and I should be stopped by the police, they won't haul me off to jail. I will try the magesium and see if that will help. Thank you for the suggestions.

Harriet

[rsavage]

Just a note, I have gluten ataxia. It was undiagnosed as such. I presented with dizziness and was told it was because of my allergies. After taking antibiotics and antihistimines, it abated only to reappear a month or so later. I battled with it for years until I found out I was a celiac. Diet has helped but I fear I have permanent damage. Royann

[Guest aramgard]

Royann, The diet has helped my ataxia also. I just wish the immune system would come up to par and would stop getting these bacterial infections. Does anyone else get so many infections every year? Shirley

[kelly]

I was diagnosed with gluten ataxia last November. I spent 11 months with terrible jerking and shaking. My walking got so bad I had to use a cane on good days. At first, it would come and go. But by July of 2003, it came and never left. The 4th. neurologist I saw did the blood workup for gluten antibodies. It came back "weak" positive and she told me to not bother with the diet. I did some research and decided I had nothing to lose by trying the diet. After 4 weeks, I was a new person. I have been religious about keeping gluten out of my diet and have been doing very good. I did just have a little relapse but am getting over it fast. I wonder where we can find out more info on gluten ataxia.

[slockhart]

I too suffered from gluten ataxia, although it was never severe enough to get me to a doctor. I discovered I was a celiac late 2000 and cut wheat out of my diet. The smallest amount of wheat would have me blacking out with stomach pain. During this time, while my intestinal lining was still healing, I was able to have rye and barley without pain and so figured my allergy was specific to wheat gluten. My hands still shook. Although, I generally avoided rye, just in case, unknowingly I had been consuming barley in the form of my old favourite Vegemite. As soon as I stopped eating vegemite, and became more diligent in regard to my gluten-free diet in general, my shaking stopped. It is a wonderful feeling.

[Guest ellcrys11]

May I tell you what my wonderful(?) hospital did for me this weekend while I was in the hospital for an Infusion? When I informed my RN and LPN that I am on an wheat and gluten freen diet, they both called the diatary office and informed them about my needs. That wonderful (again?) department sent my breakfast. They gave me scrambled eggs, bacon,cream of wheat and a biscuit. My nurses were livid.Within 10 minutes the head of the dietary department came to me for full details about my diet. The rest of the meals were great-----except for Sunday night. Again my meal came with a salad with croutons on it. Don't this just want to make you SCREAM.

Have a Happy Easter

[Guest gillian502]

I had a severe vertigo attack in April 2002, followed by a whole year of nearly constant dizziness. I was diagnosed as having celiac disease in August 2003, but after 7 months gluten-free I still get mildly dizzy and I cannot ride escalators or elevators unless there is someone there to assist me as soon I step off of them, bacause I am totally unbalanced. I have never been diagnosed specifically with gluten ataxia and wouldn't know who to see about getting that part of my diagnosis or what kind of medications would be indicated, but I know now that this must be where my vertigo and dizziness have come from. Nothing else explains it (my ears have been tested and are normal, and I'm negative for MS.) Can you all fill me in a little more on the testing process and medications for this, and do any of you have trouble with elevators, etc., as I do?