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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anybody Diagnosed With Gluten Ataxia?
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13 posts in this topic

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.

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

Mariann :huh:

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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

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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? :o

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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

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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

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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

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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

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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

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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.

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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.

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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

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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?

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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