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  • Scott Adams
    Scott Adams

    Neurological Damage Caused by Celiac Disease Not Reversed by Gluten-Free Diet

    Reviewed and edited by a celiac disease expert.

    Celiac.com 12/28/2006 – Antonio Tursi and colleagues at the Digestive Endoscopy Unit, Lorenzo Bonomo Hospital, Andria, (BA), Italy have published a study which concludes that any neurological damage caused by celiac disease may be irreversible—even after treatment with a gluten-free diet. Although the study is relatively small, its conclusions are important—especially to those who suffer from the neurological effects of celiac disease. More research needs to be done to determine why antineuronal antibodies persist in treated celiacs. It would be interesting to see if the removal of other common offending proteins (such as casein, soy, corn, eggs, etc.) from the diets of the patients in this study would have any effect on their antineuronal antibody levels.

    Below is the abstract of the study:

    Dig Dis Sci. 2006 Sep 12

    Peripheral Neurological Disturbances, Autonomic Dysfunction, and Antineuronal Antibodies in Adult Celiac Disease Before and After a Gluten-Free Diet.

    Tursi A, Giorgetti GM, Iani C, Arciprete F, Brandimarte G, Capria A, Fontana L.

    Digestive Endoscopy Unit, Lorenzo Bonomo Hospital, Andria, (BA), Italy.

    Thirty-two consecutive adult celiac disease patients (pts), complaining of peripheral neuropathy (12 pts), autonomic dysfunction (17 pts), or both (3 pts), were evaluated to assess the presence of neurological damage (by clinical neurological evaluation and electrophysiological study) and antineuronal antibodies and to assess the effect of a gluten-free diet on the course of the neurological symptoms and on antineuronal antibodies. At entry, 12 of 32 (38%) pts showed signs and symptoms of neurological damage: 7 of 12 (58%), peripheral neurological damage; 3 of 12 (25%), autonomic dysfunction; and 2 (17%), both peripheral neurological damage and autonomic dysfunction. The overall TNS score was 105 at entry. Anti-GM1 antibodies were present in 5 of 12 (42%) pts: 3 showed peripheral neurological damage and 2 showed both peripheral neurological damage and autonomic dysfunction. One year after the gluten-free diet was started, histological lesions were still present in only 10 of 12 (83%) pts. TNS score was 99, 98, 98, and 101 at the 3rd, 6th, 9th, and 12th month after the gluten-free diet was started, so it did not improve throughout the follow-up. None of the pts showed disappearance of antineuronal antibodies throughout the follow-up. We conclude that adult celiac disease patients may show neurological damage and presence of antineuronal antibodies. Unfortunately, these findings do not disappear with a gluten-free diet.


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    Thank you for this article. I am one of the "atypical presenters" that went to my doctor with neurological symptoms only to discover that I am a celiac. I was also told that the brain damage from 50 years of being undiagnosed was irreversible. It's nice to see this information getting out to a younger generation, when it might still be possible to prevent irreversible damage.

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    I am in tears after reading this. I have been having dizziness and tingling in extremities lately. I started after accidental gluten intake in January, and with the last two "accidents" it has gotten worse. Doctors are being very slow to diagnose me and and it's driving me crazy.

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    With all due respect to Mr. Adams et al., get a second opinion on this. When presented with the notion my damage was irreversible, my first thought was that if I hurt my finger(which I don't need to survive) it can heal, but if I hurt my brain(which I do need to survive) it can't heal? I found it ridiculous. I had *severe* neurological defects, but through the adoption of a strict gluten-free diet, supplements, and cognitive behavioral therapy, I have made a 'miraculous' comeback. It has taken time and work, I'm not back to 100%, but is very doable. If you do a little research, you'll find my experience is not unique.

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    Guest Soraya Malowney

    Posted

    I have celiac and my only son has celiac disease as well as my two grandchildren. We all have varying degrees of neurological damage. I had the worst damage and on a gluten-free diet I am almost 100% improved. It was like a miracle but it has taken 3 years and absolutely no cheating or mistakes. I eat no maltodextrin because I do not trust it.

    I had ataxia, confusion (did not know where I was when I would be out driving at night), difficulty swallowing, difficulty with speech, poor memory, headaches, vertigo, hand tremors, tingling and numbness of extremities and personality changes. It all took time to go away but it did.

    My advise is to stay with the diet. The personality change may still be there but I am willing to live with this. Otherwise I am feeling better than I have in years.

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    With all due respect to Mr. Adams et al., get a second opinion on this. When presented with the notion my damage was irreversible, my first thought was that if I hurt my finger(which I don't need to survive) it can heal, but if I hurt my brain(which I do need to survive) it can't heal? I found it ridiculous. I had *severe* neurological defects, but through the adoption of a strict gluten-free diet, supplements, and cognitive behavioral therapy, I have made a 'miraculous' comeback. It has taken time and work, I'm not back to 100%, but is very doable. If you do a little research, you'll find my experience is not unique.

    Hi Lance. I am doctor in Brazil and recently I got a patient with cerebelar symptoms and celiac disease. This patient has a big limitation on walking. He is 35 years old and I think he can make progress in his health. What have you been doing for this?

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    My daughter was diagnosed with Celiac 4 years ago. This last May I decided to try the gluten free diet because I was having some arthritis issues in my hands. (Blood tests for me a few year back indicated that I did not have celiac.) Since May, my neuropathy symptoms went away! I wasn't cold for the first time in years, also, anxiety (I've had a phobia since I was 5) was almost completely eliminated! I was ecstatic! This Christmas, however, I got a flare of neuropathy and anxiety. I didn't eat gluten, that I'm aware of, but I did have more sugar and chocolate than normal. I'm just beside myself, not knowing what to do. Am I allergic to something new? I don't have health insurance, but I'd love to get tested for sensitivities. Will this go away again?

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    My daughter was diagnosed with Celiac 4 years ago. This last May I decided to try the gluten free diet because I was having some arthritis issues in my hands. (Blood tests for me a few year back indicated that I did not have celiac.) Since May, my neuropathy symptoms went away! I wasn't cold for the first time in years, also, anxiety (I've had a phobia since I was 5) was almost completely eliminated! I was ecstatic! This Christmas, however, I got a flare of neuropathy and anxiety. I didn't eat gluten, that I'm aware of, but I did have more sugar and chocolate than normal. I'm just beside myself, not knowing what to do. Am I allergic to something new? I don't have health insurance, but I'd love to get tested for sensitivities. Will this go away again?

    Hello Jenny, I highly recommend you have this type of test done:

     

    Array 4 - Gluten-Associated Cross-Reactive Foods and Foods Sensitivity

     

    I have read that lectins in chocolate, coffee, carrageenan, etc. can cause the same reaction as gluten in some highly sensitive people, besides dairy, soy, corn, etc.

     

    You don't have to have full blown celiac disease to be sensitive to gluten or wheat and sometimes blood tests are not accurate.

     

    You might also want to read, Live Right 4 for your Blood Type by Peter D"Adamo.

     

    Hope this info is helpful.

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    I am having severe pain and tingling in my legs and after my EMG test was told I have damaged nerves in my legs and arms, or "axonal polyneuropathy". The doctors seem puzzled as I do not have diabetes, but I was diagnosed with celiac disease 15 years ago. I have been on a strict gluten-free diet, but the damage was done. I don't know what is next for me, as they have told me they cannot repair the nerves. It's scary.

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    With all due respect to Mr. Adams et al., get a second opinion on this. When presented with the notion my damage was irreversible, my first thought was that if I hurt my finger(which I don't need to survive) it can heal, but if I hurt my brain(which I do need to survive) it can't heal? I found it ridiculous. I had *severe* neurological defects, but through the adoption of a strict gluten-free diet, supplements, and cognitive behavioral therapy, I have made a 'miraculous' comeback. It has taken time and work, I'm not back to 100%, but is very doable. If you do a little research, you'll find my experience is not unique.

    Thanks Lance! I need hope! I have been diagnosed for less than a week and my symptoms are completely neurological. I would love to hear what you did. I am 36, and it took 4 years for them to tell me what was going on...

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    I am today 56 years pld, I was diagnosed with celiac disease 15 years ago, and I follow a gluten free diet. The damages in order of appearance were; numbness of extremities, premature ejaculation, tinnitus, ventricular extrasystoles. Only the ventricular extrasystoles disappeared after hidroxicobolamin (B12) injections. It could be a connection?

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  • About Me

    Celiac.com's Founder and CEO, Scott was diagnosed with celiac disease  in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. Scott launched the site that later became Celiac.com in 1995 "To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives."  In 1998 he founded The Gluten-Free Mall which he sold in 2014. He is co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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