Re: Gluten Ataxia - and 0ppm

[Guest guest]

Thanks for this!MarciOn Feb 14, 2011, at 10:46 AM, wrote:Marci, As long as most doctors are not aware of this, they won't be diagnosing it. I have not had an official diagnosis from a doctor yet, which is why it was so great to see it written up. I know I'm not crazy! The only treatment for me is complete absence of gluten. For me that meant no restaurants, no processed food, no sharing of cooking implements with gluten-eaters, new kitchen items, etc. I think brands like Glutino are probably safe - they are made in a special gluten-free facility. But I would not trust anything where there is the chance of cross-contammination. I don't know how old your son is, but if he is having these kind of effects, I worry about how it would effect development of the brain. Perhaps you could try a 100% strict no-risk diet for him for a couple of months (like I did) and see if that improves his balance and coordination issues. Does he also have difficulty with words and memory? Of course, recovery is only partial. By completely avoiding gluten, I regained the ability to walk in a straight line - with my eyes closed!, comfortably sleep lying down, drive, ride in a car, not feel like I was bobbing on the ocean all the time, speak more easily and think clearly. But I do think there was permanent damage - I can no longer do certain things like flip turns in the swimming pool or roller coaster rides. My mind is not as sharp as it used to be. Alcohol and fatigue bring back some of the symptoms. And when I am glutened on occasion, it comes back pretty quickly and can take a while to improve. Best, From: Marci Riseman <mriseman@...> Sent: Mon, February 14, 2011 10:18:05 AMSubject: Re: [ ] Gluten Ataxia - and 0ppm, I'm sorry to hear you have been affected this way. I did read the article and it was eye-opening. It made me wonder about my celiac son, who has balance and coordination issues, bumps into walls all the time & gets hurt. Who diagnoses this? I asked the neurologist last week but they didn't have much to say about it. And, most importantly, is there treatment for this? I didn't get the sense of that from the article.MarciOn Feb 14, 2011, at 10:13 AM, wrote:Anyone seen the great article in the recent Living Without about gluten's effects on the brain and gluten ataxia? As someone with this type of reaction to gluten it was exciting to finally see a write-up about it! As mentioned in the article, even the tiniest amount of gluten can trigger these long-lasting and awful symptoms. all the more reason for gluten-free to truly mean gluten-FREE. As in 0 ppm. For those of us with this kind of sensitivity, <20ppm is just not good enough.

[Guest guest]

I experience the same ataxia after ingesting gluten. In my case, it is the bumping into walls or just catching the corner of a table with my shins. When creating Recognizing Celiac Disease, we researched studies linking gluten to three types of ataxias: Gait, Gluten, Progressive Myoclonic. Page 192, 192, 194 describe the nutritional deficiencies that cause the problems. The studies claim that although symptoms usually persist, a gluten-free diet will prevent further deterioration. In my case, they resolved on a nutritious gluten-free diet. The nutrient deficiencies: Gait Ataxia: vitamin B1, B3,B12,E,D. Gluten Ataxia: gluten sensitivity reaction + vitamin E. Progressive Myoclonic Ataxia: Vitamin E + immune mechanism.

I encourage you to get Recognizing Celiac Disease as a resource. I've spoken across the country to patients and medical practitioners. Doctors do not have the information it contains. You can find information, including dozens of reader letters at http://recognizingceliacdisease.com

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