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2 Years Out...

Ed in Baja

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Ed in Baja Rookie
Ed in Baja
Posted

Hi Y'all,

When I was diagnosed, I felt better right away, but worried about lingering nuero muscular problems. I had progressed to  cerebellar ataxia in the 15 years of lack of diagnosis. Scared me BAD! I have IDDM type 1 as well. My motor nerve problems had always been called diabetic amyotrophy, though they did not fit the profile, just a convenient garbage can diagnosis.Concurrent celiac disease seems to accerlerate various nueropathies, as I have read. Much later, I correlated symptoms with periods of high gluten consumption. After going gluten-free, I experienced a lot of improvement. A forum member cautioned me, and indeed there has been some permanent damage, and continued episodes which I can correlate with HD lesions. If I eat at restuarants, and eat corn chips or fries the oil seems to be contaminated with gliadin from fried wheat breading, etc. Then I get a small HD lesion, and notice the weakness again. Also, maybe a correlation with wheat based vodka? has any body noticed anything like this? Also seem to feel a little off when I try to eat gluten free bread with Xantham gum...more like a little stomach indigestion. Anybody notice this?

Rice and corn pasta seem ok.

Incidently, and not to preach, I feel best on a near vegan diet: dairy, meat free. All my blood work went normal, HB A-1c at 4.2. Lost 35 lbs.Then fishing season comes, and I cannot resist catching and eating the dorado and yellowtail we have here. I now have recovered enough that I can resume fishing from my sea kayak and surfing! There is hope.

Ed in Baja

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