As you know I welcome true stories for me to share with others who may be in a similar quest or even having been diagnosed. Reading another’s story just seems to help. I will never post a story I am not authorized to share. Thank you Merri for your story you have shared below with GlutenFreeHelp.info and me below:
Hello Tina,
I really don’t have any recipes but about a month ago I was near death, the Veterans Administration had done a billion tests on me since August 2009 and could not figure out why I had lost over 30 pounds, was anemic for 5 years, was throwing up, severe diarrhea and on and on. I ended up in the ER’s 8 times and once they diagnosed me as being anorexic. I think they werejust tired of me going in.
Finally they did an endoscopy and found I had celiac sprue!
I am on the mend, but ended up in the hospital for 15 days. I have gained back 18 pounds and am in occupational therapy and physical therapy.I now have severe osteoporosis, loss of muscle and the anemia numbers are edging towards normal.
So as of right now I am trying different brands of foods and reading EVERYTHING. I made spaghetti and used brown rice noodles and that was good.
Please feel free to share this so others don’t have to get that sick!
Merri Bright
Tags: autoimmune disorder, celiac disease, Gluten-Free Baking, true story
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Tina,
Here is my true story too. I found you through the celiac group in Vancouver. I ma new to all this computer stuff.
Having been diagnosed with celiac disease with virtually all neurological symptoms, and being as careful as possible to be gluten and dairy-free I am keenly anxious to know if I can overcome my conditions (moderate-to severe ataxia,severe diplopia, improving peripheral neuropathy,moderate cerebellar atrophy,and possible junctional tachycardia)?
M. Hadjivasilious et al in a published paper “Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics” (Brain 2003, 126, 685-691) this summarizes that 68 patients with gluten ataxia had a mean duration of ataxia of 9.7 years. I have been afflicted for 3 years now. My improvement is evident but like watching a glacier melt.
Thanks,Murray McCarthur