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About Sylvia

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  1. I did have some terrible problems with itchy skin and blisters on my hands and buttocks, and some of it proved to be DH, but I saw an alergist and found out I have developed some food allergies that I never had before to coconut, eggs, milk, nuts, etc. Getting this undercontrol really helped. The allergist thought because I have non-responsive celiac that it might have caused or added to the allergic reaction. Sylvia
  2. Dear Antigluten: I too usually have to take a nap to make it through the day. I also have developed a sleeping disorder, severe rapid leg movement, that prevents me from sleeping at night without medication. I do have days when I can get by without sleeping, but they are rare. In fact, I am currently on disability because it is impossible for me to work with this constant and chronic fatigue. I have talked to other celiacs that have the same problem, and there doesn't seem to be a definitive answer yet from the medical field. My GI feels it is related to the Celiac disease, and my endochronologist reminded me that Celiac disease has system wide effects. I have found that I really have to pace myself. I drove my grandson home ( at two hour trip) and then slept for 3 days. I have good luck with reducing my schedule, planning for a nap, and realizing that after a busy time (a trip, visitors, etc) I will need extra sleep. Hang in there. I believe there is a lot they don't know yet. Sylvia
  3. I am a 53 year-old woman with diabetes since the age of 11. I have had celiac disease at least as long, but wasn't diagnosed until 3 1/2 years ago. I have Non-Responsive celiac disease and despite a very strict diet, have not grown back the villi. A recent Endoscopy showed at least one site of atrophy in the colon. Due to my diabetes my GI is hesitant to put me on predisone or any of the other immunosupresant drugs. I am relatively free of long term side affects from the Diabetes, and he is concerned ( as is my endrochrinologist) about the long term effects of something like predisone. I am now on the transplant list for a pancreas. This will eliminate the problem of diabetes, and the anti-rejection drugs should take care of the problem with the Non-responsive celiac disease. However, I am concerned about food while in the hospital (they will know about the celiac disease, but the intricacies of cross contamination control are a worry), also, they anticipate having to use some doner blood during the surgery. Am I at a risk (great or small) receiving blood and an organ from someone who has been eating gluten?? My pharmacist has checked the list of medications they will be using, and those are all Gluten free as long as the hospital uses brand names. Any response would be helpful. Waiting for a transplant is a lonley time. Thanks, Sylvia
  4. I have found that when I have a dermatitis herpetiformis breakout, that PURE Tea Tree Oil applied 1-3 times daily, help it dry up faster, and helps control the pain/itching.