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GFJan

Member Since 13 Apr 2007
Offline Last Active Apr 29 2007 11:40 PM
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Topics I've Started

Negative Tests, But Severe Anemia

13 April 2007 - 12:27 PM

My gastroenterologist has been after me for over a year to try a gluten-free diet. I have always been a big wheat-eater (grind my own flour, etc) and seemed to do fine with it, but have had bouts with unexplained anemia off an on all my life.

Four years ago I contracted West Nile Virus and my immune system seemed to go haywire after that. My hemoglobin kept dropping until it got down below 5 and all my doctors were freaking out. It looks like plain old iron deficiency anemia, but iron supplements and a diet high in iron don't help. I'm now to the point where I need transfusions so I decided to give the diet a try.

My blood tests were all negative, DNA showed positive for DQ8. I haven't had a biopsy because of high risk of anesthesia reaction (I have three other rare genetic diseases that complicate things). I'm very allergic to rice and soy and react to corn and tapioca if I eat them often. That doesn't leave a whole lot in terms of carbohydrates and I need 400 grams a day.

I actually got through the first week with no wheat cravings and no weight loss. I can't say that I feel any differently and my hemoglobin is still the same. For those of you who have had anemia, how long did it take for you to start seeing a change in your lab results?

Jan