Negative Tests, But Severe Anemia
Posted 13 April 2007 - 12:27 PM
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?
Posted 13 April 2007 - 12:59 PM
My hemoglobin was at 8 just before I was diagnosed. In 6 months, it was up to 14.5--the highest it's ever been. Before getting so low, it had been at 11.5.
The first 3-4 months gluten-free, I was still very tired and worn out. Somewhere around the 4 month mark, I turned a corner. Hopefully, you just need to give it more time. A week is just not enough to notice a difference.
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Posted 13 April 2007 - 02:41 PM
Last summer I tried all kinds of iron supplements and got severe gastritis which still hasn't completely healed. I can't do iron IVs or shots, so transfusions are my only other recourse and I hate to risk exposure to anything else. I know they say the blood supply is much safer, but I've had friends who contracted HepC, HIV and herpes infections from supposedly safe blood.
You give me hope that I may have some energy again some day - it's worth the wait!
Posted 13 April 2007 - 02:49 PM
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users