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Negative Tests, But Severe Anemia
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4 posts in this topic

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

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Hi Jan,

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.

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Thanks - I know it will be a long haul and am willing to give it time, but I'm hoping it won't take too many weeks for the hemoglobin to start rising so I can avoid the transfusions. The lowest it has been is 4.3...that's considered critical and my doctors don't know how I can even walk around.

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!

Jan

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I think mine was around 9 the last I was tested in late January and my doc said that I'd probably have to go about a year before getting it to something normal. We're in mid-April now and I'm feeling a heck of a lot better so, probably you should be thinking something long-term, although it does get gradually better unlike celiac healing, which seems to have its own agenda. :)

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