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Essential Thrombocythemia, anemia and Celiac Disease, the Trifecta
I learned I had ET through a routine blood test during my annual Medicare checkup last fall. Since then I have found I have the Jak2 mutation, I’m severely anemic and I have celiac disease. I am an otherwise quite healthy and active 68 year old. HU controls my platelet count, but it has been a roller coaster trying to get the dosing right. I think we might just about have it at 6x a week. No side effects from the HU. I have been getting conflicting advice from my last two oncologists on starting iron. The first one had me take iron tablets when my platelet count was around 800k and it shot up over 1,000,000 in less than a week. I have been off since then. She suggested starting iron when my numbers got down around 400k. My new oncologist wants me on iron now when my platelet count is over 600k. I’m still resisting at this point. So I’m wondering if anyone else has a similar trifecta and how you are faring. Also wondering how celiac disease may be contributing to my malabsorption of iron. I had my small intestine scoped and the findings were no severe degradation of the intestinal lining, but the villi showed degradation at the microscopic level.
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Was found to have celiac sprue several years ago (it runs rampant in my family). I also have PV.
I have an appointment with a hemotologist on 3/28/23 to find out what you are wondering about,celiac disease.I got mine in february 2020 from covid 19 when it was unheard of in the U.S..I got the delta variant one year later.I found out I could eat fried rice and tacos and lived off that diet for a couple of years and then deducted I had a peptic ulcer from xpili bacteria.My NP gave me flagyl which cured the bacterial attack but I am still anemic from lack of iron and hemoglobin count.My legs are also swelling.Took kaflex and it worked but she switched to clandomycin...bad move..
I carefully avoid gluten, especially read ingredients at the store. During a colonoscopy a few months ago, a sample of my small intestines was biopsied and the damage to the villi was obvious. My GI guy also found I was positive for heliobacter so I went on an antibiotic regimen until that cleared. He also had me take celiac panel (I am positive).
My brother, also a celiac, had anemia and, following a strict gluten-free diet, he is no longer anemic.
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2 ReactionsI have seen two hematologists, both very good with evaluating and treating the ET, but have little to say about the role celiac may play into this. I’m seeing a nutritionist in two weeks to come at it from that angle. I have switched to a gluten free diet and that has made me feel better. I also have the jak2 mutation, but otherwise I’m asymptomatic.
If you still have villi degradation, you are ingesting gluten still. That will cause malabsorbtion. I would suggest you go to celiac.org to help you figure out what it is you are eating that is keeping your gut irritated. Could be something as simple as ketchup or pickles or meds or supplements you are taking...a lot use gluten as a filler. I have celiac and have a gluten free household. I rarely eat food that someone else has cooked (had a friend once give me breakfast sausages that contained maltodextrin, she didn't realize it can contain gluten) I was sick for a week. Ooops. She is still my friend! 😉
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2 ReactionsGlad to hear you have changed your diet and it made you feel better.My villi is probably dulled from 3 years of fighting celiac by simple deduction of what I could or could not digest. This is a great discussion board.
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