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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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DrLeonard

Polycythemia And Celiac

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Hi

I was diagnosed with celiac disease about three years ago and was responding well to the gluten-free diet. I recently picked up a brand new diagnosis: polycythemia vera, also known as: Polycythemia rubra vera; Myeloproliferative disorder; Erythremia; Splenomegalic polycythemia; Vaquez's disease; Osler's disease; Polycythemia with chronic cyanosis - Myelopathic polycythemia; Erythrocytosis megalosplenica; Cryptogenic polycythemia.

It's basically a blood disorder where there is an over-production of red blood cells. This makes the blood thick and viscous, leading to fatigue, headaches, difficulty breathing, and even blurred vision. It can be dangerous if untreated becase of the risk of stroke, cardiac problems, etc. The cause is unknown, it's an acquired disorder (apparently not genetic), and the treatment is phlebotomy (siphoning off blood). With treatment it's supposed to be a benign disease for most people. A CBC is what gave mine away; I noticed I had an elevated hematocrit level (my physician completely missed it---always look over your own labs!).

I'm posting this for two reasons: First, does anyone else have celiac disease and polycythemia? But also, I notice that there are a lot of other posts that ask about symptoms that could be related to polycythemia: For example, other symptoms include extreme fatigue (almost as bad as narcolepsy), spleen dysfunction, itchiness (especially after bathing), and vision problems. I've also found posts about iron sensitivity, which apparently can lead to overproduction of red blood cells. There's no research investigating the comorbidity of the two disorders but I have to wonder if there's a connection.

It's apparently difficult to detect in Celiac patients, because so many of us tend to struggle with anemia. In "normal" polycythemia, there is a gradual onset but mine developed in a few months. My GI doc speculates that the celiac disease was causing malabsorbtion and anemia, but after being gluten-free for a long enough time, my body was able to process red blood cells like crazy.

Sorry for the long post, but one last thing: My red blood cells are back to normal now but I'm still exhausted. The hematologist and GI doc are wondering if somehow the celiac disease and polycythemia are related, so in combination they might lead to fatigue even when both are under control. It's very confusing but I'm tired of being tired.

If anybody out there has any ideas or experiences, I'd really appreciate hearing them. Thanks.

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I have regular polycythemia--elevated RBC's and no other blood cells. My resulting symptoms are headaches, weakness, lightheadedness, fatigue, itching, poor circulation, flushed face on exertion, difficulty breathing, and pain in my bones, muscles, and chest. I'm not sure what is meant by "disturbed vision" in the descriptions of the disorder, but I do feel as if I am being asphyxiated during daily episodes (in that blackness closes around my vision). I haven't seen a hematologist yet but just got the results back from tests that were ordered. The bloodletting wouldn't work for me, since I'm also anemic, but I could try transfusions. I don't remember this showing up on previous CBC's, but I did have a thrombus in my arm after surgery several years ago.

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Hi I have celiac disease and live in an area that has a high rate of polycythmia vera. I still suffer from fatigue and I am going to have some lab work done tomorrow. I was wondering if you had any other information to share. Thanks, Lisa

Hi

I was diagnosed with celiac disease about three years ago and was responding well to the gluten-free diet. I recently picked up a brand new diagnosis: polycythemia vera, also known as: Polycythemia rubra vera; Myeloproliferative disorder; Erythremia; Splenomegalic polycythemia; Vaquez's disease; Osler's disease; Polycythemia with chronic cyanosis - Myelopathic polycythemia; Erythrocytosis megalosplenica; Cryptogenic polycythemia.

It's basically a blood disorder where there is an over-production of red blood cells. This makes the blood thick and viscous, leading to fatigue, headaches, difficulty breathing, and even blurred vision. It can be dangerous if untreated becase of the risk of stroke, cardiac problems, etc. The cause is unknown, it's an acquired disorder (apparently not genetic), and the treatment is phlebotomy (siphoning off blood). With treatment it's supposed to be a benign disease for most people. A CBC is what gave mine away; I noticed I had an elevated hematocrit level (my physician completely missed it---always look over your own labs!).

I'm posting this for two reasons: First, does anyone else have celiac disease and polycythemia? But also, I notice that there are a lot of other posts that ask about symptoms that could be related to polycythemia: For example, other symptoms include extreme fatigue (almost as bad as narcolepsy), spleen dysfunction, itchiness (especially after bathing), and vision problems. I've also found posts about iron sensitivity, which apparently can lead to overproduction of red blood cells. There's no research investigating the comorbidity of the two disorders but I have to wonder if there's a connection.

It's apparently difficult to detect in Celiac patients, because so many of us tend to struggle with anemia. In "normal" polycythemia, there is a gradual onset but mine developed in a few months. My GI doc speculates that the celiac disease was causing malabsorbtion and anemia, but after being gluten-free for a long enough time, my body was able to process red blood cells like crazy.

Sorry for the long post, but one last thing: My red blood cells are back to normal now but I'm still exhausted. The hematologist and GI doc are wondering if somehow the celiac disease and polycythemia are related, so in combination they might lead to fatigue even when both are under control. It's very confusing but I'm tired of being tired.

If anybody out there has any ideas or experiences, I'd really appreciate hearing them. Thanks.

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Hi

I was told i had Coeliac's disease in August 2007. 18 months later I am told I have Polycythemia. So far just I have had only to visits for blood letting. The PV was only picked up because of the blood tests for celiac disease, which in some ways is a bit of luck. How common is it ti have PV & celiac disease? i know of the others on this blog (3) and two more who were identified after they were told they had celiac disease but that was back in 1984. The medical paper did raise the question of a link. My first blog on the subject I will add notes when I see my consultant soon.

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