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HCM and celiac disease

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  • HCM and celiac disease

    Hi,
    I wanted to know if anyone has been diagnosed with HCM and celiac disease. My brother passed away from HCM in 1997 at the age of 34 and both my mother and two sisters have HCM. I do not have HCM but last year was diagnosed with celiac disease. Celiac disease is also a genetic disease but even if you carry the celiac genes doesn't mean you will develop the disease. Celiac Disease is also an auto-immune disease which can develop at any time in your life -with ingestion of gluten, a protein in wheat, rye, and barley, your own immune system attacks and destroys the lining of your intestines. With the intestinal damage, your body loses the ability to digest and absorb the necessary nutrients and vitamins including proteins, carbohydrates, and fats necessary to sustain life. The symptoms of celiac disease can vary tremendously from one person to another such as chronic fatigue, stomach pain, constipation, diarrhea, bloating, gas, joint pain, bone pain, weight loss, numbness in the extremities (peripheral neuropathy), mouth ulcers, psoriasis, night blindness (vitamin A deficiency), and etc. I now write and publish articles on celiac disease. With better blood tests, even asymptomatic celiac patients are being discovered. Celiac disease has been associated with dilated cardiomyopathy (Source: New Eng. J) and I've been told that end-stage HCM can look like DCM. A study of 642 patients who were candidates for heart transplant in Italy found that 1.9% had the celiac disease blood antibodies (compared to 0.35% of 720 healthy controls) and that 2.2% of 275 patients with dilated cardiomyopathy were celiac antibody positive (compared to 1.6% in the remaining transplant candidates) (Prati D, et al, 2002, Am J Gastroenterol 97:218; Prati D, et al, 2002, Dig Liver Dis 34:39). Although an association was found, there was no way to assess cause and affect. The authors suggest a study of whether a gluten-free diet improves cardiac function in such patients.

    I lost much weight from my failure to digest fats and other foods and had much of the symptoms I already described in addition to heart palpitations/ fluttering while the Gastroenterologist (specialist in digestive diseases) challenged me with ingestion of wheat in order to test and diagnose me; My primary doctor ordered a echocardiogram and I was also found to have mitral valve regurgitation due to loss of blood flow to the heart. Other celiac patients have been found to have mitral valve prolapse or dilated cardiomyopathy.
    Current medical research on celiac disease is now finding that the prevalence of the disease in the United States can be as high as 1 in 130 people and Dr. Alessio Fasano, a specialist on celiac disease at the University of Maryland Center for Celiac Research, calls it the most frequent genetic disease of human kind since the worldwide prevalence is now thought to be 1 in 266 people. Rich Gannon, a quarterback for the Oakland Raiders football team, has a daughter who almost died from celiac disease several years ago. For every touchdown pass this past football season, he donated funds to the Center for Celiac Research. Celiac Disease is most frequently found in people of Northern European descent but has been found in India, North Africa, and more rarely in Asians although I am Asian. A recent study found the rate of Hispanics in Southern California with celiac disease to be 8 percent. Specialists believe that celiac disease is grossly underdiagnosed in the United States because patients present with no symptoms or non-specific, or non-intestinal symptoms, or are diagnosed previously with associated diseases such as rheumatoid arthritis, diabetes type I, or thyroid disease.
    I am concerned for members of my family as none of them have yet been screened for celiac disease which is also genetic like HCM. And since some of the symptoms can be overlapping, it's difficult to differentiate so I would like to know of someone who can speak about their experiences with both celiac and HCM.
    Laura
    HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
    Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
    Sister @ 41 got heart transplant on Valentine's day 2002
    Oldest sister, diagnosed with HCM in 2010
    only niece cleared by genetic testing; son not genetically tested yet
    Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
    maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

  • #2
    Hello Laura and welcome to the board.
    I have known Laura for many years now and have found her research to be top knotch.
    If there is any connection it will be helpful to uncover.
    Best wishes,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Laura

      I do not have HCM, my husband does. His sister has screened clear of HCM so far, but has severe allergies to wheat, barley, rye, and oats. I don't know about any other grains. She's never been diagnosed with Celiac disease that I know of. She does have a heart murmur. I don't have celiac disease either, but have an allergy to wheat. I found through the elimination diet that I feel better, although not 100%, if I continue to eat wheat because if I accidentally ingest wheat while avoiding it I feel a whole lot worse than if I had continued to eat normally. I do try to avoid eating a lot of wheat when I can, though. I do have mitral valve prolapse with regurgitation, but have never had anyone suggest that the two could be linked. I'm sure that others will answer you in time and hopefully help you. I know I didn't answer any of your questions. Good luck with your research.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Celiac disease and HCM

        Hi! I have Celiac Disease and HCM although my HCM may be caused by Fabry Disease rather than be the inherited HCM. When I ate wheat and related grains (for the first 34 years of my life) I had lots of feelings of my heart doing strange things, but at that time I didn't even know how to take my pulse. If I had known, I'd have been too scared to. My heart beats felt very weird (big bumps when I was in bed at night, for one thing) and I was quite frightened.

        When I stopped eating grains, my heart frightening symptoms stopped for a number of years (but did learn to take my pulse and found I had PVCs). Then more recently I started feeling faint. This time there were tests showing enlarged septum, valve problems, and regurgitation.

        I think the chances of anyone with any number of diseases having Celiac Disease in addition to their other disease is very high. From experience I can tell you that having Fabry Disease and obstructive HCM is not fun, but having Celiac Disease (and not eating in a way to stop its damage) was far, far worse.

        Sue

        Comment


        • #5
          Sue - I am in touch with some researchers in the area of Farbries...it appears they have some new treatments that are showing real promise... give me a call!
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            immune systems

            I read somewhere (will try to find it again) that some forms of cardiomyopathy are due to auto-immune problems --which would explain the connection between these other diseases.

            I am lactose intolerant and am cutting out nightshade family plants (tomato, potato, eggplant, peppers) as well as dairy products to see how I feel. The afib group on yahoo is reporting that a lot of them are afib-free without dairy products and/or wheat.

            Very interesting. More research is clearly needed.

            S

            Comment


            • #7
              Dairy

              Hey, Sarah,

              I keep seeing this dairy thing popping up every now and then. Can you explain? Is this just in people with afib (or is it the cause of arrhythmia)? What are its effects? I love dairy products and have been experiencing multiple pvc's (any connection?)

              Thanks for your help!

              Dolly W
              HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

              Comment


              • #8
                This is from someone on another board who has CD. I asked if she had any heart problems. Here is her reply:

                Hi Reenie,

                I don't mind you asking at all. Whenever I feel it's appropriate, I like to interject something about Celiac's on the ******** board. It's because of them that I found out I had it! Last summer someone wrote that her grandmother had been diagnosed with it. I read the post and I must have filed that information away in my brain somewhere. When I started getting really sick in October, I decided to look up the symptoms of Celiacs. I had been checking online to see if I could find something that matched the way I had been feeling but none of the information I came across was close enough. When I went onto www.celiacs.com, I found that I had about 75% of the classic symptoms.

                As for heart problems, I would have to say yes. I've had palpatations and the feeling like it was racing for quite some time. Certainly more than 10 years. Sometimes it's really bad and I've had a few episodes where I felt like I was going to pass out. All the testing (Halter monitor, ultrasound, EKG) were within normal ranges. About the only thing they found was that one of the valves in my heart (I think it was the mitral valve) was slightly floppy but nothing to be concerned about.

                Whether or not this is related to CD, I can't say. Since I've been gluten free I've only had one very minor episode of heart palpations and none of the racing. You can tell your friend that I had my thyroid removed in 2000 after they found several small tumors on it. They found these when they did an MRI on my spine (I have back problems) and it was totally unexpected as my blood work and check ups for thyroid problems had always been negative. I also have high rhumatoid levels, another autoimmune disorder.

                I have not been "officially" diagnosed by the medical profession. I'm not sure I ever will. I may go off the diet and eat regular food one more time just to prove to that 1% of myself that still can't believe I was the one who found out what was wrong with me, that I really have this. The alternative would be upwards of 8 weeks on a gluten rich diet followed by a biopsy of my small intestine. I don't want to get as sick as I was in October again. For a diagnosis added to my medical records, it's just not worth it.

                Hope this helped. You probably got more that you needed. LOL! If your friends has any other questions I can help with, feel free to email me.
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

                Comment

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