Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • Jefferson Adams
    Jefferson Adams

    Six Ways Celiac Disease Can Kill You

    Reviewed and edited by a celiac disease expert.

    Celiac.com 08/13/2014 - Even though some folks suffering from symptoms of celiac disease will claim they would welcome death, most people will not actually die from the immediate symptoms of celiac disease; no matter how bad those symptoms get.

    Photo: Wikimedia Commons--NabokovHowever, left untreated, celiac disease can lead to numerous other conditions, several of which are potentially fatal. Remember, many people experience few, or no classic symptoms of celiac disease. These folks may find it easy to keep eating gluten with relatively few noticeable consequences; at least for a time.

    So, for people with celiac disease who ignore either their doctors, or their bodies, the risks can be huge. They can even lead to death by one of the following:

    1) Cancer—Nobody wants cancer, and especially nobody wants the type of cancer that can strike people with gut damage that comes with long-untreated celiac disease.

    People with untreated celiac disease are at risk of developing any number of associated conditions, including gastrointestinal cancer at rates of 40 to 100 times those of the general population. Chief among these types of cancer are a type known as Enteropathy-Associated T-cell Lymphoma (EATL). EATL is a gut cancer that often ends in death. People with celiac disease also need to watch out for non-Hodgkins lymphoma.

    2) Thyroid Disease - There is a 2.5-fold increased risk of papillary cancer of thyroid for celiac patients.

    The good news is that papillary cancer of the thyroid has a high cure rate, with 10-year survival rates estimated at 80% to 90% for any given patient. Still, the dark side is that 10-20% of patients with papillary cancer of the thyroid don’t survive.

    3) Epilepsy - Rare form of celiac disease.

    Patients with an autoimmune disease faced a nearly four-fold higher risk for epilepsy. In some cases, people with epilepsy can suffer from sudden unexpected death (SUDEP).

    SUDEP are still poorly understood, it is possibly the most common cause of death as a result of complications from epilepsy, accounting for between 7.5 to 17% of all epilepsy related deaths and 50% of all deaths in refractory epilepsy.

    4) Heart Failure - Celiac disease doubles the risk of coronary artery disease, which can, in many cases prove fatal.

    5) Diabetes - Diabetes can cause numerous complications, some of which can be fatal. People with celiac disease have higher rates of diabetes than people without celiac disease. Moreover, long-term celiac disease increases death rates in people with diabetes.

    There is also some evidence that a gluten-free diet can lower rates of Type 1 diabetes.

    In the end, for people with T1D, having a celiac disease diagnosis for at least 15 years was associated with a 2.80 times greater risk of death

    6) Obesity - Recent studies suggest that people with celiac disease are likely to be overweight or obese at the time of presentation.

    Studies show that nearly 40% of people diagnosed with celiac disease are actually overweight, not underweight. Also, a full 30% of celiac disease patients are obese at the time of their diagnosis.

    Of course, long term obesity can increase the likelihood of fatality in numerous categories. People treating celiac disease with a gluten-free diet are more likely to have a healthier weight. 

    So, while celiac disease won't kill anyone in the short term, it can have devastating consequences if it remains untreated for a long period of time. Share your thoughts on these ways to die from untreated celiac disease, or add additional insights in the comments section.


    User Feedback

    Recommended Comments



    You always have such good information! I have both the DQ2 and the DQ8 gene markers. My mother has finally gone gluten free, and I always wondered where the other one on my dad's side of the family came from. This information points straight to my paternal grandmother. Wow! Another point, I know most people at diagnosis are overweight, but I was not. I was dangerously close to death from being malnourished due to my undiagnosed celiac. There are a lot of people that die from "failure to thrive" due to undiagnosed celiac.

    I, too, was way underweight. Down almost to 100 lbs at 63 years of age. Had celiac disease my whole adult life, but always treated for individual health issues. I was getting weaker, and expected to hear I already had cancer, but my doctor said it hadn't turned to cancer YET. I'm in Stage 4 of celiac disease. I immediately went 100% gluten free. I'm up 35 lbs. in a year. Stunned, but realize, celiac disease damage is irreversible, but stoppable. Keep researching, read labels, and download the gluten free app on your iPhone to scan labels in the market before you buy. Feeling Grateful everyday!

    Share this comment


    Link to comment
    Share on other sites
    I have recently been diagnosed with coeliac and continue to eat wheat because I cant stand gluten free food. I weigh 5 stone 13lbs because I have a poor appetite, all I eat is soup, bead and crackers, wheat ones of course. I was told I will die because I am continuing to eat wheat but I didn't eat wheat then I would starve as the soup contains wheat, the bread contains wheat and so do the crackers. My taste buds won't like anything else and that's all I eat. I'm scared of dying and will I die in my sleep just like that one night I don't know or when or will I be ill before my death, my consultant has not told me. Does anyone know.

    Try Amy's brand frozen dinners, pepperoni pizza, UDI'S Millet Chia Bread. Toast it. It's not going to get any better, until you change your diet. If you don't like any gluten free breads, then eat no bread. You must be strict with yourself. Fresh fruits, veggies, grilled meats, Bushes Vegetarian baked beans are gluten free. I add lots of seasonings, and you'll find you don't like the old regular diet, because gluten free has introduced you to much tastier foods. Snicker Doodle cookies are way better than cake. Bob's Red Mill cornbread mix is better than regular we were buying. Nature Valley Almond bars are So good, betcha can't eat just one. PLZ give it an all out effort. I don't miss cakes, never did like breaded and deep-fried, and I'm healthier now. Good Luck

    Share this comment


    Link to comment
    Share on other sites
    I had that same thought. I clicked on this article to find out what makes celiac disease fatal because I have it and haven't been sticking to a gluten free diet. This article is exactly what I needed to read. My friends and family just don't understand how important it is that I stay gluten free. I was even in the hospital for six days in January for blood clots in which celiac disease is a factor for them as well, which I guess can also be fatal. Thank you for this article, it really opened my eyes.

    Thanks for the wake-up call. My mind sometimes lies to me, telling me it's ok. This past couple months I've been eating a lot of gluten, especially pizza (my favorite binge food). I have been experiencing problems I've not had previously. I need to get it together.

    Share this comment


    Link to comment
    Share on other sites
    I have recently been diagnosed with coeliac and continue to eat wheat because I cant stand gluten free food. I weigh 5 stone 13lbs because I have a poor appetite, all I eat is soup, bead and crackers, wheat ones of course. I was told I will die because I am continuing to eat wheat but I didn't eat wheat then I would starve as the soup contains wheat, the bread contains wheat and so do the crackers. My taste buds won't like anything else and that's all I eat. I'm scared of dying and will I die in my sleep just like that one night I don't know or when or will I be ill before my death, my consultant has not told me. Does anyone know.

    You're not dying from celiac, you're dying from stupidity.

    Share this comment


    Link to comment
    Share on other sites

    The article was interesting! I was told I had celiac disease when I was 49 years old. I was down to 100 pounds. I couldn't eat anything. It has been really hard being on a gluten-free diet, because I have to be so careful. People need to understand that celiac is very serious. Last week I was told that I had fluid around my heart and I have a heart valve problem. I still have a lot of stomach problems and hurt daily. Someone needs to find something that will helps us. For me it is not a fad, it is my life style and I have to live with it for the rest of my life!!!!

    Share this comment


    Link to comment
    Share on other sites
    I, too, was way underweight. Down almost to 100 lbs at 63 years of age. Had celiac disease my whole adult life, but always treated for individual health issues. I was getting weaker, and expected to hear I already had cancer, but my doctor said it hadn't turned to cancer YET. I'm in Stage 4 of celiac disease. I immediately went 100% gluten free. I'm up 35 lbs. in a year. Stunned, but realize, celiac disease damage is irreversible, but stoppable. Keep researching, read labels, and download the gluten free app on your iPhone to scan labels in the market before you buy. Feeling Grateful everyday!

    My mother and I both have celiac...I self diagnosed in early 2009, she was diagnosed in Oct 2009 after numerous endoscopes and colonoscopies we were never under weight, always over weight she has so many issue today, I cannot even begin to describe them. Our family has no idea, my husband is only first beginning to understand. Gluten free has been the best option for me. I still have issues, but try to be as educated as I can be...wish I was more normal!!

    Share this comment


    Link to comment
    Share on other sites
    My mother and I both have celiac...I self diagnosed in early 2009, she was diagnosed in Oct 2009 after numerous endoscopes and colonoscopies we were never under weight, always over weight she has so many issue today, I cannot even begin to describe them. Our family has no idea, my husband is only first beginning to understand. Gluten free has been the best option for me. I still have issues, but try to be as educated as I can be...wish I was more normal!!

    I just wanted to respond to something you said.

    You said gluten free is the best option for you. People with celiac disease there is no other option. Gluten free is the only option. I personally believe everyone needs to be gluten free as gluten causes so many problems. If people care about their health they would keep gluten out of their diet before it hurts them too.

    Take care of yourself and please don't wait like I have. I am tired of being sick and hope it's not to late for me. I am taking a drastic change because I do not want to die or suffer anymore.

    Share this comment


    Link to comment
    Share on other sites

    When I was finally diagnosed with Celiac I was only 75 pounds, even though I was eating more than most people could everyday, I was starving to death, because the gluten was stopping my body from absorbing any fat, vitamins, and minerals from the food I was eating. I was told that I was going to die, and no one could figure out why, I was accused of starving myself, having mental problems. My blood count was so low it was down to 5.3. I had to go to hematologist every Friday, for months, while they put an iv in allowing medicine with iron, vitamins, and other minerals to put into my blood. I was being told I was going to die from starvation. I also want you to know that I had problems with some foods as a child. The disease started to get worse in my late to early 30s. Someone I knew was spending a lot of time researching online, and found out bout celiac, which at the time was not something many people really paid attention too. I was tested, and I am now 115 pounds, feeling great, no more anemia, no more emotion, problems such as anxiety, depression, no more female monthly problems ( which were really horrible). I absorb minerals and vitamins, fat, everything I need from my food. If you are having any bad stomach problems, anemic, feeling run down, tired, depressed, or anxious all of the time, having issues with your female monthly, lost weight, gained weight, just have the test done, don't wait, please, there are many people who have died in my family from cancers, that did not know about celiac, it is hereditary. Please be tested, and please have your children tested. I am also wondering why the people who put up this website force us to give them our names and email addresses to share important information with others that we might be able to help.

    Share this comment


    Link to comment
    Share on other sites
    The article was interesting! I was told I had celiac disease when I was 49 years old. I was down to 100 pounds. I couldn't eat anything. It has been really hard being on a gluten-free diet, because I have to be so careful. People need to understand that celiac is very serious. Last week I was told that I had fluid around my heart and I have a heart valve problem. I still have a lot of stomach problems and hurt daily. Someone needs to find something that will helps us. For me it is not a fad, it is my life style and I have to live with it for the rest of my life!!!!

    I also became very thin down to 75 pounds, very sick, everything I ate made it worse, my hemo was down to 5.3. I was dying, starving to death, and being told I was emotionally disturbed and was starving myself. It's hereditary. I'm glad you found out you have it and can feel better now. I have found out that you can actually claim a certain amount of the money you spend on your gluten free foods on your income tax, just save your receipts. Since it is a disease that can not be medicated like, diabetes, and other diseases, you have to eat foods to control it, you can claim that on your income taxes.

    Share this comment


    Link to comment
    Share on other sites

    About 3 years ago, my doctor did some blood work on me. When I went back for a follow up, she said she "believes" I have celiac disease. The doctor was reading aloud the numbers to certain blood tests I had done and I asked her so what do those numbers mean, she replied she was not sure! The doctor suggested that I try a gluten free diet and see if I feel any better. I tried that for a few weeks and not only was it very hard to find gluten free foods, especially because I live in a very rural town, I also did not feel better or really did not understand celiac disease at all. Now it is three years later and I feel like death! My feet are numb, my abdomen is swollen and I am in severe pain. I suffer from chronic fatigue and I could go on and on. I can honestly say I feel like death. My appendix has ruptured, my gall bladder was removed also. I saw another doctor but he refused to do any blood work and only told me to eat a better diet! I had an endoscopy a few weeks ago and today I got a phone call from that doctor. He informed me that I have severe celiac disease and soon I will be seeing this gastroenterologist to take the proper steps to help me live with this disease. I am upset with myself for not going to another doctor sooner yet I truly did not know of celiac disease. Hopefully I will be able to sustain a "healthy" life. For all those out there who do not take this disease seriously, please do! I have waited to long and was seen by a questionable doctor and now I suffer daily. I did not view this site when the caskets were visible, however, that's just where I feel I will end up! Open your eyes everyone for celiac disease is unpredictable and painful!

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

×
×
  • Create New...