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  • 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.


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    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.

    Most food is gluten food. Since only grains have gluten and there is no nutritional need for grains avoiding grains makes your diet gluten free.

     

    Of curse, frankenfood manufactures love to add wheat and other grains to their products so you will have to cook for yourself.

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    Thanks, Petrea, for your comment. I agree that the chosen photo is a bit overly dramatic. I had scant time to source a photo, and took the easy way out on this one. It's definitely not the only option. I'll keep that in mind going forward.

    And yet it's still there.

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    The article is titled "Six Ways Celiac Disease Can Kill You," thus you probably should not have clicked on it if you wanted an uplifting article.

    I love it, someone is always ready to argue about something...they have nothing better to do with their time. Anyways the important thing is the article is great and very helpful, thank you.

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    No clinical evidence whatsoever or clinical evidence references. The science is complex new diagnosis techniques, long there % death rates of coeliacs vs villi of the intestine other than coeliacs. Ref royal college of physicians London conference 2006.

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    No clinical evidence whatsoever or clinical evidence references. The science is complex new diagnosis techniques, long there % death rates of coeliacs vs villi of the intestine other than coeliacs. Ref royal college of physicians London conference 2006.

     

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    Regarding your gluten-free diet and T1D claims - the study cited showed lower incidences in offspring of *mice* that were *affected by diabetes*. Not regular mice.rnAs type diabetes is an autoimmune disorder, But the thing that gets me is that T1D is an autoimmune disease, as is coeliac. So it only logically stands to reason that mice with autoimmune disorders are going to be likely to pass on many of those same markers to their offspring. Meanwhile, this article is drawing the conclusion that all people with gluten-free diets have lower incidences of T1D, which is frankly untrue.

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    It is very comforting reading all of your experiences. I have been anaemic all my life, suffered with stunt growth, stomach cramps, vomiting, constipation, mouth ulcers, endometriosis, anxiety, heavy periods, loss of weight, IBS, well, to cut the long story short, I was diagnosed with rheumatoid arthritis in my late 30´s. But it was only after suffering 12 years with my son´s heavy nosebleeds and his similar IBS symptoms like mine, that the penny finally dropped about coeliac disease. We have been completely gluten-free for over a year now, even though our blood tests were negative for celiac disease, and all our symptoms have vanished, apart from when we are poisoned by accident (usually eating out). Even my husband and daughter joined us out of sympathy and now are rid of their terrible hayfever. We truly believe everyone is better off without gluten. However I still cannot get a coeliac diagnosis for my son. The gastro will not give us a small bowel biopsy, because my son cannot be gluten challenged due to the heavy bleeding if exposed to gluten, which is very annoying, because I did asked so many times for one before going on a gluten free diet and they said no every time I asked for one, just because the blood tests were negative. He is now 13 and the saga continues...Now I am disturbed to read that celiac disease can cause blood clots, since he has been given tranexamic acid (to clot his blood) when having heavy episodes of epitaxis. It is very frustrating to have your son ticking every box for celiac disease and being told that he is just gluten intolerant, which is not taken seriously anywhere we go. I just know that we are coeliacs. Even his genetic testing says he is at high risk of celiac disease genotype. I don´t really know what else they need, to give us a proper diagnosis. But I guess, with a celiac disease diagnosis, the UK government would have to give him free bread prescriptions for life; precisely the thing they are trying to avoid I suppose. I guess the majority of you on this blog, lives in the USA. All the best, Elisa

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    It would be nice to include some positive info instead of scaring everyone with photos of caskets. I am all for being informed but this makes it sound as if it's a death sentence. Please provide info on what you can do to prevent and reduce your chances of these diseases instead of making it sound like we are all doomed. The caskets were a horrible visual. I am going to continue liking this page but if this happens again, I am going to get my information from an honest, but more uplifting source.

    How about being more honest and giving better references? Agree this is just not help in anyway. On the other had it does not appear to be a add for anything. Too many of those.

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    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.

    So wht happened did you get treatment or what?

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    I have to say how much I appreciate this article. Today I was writing/posting about a very good low-carb bread that is available. It has to be ordered from Amazon, and shipped, and then kept frozen. Naturally, that's costly, but to those living without bread at all, it's good to know about as a luxury item. Carbohydrates are more or less sugar, as they convert into that in our bodies, so people with some of the conditions which celiac can lead to - obesity, diabetes, etc- should be hyper-aware of them. Honestly, we all should, more so than calories, and maybe we would all be a lot healthier. I try to tell people it is the KIND of calories, not just calories, that can make a difference. Since gluten is a wheat/grain product, and wheat/grains are a source of high carbohydrates, generally, folks avoiding carbs are also avoiding many gluten-rich products and foods without really thinking about it. While I am not "one of you", when I cut carbs/sugar, after withdrawal, I did feel the benefits of more energy and just feeling better in general, the same way many people report feeling when they get off of gluten. I sometimes joke that I was allergic to sugar. However, in my closing statements, I was pointing out that while diabetes, obesity, and other conditions complicated directly by them are quite literally killing people every single day, we still have to hunt desperately and special order low-carb foods. Other than Atkins products, there are maybe 13 individual truly low carb meal items one can buy in frozen foods, hunted and pecked out from manufacturers who created them accidentally by happening to combine the right ingredients for once. Meanwhile, although celiac disease and gluten intolerance are not killing anyone, and a much lower percentage of our population suffers from them (although many are undiagnosed), we can now find whole sections of our grocery freezer devoted to gluten-free bakery items and foods, and just about everything is labeled "Gluten Free" including items that it seems absurd to label in that way, like raw meat. I meet people who have no idea what "gluten" even is, or means, and just think it is "bad" (while discussing cat food, for example). America's head is not on straight; trendiness seems more powerful and important than our own mortality rates. And so, I was out here looking for something with real authority...not a twinkie source, to back up my belief that neither celiac disease nor gluten intolerance was fatal, and I found this. Thank you for writing it. While I do actually know one person with celiac and a handful with intolerance, and I fully respect that these are real conditions and very awful, I get frustrated with the general public for the way topics are seized upon when it comes to nutrition and diet. True education is hard to serve when it will not fit on a bumper sticker. This site is going a long way to help.

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    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

    I love the Bob's cornbread mix as well. Lots of good foods are available! Many supermarkets such as Wegman's and Aldi's are carrying store brand gluten-free foods that are not so costly. I would like to join a support group.

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  • 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.

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