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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 love the fact that the coffins are there. I am beating my head against the wall to get folks to take this serious!!! and if graphics is what it takes to get them to read and start their own research, so be it.

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    The title was specific enough. The picture of caskets was a cheap shot to get attention. We all die sooner or later especially as we age as well. Pointing out how celiac CAN lead to diseases and effect which can lead to death is one thing. Sensationalizing with "caskets"or death heads is simply pompous! Also there is no real way to determine the actual amount of difference one would have lived if such and such...etc!

    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.

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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.

    Like you, I was not overweight when diagnosed with celiac disease, but I had become so ill by the time I was diagnosed I almost wished I would die. I was so undernourished I believe I could have eventually died of malnutrition.

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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.

    Thank you and I agree...as a celiac patient, a nurse and also a multi-focal papillary/follicular thyroid cancer survivor, I appreciate when articles touch on the severity of the disease. I hear perceptions that celiac disease causes, bloating, GI upset, etc. It is an autoimmune disease and the severity is often misunderstood as a disease of "food intolerance" or really just an annoying condition to those around us. I am gluten free for 6 years, post thyroid cancer/treatment for 2 years, and still I battle iron anemia an malabsorption of nutrients. Quite possibly a lifelong battle of irreparable damage.

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    Amy, I have the DQ 2 and DQ 8 gene markers and I'm also named Amy. My dad had epileptic episodes late in life and died of heart problems. My brother has diabetes. I also have other autoimmune issues. My youngest son has celiac disease. Still, no one in my extended family believes that celiac is genetic!

    Amy,

    I can relate to your strong family history and yet the denial remains! I too have te DQ2 and DQ8 markers, my children are positive as well and yet none of my sisters have been tested. Instead my eldest sister reassures me that she only buys whole grain organic flour. Oh good! Very good quality poison. I am a nurse and just resign to allow those members to have the knowledge and make informed autonomous decisions.

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    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.

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    I don't have thyroid cancer but I do have lots of thyroid nodules. How do I get rid of them and why have they developed?

    Currently, I read about using cabbage leaves on the thyroid area of the neck and bound it tightly with a cotton cloth. Very unusual and in the beginning very uncomfortable.

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    Thank you for your article, it was very informative. This Jan. of 2015, one of the worst day of my life. I was at a health store and all of the sudden I wasn't feeling right, I was sweating bullets and I blacked out, then came to and yelled for my husband, he pulled me outside with my wheel chair (I'm disabled), when we got outside, I blacked out again and threw up, they called 911, by the time they got there, my lips were blue and when they got me into the ambulance, they lost me, and had to do CPR on me, and got me back. Thank God the hospital was only less than a mile away. Come to find out, my Hemoglobin was so low that the doctor was shocked that I was alive, they admitted me and I had to have 3 blood transfusions. From there, many different specialists came in and I had two procedures and surgery and that's when I was diagnosed with celiac disease, colitis, & H. Pylori. They said I was very lucky to be alive. So its been almost two months since I have been diagnosed & I am learning how to eat gluten-free, its so complicated for me, but I am following what the doctor is saying. I have never realized how serious this is. I never even heard of celiac until now. As far as family having it, no one, has it. People needs to take this seriously. I am 43 and I would like to live longer. I almost lost my life because of it and now I have to live a whole new lifestyle and I am okay with it, just its taking time to adjust to it, one day at a time. Articles like this we NEED, so people can understand the consequences that they are taking, if they don't follow the gluten-free diet. Thank you again for your article!! God Bless.

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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 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.

     

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    Guest Realtruth Please

    Posted

    Thank you and I agree...as a celiac patient, a nurse and also a multi-focal papillary/follicular thyroid cancer survivor, I appreciate when articles touch on the severity of the disease. I hear perceptions that celiac disease causes, bloating, GI upset, etc. It is an autoimmune disease and the severity is often misunderstood as a disease of "food intolerance" or really just an annoying condition to those around us. I am gluten free for 6 years, post thyroid cancer/treatment for 2 years, and still I battle iron anemia an malabsorption of nutrients. Quite possibly a lifelong battle of irreparable damage.

    I think a lot of people are in denial about the severity of celiac disease. Wake up calls are needed.

    I've watched two people slowly die from diarrhea and the results of having intestines that are no longer able to process food. They eventually can't even absorb water. Their veins become too small to get needles in them, and they die very slowly and miserably. This is not a scare tactic, this is a reality. These two people knew they had celiac disease, but did not take it seriously, nor did their doctors or families. So I was left at their side watching them slowly waste away, cleaning up poop, knowing that they could easily be saved, but no one will listen and I have to watch them die. Please, publish more real life stories of people dying from celiac disease. It's not just the autoimmune diseases associated with it that kill people, the disease itself will kill them.

     

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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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