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Increased Mortality Rates for Celiacs

Celiac.com 02/22/2010 - Celiac disease affects approximately 1 in 100 people in the United States. Celiac disease is a genetic disease and the only known cure is a gluten-free diet for life. While most people with celiac disease experience a relief from symptoms while on a gluten free diet, studies are showing an increased mortality rate in patients with the disease compared to the general population.

Out of the 21 papers that have been published over the last 25 years addressing the issue of celiac and mortality rates, the studies show conflicting results, ranging from a 0.52% (decrease) to 3.9% (increase) in mortality rates for patients with celiac compared to the general population. The reasons for the conflicting results are based on the fact that the papers vary vastly from each other, and while some studies are location based or population based, others are cohort based. So for the sake of this particular study, celiac patient's have been categorized into four different groups: symptomatic celiac disease, dermatitis herpetiformis, unrecognized celiac disease and refractory celiac disease. Because these groups of celiac patients differ greatly, it is necessary to analyze their mortality rates individually.

Ten papers in five different countries studied mortality in patients with symptomatic celiac, or celiac symptoms that indicate the presence of celiac disease in a patient. All ten papers on the subject came to the same conclusion, patients with symptomatic celiac disease have been shown to have a increased mortality rate. The primary reason for increased mortality in these particular patients was found to be caused by complications from celiac disease like gastrointestinal malignancies such as, non-Hodgkin lymphoma and small bowel cancer. Other conditions that led to increased mortality for these patients included, autoimmune conditions, ischemic heart disease and violence (including suicide and accidents).

Dermatitis herpetiformis is a gluten agitating blistering of the skin which has frequently been associated with celiac disease. Four studies have been conducted on the mortality rates of celiac patients with dermatitis herpetiformis and found that mortality rates did not increase for them compared to the general public.

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Four studies were also conducted to determine the mortality rates of people with unrecognized, and therefore untreated celiac disease. Two of the studies showed no increase in mortality, while the other two (including the United States study) showed a considerable increase in mortality of people with unrecognized celiac disease. The reason for the conflicting evidence can be merited to the difficulty in obtaining non-biased, random subjects for the study.

Refractory celiac disease is known as an inexorable form of celiac disease. Symptoms associated with refractory celiac do not improve with a gluten-free diet. Refractory celiac disease is classified into two types: type I and type II. Type II refractory celiac patients are inclined to develop enteropathy associated T-cell lymphoma and have a lower survival rate than type I patients. While the 5 year survival rate for type I patients is between 80%-96%, those with type II refractory celiac only had a 44%-58% chance of survival which dropped to 8% in those patients that developed enteropathy-associated T-cell lymphoma.

Other studies of mortality rates in celiac patients have indicated that there is a actual amount of gluten that one can exceed which will eventually lead to complications with celiac disease. Thus, if a person continually consumes more gluten than can be processed by their body, usually as a result of malabsorption associated with celiac disease, it is more likely to activate refractory celiac disease and lymphoma in some individuals.

Overall these studies have aided in proving that compared to the general population, the risk of mortality rates are increased for celiac patients. While mortality rates decreased over time starting from the point of celiac diagnosis, mortality rates tended to increase significantly in patients who did not adhere to a strict gluten free diet. Standard mortality rates doubled for patients who were unlikely to stick to a gluten free diet, and for patients that definitely did not follow a strict gluten free diet, the mortality rate was six times higher. Therefore, if you have celiac disease, early diagnosis and strict adherence to a gluten free diet can be a life-saver, and is very likely to extend and improve your quality of life.

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Katrina Shoat
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said this on
04 Mar 2014 10:59:54 AM PDT
This was so helpful! My daughter really needed this information, and now, after hours of searching, we found our answers here! "THANK YOU SO MUCH!!!!!!!!!!!!" (says my daughter Tiffany). Thank you, celiac.com!




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JaneWhoLovesRain, what is odder to me than that there is an older disease that Doctor's have forgotten that explains many of the same symptom's and doctor's do not even think about it today since the "War on Pellagra" was declared over a 100 years and why doctor's don't (at least in the West) think about it any more. Dr. Heaney wrote a nice online article about this topic. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Here is fairly recent article about how Pellagra can present in patients and the title says' it all from the International Journal of Dermatology. https://www.researchgate.net/publication/227807440_Pellagra_Dermatitis_dementia_and_diarrhea Dermatitis, dementia and Diarrhea are the 3 D's (4th D is death) of Pellagra. Typically it is only diagnosed today if you are in a subset of the population like an alcoholic for example or you have a gastric bypass. See this article from the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMicm050641 and despite all the signs of Pellagra (skin issues etc.) . . .. Pellagra in it native tongue (Italian) where it was first diagnosed was called "rough/sour skin" who knows that today??????? Very few I would venture to guess. The NEJM can only say they have "Pellagra-like dermatitis" it has been so long since any doctor's seen it they can't (with confidence) diagnose it clinically. But taking Niacinamide 3/day for 6 months can help alleviate your symptom's if indeed the DH of Celiac is the dermatitis of Pellagra being medically misdiagnosed. Here is a an article featured on celiac.com about why/how Pellagra can be confused for Celiac disease. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html Because they haven't seen Pellagra in 75+ years no one recognizes it anymore. ****this is not medical advice. I hope this is helpful. Knitty Kitty and I are the Niacin warriors on this board. See this thread where Knitty Kitty says Niacin helped the itching of DH. If that is so then it might help your DH (if you have it) and your GI problems too if they are caused by co-morbid Pellagra. see my blog post about where I say "I had Celiac Disease and Developed Pellagra" that talks about this in more detail. Again good luck and your continued journey and I hope this is helpful. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. posterboy by the grace of God,

I should say I am confused about how to interpret--- Does this mean celiac or no celiac? Thank you all---I greatly appreciate it.

KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms--- My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP. My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"... I have a follow-up with the GI in 3 weeks. Wondering about any help?

DH wasn't linked to celiacs until 1967 from my research...