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400% Increase in Risk of Death for Undiagnosed Celiacs

Celiac.com 04/22/2009 - Not many studies have looked at prevalence and long-term outcome of undiagnosed celiac disease, and so not much is known about this aspect of the disease. Recently, a team of Mayo Clinic researchers conducted an assessment of the long-term outcome of undiagnosed celiac disease, and whether the prevalence of undiagnosed celiac disease has changed during the past 50 years.

The research team was made up of Alberto Rubio-Tapia, MD; Robert A. Kyle, MD; Edward L. Kaplan, MD; Dwight R. Johnson, MD; William Page, PhD; Frederick Erdtmann, MD, MPH; Tricia L. Brantner, MD; W. Ray Kim, MD, Tara K. Phelps, MS; Brian D. Lahr, MS; Alan R. Zinsmeister, PhD; L. Joseph Melton III, MD; and Joseph A. Murray, MD.

For the study the team looked at blood samples taken from 9,133 healthy young adults at Warren Air Force Base between 1948 and 1954, along with samples from 12,768 sex-matched subjects from 2 recent cohorts from Olmsted County, Minnesota. Subjects from the Minnesota cohorts were matched for date of birth (n=5,558) or age at sampling (n=7,210) with the Air Force study.

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The research team tested the blood samples for tissue transglutaminase and, if abnormally high, for endomysial antibodies. They charted survival rates in a 45 year follow-up period in the Air Force and compared rates of undiagnosed celiac between the Air Force data and the recent cohorts.

Of 9,133 Air Force subjects, 14 had undiagnosed celiac disease--a rate of 0.2%. In that cohort, persons with undiagnosed celiac disease had higher mortality rates across the board than those who had tested negative (hazard ratio=3.9; 95% CI, 2.0-7.5; P <.001).

In the case of the Minnesota cohorts, the team found undiagnosed celiac disease in 68 persons with similar age at sampling (0.9%), and 46 persons with similar years of birth (0.8%). These recent cohorts showed rates of undiagnosed celiac disease that were 4.5-times and 4-times greater than the Air Force cohort (both P=.0001).

The research team found that data from the 45 year of follow-up of Air Force subjects showed that people with undiagnosed celiac disease have a 400% higher risk of death than seronegative subjects ("non-celiacs"). They also concluded that rates of undiagnosed celiac disease seem have increased dramatically in the United States over the last 50 years.

Gastroenterology - 13 April 2009 (10.1053/j.gastro.2009.03.059).

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3 Responses:

 
Todd
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
03 May 2009 4:28:23 PM PDT
Yeah but I'm already at a 100% risk of death so this data seems kind of irrelevant.

 
Fred Martin
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated ( Author)
said this on
07 May 2009 3:43:20 PM PDT
Excellent article, though apparently some of the readers don't understand statistics...

 
Jefferson Adams
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
05 Jun 2009 12:07:13 PM PDT
The key data point from the study is here:

'Of 9,133 Air Force subjects, 14 had undiagnosed celiac disease--a rate of 0.2%. In that cohort, persons with undiagnosed celiac disease had higher mortality rates across the board than those who had tested negative (hazard ratio=3.9; 95% CI, 2.0-7.5; P &lt;.001). '
The researchers followed the group over a 45 year span and in every case, they showed earlier mortality than their non-celiac counterparts. They also corroborated and adjusted their numbers in accordance with a related study:

'In the case of the Minnesota cohorts, the team found undiagnosed celiac disease in 68 persons with similar age at sampling (0.9%), and 46 persons with similar years of birth (0.8%). These recent cohorts showed rates of undiagnosed celiac disease that were 4.5-times and 4-times greater than the Air Force cohort (both P=.0001).'

The reasons for increased mortality rates are likely due to the degenerative effects of undiagnosed celiac disease--excess cancers, nutritional deficiencies, other associated conditions, etc. The study didn't get into the 'Whys,' just the fact that mortality rates are higher--meaning undiagnosed celiacs die younger than those without celiac disease (specifically, if you have undiagnosed celiac disease, over the 45 year period in question, you would die earlier than 400 comparable people without celiac disease 100% of the time--follow? So if you compared 10 celiacs to 4000 non-celiacs, or 100 celiacs to 40000 non-celiacs, the celiacs would ALL die before the non-celiacs--for whatever reasons).

They also note that with increased diagnosis and treatment trends, that this reality is changing. Fewer people will go through life with undiagnosed celiac disease, and so more people will live longer than they would have otherwise.


-J.A.




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Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!

Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks

Might want to look into a keto diet, I have UC on top of celiacs and keto is working great Yeah I have major nerve and brain issues with gluten, gluten ataxia with nerve issues and brain issues. Seems to cause my body to attack my brain and nerve system. My brain stumbles fogs, and starts looping, the confusion causes me to become really irritable, I call it going Mr Hyde. Like my mind will start looping constantly on thoughts and not move driving me literally mad, or it used to. Now days it is primary the numbness anger but the gut issues and sometimes random motor loss limit me motionless to the floor now days for the duration of the major anger effects. Used to be a lot more mental then painful gut. I did a mental trauma post on it on while back where I came out about all my mental issues with gluten.

^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.