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Long-Term Mortality in People With Celiac Disease Diagnosed in Childhood Compared With Adulthood: A Population-Based Cohort Study

Celiac.com 04/04/2012 - After numerous studies over several decades showing higher mortality rates in people with celiac disease, including a comprehensive study in 2009, published in Gastroenterology, news of a recent UK study, finding mortality rates for people with untreated celiac disease that are similar to the general population, has raised a few eyebrows.

Photo: CC - jimmediaWith diverse study data fueling differing opinions, questions regarding long-term mortality in people with celiac disease will likely take time to resolve.

In the meantime, a review of scientific literature brought up this small 2007 study. In it, a research team compared long-term mortality rates in people diagnosed with celiac disease as children with rates for those diagnosed as adults. They wanted to find out how those rates might differ and if the rates might be related to the disease and the length of gluten exposure before diagnosis.

To find an answer, the team gathered data for 285 children and 340 adults diagnosed with celiac disease. They continued to gather data for each until the end of 2004, excepting those who failed to follow up for other reasons.

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From their data, the team calculated standardized mortality ratios (SMRs) for the period starting five years after patient diagnosis. They found that adults diagnosed with celiac disease had 38% higher mortality rates (SMR 1.38, 95% CI 1.16-1.63). Children on the other hand, faced rates three-times higher (SMR 3.32, 95% CI 2.05-5.07).

This excess mortality in children was mainly due to higher rates of death from accidents, suicide, and violence (seven deaths, SMR 3.22, 95% CI 1.29-6.63), cancer (five deaths, SMR 3.72, 95% CI 1.21-8.67), and cerebrovascular disease (two deaths, SMR 10.03, 95% CI 1.21-36.00).

The 2007 study found that adults with celiac disease face a modest increase in mortality rates over the long-term, but that mortality rates for those diagnosed with celiac disease as children were three-times higher starting five years after diagnosis.

The team proposed that the increased mortality in children from external causes may be due to behavioral changes associated with living with life-long celiac disease and its treatment.

Stay tuned for further developments regarding mortality rates in people with celaic disease.

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5 Responses:

 
Dr Berylium
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
04 Apr 2012 1:39:23 AM PDT
This article really didn't tell us anything at all, and the statistics aren't explained well. The lousy content is more the fault of the authors of the study, not the article, however.

 
Lori Muir
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
06 Apr 2012 4:12:14 AM PDT
Mental and physical health are dramatically affected by gluten...however... I did not begin to heal until I went not only gluten free but also LOW FODMAP.

I think these docs are missing the boat here... I can't even get one to give me a fructose intolerance test..say they can't find the "codes" for billing to order it... I gave up on confirmation of fructose intolerance... I went to lactose free milk...no longer eat onions, garlic, cabbage family veggies, cut out some types of beans...these things and other high fodmap fruits and veggies...like apples, pears, berries, watermelon, cantelope, oranges. Things I thought were good for me were making me feel suicidal and causing much insomnia, IBS, and pain...

Now that I stick to my low fodmap plan..I feel healthy again for the first time in 15 years, but...now....when I screw up (and inadvertently, that happens a lot)... the pins and needles, arms and legs going numb, even my head goes numb at times, will start within minutes now of eating the offending foods, and depression thoughts will last for two days, with fatigue.

I was so sick prior to this, and I had these symptoms constantly, so I never associated the symptoms with foods. I just thought I was dying, and being diagnosed with fibromyalgia, chronic fatigue, nueralgia, IBS... chronic LYME disease... I could go on here, but the point is... none of my 28 docs, surgeons, specialists EVER said A WORD about food being the cause....even when I would tell them... things like... " Every time I eat a bowl of raisin bran, on those days...my vision gets so blurry and double I cannot see for rest of the day" .... or "When I drink orange juice, I start to heat up and sweat".... they brushed it off...as some SYNDROME SYMPTOM, or menopause...and wanted to give me more drugs...every time!

 
Marsha
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
09 Apr 2012 1:57:30 PM PDT
Not current and not enough information to substantiate facts given.

 
Nina
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
09 Apr 2012 7:07:51 PM PDT
The article states that they calculated ratios five years after diagnosis but they don't specify if the patients were on a strict gluten-free diet or if there levels were tested to suggest adherence to the diet. The article leaves you confused and it could be that the study did not list the specifics....either way, wish we had more details.

 
Megan
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
20 Oct 2012 6:40:46 AM PDT
This study seems flawed to me. It is essentially comparing mortality rates of children vs. mortality rates of adults. Celiac is not the main variable. In order for this study to be meaningful the researchers would need many more years of data and to make an apples to apples comparison.




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Yes the first has wheat gluten in the ingredients, the second via the wheat flour. Here in the UK manufacturers HAVE to highlight gluten sources. Check the ingredients and if WHEAT, BARLEY, or RYE are mentioned *usually highlighted, italicised or underlined, then you will know there's gluten. Most of iceland's processed foods will probably be gluten filled to be honest. Any breadcrumbed or battered foods for instance. Ps, you and me both have another disease, the british one of apologising You don't need to, you're very welcome here and all of your questions are valid and understandable. It's going to get better

Hi, I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them? http://groceries.iceland.co.uk/iceland-32-breaded-chicken-nuggets-448g/p/52275 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. http://groceries.iceland.co.uk/iceland-10-breaded-chicken-burgers-550g/p/52276 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. Thank you for all your help so far,

JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc. throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant. I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,

Hi Allie and welcome First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations! A lot of good advice has been brought together in this thread: Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment. You may want to avoid dairy as well for now and think about reintroducing it later. This site has been really helpful to me and others. I hope you find it just as useful. Best of luck! ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete! PPS( ) Inasmuch as your post can convey emotion, your's seemed positive Stay that way! At times the diet can be a bit isolating and some friends and family may struggle to understand. I'm sure it will be difficult at times making good choices and staying vigilant when everyone around you doesn't have to think twice. Stick with it, your health is paramount and it will be worthwhile. In time your good friends will get it and those that don't aren't worth worrying about. There are great foods you can eat and if not, learn to cook them yourself

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!