Many of my patients with celiac disease ask whether it is OK to “cheat” on their gluten free diet.
This study titled “Small Intestinal Histopathology and Mortality Risk in Celiac Disease” just published in the Journal of the American Medical Association shows that patients may be gambling with their lives if they do so.
The study compiled all small bowel biopsies taken in Swedish patients between July 1969 and February 2008. The researchers divided patients into several groups – those with villous atrophy, those with intestinal inflammation (which the study says is equivalent to intraepithelial lymphocytes in Sweden), and those with normal mucosa. Out of 287,586 unique patients who had biopsies, celiac disease was found in 29,148, inflammation was found in 13,446, and the mucosa was normal in 244,992. The researchers also found 3,736 patients with “latent celiac disease” – meaning that they had normal intestinal biopsies and positive celiac disease serology (blood tests).
The researchers then compared death rates between these different groups of patients with death rates from the general population.
For patients with celiac disease (atrophy on biopsy), the risk of death was 39% more than the general population. Patients with inflammatory changes on their biopsies had a 72% increased risk of death, and patients with latent celiac disease had a 35% increase in risk of death.
Patients with celiac disease had a 19% greater likelihood of dying from heart disease, 55% greater likelihood of dying from cancer, 36% greater likelihood of dying from lung problems, and 65% greater likelihood of dying from other causes.
Patients with inflammatory changes on their biopsies were 35% more likely to die from heart disease, 232% more likely to die from cancer, 46% more likely to die from lung problems, and 201% more likely to die from other causes.
There were not enough patients with latent celiac disease (normal biopsies with positive blood tests) to predict cause of death in several categories, but patients with latent disease were almost three times more likely than the general population to die from respiratory problems. Cause of death was also higher in all the other categories, but did not reach statistical significance.
One other interesting thing noted in the study is that risk of death was much higher in the first year after celiac disease was diagnosed and then tended to level off with time. In fact, those with inflammatory changes on their biopsies had a risk of death almost 5 times greater than the general population in the first year after diagnosis. Those with celiac disease had a risk of death almost 3 times greater than the general population in the first year after diagnosis. The researchers believed that this discrepancy may be because the patients were likely to be more ill and have more severe symptoms leading to the diagnosis of celiac disease. Once a gluten free diet is initiated, it can take 1-2 years for the changes to resolve.
There were several interesting things I noted about the study findings.
First, if we add up all the categories, the incidence of celiac disease for patients undergoing intestinal biopsy was 29,148 + 13,446 + 3,736 out of 287,586 total patients. That totals more than 16% of patients undergoing intestinal biopsies in Sweden who had either biopsy or serologic findings consistent with celiac disease.
Second, 1.3% of patients had normal small bowel biopsies, considered the standard for diagnosis in the US, but still had positive serologic tests for celiac disease.
Third, the study shows that celiac disease is more than just a bad reaction to food. Uncontrolled celiac disease causes changes in the body that increase the risk of death. The better that we follow a gluten free diet, the more likely we are to live long healthy lives.
Finally, celiac disease awareness is increasing! See news stories about this study in:
The Los Angeles Times
Medscape
Medpage Today
A .pdf copy of the study can be found here.
September 26, 2009 at 3:27 am
Thank you for your posts on this blog! I have been doing my own research (as a layperson, not a medical professional) and it is hard to come by studies where I don’t have to pay for the journal articles and so on and get the information I want and need. I’m putting a lot together on my own, though, for my own situation which is that I am clearly gluten-intolerant (I’ve improved dramatically over the past six months of eating gluten-free) but don’t have access to medical care right now and so cannot be tested to find out for certain if I have Celiac. Therefore, I have to do my best to keep myself informed and study my own body carefully to note what is going on, what reactions I have, etc.
The statistics are really interesting in this study! I found this one really interesting in particular: “The researchers also found 3,736 patients with “latent celiac disease” – meaning that they had normal intestinal biopsies and positive celiac disease serology (blood tests).” There are SO many factors in looking at how Celiac develops, what its root causes are, and the immunological implications of it all. I realize that science is really only seeing the tip of the iceberg with this and other auto-immune diseases and reactions. It’s really interesting stuff to me!
So, thank you again. 🙂 Here’s to science discovering more and more so that humans can live healthy and productive lives!
September 26, 2009 at 9:46 am
You are welcome! I am happy to provide any info I come across. As a celiac myself, I find the statistics staggering. Just tells me that we have to work much harder on early diagnosis to improve the overall mortality from the disease!
October 14, 2009 at 12:40 pm
Hi Dr. Sullivan,
Thank you for breaking down the essential info in that study.
I just wanted to clarify something: Do most of these statistics apply to people who have UNTREATED Celiac Disease? Such as increased death, cancer, etc. In other words, I’m wondering if, as a person who has been on a gluten free diet for nearly five years (I was diagnosed when I turned 36), I still have higher risk in all of the categories cited in the study.
thanks,
Laura
October 14, 2009 at 6:06 pm
Good question.
The study is a little unclear on this issue, but I’m going to make an assumption that the risk includes those treated for celiac disease. Here’s why:
The comments section of the study noted that patients with celiac disease are treated with a gluten free diet while those with “inflammatory changes” are not. Death rates were higher in the inflammatory changes group.
According to the study, the overall risk of death for patients with celiac disease is 1.39 (39% more likely).
In the first year of diagnosis, that risk is 2.80 (almost three times more likely).
But … after the first year of diagnosis, when the disease is presumably being treated, the overall risk of death drops to 1.22 to 1.27 (22% to 27% more likely).
The bottom line is that according to this study, it appears that following a gluten free diet decreases the the risk of death, but the risk of death in patients with treated celiac disease is still higher that that of the general population.