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Incidence of Enteropathy-associated T-cell lymphoma in The Netherlands

Celiac.com 08/01/2008 - One of the particularly aggressive and deadly types of cancer associated with celiac disease in adults is known as Enteropathy-associated T-cell lymphoma (EATL), which is a T-cell non-Hodgkin lymphoma that develops in the small bowel. So, if you haven’t heard of EATLs, you should know that while current estimates indicate that even though EATLs are rare overall, they are one of the most common causes of death in people with celiac disease.

One problem with studying EATLs is that the best statistical information regarding its prevalence is still based on estimates. Until recently, there had been no study made to determine the rate at which EATLs occur in the general population. A team of doctors based in the Netherlands recently set out to conduct such an assessment using the Dutch national network and patient registry of cyto- and histopathology reports (PALGA). The research team included Wieke H. M. Verbeek, Jolanda M. W. Van de Water, Abdulbaqi al-Toma, Joost J. Oudejans, Chris J. J. Mulder & Veerle M. H. Coupé.

The team looked at all T-cell lymphomas found from January 2000 to December 2006 that originated in the small bowel, and they computed some basic average rates of EATL occurrence for the Netherlands and worldwide, along with occurrence rates by gender and age. The team also factored in the location of the lymphoma, Marsh categorization for celiac disease, and the means by which the patients’ lymphomas were detected.

In people with celiac disease, eating wheat causes the wheat protein to trigger an adverse immune reaction that leads to inflammation of the intestinal lining, which can eventually cause the cells in the inflamed region to become cancerous. Even though celiac disease occurs twice as often in women as in men, men are far more likely to develop EATLs. Out of every 10 people who develop EATLs, only 2 to 5 of them have any obvious symptoms. Also, these statistics apply to untreated celiacs, and those diagnosed as adults, while people diagnosed as children and following a gluten-free diet have about the same rates of EATL as the general population.

Adults with untreated celiac disease are nearly 70 times more likely to die from lymphoma than people without celiac disease. Again, since more and more people are being diagnosed with celiac disease as adults, it’s important to get the clearest possible picture of the associated risks, especially when they are as serious as EATLs. The team also noted that most EATLs seemed to be centered in the proximal small intestine, and that diagnosis was generally made surgically.

The team looked at 116 incidents of EATL and found a rate in the general Dutch population of .10/100,000. This is about double the estimated western rate of about .05/100,000. For those over 50 years of age, the Dutch rate of EATL increased by a factor of 10 to 2.08/100,000, while over 60, the Dutch rate was 2.92/100,000. Still, in addition to afflicting almost only those with celiac disease, EATL seems to afflict mostly men. For those over 50, EATL rates were .09/100,000 for women, but nearly 3 times that, 2.95/100,000 for men.

One interesting part of the study was the acknowledgment by the doctors that increased cancer rates in celiacs have not been judged “sufficiently large” to warrant screening the general population that way some countries do. Instead, the doctors have adopted a strategy of checking patients with EATL for celiac disease. By their own admission, most patients with EATL have already been diagnosed with celiac disease. In any case, if you have a particularly deadly type of cancer it would seem a little late to test you for celiac disease. We at Celiac.com propose that a better strategy would be to test those with celiac disease for EATLs (and screen the general population for gluten intolerance).

This study drives home the importance of diagnosing and treating celiac disease as early as possible, and also reinforces the importance of faithfully following a gluten-free diet and getting regular follow-up biopsies and screening that would reveal an EATL.

Article citation:
Scandinavian Journal of Gastroenterology
Published on July 11, 2008
DOI: 10.1080/00365520802240222

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9 Responses:

 
Mary P.
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said this on
05 Aug 2008 7:08:58 PM PST
Please continue to add medical information about celiac.

 
Marsha
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said this on
11 Aug 2008 8:03:01 PM PST
As a person with Celiac disease, this article very much reminded me why I should stay gluten free forever and try to be as vigilant about it as I can. Sometimes we need to be reminded with such articles! Great read...Thank you
Marsha/Charlotte NC.

 
Judith Vukov MD
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said this on
12 Aug 2008 12:30:58 AM PST
I have been on the Gluten Free diet for 50 years - I am probably healthier because of it.

 
Karen Broussard
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said this on
12 Aug 2008 6:38:23 AM PST
Great and very informative article!

 
Lisa Snellings
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said this on
12 Aug 2008 8:13:41 AM PST
This is vital information. I will share it with all medical professionals; doctors and nurses, and dietitians.

 
Carol Kalkowski
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said this on
17 Aug 2008 11:54:14 AM PST
Having just found out at the age of 55 that I have Celiac, it is so overwhelming. I work very hard and seem to be very successful staying Gluten Free. I experienced a Celiac Attack during a very stressful time and bam! there I was in the thick of it. I feel much better now and am very healthy. Thank you for continuing the research that can help the common people like myself and the Doctors that help to serve us .

 
Dawn Inglis
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said this on
19 Aug 2008 10:56:05 AM PST
Please Spread the Word regarding EATL - my husband died at age 41 (2003, NJ, USA) of EATL. He was diagnosed with Celiac 3 months before the EATL was found. It was too late to Even begin chemotherapy. My two children have tested positive for Celiac and are doing extremely well on their diets.

 
Jennifer
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said this on
23 Mar 2011 10:31:36 PM PST
I have no insurance and was diagnosed with celiac for 3 years ago...how often should we be rechecked and tested for the refractory celiac and/or eatl?

 
Minnie
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said this on
02 Dec 2012 12:57:59 PM PST
I wish the doctors and consultants had read this informative article when treating my father. If they had, then surely my father's full condition would have been identified earlier. My father, who was a very active and young man of 74 years, became unwell in February. The doctors eventually diagnosed celiac disease in July, by which time my father was very weak through malnutrition. Despite following a gluten-free diet, my father's condition continued to deteriorate, and after 3 ultrasounds, the hospital radiologist eventually saw an abnormality in the small bowel. On 17 September, the consultant said my father had a tumour, probably lymphoma. After a biopsy we were told on 8 October it was EATL, and untreatable because of my father's weakened state and the advancement of the lymphoma. My father passed away on 26 October. It is so important to push your consultant to check for EATL signs when you have celiac and are still unwell. Had we known what we know now, my father might have at least had a chance to try some treatment.




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