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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.

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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 PDT
Please continue to add medical information about celiac.

 
Marsha
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said this on
11 Aug 2008 8:03:01 PM PDT
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 PDT
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 PDT
Great and very informative article!

 
Lisa Snellings
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said this on
12 Aug 2008 8:13:41 AM PDT
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 PDT
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 PDT
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 PDT
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 PDT
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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The Rash and various other symptoms are strong signs of Celiac, multiple people in your family also have it. I see several of your symptoms as very familiar to me myself, and I know that supplementation will help resolve the rest of your issues with a gluten-free diet. While we do suggest getting tested for confirmation if your limited as you say with insurance, and money then doing what is best for your health should be your focus right now. Go ahead and remove the gluten from your diet if you wish and go gluten free. If something happens later you MIGHT be able to put up with a gluten challenge and get tested at a later time. I feel for you and see the issues, I have Medicaid myself and my severe gluten reactions and allergies got me on disability for a good while. Testing was a pain in the ass for me as finding a doctor that takes Medicaid is bloody near impossible where I live. I do suggest supplementing Magnesium, Iron, Vitamin D, and B vitamins primarily right now. Others you might be low in are folate, E,C,A and various others. The nerve issues are strongly related to various b vitamins, magnesium, and D. I will share a link of what I take for a example. BTW have you checked out the newbie 101 thread? And if you need help finding gluten-free foods I have a huge list that I have complied for people although we normally suggest a whole foods diet only for the first month or so. Might want to drop dairy and oats for a bit, by the sound of your deficiency issues I would say it would be a huge help doing so. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/

It is meant to show you are a real person not a spammer. Not sure if it works anymore. Only Admin can see it and he doesn't do anything with it.

MelissaNZ, Has your daughter been checked for vitamin deficiencies??? Vitamin D deficiency symptoms include urinary incontinence, oral candidiasis (thrush), skin rashes, bumps on the backs of arms, joint pain, distended stomach and short stature. Bones can't grow much without vitamin D. Vitamin D deficiency causes delayed gastric emptying (food doesn't move through the gastrointestinal tract at a normal speed and the intestines bloat) which explains your daughter's delayed reaction to the cake. Vitamin A deficiency is also a cause of bumps on the back of the arms. Vitamin A deficiency causes vision problems. Vitamin A and D are both fat soluble vitamins. Absorption of fats is a problem for Celiacs. So is absorption of B vitamins and important minerals. B Complex vitamins are water soluble and must be replenished every day. Skin rashes are associated with several B vitamins like niacin (B3), B12, and thiamine (B1). I went through a period of severe malnutrition prior to diagnosis. It was not a pleasant experience. I had symptoms similar to your daughter's, including the incontinence, which resolved on vitamin D supplementation. Please, please have your daughter tested for vitamin D deficiency. And have her B vitamins checked as well. Celiac Disease causes malabsorption. Malabsorption causes deficiency diseases. Newly diagnosed Celiacs need to be checked for deficiencies. I hope this helps.

I will try to make my long story short, I have been searching my whole life for a diagnosis, I have seen pretty much every doctor possible I even went through a spinal tap recently because they thought I had multiple sclerosis, when I was younger I was always throwing up and having stomach problems, a couple hospital visits they thought I had appendicitis, I started having a neurological symptoms as well as anxiety and depression, The fatigue was just over bearing, I was having numbness and tingling and muscle spasms all the time eventually started having seizures, which kind of cycled through and stop happening after a couple months, and then it dawned upon me my brother has celiac pretty severely, my grandmother also has celiac, my dad does as well, I don't know why I never thought that it could be my issue, for the last week I have Been gluten-free and steering clear of cross-contamination, my dizziness is improved my fatigue is improved as well as rashes I was getting on my arms and sides, I have no more muscle jerks or spasms, The problem is I have horrible insurance and I cannot afford testing, so I am at least trying to do it an home blood test, I know it's not very accurate on telling me if I have celiac or not, But the thought I may never know for sure if I have it is very daunting. My family keeps telling me you don't need to spend thousands of dollars to have a doctor tell you you can't eat something you already know you can't. Just was wondering if anybody else has been in my position and seeing if anybody has a vi just was wondering if anybody else has been in my position and seeing if anybody has advice, I don't want to be known as one of those people who believe they have something and people with the disease frown upon them it's a very scary thing to think about.

...ON a side note this is quite easy, you can make your own out of any gluten-free Bread mix, I recently started using a coconut flour blend for this.......Most often people associate caraway with Rye Bread so you just add caraway seeds to the dough and a bit more vinegar to sour it a tad and BAM gluten-free Rye Bread knock off. I think Authentic Foods even has a additive to put in bread mixes to make it taste like Rye Bread....Or you can buy it preamade, I have issues with all the other ingredients but as for one of the best gluten-free Breads out the Canyon House makes a Rye like bread https://canyonglutenfree.com/buy-gluten-free-bread-products/Gluten-Free-Rye-Deli-Sandwich-Bread.html