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The Use of Computed Tomography in Refractory Celiac Disease and Enteropathy-associated T-cell Lymphoma

Celiac.com 08/17/2008 - One of the important ways doctors distinguish between the two types of refractory celiac disease is by looking at differences in intra-epithelial T lymphocytes (IELs) in intestinal biopsies. People with refractory celiac disease who show normal IELs are said to have refractory celiac disease I, while those with abnormal IELs are said to have refractory celiac disease II.

A team of doctors based in the Netherlands recently set out to assess the effectiveness of computed tomography (CT) in diagnosing refractory celiac disease, and enteropathy-associated T-cell lymphoma (EATL). EATL is a generally rare, but particularly aggressive form of bowel cancer that is the leading cause of death in adults with celiac disease.

The study team was made up of doctors Maarten Mallant, Muhammed Hadithi, Abdul-Baqi Al-Toma, Matthijs Kater, Maarten Jacobs, Radu Manoliu, Chris Mulder, and Jan Hein van Waesberghe.

The team looked at 46 patients with clinically proven celiac disease, refractory celiac disease I, refractory celiac disease II, or EATL including 18 males and twenty-eight females. The first group contained 14 patients with uncomplicated celiac disease and 10 with type I refractory celiac disease. The second group contained 15 patients with type II refractory celiac disease and 7 patients with EATL. 5 patients from group II showed lymphandenopathy, compared to none in the first group. 20 patients from group I showed a higher number of small mesenteric vessels compared to just 11 from group II.

This is significant because increased numbers of small mesenteric vessels are associated with an absence of refractory celiac disease II and EATL, while reduced numbers of small mesenteric vessels are associated with a higher rate of refractory celiac disease II and EATL.

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The team evaluated the two groups within eleven categories: abnormal intestinal fold patterns; bowel wall thickness, excess fluid; intestinal insussuction; ascites; lymphadenopathy; increases in lymph node numbers; mesenteric vascular changes; and spleen size. One other area the doctors found important was in differences in the average thickness of the bowel wall. Group I showed thinner bowel walls compared to group II. In group I, average bowel thickness ranged from 4mm to 11mm, with an average thickness of 7.0mm. In group II, average bowel thickness ranged from 5mm to 15mm, with an average thickness of 10.0mm. So, group II showed about 30% thicker bowel walls than group I.

The doctors’ conclusions reaffirmed the need for a biopsy before confirming a diagnosis of celiac disease. Regarding the use of CT, the team found CT unnecessary for cases of uncomplicated celiac disease, but found CT very useful in cases of complicated and pre-cancerous celiac disease.

The study team also found that pattern reversal and/or loss of jejunal folds is specific to celiac disease, though they had an admittedly small sample of just 24 of their 46 patients, so their measures are far from definitive.

All of this drives home the importance of encouraging early and accurate screening for celiac disease. Ideally, we will get to the point where, like many European countries, we will begin to catch celiac disease before it ever becomes refractory, and before it ever develops into EATL.

Until then, stay informed and take an active role in maintaining your own health.

World J Gastroenterol 2007; 13(11): 1696-1700

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2 Responses:

 
Lisa Snellings
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said this on
02 Sep 2008 7:22:43 AM PDT
Critical information such as this article are invaluable to patients and physicians.

 
melenda casey
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said this on
07 Sep 2008 11:04:48 AM PDT
I liked the article very much.




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I get it on the back of my right leg and right elbow. I have no idea why it's just limited to the right side of my body. My family care doctor prescribed me a steroid and steroid cream. The oral steroid has only made me grouchy and fat! I'm probably going to stop taking it since it hasn't helped the rash much. Good luck getting rid of yours!

Had The rash for years before I went gluten-free. My rash took about a month or two to heal and vanish. When I get glutened the rash areas start to itch a bit- besides being constipated it's my only clue! good luck and be patient

Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though. When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio. Too late, but that is kind of how it works. Your PCP does not know the GI docs. The scheduler just makes appointments. So, now, that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease. Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah." My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.

It is gluten free...I eat it regularly and have had no issues and it tastes yummy. ?

A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back. By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience. I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that? I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.