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Primary Small-Bowel Malignancy and Celiac Disease

QJM, May 1, 2003; 96(5): 345 - 353

Celiac.com 05/29/2003 – A survey was recently conducted by Professor P.D. Howdle, St. Jamess University Hospital (UK), et al, to estimate the frequency in the UK of small bowel malignancy, and its relationship to celiac disease. Data were collected from 1,327 clinicians on a monthly basis between June 1998 and May 2000. The clinicians were asked to report all cases of newly diagnosed primary small bowel malignancy, and whether or not the patients reported also had celiac disease. Normally malignancies of the small intestine are rare, and they only account for less than 2% of all gastrointestinal cancers.

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Results: "Clinico-pathological data were ascertained for 395 cases, including 175 adenocarcinomas, 107 lymphomas and 79 carcinoid tumors. In 13% of adenocarcinoma cases and in 39% of lymphomas, there was a diagnosis of celiac disease. Survival rates at 30 months for adenocarcinomas, lymphomas and carcinoid tumors were 58%, 45% and 78%, respectively. Prognosis of all tumors was inversely related to stage at presentation, and lymphomas associated with celiac disease were associated with a poorer prognosis."

This study provides more evidence that those with celiac disease run a greater risk of getting adenocarcinoma of the small bowel, as well as lymphoma. Because of the high rate of metastatic disease in the patients studied, there appears to be a long time from the onset of symptoms to diagnosis, which is a concern.

Unfortunately this study does not address when celiac disease was diagnosed in these patients, and whether or not they were treating it with a gluten-free diet. Other studies have shown that cancer risk decreases to that of the normal population in patients who are on a gluten-free diet for at least five years.

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Only GIs can order a complete celiac panel at Kaiser. Your results look negative, but those are just "screening" results. You are not IgA deficient (used only as a control test for celiac disease) so that means the TTG IgA test worked. If you suspect celiac disease, ask for a GI referral. Keep eating gluten!!!! If you go gluten free then all the celiac tests will be invalid. You should rule out other issues like Crohn's, SIBO, etc based on your symptoms and health history. I would ask for a complete celiac panel from the GI. Why? Not all celiacs test positive to the TTG which is a cheaper, but excellent test but does not catch all celiacs like me!!!

Ditto. However, this is what I can never understand about gluten free food. (see the bold bits which I've taken from the article) "We wanted to determine if gluten consumption will affect health in people with no apparent medical reasons to avoid gluten. Gluten-free foods often have less dietary fiber and other micronutrients, making them less nutritious and they also tend to cost more,? I wonder why what so much of what I eat that's gluten free doesn't have added vitamins - we of all people need fortification in our cereals and bread, surely?

Yeah we learned that the hard way. I am inclined to think (as I did initially) that it was JUST the Cheerios but as time is passing and she is not bouncing back I am worried that we need to strip away dairy again for a while.

Oh I have no issue with being dairy free personally but tell that to a 13 year old. We both went gluten-free at the same time and it has been mindlessly easy for me. But I am easy about food and no real food issues. I am far more adaptable. She comes to the table with her own unique set of issues that complicate just easily transitioning to dairy free versions of much loved favorites. To most they are jst that "substitutes" to her they are completely different foods and ones that she has no interest in eating. They don't satisfy her need for XYZ. It is like craving an apple and someone handing you a fish. For her anyway! LOL!

I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha