<<Disclaimer: Verify this information before applying it to your situation.>> Dear Listmates, Sorry it's taken me so long to summarize the replies to my question. Somehow in my reading and learning about celiac I missed seeing the information about the higher incidence of t-cell lymphoma in non-diagnosed celiacs. I feel very, very lucky that I found out about being celiac (thanks to an article on celiac disease in the Readers's digest 11 years ago) and have since done my utmost to maintain a gf diet despite all the challenges! Here are summaries of some the many replies I got from my original question of why a reply in Medscape to a celiac question included the information that t-cell lymphoma was common. From Joanne: There are a number of studies (if I have time tomorrow, I'll go looking for them) that have shown that the incidence of T-Cell Lymphoma among non-compliant celiacs is 100 fold greater than for the normal population (0.1%). After 5 years on a GF diet, the incidence for a celiac is that of the normal population. The ones I worry about are the non-diagnosed or latent celiacs -- they're non-compliant because they haven't been told otherwise. :from Debbie: T-cell lymphoma is a type of bowel cancer. The celiac population has an increased incidence of this if the celiac disease is left untreated. Therefore, people who are compliant with the GF diet have no more chance of developing it than do the non-celiac. from Rosalie: About the lymphoma, only celiacs who do not stay on the diet for life are prone to this. I have not read where ALL get lymphoma. Certainly on our list (the celiac listserve) there are only been 2 that we know of. from Susan: My dad has known about his celiac disease for a decade. His doc told him that cancer of the small intestine is more common among celiacs. So, my dad has a biopsy every other year to check for cancer. It is a day surgery procedure. Dad is 69 now. from Vance: It's a cancer of the intestines. It is 3 to 10 times more common among undiagnosed celiacs, but about the same as the rest of the population among diagnosed celiacs who observe the diet Kelly forwarded some abstracts; this is one of them: Coeliac disease and malignancies. Ferguson A, Kingstone K Department of Medicine, Western General Hospital, University of Edinburgh, UK. When compared with the general population, patients with coeliac disease (CD) have an increased risk of developing enteropathy-associated T-cell lymphoma (EATCL), esophageal and pharyngeal squamous carcinomas and small intestinal adenocarcinomas. The prevalence of histologically confirmed CD in Edinburgh and the Lothians in 1979 was 61 per 100,000. The National Health Service Central Records of all 653 subjects registered at that time have been flagged, allowing us to analyse mortality in CD. At a mean of 13.5 years, mortality overall was 1.9-fold that of the general population (115 deaths observed. 61.8 expected; p < 0.0001). For both sexes the early mortality was much greater than expected, but the excess steadily diminished with time from diagnosis. Much of the increased mortality from malignant disease was accounted for by deaths from lymphoproliferative disease and esophageal cancer. Interim re-analysis after a further 9 years shows that the pattern of later deaths is consistent with these trends. Clinical and pathological features of lymphomas in CD are described. In serum samples of 41 patients with normal villus architecture while taking a normal diet, but with minor pathological and/or immunological abnormalities, i.e. potential CD, IgA antiendomysium antibodies were positive in 7 with dermatitis herpetiformis but in only 3 others. and lastly, this message, unsigned: My husband has TCell Lymphoma. He was a diagnosed celiac sprue about 2 years ago. He responded well to the diet for about 6 months and began to have diarrhea again. It took about 6-8 more months to diagnose the TCell Lymphoma. It is a known complication of celiac sprue albeit not a common one. Symptoms are sudden unresponsiveness to the gluten free diet, diarrhea, fatigue, perhaps abdominal pain. Most lymphomas are B Cell (95%) so TCell is uncommon. Workup up includes CT scans, gallium scan. My husband had abdominal pain for about 2 months they couldn't diagnose and then developed a perforation of the small bowel for which he needed emergency surgery last labor day. It was from that specimen that the diagnosis was made. Treatment is aggressive chemotherapy following surgery. He has just finished this round of chemo. Results are still being determined.