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Mayo Doctors Propose New Staging System for Refractory Celiac Disease

Celiac.com 01/30/2009 - Doctors from the Mayo clinic are proposing a new staging system for patients with Refractory Celiac Disease (RCD) after results of a recent study showed that their system offered greater accuracy and improved survival rates over the existing staging system. The new system will rely on the cumulative effect of 5 prognostic factors evaluated at the time of the refractory state diagnosis.

Refractory Celiac Disease occurs when both the symptoms and intestinal damage continue or recur, regardless of strict adherence to a gluten-free diet. In Refractory Celiac Disease, the immunophenotype of intraepithelial lymphocytes may be normal and polyclonal (RCD I) or abnormal and monoclonal (RCD II). The goal of this study was describe the clinical characteristics, treatment, and long-term outcome in a large single-center cohort of patients with RCD.

The study was conducted by doctors Alberto Rubio–Tapia, Darlene G. Kelly, Brian D. Lahr, Ahmet Dogan, Tsung–Teh Wu, and Joseph A. Murray, all with the Mayo Clinic in Rochester, MN. The research teams assessed and compared clinical characteristics and outcomes in 57 patients with RCD: 42 with RCD I and 15 with RCD II. The team developed a scale that served as the basis for the new staging system. Using Cox regression, they assigned a point score to each of the various prognostic factors. They assigned a score of 0 to patients who showed no Refractory Celiac Disease factors. A score of 1 or 2 was assigned for presence of prognostic factors by rounding each score and taking the sum of all 5 factors for a total score.

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The team then applied the system to survival rates within the study: Stage I combined patients with a point score of 0 or 1 (n = 27), stage II patients with a point score of 2 or 3 (n = 16), and stage III patients with a point score of 4 (n = 14).

  • Patients with total point scores of 0 (n = 15) or 1 (n = 12), showed overall 5-year survival rates of 93% and 100%, respectively.
  • Patients with a score of 2 (n = 7) or 3 (n = 9) showed 5-year overall survival rates of 80% and 65%, respectively.
  • Patients with a score of 4 (n = 10) or 5 (n = 4), the 5-year cumulative survival rates of 25% and 0%, respectively.
  • For patients in stages I, II, and III, the 5-year cumulative survival rate was 96%, 71%, and 19%, respectively (P < .0001).
Fifteen of the 57 patients died within 2 years of being diagnosed with RCD (8 with RCD I and 7 with RCD II). Over the five-year course of the follow-up, the overall survival was 70% for the entire cohort, 80% for RCD I, and 45% for RCD II. Most deaths were a result of refractory celiac disease, or to enteropathy-associated T-cell lymphoma (EATL).

Refractory Celiac Disease generally carries a high rate of mortality, and the outcomes for RCD II have been especially poor because of the tendency for EATL to develop.

Citing the results, the team is proposing a new staging system based on the cumulative effect of 5 prognostic factors investigated at the time of the refractory state diagnosis

Gastroenterology 2009; 136:000–000

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Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc. After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe. Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?. The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try: http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt

Similarly, I've been vegetarian for 25+ years. A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did. I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.

LOL, that might put it into perspective if I explain it that way.

I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!