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Low Rates of Biopsy May Drive Under-diagnosis of Celiac Disease

Celiac.com 08/01/2012 - Failure to conduct small bowel biopsies during endoscopy, especially on men and people of color, may be one of the reasons that celiac disease remains under-diagnosed in the United States, according to a new study. This finding was made by a research team that set out to study sex and racial disparities in duodenal biopsy evaluations for celiac disease.

Photo: CC--a.drianThe study, by researchers at the Celiac Disease Center at Columbia University Medical Center (CUMC), revealed that the United States has low overall rates of small bowel biopsy.

The research team included B. Lebwohl, C.A. Tennyson, J.L. Holub, D.A. Lieberman, A.I. Neugut, and P.H. Green. They are affiliated with the Celiac Disease Center of the Department of Medicine at Columbia University Medical Center at Columbia University, and the Department of Epidemiology at the Mailman School of Public Health at Columbia University in New York.

Celiac disease is a common but under-diagnosed condition in the United States. Moreover, studies indicate that, although celiac disease occurs at the same frequency in both sexes, women are diagnosed at a rate that is twice that for men (2:1).

Black patients are also diagnosed with celiac disease less frequently that non-black patients, though the rates of celiac disease in the black population remain unknown.

For their retrospective cohort study, the team set out to measure the rates of duodenal biopsy during Esophagogastroduodenoscopy (upper endoscopy, or EGD) in patients with symptoms consistent with celiac disease. These were adult patients undergoing upper endoscopy for symptoms including diarrhea, anemia, iron deficiency, or weight loss, in which the endoscopic appearance of the upper GI tract was normal.

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To accomplish their study, the team searched the Clinical Outcomes Research Initiative National Endoscopy Database from 2004 through 2009.

They looked at data for 13,091 individuals who met the inclusion criteria, 58% of whom were female, and 9% of whom were black.

They found that doctors performed duodenal biopsy an average of 43% of the time; 45% for female patients and 39% for male patients (P < .0001). Black patients received duodenal biopsy in 28% of EGDs performed, compared with 44% for white patients (P < .0001).

Multivariate analysis showed that male patients (odds ratio [OR] 0.81; 95% CI, 0.75-0.88), older patients (OR for 70 years and older compared with 20-49 years, 0.51; 95% CI, 0.46-0.57), and black patients (OR 0.55; 95% CI, 0.48-0.64) received duodenal biopsy at lower rates overall.

Over time, rates of duodenal biopsy rose slightly, but overall remained low in patients with possible clinical indications for biopsy.

From these findings, they conclude that non-performance of duodenal biopsy during endoscopy may be contributing to the under-diagnosis of CD in the United States.

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2 Responses:

 
Fiddle-Faddle
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said this on
06 Aug 2012 8:01:44 AM PDT
The problem here is not that there is failure to perform biopsies, but that the biopsy is required at all for diagnosis of celiac disease, but this goes back to how celiac was defined as a disease 50-60 years ago--before the sophisticated blood tests of today were available.

A biopsy should not be necessary if:
1) blood work is positive and
2) dietary response is adequate.

It's great to report on the findings of recent studies, but it's also important to analyze--and in some cases, criticize--those findings.

In most cases, it's OUR tax dollars, and the dollars WE have paid the pharmaceutical industry, that are funding these studies. We have every right to question, analyze, and criticize them.

 
Pam Larsen
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said this on
07 Aug 2012 11:10:40 AM PDT
My husband was just diagnosed with blood work for celiac disease in June and the doctor immediately scheduled him for a biopsy. We opted out for a couple of reasons. We have a very high deductible so the burden of cost of the biopsy would fall to us, and if the treatment plan is "change your diet" why would we have the biopsy? It has been 2 months and he is doing great. He has only had 3 times that he has been sick (and we know what he ate). He is putting on some weight. Leg cramps don't exist anymore. Bowels seem to be normal. I am anxious for a year to pass and have a CMP done to see if all his blood work is in the normal range. It took about 12-15 years of misdiagnoses to finally figure this out, so he has been extremely malnourished. Dietary response has been excellent and cheap.




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Yes the first has wheat gluten in the ingredients, the second via the wheat flour. Here in the UK manufacturers HAVE to highlight gluten sources. Check the ingredients and if WHEAT, BARLEY, or RYE are mentioned *usually highlighted, italicised or underlined, then you will know there's gluten. Most of iceland's processed foods will probably be gluten filled to be honest. Any breadcrumbed or battered foods for instance. Ps, you and me both have another disease, the british one of apologising You don't need to, you're very welcome here and all of your questions are valid and understandable. It's going to get better

Hi, I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them? http://groceries.iceland.co.uk/iceland-32-breaded-chicken-nuggets-448g/p/52275 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. http://groceries.iceland.co.uk/iceland-10-breaded-chicken-burgers-550g/p/52276 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. Thank you for all your help so far,

JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc. throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant. I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,

Hi Allie and welcome First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations! A lot of good advice has been brought together in this thread: Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment. You may want to avoid dairy as well for now and think about reintroducing it later. This site has been really helpful to me and others. I hope you find it just as useful. Best of luck! ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete! PPS( ) Inasmuch as your post can convey emotion, your's seemed positive Stay that way! At times the diet can be a bit isolating and some friends and family may struggle to understand. I'm sure it will be difficult at times making good choices and staying vigilant when everyone around you doesn't have to think twice. Stick with it, your health is paramount and it will be worthwhile. In time your good friends will get it and those that don't aren't worth worrying about. There are great foods you can eat and if not, learn to cook them yourself

Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!