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Is Diagnosis for Refractory Celiac Disease on the Rise?

New research indicates that refractory celiac disease may be on the rise. 01/14/2011 - Researchers recently presented information at the American College of Gastroenterology that indicates that more people with celiac disease might stop responding to gluten-free diets. Their new study, in the form of a retrospective chart review, turned up 17 cases of refractory celiac disease, each of which was eventually treated successfully with thiopurines.

Researchers Christopher Hammerle, MD, and Sheila Crowe, MD, of the University of Virginia in Charlottesville, reported the results at a meeting at the American College of Gastroenterology. Hammerle called thiopurines her "treatment-of-choice for refractory celiac disease to avoid long-term steroids." The researchers stated that refractory disease appear to be on the rise. Patients with refractory celiac disease have recurrent symptoms such as abdominal pain, severe malabsorption, and intestinal damage.

While some people note that refractory sprue might be caused by non-compliance to the gluten-free diet, current guidelines for treating refractory sprue call for doctors to review the dietary compliance of their patients, and to press for stricter adherence, and to search for other triggers of non-responsiveness only once dietary adherence issues are ruled out. In order to best understand the natural history of the celiac disease and to establish best practices for treatment, the researchers examined non-responsive celiac patients who had been seen at the University of Virginia Medical Center over the previous 10-year period.

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They found 17 such patients; 16 of whom had intraepithelial lymphocytes, four with the polyclonal phenotype and 12 with the monoclonal phenotype. One patient was untyped, while five patients also suffered autoimmune disease. The average age for diagnosis of a polyclonal phenotype was 45 years, and for the monoclonal phenotype mean age at diagnosis was 59. Overall, patients received a diagnosis of refractive disease an average of 4.7 years after receiving their diagnosis of celiac disease.

According to the data, diagnosis for refractive celiac disease seems to be happening more recently, with all but one diagnosis happening in the last five years, and 41% diagnosed within six months of the researchers report. Every patient diagnosed with refractive celiac disease showed evidence of malabsorption, while 71% suffered from iron deficiency Anemia, 59% suffered hypo-albuminuria, 47% had osteoporosis and 24% showed elevated liver enzymes.

According to Dr. Hammerle, steroids are the most common treatment choice for truly refractive disease. Indeed, more than four out of five refractory celiac patients (82%) first received corticosteroid treatment, but two patients went on to become steroid-dependent. Instead, Hammerle prefers to treat refractory celiac disease patients with a thiopurine. Of 14 of patients who received a thiopurine, all but one showed a notable improvement in symptoms.

Hammerle notes that, while diagnosis for refractory disease seems to be rising, celiac disease itself is still widely underdiagnosed. Brandt concurs, noting that people with undiagnosed celiac disease, or even persistent celiac disease, can develop serious complications, including lymphoma. In people with celiac disease, this can result from increased production of cytokines, including IL-15, Hammerle said, which promote the creation of T-cells that can turn malignant.


  • American College of Gastroenterology. Hammerle C, Crowe S "Natural history and treatment of refractory celiac disease: Experience with 17 patients at a single center" ACG 2010; Abstract 235. welcomes your comments below (registration is NOT required).

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11 Responses:

Don Kennedy
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said this on
14 Jan 2011 10:37:15 PM PDT
Since the onset of celiac is gradual, could it be that people have to become progressively more diligent about avoiding gluten? I did not initially have to avoid wheat beer, but now I do. Would this be considered refractory, or is it just a progressively increasing intolerance?

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said this on
23 Jun 2011 11:17:51 PM PDT
if you have gluten problems, you should not drink beer at all as it contains malt and barley, both which contain gluten.

( Author)
said this on
27 Jun 2011 12:57:58 AM PDT
Boyd, please keep in mind that many companies now make gluten-free beer using safe grains/ingredients.

Gary Reetz
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said this on
17 Jan 2011 10:03:54 AM PDT
Good article. It would be great if some of the medical terms are defined or written in terms the non-medical person could understand.

mary jane
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said this on
17 Jan 2011 10:36:15 AM PDT
Thank you so much for all your wonderful articles. Never stop learning something from this site.

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said this on
17 Jan 2011 12:04:53 PM PDT
There are a group of doctors looking at some patients labeled as celiac when that may not be all they have. The villi can be damaged by several amino acid level elements that leave the villi damage looking just like celiac.

Right now there is only a small group of women that has been discovered to have this problem with gluten no matter what the genetic testing stated.

I am one that is under review in a government study because of these issues. I have to eat gluten free but am not celiac. Yet my villi are damaged very bad because of my other genetic diseases. The damage is just "collateral damage" in a larger picture.

Sue Dereemer
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said this on
18 Jan 2011 12:41:05 AM PDT
My sister died at age 34, 1990, with small intestine lymphoma as a result of undiagnosed celiac disease. Her initial fight began in 1972. Medical ignorance her case eventually killed her. the only reason she survived as long as she did was shear will power and all of the drugs that were experimental back then that was used on her. So here I am today (2011) at age 57, diagnosed with celiac disease (2004), doing every thing in my power to avoid the Gluten hazards and I still have a feeling in my gut (sorry, bad pun) that eventually I too will succumb to small intestinal Lymphoma. And this with the medical community SOOO aware(?) of what Celiac Disease is. THAT IS A HELL OF A TIME BOMB TO CARRY AROUND EVERY STINKING DAY!!!!!!!

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said this on
18 Jan 2011 4:34:41 AM PDT
I wonder if refractory CD is really on the rise or is it that so many foods that used to be on the unsafe list have moved to the safe list combined with the amount of gluten that is allowed to be contained in a product and still be labeled gluten free. As a person who is extremely sensitive to gluten, only 1ppm makes me very ill, not to mention flour dust making the dermatitis appear and make-up, soap, shampoo, lotions etc. also making me ill.

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said this on
22 Jan 2011 9:14:08 AM PDT
Susie - I would be interested in hearing about your history with gluten intolerance. I started out with a dramatic recovery after going gluten free. This lasted about 2 years and then I started having problems again. I have worried from time to time about refractive celiac. I have seemed to improve after taking further precautions against cross-contamination and eating fewer processed foods labeled GF and not. I still could be doing better though. Did you experience a progression in your sensitivity or have you always reacted to such small amounts?

Gloria Brown
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said this on
31 Jan 2011 7:00:29 PM PDT
With age, the amount of gluten which makes me sick has shifted from ppm to molecular levels. My living and work area is devoid of gluten and over the past four years my diet has consisted of fresh produce, wild game and fresh spring water–no packaged products and only a few known GF personal care products. Whenever I am in the vicinity of gluten (i.e. people who consume it, grocery stores, public events, add nausea) I react to gluten with Classic Celiac symptoms. How so? Could it be gluten breaks away from many sources in a powder/flour/dust form to travel either by finger oils into the mouth (similar to germs) or by air breathed through the mouth or nostrils and reach the intestines? Research to validate the phenomenon I (and others I have seen experience the same) necessitates isolating those with Refractory Sprue into guaranteed GF environments while eating pure foods (including animal products which have not been fed grains), then exposing to gluten-dusted environments and documenting physiologic reactions. I suspect the original finding that those with Refractory Sprue are continuing to experience gluten remains true–and that this occurs from not only food contaminated with gluten, but environments which have become contaminated with gluten as well. If so, Thiopurines may provide temporary relief, with the individual remaining on a downhill slide.

I hope researchers reading this comment verify or disprove this hypothesis and would like others to comment here to specific Celiac reactions they experience to airborne gluten.

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said this on
05 Feb 2016 8:00:53 AM PDT
I was diagnosed with CD 18 yrs ago and was fine for some years until the last 5 years when I have been slowly going downhill. I went through a stressful time in my life and within months, I felt and looked ill. I have had liquid diarrhea for 17 months, just finished a course of Flagyl and now feel as if I am so weak, that I don't know how I will manage to survive much longer. Now , my GI doctor wants to perform a colonoscopy and I can't imagine going through that procedure and surviving. Does anyone have any suggestions. I do eat processed foods that say gluten free and my Ttg came out as 0.5 for gluten antibodies which signified that I was not consuming gluten. Thank you for any help from out there.

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All Activity Celiac Disease & Gluten-Free Diet Forum - All Activity

Hello and welcome I don't have an answer, like you I'm eating rice in processed foods as well as a side dish so I'm also wondering if I'm eating too much. If the rice is in a product like flour there's no way to tell how its prepared etc However for this: You can pre soak and rinse the rice in advance and change the way you cook it to reduce your exposure by up to 80% Details:

I use almond, and coconut a lot now my bakery used to use oat and almond blends. We never used rice, or starches as our goal was to keep it low glycemic. Now days we are transitioning to cut out oats. I started having....ok I omitted and gave in after being in denial a similar reaction to oats (10% of celiacs do if I recall) over a year ago. Anyway as for flour blends premade avoiding rice and grains try simple mills at I have composed a huge list of various gluten-free goods here, even recently updated with grain free, and pizza section

Hello Everyone, New here and have joined because I couldn't find an answer to my question online. I was diagnosed after a long spell with anemia in 2015 and have been on the diet (and improving!) ever since. But I wonder whether how much rice I'm eating is very healthy. I have always liked to bake and it took awhile to find a flour mix I like (Cup 4 Cup - worth its weight in gold...), but a lot of gluten-free food subs in rice (white rice, brown rice, rice flour) plus I eat actual rice as a side dish. Is this too much? Keep in mind, I also eat salads like it's my job and love making vegetable soups too. Any advice on gluten-free foods (specifically flours) that don't fall back on rice as a substitute? I should add that I can't really get excited about quinoa, despite my best efforts. Thanks in advance.

I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms. Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing. Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles. Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you. It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family. I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there.

Hi wondering if someone could help. my daughter has mildly raised TTG levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative. We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved. They haven't. But I don't know if they are related to gluten specifically. Just wondering if anyone has other suggestions that may be going on with her. Her symptoms are: - Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her - bumps on back of her arms - urine leaking and occasional soiled pants, which could be from constipation she has at time's - sticking out stomach - dry patchy rashes on her face - joint pain sporadically - vomits every 6 weeks, but hasn't had gluten and seems to be no food connection - reoccurring thrush She had gluten last night at a party and was fine today. I'm a bit lost and not sure where else to turn. Thanks for any help.