• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    80,621
    Total Members
    3,093
    Most Online
    roxannehart
    Newest Member
    roxannehart
    Joined
  • 0

    Is Diagnosis for Refractory Celiac Disease on the Rise?


    Jefferson Adams
    Image Caption: New research indicates that refractory celiac disease may be on the rise.

    Celiac.com 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.


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    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.

    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.

    Source:

    • 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.

    0


    User Feedback

    Recommended Comments

    Guest Don Kennedy

    Posted

    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?

    Share this comment


    Link to comment
    Share on other sites
    Guest Gary Reetz

    Posted

    Good article. It would be great if some of the medical terms are defined or written in terms the non-medical person could understand.

    Share this comment


    Link to comment
    Share on other sites
    Guest mary jane

    Posted

    Thank you so much for all your wonderful articles. Never stop learning something from this site.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    Guest Sue Dereemer

    Posted

    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!!!!!!!

    Share this comment


    Link to comment
    Share on other sites

    I wonder if refractory celiac disease 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.

    Share this comment


    Link to comment
    Share on other sites
    I wonder if refractory celiac disease 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.

    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 gluten-free 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?

    Share this comment


    Link to comment
    Share on other sites
    Guest Gloria Brown

    Posted

    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 gluten-free 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 gluten-free 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.

    Share this comment


    Link to comment
    Share on other sites
    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?

    if you have gluten problems, you should not drink beer at all as it contains malt and barley, both which contain gluten.

    Share this comment


    Link to comment
    Share on other sites
    Guest admin

    Posted

    if you have gluten problems, you should not drink beer at all as it contains malt and barley, both which contain gluten.

    Boyd, please keep in mind that many companies now make gluten-free beer using safe grains/ingredients.

    Share this comment


    Link to comment
    Share on other sites

    I was diagnosed with celiac disease 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.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Ads by Google:

  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

  • Popular Contributors

  • Who's Online   12 Members, 0 Anonymous, 457 Guests (See full list)

  • Related Articles

    Jefferson Adams
    Celiac.com 06/17/2015 - Refractory celiac disease type II (RCDII) and EATL (Enteropathy Associated T-cell Lymphoma) are pre-malignant complications of celiac disease. However, there is scant medical literature and data what role malnutrition and intestinal absorption may play in these conditions.
    With this in mind, a team of researchers set out to conduct a comprehensive assessment of nutritional status and intestinal absorption capacity of patients with RCDII and EATL, and to compare that with data of newly diagnosed celiac disease patients. The research team included N.J. Wierdsma, P. Nijeboer, M.A. de van der Schueren, M. Berkenpas, A.A. van Bodegraven, and C.J. Mulder.
    They are affiliated with the Department of Nutrition and Dietetics, the Department of Gastroenterology, the Celiac Centre Amsterdam, the Department of Nutrition and Dietetics at VU University Medical Centre in Amsterdam, The Netherlands; and with the Department of Internal Medicine, Gastroenterology and Geriatrics at ATRIUM-ORBIS Medical Centre, Sittard, The Netherlands.
    They conducted an observational study in tertiary care setting in for 24 RCDII patients, averaging 63.8 ± 8.2 years of age, 25 EATL patients averaging 62.3 ± 5.7 years of age, and 43 celiac disease patients averaging 45.6 ± 14.8 years of age.
    At diagnosis, the team evaluated anthropometry (BMI, unintentional weight loss, fat-free mass index (FFMI), handgrip strength (HGS), nutritional intake, fecal losses and Resting Energy Expenditure (REE)).
    They found low BMI (<18.5) more often in RCDII patients than in celiac disease or EATL patients (in 33%, 12% and 12%, respectively, p = 0.029). Also, 58% of EATL patients had unintentional weight loss greater than 10% of total weight, compared to 19% of celiac disease patients, and 39% for RCDII patients (p = 0.005/0.082).
    The team found energy malabsorption (below 85%) in 44% of RCDII patients, and in 33% of EATL patients, compared with 21.6% in celiac disease (NS).
    Fecal energy losses were higher in RCDII than in celiac disease patients (589 ± 451 vs 277 ± 137 kcal/d, p = 0.017). REE was lower than predicted, with reulst greater than 10% in 60% of RCDII, 89% of EATL, and 38% of celiac disease patients (p = 0.006).
    Between one third and two thirds of all patients showed Low FFMI and HGS.
    Patients with RCDII and EATL show far worse nutritional profiles than untreated naïve celiac disease patients at presentation. This malnutrition is at least partly due to malabsorption as well as hypermetabolism.
    This study shows the importance of proper diagnosis, and of nutrition in the treatment of these conditions.
    Source:
     Clin Nutr. 2015 Apr 30. pii: S0261-5614(15)00124-7. doi: 10.1016/j.clnu.2015.04.014.

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

    Jefferson Adams
    Celiac.com 07/12/2018 - Previous research has shown that the oral administration of Bifidobacterium infantis Natren Life Start super strain (NLS-SS) reduces of gastro-intestinal symptoms in untreated celiac disease patients. The reduction of symptoms was not connected with changes in intestinal permeability or serum levels of cytokines, chemokines, or growth factors. Therefore, researchers suspected that the reduction of symptoms might be related to the modulation of innate immunity.
    To test that hypothesis, a team of researchers set out to assess the potential mechanisms of a probiotic B.infantis Natren Life Start super strain on the mucosal expression of innate immune markers in adult patients with active untreated celiac disease compared with those treated with B. infantis 6 weeks and after 1 year of gluten-free diet.
    The research team included Maria I. Pinto-Sanchez, MD, Edgardo C. Smecuol, MD, Maria P. Temprano,RD, Emilia Sugai, BSBC, Andrea Gonzalez, RD, PhD, Maria L. Moreno,MD, Xianxi Huang, MD, PhD, Premysl Bercik, MD, Ana Cabanne, MD, Horacio Vazquez, MD, Sonia Niveloni, MD, Roberto Mazure, MD, Eduardo Mauriño, MD, Elena F. Verdú, MD, PhD, and Julio C. Bai, MD. They are affiliated with the Medicine Department, Farcombe Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada; the Small Intestinal Section, Department of Medicine and the Department of Alimentation at Dr. C. Bonorino Udaondo, Gastroenterology Hospital and Research Institute at the Universidad del Salvador in Buenos Aires, Argentina.
    The team determined the numbers of macrophages and Paneth cells, along with the expression of a-defensin-5 expression via immunohistochemistry in duodenal biopsies.
    Their results showed that a gluten-free diet lowers duodenal macrophage counts in celiac disease patients more effectively than B. infantis, while B. infantis lowers Paneth cell counts and reduces expression of a-defensin-5.
    This study documents the differential innate immune effects of treatment with B. infantis compared with 1 year of gluten-free diet. The team calls for further study to better understand the synergistic effects of gluten-free diet and B. infantis supplementation in celiac disease.
    Source:
    J Clin Gastroenterol

    Jefferson Adams
    Celiac.com 07/11/2018 - For people with celiac disease, finding decent gluten-free bread is like searching gold. Many have given up on bread entirely and others begrudgingly relate themselves to the ignominious frozen aisle at their supermarket and content themselves with one of the many dry, shriveled, flavorless loaves that proudly tout the gluten-free label. 
    For these people, the idea of freshly baked bread is a distant, if comforting, memory. The idea of going to Paris and marching into a boulangerie and walking out with a warm, tasty, gluten-free baguette that was freshly baked on the premises that morning, is like a dream. Now, in some Parisian bakeries, that dream is becoming a reality. And the tear of joy from the thankful gluten-free masses are sure to follow.
    These days, a single sign on the awning speaks to hungry customers who peruse the tarts and chou buns, and the loaves that fill the cooling on racks behind a glass pane at Chambelland boulangerie and café in Paris’ 11th arrondissement. The sign lettered in French translates: “artisan baker; flour producer; naturally gluten free.” That’s right. Naturally gluten-free. At a bakery. In Paris. 
    Only the flat, focaccia-style loaves, and the absence of baguettes, tells customers that this bakery is something different. Chambelland opened its doors in 2014 and continues to do a brisk business in delicious, freshly baked gluten-free breads and other goods.
    The boulangerie is the work of Narhaniel Doboin and his business partner, Thomas Teffri-Chambelland. They use flour made of grains including rice, buckwheat and sorghum to make delicious gluten-free baked goods. Doboin says that customers queued in the rain on the first day, hardly believing their eyes, some began to cry. 
    For gluten-free Parisians, there was a time before Chambelland, and the time after. If you find yourself in Paris, be sure to search them out for what is sure to be a gluten-free delight.
    Or maybe book your ticket now.
    Read more at: Independent.co.uk