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    Wendy Cohan
    Celiac.com 08/28/2008 - Gluten intolerance can affect all the mucous membranes of the body in sensitive individuals, including the bladder lining.  I was diagnosed in 1996 with an incurable, progressive, painful disease called interstitial cystitis.  The symptoms mimic those of a bad bladder infection, although most lab tests are negative for bacteria, and antibiotics generally do not help.  I knew as a nurse how the bladder functions, and that it needs to have an intact lining to tolerate holding all the toxic wastes of the body prior to elimination.  It made sense to me to try a dietary approach, and I had good luck immediately by excluding from my diet known bladder irritants like tomatoes, caffeine, chocolate, citrus, and alcohol, even though most doctors at the time gave diet little credit for a reduction in symptoms.   Nevertheless, the disease did progress over time, and I eventually needed to take pain medications, anti-spasmodics, and other medications to enable me to function.  Every urine test showed that I had significant amounts of blood in my urine.  No one ever tested me for food allergies, gluten intolerance, or considered any other possible cause.  No one suggested that my symptoms were part of a systemic dysfunction in my body.  I had a painful disease, and they would give me as much pain medicine as I wanted, but there was no cure.
    I was no longer getting enough sleep to enable me to function well as a nurse.  I made the choice to stop working for a few years to concentrate on rebuilding my health.  I was in constant pain.  It was about this time that I began turning to alternative practitioners for help, and started experimenting with my diet, as well as having food allergy and sensitivity testing done.  I had some success eliminating the swelling in my pelvic area using castor oil packs, enough so that when I had increased swelling from eating a particular food, I could tell the difference.  Careful observation showed me what did and did not negatively affect my bladder.  Eliminating gluten resolved a long-standing rash on my legs, called dermatitis herpetiformis, and after about two years and a lot of alternative bodywork, my bladder began to significantly recover.  It was the first area to show symptoms, and the last to recover.
    Now, twelve years after my interstitial cystitis diagnosis, my urologist readily agrees that gluten negatively affects the bladder in some portion of her patients, and that eliminating gluten leads to a reduction in symptoms. All of my urine tests are perfectly normal and I sleep at night.  Still, there are almost no published journal articles linking gluten intolerance and the bladder. I am trying to get the word out there, specifically, the idea that we do not have to live with constant pain, and that what we eat can affect our health.
    My future goals include beginning an informal clinical trial in the form of a support group for patients willing to try a gluten-free diet as a treatment for chronic bladder symptoms.  If anyone is interested in the link between bladder symptoms and gluten sensitivity, I have pages of anecdotes gathered from many people who have experienced healing on a gluten-free diet.

    The Connection Between Bladder Symptoms And Gluten Sensitivity - A Collection Of Personal Experiences*
    *Names have been changed to initials to protect individualsprivacy.The author has the originalweb-posts or other identifying information. A summary of web posts from icpuzzle@yahoogroups.com and intersitialcystitischronicpain@yahoogroups.com and personal communications revealing strong evidence of a connection between bladder symptoms and gluten sensitivity. This article is an adjunct/follow-up to the above article on gluten sensitivity and bladder disease.

    …”The main help came from W.’ssuggestion to try to eliminate wheat-barley-rye (gluten).The Elmiron was getting close it it’s maxwithout constantly abusing the situation with gluten…about three months ago Istarted eliminating gluten-carrying grains, “wallah” absolutely the mostsignificant change started happening about 3 or 4 days from the last day ofgluten.  How much better am I now sincethen – about 500% better (close to where I was when I first noticed the IC,even though I didn’t know what was happening – close to TWENTY YEARS AGO).  I am still of the opinion that some kind ofcritters have and maybe still play a part of this.  I have taken every kind of antibiotic, with alittle success now and then, but not enough to kill it.” “It took about 3 months to seemild improvement, about a year to see moderate improvement, and about 2 yearsto feel much better.  I am not 100percent symptom free, but most of the time I am a very manageable level ofsymptoms, and when I flare (from diet or sex) it is very short lived.I am down to one Elmiron a day (from theoriginal dose of 3) and I also do a gluten and sugar free version of the ICdiet, which I also think has helped me a lot.” “I have had IC for 30 yearspretty severely.  It was only this pastyears that I got tested …and found out I had a severe wheat-gluten allergy tothe point that I cannot ingest one bite of anything with wheat or gluten…theysaid my whole digestive tract was inflamed…Over the years I knew I was wheat,dairy, and sugar intolerant but these (latest) tests are more specific and letyou know the levels.  I feel muchstronger and have many days when I am symptom free.  I finally feel different.” “I have started cutting wheat andgluten out of my diet, its been about 2 weeks now.  I, like M., have IBS.  I am feeling better every day.I am following a diet very similar toyours.Thank you for posting it again!” “I have had IC for over adecade.  I have been on a gluten freediet for over 6 years and that has been the only thing that has given me anyrelief from the IC.  I no longer take anymeds at all – haven’t even been to a doctor for the IC in several years.Glad to hear someone else is seeing thebenefits of the gluten-free diet for IC and getting the word out.  I would definitely suggest anyone with ICgive it a try.  It definitely gave me mylife back." “Where have you been for the lasttwenty plus years?You may have saved mylife.I have described these symptomsfor years to doctors and never got an answer that sounded even close to whatwas happening.  Just “try these antibiotics”once in a while at the beginning (there was minimal change), but more and morethe antibiotics got more and more expensive with less and less effect if any atall, it even included the kill-all antibiotic – kills everything except me…Went to nerve doctor ($2,500 plus, pelvic x-rays (2 or 3 types).One of the urologists… never said anythingbut “prostatitis” over and over again. My head now also has a nearperfectly clear thinking ability, before it was always a bit cloudy even thoughI may not have been totally aware of it.The feel of carrying extra weight is now almost gone. The gluten issue may not be theonly issue I have – prostatitis is likely to be part of the pain problem, butthere is no question that the gluten issue has been a very, very large part andis now subsiding.” “I was tested for glutenintolerance but it came out negative but while I awaited results I went gluten free and I felt so goodI never went back.  I have had a lot ofimprovement going gluten and sugar free as well.I can find rice pasta, lasagna etc.easily.  It’s amazing how you don’t haveto try hard to substitute (for) it.” “I have gone from having to gowith urgency every 5 to 10 minutes and being in constant pain (especially atnight) to having almost no symptoms.   I am not “cured”.  I am still working on healing.  I occasionally have a mild flare.  Gradually I am able to add foods back into mydiet – a very different diet than before.  Whole foods, more veggies, only whole grains (no wheat), no sugar, and anoverall more alkaline diet….There is help.  There is hope.” “I am just into the first severalchapters of the book (Solving the IC Puzzle, by Amrit Willis, R.N.), but wantedto stop and ask if there were any people who were celiac or gluten intolerant thatalso suffer from IC.  In my celiacsgroup, there are quite a few that have celiacs that (also) have IC.Autoimmune – allergy – poor lifestyle choices– toxic body – all related.  So, I amwondering if there are others in this IC group that are glutenintolerant/celiacs or who have suffered from, have, or have healed fromautoimmune diseases…” “I have celiac disease also.  I was diagnosed via a blood test about 4months before the IC thing came to a head.  I disregarded the doctor’s warning to stay away from gluten/wheat.I went to a gastroenterologist because I feltlike I was having a stomach flu every 2 weeks.  So I saw this guy and he gave me the blood test results (which Iignored) until finally, I felt so bad I decided to whit the gluten/wheat.I had a friend who has celiac really severelyand she told me that I might as well cancel my hydrodistention to test for ICbecause eliminating wheat/gluten might clear everything up for me.  Unfortunately, I had thehydrodistention which made me much worse, IC-wise….Sorry for the long-windedanswer.I finally stopped taking theElmiron…So far so good.I really don’texpect to have a problem.  It was justhard letting go.  I don’t know which came first(the celiac or the IC).Looking back,every time I drank beer I always felt bloated right away.  Classic example, on our way to skiing, wewould stop for two beers.  Relievingmyself before getting back in the car, I would be dying for the bathroom beforewe reached our destination, 45 minutes later.  I though this was normal.Isuppose it was the celiac and IC kicking in. Too bad it would take 10 years and 3 pregnancies later to diagnose it…” “I have been diagnosed withgluten sensitivity and am gluten-free.  Since I was already eating very little in the way of grains at mynutritionist’s urging, I don’t find the diet that difficult to follow.I try to be very careful.” “I agree with these 2 types ofpastas.  I also find that when I eatwheat (which is an allergy I have) that my bladder gets irritated…” “…So, W. your IC is totally goneright now – especially after cutting out gluten?  I have known for years and years that I wasgluten sensitive as whenever I wouldn’t eat gluten or wheat, if I just atevegetables and protein my stomach would be soooo quiet.Hindsight is 20/20 – just wish I would havegiven up gluten years ago and maybe this wouldn’t have happened.  I am checking into pelvic floortherapy and will have that done along with many other things – I am soterrified of this getting worse, absolutely scared to death.  Thanks for your words ofencouragement and comfort.” (Personal Communication)“Suddenly some of the mysteriesof what's been called my "wheat intolerance"or "allergy" were resolved.  In particular, I no longer thinkI'm crazy for suspecting a link between my 2.5-year-long urinary tract infection and the onset of my moreobviously wheat-related symptoms. Thanks so much for getting theword out, and sharing your experience!” (Personal Communication) “I about fell off my chair when Iread about your bladder stuff.  I've seen 3 specialists (including adigestive doc and a urologist!!), a regular PCP, and a naturopath, andnone of them were willing to consider a link between wheat issues and my poorbladder's troubles. It was like the world lifted offmy shoulders - I'm not crazy!  And my body is not the wreck I thought itwas at the ripe old age of 31!Seems funny to be exultant aboutprobably having celiac disease, but that's whatI've been since.”

    Jefferson Adams
    Celiac.com 01/22/2009 - Is celiac disease sidelining the cherished CEO of one of America's iconic companies?
    Recent news that Apple CEO Steve Jobs will be stepping down from his duties, at least temporarily, has fueled speculation both online and in mainstream media about both his condition and his prognosis, in addition to sending Apple shares tumbling downward.
    Jobs announced in early January that he was suffering from a "hormone imbalance that has been robbing [him] of the proteins [his] body needs to be healthy," and which has led to dramatic weight loss. The announcement stated that Jobs' condition was due to a "nutritional problem" for which treatment is "relatively simple and straightforward."
    Apple announced in mid-January that Jobs was taking medical leave through June. The SEC recently announced that it will undertake a review to ensure that investor notification of the health disclosure was timely and forthcoming. Still, the larger question remains: What ails Steve Jobs, and how will it effect Apple?
    A number of people have speculated that Steve Jobs might be suffering from the effects of untreated celiac disease. Type the terms "Steve Jobs" and "celiac disease" into Google and you will get about 7,000 results.
    In his piece in the Motley Fool, Tim Beyer notes that, according to sources cited by The New York Times, Jobs is suffering not from a recurrence of pancreatic cancer but from a condition that is "preventing his body from absorbing food." Beyer goes on to state: "I've said before that his condition sounds like celiac disease and I still believe that."
    Jobs underwent an undisclosed procedure for a pancreatic tumor in 2004. Whipple surgery,  a common treatment for Pancreatic cancer, involves removing portions of the stomach, pancreas, bile duct and small intestine, and can interfere with digestion and nutritional uptake, even years later.
    However, more than one doctor has pointed out that Jobs' description of the condition seems a bit confusing. Dr. Robert Lustig of UCSF Medical Center says that the statement "doesn't make a lot of sense." He goes on to point out that "[t]here are three medical threads that run through this e-mail, but unfortunately those threads don't make a very strong cable."
    When asked if celiac-related hyperthyroidism might be explain Jobs' symptoms, Dr. Lustig noted that celiac disease does interfere with the body's ability to uptake nutrients, but that celiac disease is a digestive order, not the result of a hormone imbalance. Moreover, there is no single condition wherein a hormone imbalance and protein deficiency can be treated with a simple dietary change.
    Still, thyroid problems, both hyper- and hypothyroidism are common in people with celiac disease. Untreated celiac disease can cause intestinal damage, and prevent proper absorption of nutrients, including protein, leading to weight loss. Hyperthyroidism can cause hormone imbalance.
    When asked if it was possible that Mr. Jobs' explanation had conflated two conditions, celiac disease, which would rob his body of proteins, and would also require a "nutritional therapy," together with hyperthyroidism, which would cause a "hormone imbalance," Dr. Lustig conceded that such a scenario was possible, but he declined to speculate upon the likelihood.
    Dr. Lustig did point out that even if celiac disease and hyperthyroidism were at the root of Mr. Jobs' symptoms, that "neither celiac nor hyperthyroidism has anything to do with his previous pancreatic chromaffin cell tumor."
    However, such a scenario would certainly dovetail with Jobs' statement, and would also explain the relatively "simple and straightforward" nature of the treatment; even related hyperthyroidism would be easily controlled with drugs (usually Methimazole).
    In fact, if celiac disease and hyperthyroidism is at the heart of the problem, Mr. Jobs will likely face a very positive prognosis, as they are both treatable conditions. By following a simple course of drugs for hyperthyroidism, and by adopting a gluten-free diet for celiac disease, Mr. Jobs would be looking at a recovery period that would put him back in the saddle in just a few months, or around June, just the time he's scheduled to return to his duties at Apple.

    Robert Lustig, M.D. is with the Division of Pediatric Endocrinology at UCSF, and speaks on behalf of the Hormone Foundation, which is the public outreach arm of the Endocrine Society. Dr. Walter Willett is chair of the department of nutrition at the Harvard School of Public Health.
    References:
    Apple letter from Steve Jobs:
    http://www.apple.com/pr/library/2009/01/05sjletter.html Motley Fool: Apple Out of a Jobs - Tim Beyers
    http://www.fool.com/investing/general/2009/01/15/apple-out-of-a-jobs.aspx TIME: What's Ailing Steve Jobs? Medical Opinion Varies - Tiffany Sharples
    http://www.time.com/time/health/article/0,8599,1869975,00.html Bloomberg: Apple Disclosures About Jobs Said to Face SEC Review (Update4) - David Scheer and Connie Guglielmo
    http://www.bloomberg.com/apps/news?pid=newsarchive&sid=aDL78iMCdOzk Thyroid Problems Often Seen with Celiac Disease:
    http://www.healthcentral.com/ibd/news-275806-66.html


    Jefferson Adams
    Celiac.com 08/08/2011 - In the face of steadily rising numbers of people with celiac disease, very little information exists on the economic costs and impacts associated with celiac disease.
    A team of researchers recently set out to assess the impact of celiac disease diagnosis on health care costs and the incremental costs associated with celiac disease.
    The research team included K. H. Long, A. Rubio-Tapia, A. E. Wagie, L. J. Melton III, B. D. Lahr, C. T. Van Dyke, and J. A. Murray.
    They are affiliated variously with the Division of Health Care Policy & Research, the Division of Gastroenterology and Hepatology, the Division of Epidemiology, and the Division of Biomedical Statistics and Informatics at the College of Medicine of the Mayo Clinic in Rochester, Minnesota.
    To carry out their population-based cohort, the team used administrative data on celiac disease cases and matched controls from Olmsted County, Minnesota.
    They compared: 1) direct medical costs one year before and one year after celiac disease diagnosis for 133 index cases and for control subjects; and 2) cumulative direct medical costs over four years for 153 index celiac cases and for control subjects. Their analyses did not include diagnostic-related and outpatient pharmaceutical costs.
    They found that a diagnosis of celiac disease lowers the average total costs by $1,764 in the year following diagnosis (pre-diagnosis cost of $5,023 vs. $3,259; 95% CI of difference: $688 to $2,993).
    They found also that, over a 4-year period, people with celiac disease faced an average of $1,457 in higher outpatient costs (P = 0.016), and an average of $3,964 in higher total costs of $3,964; (P = 0.053), compared with the control group.
    Men with celiac disease bore the brunt of those higher costs, with excess average total costs of just over $14,000 compared to costs of $4,000 for male controls; 95% CI of difference: $2,334 to $20,309).
    Costs associated with celiac disease pose a significant economic burden, especially for men with the disease.
    Early detection, diagnosis and treatment of celiac disease lowers medical costs, and will likely benefit patients and health care providers alike.
    Source:

    Alimentary Pharmacology & Therapeutics, Volume 32, Issue 2, pages 261–269, July 2010

    Jefferson Adams
    Celiac.com 12/16/2013 - Numerous popular herbal products may be contaminated or may contain unlabeled substitute ingredients and fillers, meaning that they are not what their labels claim. According to the World Health Organization, adulterated herbal products are a potential threat to consumer safety.
    These revelations came to light after a group of Canadian researchers conducted an investigation into herbal product integrity and authenticity, with hopes of protecting consumers from health risks associated with product substitution and contamination.
    Using a test called DNA barcoding, a kind of genetic fingerprinting that been effective in uncovering labeling fraud in other commercial industries, the researchers found that nearly 60% of herbal products tested were not what their label claimed them to be, and that pills labeled as popular herbs were often diluted or replaced entirely, sometimes with cheap fillers that could be dangerous to consumers.
    In all, the researchers tested 44 herbal products from 12 companies, along with 30 different species of herbs, and 50 leaf samples collected from 42 herbal species.
    The researchers were Steven G. Newmaster, Meghan Grguric, Dhivya Shanmughanandhan, Sathishkumar Ramalingam and Subramanyam Ragupathy. They are variously affiliated with the Centre for Biodiversity Genomics, Biodiversity Institute of Ontario (BIO) at the University of Guelph, the Bachelor of Arts and Science Program at the University of Guelph in Guelph, Ontario, Canada, and with the Plant Genetic Engineering Laboratory, Department of Biotechnology, Bharathiar University in Tamil Nadu, India.
    Their laboratory also assembled the first standard reference material (SRM) herbal barcode library from 100 herbal species of known provenance that were used to identify the unknown herbal products and leaf samples.
    The team recovered DNA barcodes from most herbal products (91%) and all leaf samples (100%), with 95% species resolution using a tiered approach (rbcL + ITS2).
    Nearly 60% of the products tested contained DNA barcodes from plant species not listed on the labels. That means they were not what the label said they were.
    Furthermore, even though 48% of the products contained authentic ingredients, one-third of those also contained contaminants and/or fillers not listed on the label.
    The air data showed clearly that most herbal products tested were not what their labels claim, while most of the rest were poor quality, and often contained unlabeled, possibly dangerous, product substitute, contamination and fillers.
    They note that selling weak, ineffective, or mislabeled herbal supplements reduces the perceived value of otherwise helpful products by eroding consumer confidence.
    The study team recommends that the herbal industry embrace DNA barcoding to ensure authentic herbal products by effectively documenting raw manufacturing materials.
    They suggest that the use of an SRM DNA herbal barcode library for testing bulk materials could provide a method for 'best practices' in the manufacturing of herbal products, and note that this would provide consumers with safe, high quality herbal products.
    What do you think? Should herbal products and supplements be tested, authenticated and verified? Share your thoughts below.
    Source:
    BMC Medicine 2013, 11:222. doi:10.1186/1741-7015-11-222

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics