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    The Physical, Educational, Emotional, and Family Life Challenges of a Lifetime with Celiac Disease: A Case Study


    Kay A. Chick, Ed.D.


    • Journal of Gluten Sensitivity Spring 2014 Issue


    Image Caption: Image: CC--Jeff Turner

    Celiac.com 11/15/2016 - Do you know someone who has lived with celiac disease for over eighty years? Someone who lived on nothing but mashed bananas for a year? Someone who continued to eat gluten for over 30 years because doctors didn't know how to treat a celiac diagnosis? Someone who experienced serious physical, emotional, and family challenges as a result? Well, I met such an individual at the International Celiac Symposium in Chicago in the fall of 2013. Clara (a pseudonym) attended my poster session, The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. As she stood before my poster with tears in her eyes she began to say, "This is me. This is me." Through a brief conversation then, and several lengthy telephone interviews that followed, she shared her incredible story with me and gave me permission to share it with you.


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    Clara was born in 1933 on a citrus ranch in California and was the youngest of five children. She was very sick as a baby with what her family thought was a "terrible case of the flu." She lost muscle tone, had wrinkly skin, and some mornings she didn't move or even open her eyelids without the help of her mother. She looked malnourished and had a distended stomach. When she was two, her parents took her to Dr. Victor E. Stork, but he was not sure what the problem might be. A few weeks later, the doctor attended a conference where he described Clara's symptoms. He learned of another child with similar symptoms who had been diagnosed with celiac disease and fed nothing but mashed bananas. After Dr. Stork informed Clara's parents, Clara's father purchased a big hook and drove to the Long Beach docks to buy bananas. He hung bunches of bananas on their back porch to ripen and she was fed nothing but mashed bananas for over a year. What started as half a teaspoon at a time quickly grew until she was eating many bananas each day. This part of Clara's story greatly intrigued me, as I had just read the research of Sidney Haas. In the 1920s Hass successfully treated eight children who were "anorexic" from celiac disease with the banana diet while untreated children did not survive (Guandalini, 2007).

    Growing up, Clara was a happy child but had no appetite and didn't enjoy food. She was very small for her age and, at times, was made to stay at the dinner table until she ate everything on her plate. Clara's mother, a practical nurse, thought she might be allergic to fat. The family kept a quarter of a beef in a freezer locker 25 miles away and her mother scraped the fat off the beef before giving it to Clara. She was also made to finish her breakfast, typically oatmeal, toast, and orange juice, before going to school in the morning. Clara routinely had vomiting and diarrhea each morning, and didn't understand why this didn't happen to other children. She missed school often because she had abdominal discomfort and was weak. Clara hid in the girls' restroom during recess and physical education so she wouldn't have to participate. Since she was unsuccessful at athletics she found it easier to sit on a toilet with her feet pulled up so no one would see her.

    Clara continued to miss a great deal of school but was required to do her school work at home. During second grade she worked ahead, completing both second and third grade work. Consequently, she was allowed to skip third grade, which only accentuated her small size. When she entered high school people thought she was in third or fourth grade. After entering puberty at age 14 she finally acquired an appetite and began to grow much taller. At this point in her life, Clara decided that she would never be sick again. She graduated from high school in 1950, after acting in dramatic productions, serving as president of the Girls' League, and planning the ten year class reunion.

    Clara married at age twenty, between her junior and senior years in college. She had few symptoms during this time and was hired as a kindergarten teacher. Her husband was drafted and she taught in several different places on the west coast while he was in the service. During this time, Clara had a baby girl followed by two miscarriages. Three weeks after the birth of their second child Clara became very ill and lost her hair. They had no insurance and she lost a dramatic amount of weight. She weighed only 80 pounds and her husband had to carry her from the bed to the couch. The vomiting and diarrhea got worse and her mother had to take care of her babies. She was on heavy doses of medication and her doctors thought her gastrointestinal problems "were all in her head."

    Clara's speech became "jumbled" and she was not making sense. Her doctor sent her to a psychiatrist who placed her in a "sanitarium." She was hospitalized for several months where she felt very isolated and alone. Her relatives weren't told where she was and her father would not allow her mother to visit her. At the sanitarium Clara received shock treatments every three days, ten in all. Her sister offered her son's college fund to pay the sanitarium bill so that Clara would be allowed to leave.

    When Clara returned home she found she had lost much of her memory. She didn't remember how to hold a knife and her daughter, who was three, taught her how to tie her shoes. She was on sedatives and slept much of the time. She does not know how she took care of her children during this time. Clara and her husband had little money, so she took in ironing and taught preschool. It took them twelve years to pay off the hospital bills.

    It was fifteen years after this experience, and two babies later, that Clara finally got treatment for her celiac disease. She was hospitalized at UCLA Medical Center for a month while more tests and an intestinal biopsy were completed. It was 1972, and she was now 39 years old. The gastroenterologist finally confirmed the diagnosis of celiac disease and told her that she would never be able to eat pie, bread, or cake ever again. Clara was so thrilled that it was "just food" that would make a difference and not cancer. The doctor told her that there was no reason why she was still alive. Within two months she was noticing a difference and had gained weight. Clara was able to go back to teaching part-time and started teaching full-time in 1981.

    After her celiac diagnosis Clara did her best to avoid grains completely. One doctor told her to eat wheat germ, a product she clearly was correct in avoiding. In the 1970s she tried to make bread with rice, but her attempts were very unsuccessful. Clara started a support group in 1984 which was part of the Celiac Sprue Association. Little by little the group started receiving information on eating gluten-free, as many of these foods were readily available in Europe. By 1988 there were some gluten-free foods available in California. Clara experimented with cooking and breads and tested recipes for Carol Fenster's cookbooks. Her household today is totally gluten-free, with the exception of a loaf of bread for her husband. She and her husband traveled extensively after their retirement, visiting every state except Hawaii, along with the Caribbean and Australia.

    As far as lessons learned, Clara believes that people should listen to each other. She says, "If a person says, I feel horrible, someone should listen. The medical profession didn't listen to me. They said it was all in my head. If they had listened I could have been helped." It is unfortunate that her doctors didn't listen, as Clara could have been diagnosed much sooner. Willem-Karel Dicke first published an article on the importance of a gluten-free diet for the treatment of celiac disease in 1941 (Berge-Henegouwen & Mulder, 1993).

    Since my own celiac diagnosis came within two months of the onset of symptoms, I marvel at how someone could live for 39 years while still eating gluten. I think about the lessons to be learned from Clara's story. I consider the advancements that have been made in the diagnosis and treatment of celiac disease and the ease with which I'm able to eat gluten-free. And I send a reminder of the importance of early detection and the physical and emotional consequences that individuals like Clara face when a celiac diagnosis is delayed.

    References:

    • Guandalini, S. (2007). A brief history of celiac disease. Impact, 7, (3), 1-2.
    • Van Berge-Henegouwen, G. P., & Mulder, C.J. (1993). Pioneer in the gluten-free diet: Willem-Karel Dicke 1905-1962, over 50 year of gluten-free diet. Gut, 34, 1473-1475.
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    Guest Bonne Buchold

    Posted

    I certainly can identify with Clara's story! I went through years and years from the time I was a young girl, until I was finally diagnosed with CS at age 60. It was a "trigger", stress that led to the loss of weight....etc. finally leading to the final diagnosis. As a child, our family doctor treated me for B12 deficiency, iron deficiency anemia, IBS, ulcerative colitis, as well as, hypogammaglobulinemia. I was so very relieved when I finally received a diagnosis, but then once told I couldn't eat gluten.....what is that? I went through the same stages as if there were a death in my family. I only ate Rice cereal for months and put on 30 lbs because of I didn't know what did and did not contain gluten. Once my body healed and I was able to eat a better diet, I have felt much better. We believe my Father passed this gene to me.

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    Guest Isabella

    Posted

    Can definitely relate also. Lost my memory and couldn't do my job anymore age 35, labelled crazy, was a walking skeleton, pains that no-one can find a cause for. Chronically misdiagnosed. At 37 years of age I was waking up in shock every morning only able to eat mash potato. After 3 weeks of this I felt well enough to eat something else, so of course, a bread treat. Bedridden for three days thinking I hope I don't die, but I know what's wrong with me. I'm still not officially diagnosed with celiac as I refuse to eat gluten and have to do this to get tested. I am positive for the genes and get symptoms when I am exposed to gluten and that is enough for me. My mysterious non-diagnosable pains have gone and only return when I've been exposed to gluten (touch and airborne as well). However, at 40 I think I finally know what it feels like to be "well."

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    Guest Donna Renneke

    Posted

    Correction needed: The date of Dicke's paper was 1951 rather than 1941. The celiac-gluten connection was discovered as a result of lack of wheat during WW II.

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    Correction needed: The date of Dicke's paper was 1951 rather than 1941. The celiac-gluten connection was discovered as a result of lack of wheat during WW II.

    The paper was indeed published in 1941: Dicke published his first report on a wheat-free diet in Het Nederlands Tijdschrift voor Geneeskunde in 1941. (W. K. Dicke: A simple diet for Gee-Herter's Syndrome). At the time, celiac was still called Gee-Herter's syndrome. Excerpt from: http://www.celiac.com/articles/22013/1/Willem-Karel-Dicke-Pioneer-in-Gluten-free-Diet-in-the-Treatment-of-Celiac-Disease/Page1.html

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    The following morning I also I learned one of the kitchen staff responsible for following the therapeutic diet said to my mother's caregiver: "Oh, she doesn't need that diet. That's all made up."
    I faced the fact that providing for my mother was too much trouble for the staff, and they were simply unwilling. My mother was never going to get the food nor the care in eating that she would require at this facility.
    As of this writing, my mother is back home. Private caregiver hours have been drastically reduced. I am able to do this, for now.
    Here are some chilling facts: Studies indicate that today in our country not only are the incidents of celiac on the rise in all age groups, but the median age for celiac diagnosis is just under 50 years of age, with one-third of newly diagnosed patients being over the age of 65.* (Celiac Disease in the Elderly, Shadi Rashtak, MD and Joseph A. Murray, MD)
    This is the age group who are the primary caregivers for themselves and their parents. This is the age group who more often must undergo surgeries and stays in rehabilitation nursing facilities.
    Couple the above figures with the fact that we are an aging population. At the current rate, the number of people age 65 and older is projected to double between now and 2050. The baby boomers, responsible for the great population growth, now average over the age of 65.* (An Aging Nation: The Older Population in the United States, by Jennifer M. Ortman, Victoria A. Velkoff, and Howard Hogan, U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau.)
    These simple facts paint a picture of a growing challenge. We must be able to provide short and long term nursing home care for the many celiac patients around us today—my mother, myself, the number of over-60 celiacs I've talked to—as well as the tidal wave looming on the horizon.
    In addition, we have other food intolerances on the rise, and we have the needs of those with diabetes and kidney disease and other conditions requiring dietary restrictions. At present, all of these people, not only those with celiac, are being overlooked and discounted.
    I have no solid answers to this immense problem. I do have suggestions on things that can be started.
    The celiac community must recognize and begin to talk seriously about the problem of dietary care in nursing homes. Printing up a glossy brochure with the advice to have the doctor write an order for a therapeutic diet is a start. We have to step out more aggressively with ways to educate and implement therapeutic diets in a real way. We have programs in place educating restaurants and the food industry. Let's get aggressive with the health industry.
    Of course, my experience is that these facilities do not want to be educated. This is where legislation is required. We need to lobby for legislation that requires compliance in the nursing facility industry, in the same way that food labeling compliance was attained.
    Further, we need to support the push for legislation for a required number of CNAs per patient in nursing home facilities. At present, there are laws only governing the minimum number of RNs required per patient in nursing facilities. * (Minimum Nurse Staffing Ratios for Nursing Homes, Ning Jackie Zhang; Lynn Unruh; Rong Liu; Thomas T.H. Wan, Nurs Econ. 2006;24(2):78-85, 93.) There are no mandatory minimums for the number of CNAs, the people who actually do the bulk of the patient care—those who would monitor a person's diet and help that person to eat. At present the nursing home facility is allowed to choose for themselves the number of CNAs they need.
    I remarked to a friend that there were a number of camps for children with celiac disease, places the child could get away and enjoy and eat safely.
    "Well, what about for the elderly?" my friend said. "It seems if they can do it for kids, they could do it for the elderly."
    What about the elderly? This is our new challenge—to make certain those elderly people with food sensitivity needs are well cared for.

    Betty Wedman-St Louis, PhD, RD
    Celiac.com 06/16/2016 - Do you realize that metabolic and emotional stress, hormonal imbalance and food sensitivities all impact digestion? Many individuals believe that once they stop eating gluten, digestive disorders will disappear. Nothing could be further from the truth as we take a closer look at gastroenterology and the link between the gut and brain.
    The adult gut has between 10 trillion and 100 trillion bacteria that make up the microbiome or surface of the intestines. The goal for digestive wellness is to be sure that there are more GOOD bacteria than BAD bacteria in the microbiome. Food choices, antibiotic use and lifestyle play an important part in creating that balance. Endocrine disrupting chemicals in plastics, along with artificial sweeteners all influence the bacteria or microbiome levels.
    The bacteria content of the gut begins at birth. A vaginal delivery results in a microbiome from the mother while a cesarean section produces a microbiome from everyone who handles the infant. Gut bacteria levels are also influenced by breast feeding versus the use of infant formula.
    Diets deficient in fruits and vegetables mean less antioxidants are consumed so free radicals can destroy digestive and immune function. In addition, fruits and vegetables provide fiber for bacteria to grow on. Current research from the Journal of Clinical Nutrition indicates high fiber diets yield more bacteroides bacteria growth that helps control body weight. Low fiber diets result in more firmicute bacteria which produces weight gain and can lead to obesity.
    Microbiological safety in fresh produce continues to gain prominence in the media. Fresh cut, RTE (ready to eat) produce in convenient packages leads the way in food safety recalls. Fruits and vegetables are prone to microbial contamination from irrigation water, soil, fertilizers, insects, animal feces and field workers during pre-harvest processing. After harvest, the washing and sanitation procedures lack oversight. Remember to wash all raw fruits and vegetables to minimize food poisoning potential.
    Listeria monocytogenes is one of the leading causes of death from food borne illness. It is found in raw milk, cheese, and packaged deli meats. Flu-like symptoms can last days to weeks, and in pregnant women listeria infection can lead to miscarriage.
    Noroviruses make the news regularly, especially on cruise ships. Common food sources include raw produce and shellfish such as clams, mussels, scallops and oysters. Symptoms begin as early s 12 hours after ingestion and the malaise disappears 3 to 4 days later.
    Salmonella continues to plague many with chills, nausea, joint pain and headaches beginning 12 hours post ingestion. Eggs, poultry and raw produce are major sources of salmonella.
    Probiotics are an important addition to the celiac diet for balancing the bacteria levels in the GI tract. They should be taken WITH food to reduce the degradation in an acid stomach. Research has shown that urinary tract and vaginal infections have an improved management rate when lactobacillus and bifidobacterium multi-species probiotics are used.
    Probiotics are live bacteria which have been shown to reduce inflammation in the gastrointestinal tract. They also reduce intestinal permeability and influence serotonin and melatonin production in the gut.
    So since the human gut contains 10 times more bacteria than all the human cells in our body, keeping a healthy balance of bacteria in the gut is critical for digestive wellness.

    Jefferson Adams
    Celiac.com 11/21/2016 - Even early on, strange inconsistencies caused Dan and Davina Dixon to wonder about her daughter, Rebecca. With dark hair and olive skin, Rebecca looked visibly different from her fair-complected parents. She looked different enough to wonder, as a child, if was adopted, if Dan and Davina were really her biological parents, as they assured her they were.
    Later, in her twenties, Rebecca developed celiac disease, which usually runs in families, even though no one else in their extended family suffered from it. Most of this was merely fodder for curiosity, until the day Davina saw a Facebook post that mentioned how rare it is for parents with blue eyes to have a child with brown eyes.
    Wondering about Rebecca's brown eyes, Davina went to the family doctor, who suggested a blood test. That's when the real mystery began: The blood test revealed that Rebecca's dad, Dan, was not, in fact, her biological father. There was absolutely no doubt. Dan's blood type was AB, while Rebecca's was O-Positive. That makes it impossible for Dan to be her father. A paternity test followed, and confirmed the blood results. There was simply no chance that Dan was Rebecca's biological father.
    Naturally, the Dixons began to search for answers. As reported by Kidspot, Rebecca was raised believing that Dan and Davina were her biological parents. The couple had tried for years to conceive a child. Unsuccessful, they turned to Dr. Norman Barwin, a gynecologist and fertility expert known by many as Canada's "baby god."
    The couple wondered whether there could have been some sort of mix-up in Barwin's office. Eventually, they noticed Rebecca bore a striking resemblance to Dr. Barwin, himself. Soon after that, as CTV News reported, a woman conceived at the same clinic learned that she was genetically related to Barwin. A DNA test confirmed that Rebecca and the woman were half-sisters, and their father was Dr. Barwin. Apparently, Barwin's role as a sperm donor to his own medical practice was kept secret from both sets of parents.
    The Dixon family is now suing Dr. Barwin for negligence and breach of trust. The lawsuit requests that Barwin turn over a DNA sample, to determine if any other children conceived at his clinic are his offspring, and to notify them accordingly.
    Read more at:
    Kidspot.com CTV News  IJR.com

    Jefferson Adams
    Celiac.com 12/05/2016 - Symptomatic suspected gluten exposure is common among patients with celiac disease on a gluten-free diet. A gluten-free diet is the only recommended treatment for celiac disease. Although anecdotal evidence suggests that suspected gluten exposure is common among celiac patients following a gluten-free diet, there is not a great deal of hard data to support that view.
    A team of researchers recently set out to assess the prevalence and characteristics of gluten reactions in people with celiac disease on a gluten-free diet. The research team included JA Silvester, LA Graff, L Rigaux, JR Walker, and DR Duerksen. They are variously affiliated with the St Boniface Hospital in Winnipeg, Canada, the College of Medicine at the University of Manitoba in Winnipeg, Canada, and with the Celiac Research Program at Harvard Medical School in Boston, MA, USA.
    Their team prospectively enrolled adults with biopsy proven, newly diagnosed celiac disease. They then conducted a survey related to diet adherence and reactions to gluten, both at study entry and at 6 months. To measure celiac disease symptoms and gluten-free diet adherence, they used T Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT). Of the 105 patients enrolled, 91% reported gluten exposure less than once per month, while the average CDAT score was 9 (IQR 8-11), which suggests good dietary adherence.
    Two out of three patients reported suspected symptomatic reaction to gluten. Most, 63 percent, did not suspect gluten consumption until a reaction occurred. Meanwhile, just under one-third (29 percent) reported that problems happened when ordering in a restaurant.
    Thirty percent of patients say that gluten was consumed from incidental contact, while 10 percent said it was due to eating a major gluten ingredient.
    Average time to symptom onset was 1 hour, though onset ranged from 10 minutes to 2 days. Symptoms lasted about 24 hours on average, and ranged from 1 hour to 8 days. Symptoms typically included abdominal pain (80%), diarrhea (52%), fatigue (33%), headache (30%) and irritability (29%).
    Even with good dietary compliance, most celiac patients following a gluten-free diet suffer from regular adverse reactions to gluten. Eating away from home continues to pose the major risks for accidental gluten exposure.
    The team recommends that physicians treating celiac disease patients should include regular questions regarding gluten reactions as part of their assessment of gluten-free diet adherence.
    Source:
    Aliment Pharmacol Ther. 2016 Sep;44(6):612-9. doi: 10.1111/apt.13725. Epub 2016 Jul 22.

    Jefferson Adams
    Celiac.com 04/05/2017 - To mark the start of Coeliac Awareness Week, Coeliac Australia and Nestlé Professional have launched Gluten Free Online Training – an interactive learning resource for foodservice professionals looking to expand their understanding of gluten free food practice throughout the hospitality industry.
    Under the guidance of Australian chef and author Tobie Puttock, the project will train up to 30,000 students at all TAFEs and culinary institutes in the protocols for gluten-free food preparation and service.
    People who successfully complete the training earn a Certificate of Achievement, which covers them for three years under Coeliac Australia's Gluten Free Standard for Foodservice Providers.
    Cathy Di Bella, special projects officer at Coeliac Australia, says training in safe gluten-free food prep and handling practices is a huge stepping stone to meet the future needs of the foodservice industry.
    Karen Kingham, dietitian and brand nutritionist at Nestlé Professional, says that the online training is intended to help people working in foodservice to become familiar with gluten-free customer and prep and server issues.
    The goal is to promote gluten-free awareness and protocols to culinary and food industry workers, to benefit them, the industry, and its patrons.
    "As most of us know celiac disease is real and symptoms are easily triggered, and I believe this should be treated the same as someone with perhaps a peanut allergy, and therefore food handling is of the utmost importance," said Puttock.
    It's good to see such influential figures in the food industry bringing such seriousness and professionalism to the preparation and handling of gluten-free foods. Stay tuned for more on this and other gluten-free stories.
    For more information: Australia's Gluten Free Online Training.

    Jefferson Adams
    Celiac.com 01/26/2018 - Party retailer Party City finds itself in hot water over a recent commercial that implies that people who eat gluten free are "gross." The ad, which was part of a pre-Super Bowl effort to tout deals at the discount party store, has offended customers and non-customers alike.
    The commercial depicts the host of a Super Bowl party chatting with a guest. When the guest asks about a sad-looking plate of gluten-free snacks, the host replies: "Those are some gluten-free options."
    The guest asks: "Do we even know people that are like that?"
    To which the host replies: "Tina."
    The the guest delivers the big, supposedly funny punchline: "Oh, gross, yeah."
    Obviously, there's more than just a little bit wrong with this ad, which does not clarify whether "gross" is refers to gluten-free people in general, or just to the unseen Tina.
    "Your new ad mocking people who eat gluten free is inconsiderate and wrong at best," one Twitter user wrote to Party City. "My celiac disease is not your punchline."
    "Your commercial is disgusting. Do you have any idea how hard it is to live with a life threatening food allergy?" another one reads. "I will not be shopping at your store anymore."
    In the face of overwhelmingly negative public feedback, Party City buckled. The company has withdrawn the commercial, and issued the following apology:

    "Party City values its customers above all else, and we take your feedback extremely seriously. We recognize that we made an error in judgment by running the recent Big Game commercial, which was insensitive to people with food allergies. We have removed the commercial from our website and all other channels, and sincerely apologize for any offense this may have caused. We'd also like to clarify that Sunny Anderson was not involved in the creation of this commercial in any way, and we apologize for any offense it has caused with her audience and fans. We will also be reviewing our internal vetting process on all advertising content to avoid any future issues. In addition, Party City will be making a donation in support of Celiac Disease research."
    In addition to the statement of apology, Party City has promised to make a donation to the Celiac Foundation.
    Read more at: BusinessInsider.com

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    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