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Jefferson Adams posted an article in Additional Celiac Disease ConcernsCeliac.com 08/22/2014 - It is often hard to tell if isolated case reports have anything to contribute to the larger understanding of celiac disease. However, some case reports are enough in themselves to cause reflection, whatever their contribution to the larger scientific understanding may be. For most people with celiac disease, symptoms disappear and healing begins with the adoption of a gluten-free diet. For one 9-year-old girl, however, the battle to beat her symptoms and feel better did not end with a gluten-free diet. The girl had initially complained of non-specific abdominal discomfort, and showed positive blood tests for celiac disease. Duodenal biopsies revealed Marsh 3B histopathology. So, she definitely had celiac disease with corresponding symptoms. Despite following a strict gluten-free diet, the girl continued to have symptoms and show positive blood tests for active disease. Gluten is a common additive in plastics. After some detective work, the team discovered that the child was being exposed to gluten from her orthodontic retainer that contained a plasticized methacrylate polymer. She discontinued its use and her symptoms disappeared and her celiac blood tests returned to normal. This case illustrates that, even for patients on the strictest gluten-free diet, exposure to non-dietary sources of gluten, such as those used to make plastics, dental equipment, and cosmetics, can trigger or exacerbate celiac disease symptoms. This case also emphasizes the importance of ferreting out and removing all possible sources of gluten, including non-dietary, when managing celiac disease. Source: Clin Pediatr (Phila). 2013 Nov;52(11):1034-7. doi: 10.1177/0009922813506254.
Molly Hallström posted an article in Journal of Gluten Sensitivity Winter 2017 IssueCeliac.com 01/04/2017 - Ever since I was a young girl I have always had a bad stomach. Last year, when I was 16, I decided to move to London. Circumstances became difficult, and I ended up becoming physically and mentally ill, which included anorexia nervosa and then onset depression and trauma, as well as almost crippling anxiety. Things led to me getting so ill that I went to a doctor who noticed that I had serious mouth ulcers—and this is what finally led them to diagnose me with celiac disease, after what seemed to be months of suffering. At the time my diagnosis seemed to make a lot of sense because of the stomach pains I had, especially after eating certain foods. My symptoms included much confusion, dire pains, and resulted in my having a phobia of food. As most celiacs know, currently there is no medicine available to treat celiac disease, and the only treatment is a strict gluten-free diet. I got diagnosed in late January 2016, and have been on a strict gluten-free diet ever since, and although I believe this has helped me a lot, more than nine months later, I still often have the same symptoms. They vary in levels and are sometimes uncomfortable and very painful. Sometimes I have migraines, stomach bloating, churning, etc., all of which are not very nice. Let me explain a little about what celiac is. It is an autoimmune disease where the immune system kills off tissue in the small intestine in response to ingesting gluten. This can make eating more difficult, and a lot of the time I am left in pain with nothing to do but sit in agony and wait for it to stop. But what if there was something else out there that could help with ongoing symptoms? I recently discovered that thousands are being helped by using cannabis to treat their celiac disease symptoms. Marijuana is gluten-free and for some, can ease the painful symptoms. Special note: This approach is NOT meant as a substitution for a guten-free diet, but for some people, like myself, it can offer additional symptom relief for those who need it. Reset.me has this posted: "Marijuana 'cools the gut,' in which it slows down the muscle contractions that move food through the stomach and intestines and reduces the secretion of liquid into the intestines associated with diarrhea (one of the most severe symptoms of the disease)," Deno writes. "Marijuana also controls the muscle spasms associated with diarrhea. It also increases appetite and can offset the inefficiency in the Celiac's ability to absorb nutrients from the food you eat." "People with celiac in some states in America are able to get access to to medical marijuana if they have chronic pain. The rest of us [celiacs] are left with buying illegally or simply avoiding this one plant that may be the most effective celiac treatment of all!" HelloMD.com states: "Inflammation can be suppressed by activating the cannabinoid receptors, CB2, on immune cells. Though there have not yet been clinical human trials, this study opens up new avenues to investigate as possible treatment options for autoimmune diseases. Though this study only looked at THC, CBD is also known to help the immune system. CBD helps repair the bodies [sic] ability to recognize the difference between normal internal body functions and foreign entities, keeping the body from attacking itself." Remember, Marijuana is not a cure, but is a natural anti-convulsant and can suppress seizure activity. It is also anti-inflammatory, and has helped people with other autoimmune diseases such as rheumatoid arthritis, psoriasis, Type 1 diabetes, multiple sclerosis, and many others. I smoked cannabis even before I was diagnosed, and I always found that it settled my stomach. I have since spoken to many other people with celiac disease online and face to face, and I've done a fair amount of research to find out if there are other celiacs who experience the same relief from their symptoms. While doing my research, I came across an interesting post on Medhelp.org by Betherie Mommi about a girl with celiac who also suffers with IBS and has a history of chronic pain, nausea and, just like me, eating disorders. With such a weak stomach it's always hard to eat things without discomfort. She goes on to say that she uses medical marijuana becuase the meds that the doctors gave her have not helped with the pain and side effects of the medications, and the marijuana has also helped her appetite. She goes on to give one of the best descriptions of stomach pains, which I also get, but had difficulty explaining: "like velcro made out of razor blades being pulled apart in certain parts of your belly." She goes on to say that it also gave a sense of community back to her life, as you do sometimes feel excluded as a celiac, because there's a lot you have to miss out on. Betherie Mommi was a medical marijuana patient. I really notice the effects it has on me, and how it relieves my stomach pains, including providing relief from the confusion and anxiety that I've experienced. I feel that other people shouldn't have to go through what I've had to experience, and I really do believe that this is an exceptional way forward for some people. You can find CBD only "vapes", liquids, and waxes, which are also supposed to help, but in my case the THC, even if it is a low dosage, was essential to get rid of the pain. What I have described in this article is only what has helped me, after much suffering, and I urge all celiacs to do their own research and speak to their doctors before making a decision. I really believe that this approach could be helpful to so many others, but I also realize that it may not be for everyone. Sources: Cannabis May Cure Celiac Disease Can Cannabis Help Autoimmune Disease Sufferers? Medhelp.org
Jefferson Adams posted an article in Celiac Disease & Gluten Intolerance ResearchCeliac.com 12/24/2015 - Laboratory tests for hemoglobin, ferritin, calcium, folate, vitamin B12, vitamin D, and thyroid function are regularly ordered in children with celiac disease, despite sufficient evidence for their necessity. To determine the frequency of nutritional deficiencies and levels of thyroid dysfunction in children with celiac disease, researches conducted a study that examined children before and after the initiation of a gluten-free diet. The research team included Margaretha Maria Susanna Wessels, MD, Iris I. van Veen, MD, Sabine Lisa Vriezinga, MD, Hein Putter, PhD, Edmond Henri Herman Maria Rings, MD, PhD, and Maria Luisa Mearin, MD, PhD. They are affiliated with the Department of Pediatrics, Department of Statistics, and the Department of Pediatrics, Erasmus University Medical Center, Sophia Children's Hospital, Rotterdam, The Netherlands. For their study, the team evaluated test results for hemoglobin, ferritin, folate, vitamin B12, calcium, vitamin D (25[OH]D), free thyroxin, and thyroid stimulating hormone of children with celiac disease regularly seen at the Leiden University Medical Center between 2009 and 2014. The team used laboratory reference ranges to define abnormal results. For statistical analysis, they used Pearson χ2 test for trend, unpaired t test, and 1-way ANOVA. Their results for 182 children evaluated, showed 119 were newly diagnosed. About 17% of results were missing for any given year, due to incomplete blood results. The most common deficiencies at the time of celiac diagnosis were iron deficiency, found in 28% of celiac patients, vitamin D deficiencies in 27%, and folate deficiency, in 14%. They also saw iron deficiency anemia in 9%, and vitamin B12 deficiency in 1% of celiac patients. They saw no hypocalcemia or thyroid dysfunction. At follow-up, they observed iron deficiency, iron deficiency anemia, and folate and vitamin D deficiency 8%, 2%, 3%, and 25% of patients, respectively. They found no vitamin B12 deficiency, hypocalcemia, and thyroid disease. From these results, the team concluded that complementary blood investigations are relevant at the time of celiac diagnosis, but have little follow-up use, once the patients adopt a gluten-free diet. They recommend that such tests be conducted only if there is a clear physical issue, such as fatigue or abnormal growth. Source: Journal of Pediatrics. DOI: http://dx.doi.org/10.1016/j.jpeds.2015.09.078
Jefferson Adams posted an article in Refractory Celiac Disease & Collagenous SprueCeliac.com 06/04/2012 - Non-responsive celiac disease is very much what it sounds like: celiac disease where symptoms seem to resist treatment and continue even in the face of a gluten-free diet. A team of researchers recently set out to look for the most likely causes of persistent symptoms in celiac disease patients on a gluten-free diet. The research team included David H. Dewar, Suzanne C. Donnelly, Simon D. McLaughlin, Matthew W. Johnson, H. Julia Ellis, and Paul J. Ciclitira. They are variously affiliated with King's College London, Division of Diabetes and Nutritional Sciences, Department of Gastroenterology, and The Rayne Institute at St. Thomas' Hospital in London. Their goal for the study was to investigate all patients referred to our center with non-responsive celiac disease (NRCD), to establish a cause for their continued symptoms. For their study, the research team assessed all non-responsive celiac disease who were referred to their gastroenterology center over an 18-mo period. They then established the etiology of ongoing symptoms for these patients. For all patients, the team established a thorough case history and conducted a complete examination with routine blood work including tissue transglutaminase antibody measurement. Additionally, each patient was examined by a specialist gastroenterology dietician to try to spot any gaps in their diets, or any hidden sources of gluten consumption. When possible, the team conducted a follow-up small intestinal biopsy, and compared the results against the biopsies from the referring hospital. Patients with persistent symptoms received colonoscopy, lactulose hydrogen breath testing, pancreolauryl testing and a computed tomography scan of the abdomen. The team monitored patient progress over a minimum of two year period. Overall, the team looked at 112 patients with non-responsive celiac disease. They determined that twelve of those did not actually have celiac disease. Of the remaining 100 patients, nearly half, 45%, were not adequately following a strict gluten-free diet. Of these, 24 (53%) were found to be accidentally consuming gluten, while 21 (47%) admitted to not faithfully following a gluten-free diet. Microscopic colitis was found in 12% and small bowel bacterial overgrowth in 9%. Refractory celiac disease was found in 9%. Three of these were diagnosed with intestinal lymphoma. After 2 years, 78 patients remained well, eight had continuing symptoms, and four had died. In most cases of non-responsive celiac disease, the team found a reversible cause can be found in 90%. In the vast number of those cases, continued consumption of gluten was the main cause. The team is proposing the use of an algorithm for further investigation of the matter. Source: World J Gastroenterol. 2012 Mar 28;18(12):1348-56.