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Celiac.com - 12/11/2023 - Coeliac UK, a charity dedicated to supporting individuals with celiac disease, is urging hospitals to enhance their care for celiac patients, emphasizing the need for improved awareness and adherence to dietary restrictions. Their call comes in the wake of the tragic death of Hazel Pearson, a 79-year-old woman with celiac disease, who passed away after being mistakenly served Weetabix, a cereal containing gluten, despite explicit warnings from her family, and clear indications in her medical records. The inquest into Mrs. Pearson's death revealed that neglect played a role, leading Coeliac UK's head of advocacy, Tristan Humphreys, to assert that her demise was a "clear failure of care that should never have been allowed to happen." He expressed concern about systemic shortcomings in supporting those with celiac disease when they require medical attention, citing a Coeliac UK survey indicating that 70% of respondents believed that catering and medical staff lacked knowledge about gluten-free diets and the risk of cross-contamination. Additionally, over three-quarters of respondents reported having family or friends bring them gluten-free food while in the hospital. Humphreys stressed that while Wales has mandatory food standards outlining the necessary level of care, these standards were not met in Mrs. Pearson's case. Coeliac UK is actively providing advice and guidance to ensure the safe provision of gluten-free food. The Betsi Cadwaladr health board, responsible for the care lapses in Mrs. Pearson's case, is now under scrutiny and has committed to reviewing care practices for celiac patients. The inquest revealed inadequate systems in place at the hospital, with Mrs. Pearson experiencing similar dietary oversights at a different hospital months before her death. Mrs. Pearson fell seriously ill after consuming Weetabix at Wrexham Maelor Hospital and succumbed to aspiration pneumonia four days later. The inquest stressed that the hospital should have been aware of her dietary restrictions but lacked proper systems to ensure compliance. Assistant coroner Kate Robertson, presiding over the inquest, expressed her intent to issue a warning to the health board regarding the risk of future deaths. The health board, criticized for a delayed response to Mrs. Pearson's death, is now tasked with reviewing the findings and taking appropriate action to prevent similar incidents in the future. Read more at bbc.com

Celiac.com 06/22/2023 - Living with celiac disease requires strict adherence to a gluten-free diet to prevent uncomfortable symptoms and long-term complications. However, accidental gluten ingestion can occur, causing distress and discomfort for those with celiac disease. When that happens, there are steps you can take to alleviate symptoms and support your recovery. This article combines the best home remedies for accidental gluten ingestion, as submitted by members of our forum, and from comments by readers of our articles. Accidental gluten ingestion can lead to a range of symptoms in individuals with celiac disease such as upset stomach, inflammation, diarrhea, bloating, and skin rash. Recognizing the consequences of gluten exposure is essential for implementing effective management strategies. Officially, beyond simply waiting it out, there is no clinically accepted treatment for people with celiac disease or gluten sensitivity who accidentally eat gluten. However, there are things that many people claim will reduce the suffering and promote healing when this happens. So what works? Or, what do people say works for them? The remedies listed below are not ranked in any particular order of importance or efficacy. This list is not intended to be authoritative or comprehensive. Nor is it intended as medical advice, or as a substitute for medical advice. As with any health remedy, do your research and make the choices that are right for you. Immediate Steps to Alleviate Symptoms Taking immediate action is crucial to minimize the impact of gluten exposure. Hydration, rest, and the application of heat can help alleviate symptoms like stomach pain and cramping. Avoiding additional irritants in the diet is also important. Fasting Fasting—Studies indicate that fasting for a couple of days can help to reset the immune system, which might be beneficial for those suffering from an adverse gluten reaction. Be sure to check with a doctor before fasting, just to be safe. Return to a Strict Gluten-Free Diet Recommitting to a strict gluten-free diet immediately after accidental exposure is paramount. Emphasize naturally gluten-free foods and avoid processed or spicy foods that may further irritate the digestive system. Digestive Enzymes for Bloating Relief Digestive enzyme supplements, such as GliadinX, Eater's Digest and Gluten Defense, can provide relief from bloating. These enzymes are known to assist in the digestion of gluten and may help alleviate symptoms, especially when exposed to small amounts of gluten. Herbal Remedies and Medications Herbal remedies like green tea, peppermint tea and echinacea have been reported to offer soothing effects for digestive discomfort. Additionally, antihistamines such as Benadryl, Claritin, or Zyrtec may provide relief for some individuals. Marshmallow root is known for its potential to soothe stomach and gas pain. Probiotics for Gut Health Incorporating probiotics into a general gut maintenance program can be beneficial both before and after accidental gluten exposure. Probiotics help promote a healthy gut microbiome and may aid in reducing symptoms. Nutrient-Rich Broth for Gut Healing Nutrient-rich broths, such as beef, chicken, or fish broth, contribute to gut healing and provide essential nutrition. Incorporating these broths into the diet can support recovery after gluten exposure. Long-Term Strategies for Intestinal Health Rebuilding intestinal health is crucial for managing celiac disease. Implementing an anti-inflammatory diet, including supplements such as L-Glutamine, coconut oil, fat-soluble vitamins (A, E, D, and K), calcium, magnesium, B-vitamins, essential fatty acids, and probiotics, can aid in the healing process. Personalized Approach and Seeking Medical Advice A personalized approach to managing accidental gluten ingestion is important. It is advisable to seek medical advice and consult healthcare professionals, such as dietitians, to develop tailored strategies and receive personalized guidance based on individual needs. Coping with Emotional Challenges Managing accidental gluten ingestion involves addressing not only the physical symptoms but also the emotional challenges that may arise. Prioritizing self-care, seeking support from loved ones or support groups, and engaging in activities that promote overall well-being are essential for navigating the emotional aspects of living with celiac disease. Tummy Rescue Smoothie 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼-½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) Directions: Purée in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea. This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. Conclusion Accidental gluten ingestion can be distressing for individuals with celiac disease. While there is no clinically accepted treatment for gluten ingestion, there are practical steps to manage symptoms and support recovery. By implementing strategies such as immediate symptom relief, adherence to a strict gluten-free diet, digestive enzymes, herbal remedies, probiotics, nutrient-rich broth, and long-term gut healing strategies, individuals with celiac disease can minimize the impact of accidental gluten exposure and promote their overall well-being. Living with celiac disease requires vigilance and careful attention to one's diet. Accidental gluten ingestion may happen despite best efforts, but there are steps that can be taken to alleviate symptoms and support recovery. By following these guidelines and seeking appropriate medical advice, individuals with celiac disease can navigate the challenges of accidental gluten exposure with greater ease and maintain their overall health and well-being. If you have any thoughts or insights on how best to treat accidental gluten ingestion for people with celiac disease or gluten intolerance, please share them in our comments section below.

Celiac.com 04/09/2020 - Anyone with celiac disease knows how hard it can be to follow a gluten-free diet. Some studies have shown that even celiacs who strive to stay gluten-free are commonly exposed to gluten. How common is gluten-exposure in celiacs who are following a gluten-free diet? A new study takes a deeper look at real world gluten exposure in celiac patients following a gluten-free diet. To do so, the research team set out to measure levels of gluten immunogenic peptides (GIP) in fecal and urine samples from celiac patients on a gluten-free diet. The research team included Juan Pablo Stefanolo, Martín Tálamo, Samanta Dodds, María de la Paz Temprano, Ana Florencia Costa, María Laura Moreno, María Inés Pinto-Sánchez, Edgardo Smecuol, Horacio Vázquez, Andrea Gonzalez, Sonia Isabel Niveloni, Eduardo Mauriño, Elena F. Verdu, Julio César Bai. They are variously affiliated with the Dr. C. Bonorino Udaondo Gastroenterology Hospital, Buenos Aires, Argentina; the Farncombe Family Digestive Health Research Institute, McMaster University Medical Centre, Health Sciences, Hamilton, ON, Canada; and the Research Institutes of Health, Universidad del Salvador, Buenos Aires, Argentina. The team conducted a prospective study of 53 celiac adults in Argentina who had followed a gluten-free diet for more than two years, and an average of eight years. The team used a celiac symptom index questionnaire to assess celiac-related symptoms for each patient at the beginning of the study. Patients in the study collected stool each Friday and Saturday and urine samples each Sunday for one month. The team used a commercial ELISA to measure gluten immunogenic peptides in stool and point-of-care tests to measure gluten immunogenic peptides in urine samples. Among other revelations, the results showed that nearly 40% of stool and urine samples were positive for gluten immunogenic peptides. Nearly 90% patients had at least one fecal or urine sample that was positive for gluten immunogenic peptides (median, 3 excretions). Nearly 70% of urine samples were positive for gluten immunogenic peptides at least once. Positive gluten immunogenic peptides samples correlated with blood levels of deamidated gliadin peptide IgA, but not with levels of tissue transglutaminase. Interestingly, symptomatic patients had more weeks with detectable gluten immunogenic peptides in stool than patients without symptoms. Patients with celiac disease on a long-term gluten-free diet are still frequently exposed to gluten. Tests to measure gluten immunogenic peptides in stool and urine could help dietitians ensure gluten-free diet compliance. In their celiac patients. In this real world study, nearly nine out of ten celiacs who are following a gluten-free diet tested positive for gluten exposure at least once in this study, and nearly two out of five urine tests was positive for gluten exposure. Moreover, these exposures may not have symptoms. This is pretty alarming news, to be honest. People with celiac disease need to avoid gluten, and they need a reliable way to check and see if they need to adjust their diet. Do you have celiac disease? Are you on a gluten-free diet? Do you think you get exposed to gluten regularly? Do you think that regular testing might help you to avoid gluten? Comment below. Read more in the Clinical Gastroenterology and Hepatology

Celiac.com 06/11/2019 - A potentially major breakthrough in celiac disease treatment owes at least part of its success to a simple drive-in hamburger from Seattle's beloved and legendary Dick's Drive-In. If you have celiac disease, and haven't heard of PvP Biologics, you likely will. PvP originated in 2011 as an award winning student biology project at the University of Washington Institute for Protein Design, a lab that has created several successful startups. PvP's enzyme-driven product, KumaMax, is designed to break down gliadin, the part of gluten that triggers an autoimmune reaction in people with celiac disease and gluten sensitivity. Like most similar enzyme therapies, KumaMax is not designed to be a cure for celiac disease, but to help prevent adverse reactions from accidental gluten contamination. KumaMax is designed to break down gluten in the stomach, and to help prevent a gluten reaction. Celiac.com covered part of the PvP story in 2017 in our article "Takeda Taps PvP Biologics to Develop Celiac Disease Therapy." That story covered PvP's deal with Japanese drug giant Takeda, which gave the startup $35 million to complete a phase 1 clinical trial, at which point Takeda has the option to purchase the startup. Apparently, when it was time for PvP Biologics to test KumaMax, the research team needed to make sure their enzyme would work in the stomach, and work only against gluten proteins, not against meat or dairy proteins. The team wanted a meal that would allow them to test the gluten-neutralizing properties of their drug in conditions that mimicked the human stomach. For that meal, the team turned to Dick's Drive-In, purveyors of fine burgers. “We got a hamburger and a vanilla milkshake from the Dick’s Drive-In in Wallingford,” said Ingrid Pultz, co-founder and chief scientific officer of PvP. “If we were going to get a hamburger, it might as well be from Dick’s. It’s a Seattle institution.” Team members labeled the food as lab equipment. They then blended and acidified the mixture, to mimic the stomach environment, and added the KumaMax enzyme. The enzyme worked well enough to become PvP's lead molecule, and to earn the support of Takeda. So there you have it. KumaMax, the breakthrough gluten dissolving enzyme that may offer celiacs some protection against accidental gluten ingestion has its roots in a simple hamburger and milkshake from Seattle institution, Dick's Drive-In. Read more at Geekwire.com

Celiac.com 05/13/2020 - With the collapse of the Nexvax 2 'vaccine" for celiac disease, which was really more like allergy therapy, but which has been abandoned after poor results in clinical trials, the hope for an outright cure, or "silver bullet" treatment for celiac disease seems a far-off possibility. That means that people with celiac disease are unlikely to gain immunity to gluten, and start freely eating gluten any time soon. Unlike a vaccine, which would theoretically make it possible for people with celiac disease to eat gluten, enzymes do not change the underlying celiac disease at all. People with celiac disease still have celiac disease, and need to follow a gluten-free diet to maintain optimal health. However, gluten-busting enzymes seem to hold the most promise for helping people with celiac disease to avoid accidental gluten ingestion, and to promote better overall health. New revelations from real world studies that show that even the most diligent celiacs are often exposed to gluten offer strong arguments in favor of using gluten targeting enzymes. Arguments Against Enzymes Arguments against enzymes include the idea that such enzymes might lead celiacs to deliberately consume gluten. There are good reasons why this viewpoint doesn't stand up too well to scrutiny. Anyone who would risk their health to deliberately consume gluten likely doesn't need an enzyme as an excuse to do so. Any extra protection against gluten contamination would seem to be a good idea for most celiacs, even those who willingly cheat on their diets, which some surveys put at over 20% of celiacs, especially in light of data that shows that many gluten-free people with celiac disease are accidentally, and unknowingly exposed to low levels of gluten that can trigger symptoms and cause gut damage. Other studies show that adverse gluten reactions are common in people with celiac disease on a gluten-free diet. Eating away from home, especially at restaurants and other homes, carries the greatest risk for gluten exposure. Arguments in Favor of Enzymes Arguments in favor of enzymes often include the idea that enzymes are unlikely to harm patients, and could provide an extra measure of protection against minor accidental gluten ingestion by people with celiac disease. Especially in sensitive people, the argument goes, enzymes could offer some protection. That argument has been borne out by the studies showing that most gluten-free celiacs are regularly exposed to gluten in their diets. There are currently numerous enzymes on the market that claim to break down gluten to one degree or another. Most of these enzymes target gluten in general, but one, AN-PEP, has been shown in several studies to break down gluten in the stomach before it gets to the intestine. This could be a crucial development in celiac disease treatment and management. Enzymes that Claim to Break Down Gluten AN-PEP AN-PEP, derived from the from aspergillus niger fungus, AN-PEP is one of the most promising enzymes. It has been clinically proven to break down gluten in the gut. There are several brands of aspergillum niger, including Gliadin-X. Kiwifruit Recent research shows that the kiwifruit produces enzymes that are great at breaking down gluten proteins, and could be effective supplements. Papaya The product, called GluteGuard, is based on a papaya fruit enzyme called caricain. This papaya enzyme is shown to be helpful for celiac patients. A 2015 study showed adding caricain to bread dough reduced gluten toxicity to gluten by 90% for celiac patients. Carnivorous Plant Enzymes Remember all those cool plants, like Venus Flytraps and Pitcher Plants, that eat bugs? Enzymes from carnivorous plants are excellent at breaking down the proteins that make up the plant's diet. Studies show that these enzymes are also great at breaking down gluten proteins. Latiglutinase Celiac patients appear to show symptomatic and QOL benefit from using latiglutenase with meals. Enzymes from Oral Bacteria A recent study of oral bacteria concludes that gluten-degrading Rothia and food-grade Bacillus subtilisins are the "preferred therapy of choice for celiac disease," and that their exceptional enzymatic activity, along with their connection to natural human microbial colonizers, make them "worthy of further exploration for clinical applications in celiac disease and potentially other gluten-intolerance disorders." Few Oral Enzymes Break Down Gluten in the Stomach Oral enzymes that break down gluten in the gut offer the best hope for most celiac patients in the near term. One enzyme in particular, AN-PEP, which is derived from aspergillum niger, has been clinically shown to break down gluten in the stomach, before it reaches the intestine. Breaking down gluten proteins before they reach the intestine, and provoke an immune reaction in celiacs, is key to any oral enzyme. As such, AN-PEP seems to hold tremendous promise. Gluten-Busting Enzymes Could Change Food Manufacturing Researchers at Clemson University are working to produce active enzymes that can be added to products to make them gluten-free, in much the same way that lactase enzymes are used to make lactose-free milk. Obviously many hurdles need to be cleared, and much testing and refinement must happen, but, in theory, such products would be safe for people with celiac disease. A growing body of evidence shows that enzymes may have a beneficial role to play in helping people with celiac disease to minimize potential damage from accidental gluten ingestion, which happens more frequently than previously thought. The key will be finding ways to deploy these enzymes that are proven to provide protection for people with celiac disease looking to follow a gluten-free diet, including oral enzymes that break down gluten in the gut, and possibly even in products that contain wheat, rye, or barley. Stay tuned for more developments on the role of enzymes in celiac disease treatment and management.

Celiac.com 01/07/2020 - Everyone with celiac disease needs to follow a gluten-free diet. However, celiac patients on a gluten-free diet often suffer from villous atrophy, which might point to regular accidental gluten ingestion. A group of international researchers called the Doggie Bag Study group, has found that gluten ingestion is common even among those who make a concerted effort to avoid gluten. The study group included Jocelyn A. Silvester, Isabel Comino. Ciarán P. Kelly, Carolina Sousa, and Donald R. Duerksen. The group's analysis found that antibody tests on celiac patients who report good or excellent gluten-free dietary practices show that most patients had ingested measurable amounts of gluten in the 10-days before biopsy. These findings indicate that most people with celiac disease are not as gluten-free as they might think, and would likely benefit from treatments other than the simple gluten-free diet, according to Jocelyn A. Silvester, MD, PhD, a pediatrician at Boston Children's Hospital and Harvard Medical School, Massachusetts, and colleagues. Silvester and her colleagues write that their findings indicate that a completely "gluten-free diet may be more aspirational than achievable, even by highly committed and knowledgeable individuals." In their study, which appears in Gastroenterology, the researchers report on 12 female and 6 male asymptomatic celiac patients who had not intentionally consumed gluten. All patients reported diligently following a gluten-free diet and avoiding gluten. Patients were recruited from the Manitoba Celiac Disease Inception Cohort study for the purpose of assessing potential gluten exposure in patients who were supposedly gluten-free. More than three out of four participants self-reported accidental gluten exposure on the Gluten-Free Eating Assessment. For 7 days, study participants allowed testing on a representative 25% portion of food they ate, including sauces, dressings, and flavored drinks, but excluding naturally gluten-free whole foods, such as fruits, vegetables, and wine. Using food testing and gluten-related antibody tests to detect gluten in both the food samples, and in stool and urine samples, of adults with celiac disease who claimed to strictly follow a gluten-free diet, the investigators found substantial evidence that these "gluten-free" diets still included gluten in various amounts. In food testing samples from nine participants, 40% contained detectable gluten over 20 ppm, while 20% contained contained detectable gluten over 200 ppm. In excretory assays, gluten immunogenic peptides were detectable in 30 of 519 (6%) samples from eight participants and in 8 of 75 (11%) stool samples from five participants. Positive samples were distributed throughout the day. Read more at Sciencedirect.com