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Celiac.com 01/09/2025 - Celiac disease is a chronic autoimmune condition triggered by consuming gluten, a protein found in wheat, barley, and rye. For most individuals with this condition, following a strict gluten-free diet is the key to managing symptoms and promoting intestinal healing. However, not all patients experience relief, even after adhering to this diet for six to twelve months. This condition, termed non-responsive celiac disease, has now been the subject of a comprehensive study analyzing its prevalence and causes. What Is Non-Responsive Celiac Disease? Non-responsive celiac disease refers to the persistence of symptoms such as diarrhea, abdominal pain, and malnutrition despite maintaining a gluten-free diet for an extended period. This phenomenon can arise either due to ongoing gluten consumption—knowingly or unknowingly—or because of other underlying medical conditions. According to the study, approximately 20 percent of individuals with celiac disease do not respond to a gluten-free diet as expected. This alarming proportion highlights the complexity of managing celiac disease and the need for further understanding of why some patients continue to suffer. The Most Common Cause: Hidden Gluten Exposure For one-third of patients with non-responsive celiac disease, the main culprit is inadvertent gluten exposure. Gluten is ubiquitous, often hiding in processed foods, sauces, and even medications. Even trace amounts can provoke an immune reaction in sensitive individuals. Many patients are unaware that they may still be consuming gluten, either due to poor food labeling or a lack of education about gluten-containing products. This underscores the need for better awareness, improved labeling regulations, and ongoing dietary counseling for individuals newly diagnosed with celiac disease. Other Causes of Persistent Symptoms Functional Gastrointestinal Disorders The study found that 16 percent of cases of non-responsive celiac disease were linked to functional gastrointestinal conditions, such as irritable bowel syndrome. These disorders, which are not caused by structural abnormalities or ongoing gluten exposure, often mimic celiac disease symptoms, making diagnosis and treatment challenging. Refractory Celiac Disease In rare but serious cases, symptoms persist due to a condition called refractory celiac disease. This occurs when the immune system continues to attack the small intestine despite strict adherence to a gluten-free diet. Refractory celiac disease is further divided into two types: Type I: Generally responds well to treatment and follows a milder course. Type II: Associated with a higher risk of progression to lymphoma, a form of cancer. Refractory celiac disease, while less common, represents a significant concern because of its potential for severe complications. Misdiagnosis or Other Conditions In some cases, a misdiagnosis of celiac disease could explain ongoing symptoms. Alternatively, other conditions such as small intestinal bacterial overgrowth, lactose intolerance, or inflammatory bowel disease may be the true cause of persistent issues. A thorough medical evaluation is crucial for ruling out these possibilities. Implications for Healthcare The findings of this study highlight several critical areas for improving care for individuals with celiac disease: Enhanced Dietary Education Patients need comprehensive guidance on identifying and avoiding hidden gluten sources. This includes recognizing potential cross-contamination in kitchens, understanding food labels, and staying vigilant about gluten-free certification. Better Food Labeling Standards Gluten labeling varies widely across countries, with some regions lacking clear regulations. Standardized global practices could help reduce inadvertent gluten exposure and improve quality of life for celiac patients. Targeted Medical Interventions For those with non-responsive celiac disease, a personalized approach is essential. This may include testing for other conditions, functional disorders, or refractory celiac disease. Additionally, new therapies targeting persistent symptoms are being developed, offering hope for those who do not respond to dietary changes alone. Why This Study Matters For individuals living with celiac disease, non-responsive cases can be particularly distressing. The persistence of symptoms can lead to ongoing health issues such as malnutrition, anemia, and decreased bone density, not to mention the emotional toll of chronic illness. This study emphasizes the importance of addressing all potential causes of persistent symptoms and tailoring care to individual needs. By identifying the main drivers of non-responsive celiac disease—such as hidden gluten and functional gastrointestinal disorders—it provides a roadmap for improving diagnosis, treatment, and overall patient outcomes. Ultimately, these findings remind us that while a gluten-free diet remains the cornerstone of celiac disease management, it is not always a cure-all. Continued research, enhanced education, and more effective treatments are essential to supporting the one in five patients who do not find relief from dietary changes alone. Read more at: onlinelibrary.wiley.com

Celiac.com 11/16/2024 - The wedding of Blake and Bryce Shoemaker started as a picturesque day filled with love, joy, and excitement. The couple, celebrating their October 2022 nuptials in Joshua Tree, California, planned for an intimate ceremony with close family and friends. However, their magical night took a sharp turn when Bryce, who has celiac disease, accidentally consumed gluten, leaving him sick for much of their wedding night. Blake, now able to laugh about the incident, reflects on what happened and how it strengthened their bond as a couple. The Importance of Gluten-Free Choices Planning a wedding in Joshua Tree presented logistical challenges, especially when it came to ensuring that the cake was safe for Bryce, who has celiac disease. Celiac disease is an autoimmune disorder where ingesting gluten can cause severe reactions, ranging from digestive distress to long-term health complications. Because the options in the desert were limited, Blake’s mother took on the responsibility of finding a gluten-free cake. Though her mother believed she had located a gluten-free bakery, upon arriving at the baker’s home, they were met with an environment that was less professional than expected. However, they proceeded to use the cake, assuming it was safe for Bryce to eat. Unfortunately, Bryce unknowingly consumed a cake contaminated with gluten, leading to an unexpected and unfortunate series of events later in the evening. Bryce’s Reaction to Gluten Exposure For those with celiac disease, reactions to gluten can vary significantly from person to person. Some may experience mild symptoms, while others, like Bryce, can have severe reactions even after consuming a small amount. Bryce, after taking just one or two bites of the cake, began to feel nauseous a few hours later. As the evening progressed, his nausea worsened, and he eventually started vomiting. While this was one of the worst reactions Bryce had ever experienced, he remained determined to enjoy the remainder of the evening. Rather than retreating to bed, Bryce stayed with his guests, even bringing a trash can to the center of the room so he could still participate in the afterparty, despite his illness. His ability to persevere and make the most of the situation highlighted his resilience and positive attitude. A Moment That Brought Them Closer Looking back on the experience, Blake reflects on how the incident, though unfortunate, helped them grow stronger as a couple. They had been together for nearly 11 years, having met in the third grade, and this situation was just one of the many challenges they would face together. Blake was heartbroken watching her husband suffer, but she did everything she could to comfort him, sitting by his side and rubbing his back as he dealt with the nausea. Blake notes that moments like these, though minor compared to larger life events, teach couples how to support each other through adversity. They adapted to the situation, showing how a strong relationship can thrive even in the most unexpected circumstances. For them, the takeaway from the experience was how important it is to be there for each other, especially when things don’t go as planned. The Aftermath and Moving Forward After the wedding, Bryce recovered quickly, feeling better the next morning. The couple enjoyed a few more days in Palm Springs before heading off on their honeymoon, making up for the unfortunate incident on their wedding night. Blake shared their story on TikTok, taking a humorous approach to what could have been a much more stressful memory. While the couple is now able to laugh about the incident, it also serves as a reminder of how important it is to thoroughly vet gluten-free products and suppliers, especially for those with celiac disease. Despite the baker’s assurances, the cake contained gluten, leading to Bryce’s reaction. Blake’s mother called the baker afterward, but the conversation did not yield any new information, leaving the family with lingering questions about what went wrong. Why This Story Is Meaningful for People with Celiac Disease For individuals with celiac disease, Bryce’s story is a cautionary tale about the importance of vigilance when it comes to gluten-free food. Even in situations that seem safe, such as ordering from a gluten-free bakery, contamination can still occur. This story emphasizes the need for people with celiac disease and their loved ones to ask thorough questions, research suppliers, and never take chances when it comes to gluten. It also highlights the challenges of living with celiac disease in social situations, particularly at events like weddings, where food is often central to the celebration. Bryce’s determination to enjoy his night despite his illness shows the resilience many people with celiac disease develop as they navigate a world full of potential risks. Ultimately, this story is a reminder that living with celiac disease requires constant awareness, but with the right support and preparation, even difficult situations can be handled with grace and humor. Read more at: people.com

Celiac.com 02/24/2020 - Low FODMAP gluten and sham challenges show that nausea and vomiting after a meal are key signs of acute gluten ingestion, and reflect an active immune reaction in celiac patients who are otherwise following a gluten-free diet. This became clear recently after a team of researchers set out to establish acute gluten-specific symptoms linked to immune activation in celiac disease. The research team included A. James M. Daveson; Jason A. Tye-Din; Gautam Goel; Kaela E. Goldstein; Holly L. Hand; Kristin M. Neff; Leslie J. Williams; Kenneth E. Truitt; and Robert P. Anderson. They are variously affiliated with the Faculty of Medicine, University of Queensland, Brisbane in Queensland, Australia; the Immunology Division, The Walter and Eliza Hall Institute, Parkville, Vic., Australia; the Department of Medical Biology, University of Melbourne, Parkville, Vic., Australia; the Department of Gastroenterology, The Royal Melbourne Hospital, Parkville, Vic., Australia; the Centre for Food & Allergy Research, Murdoch Children's Research Institute, Parkville, Vic., Australia; the ImmusanT, Inc., Cambridge, MA, USA. For some people with celiac disease, FODMAPs in gluten-containing foods can trigger anxiety about a potentially harmful 'nocebo' effect, which can lead to acute symptoms after a gluten challenge. The team enrolled 36 celiac disease patients on a gluten-free diet who received placebo in the RESET CeD trial. The team put each of the study subjects through a course of double-blind, bolus vital wheat gluten and sham challenges that were both low in FODMAPs with two weeks between courses. The team measured daily Celiac Disease Patient Reported Outcome (CeD PRO) symptom scores on a scale of 0–10, adverse events and serum interleukin-2, at both baseline and 4 hours). The highest increase was seen in average CeD PRO score for nausea, with sham challenge score of 0 vs gluten challenge score of 5.5. Apart from tiredness and headache, changes in other symptoms were small or absent. Only nausea increased significantly in occurrence with gluten. Without nausea, only tiredness and flatulence were common after gluten. Nausea and vomiting were the only adverse events more common with gluten than sham. Nearly all of the patients fed gluten showed raised levels of Interleukin-2, which corresponded to the severity of the nausea and the presence of vomiting. These low FODMAP gluten and sham challenges show that nausea and vomiting after a meal are key signs of acute gluten ingestion, and reflect an active immune reaction in celiac patients who are otherwise following a gluten-free diet. However, IBS-like symptoms without nausea are unlikely to indicate recent gluten exposure. Lastly, these findings indicate that FODMAPs may be an issue for many people with celiac disease. Many celiacs on a gluten-free diet, who think that they are having issues with gluten, might actually be reacting to FODMAPs, and may benefit from a FODMAP elimination diet. Read more in Alimentary Pharmacology & Therapeutics; 2020;51(2):244-252.

Celiac.com 11/05/2018 - ImmusanT, Inc. is a clinical stage company looking to deliver innovative peptide-based immunomodulatory vaccine therapies to patients with autoimmune diseases, initiated enrollment in Australia and New Zealand for its celiac disease vaccine. Along with Nexvax2, ImmusanT is working to develop vaccines for other HLA-associated autoimmune diseases, including type 1 diabetes. The Phase 2 trials will assess the safety, tolerability and efficacy of its celiac vaccine, Nexvax2, on celiac patients who carry the immune recognition genes for HLA-DQ2.5. Carriers of HLA-DQ2.5 account for approximately 90% of people with disease, and Nexvax2 is designed to protect these patients from the effects of gluten exposure. Nexvax2 is currently the only disease-modifying therapeutic candidate in clinical development for patients with celiac disease. Injections of Nexvax2 are designed to reprogram T cells that trigger an inflammatory response to gluten, thereby suppressing inflammation in patients with celiac disease. Phase 1 studies showed Nexvax2 to be safe and well-tolerated at even its highest dose levels. In Phase 2 clinical trials, ImmusanT hopes to confirm clinical efficacy of Nexvax2 administered by injection into the skin for treatment of celiac disease. The study plan consists of an initial screening period of 6 weeks, an approximately 16 week treatment period, and a 4 week post-treatment observational follow-up. The trials will be conducted at sites in Melbourne, Perth, Adelaide and Brisbane, in addition to sites in New Zealand. For the U.S. study researchers will enroll approximately 150 patients across the U.S., Australia and New Zealand. Phase 2 is a randomized, double-blind, placebo-controlled clinical study of Nexvax2 in adults with confirmed celiac disease who have followed a gluten-free diet for at least a year prior to screening. “This trial is important in establishing clinical proof-of-concept for a treatment that would provide benefit beyond that of the gluten-free diet,” and will “test if Nexvax2 can specifically target the immune response to gluten in people with celiac disease and modify associated symptoms,” said Jason Tye-Din, MBBS, Ph.D., principal investigator at the Royal Melbourne Hospital and head of celiac research at the Walter and Eliza Hall Institute of Medical Research in Melbourne, Australia. For more information about RESET CeD, including inclusion and exclusion criteria, please visit www.clinicaltrials.gov (Identifier: NCT03644069).

Celiac.com 10/26/2018 - Did you know that a new study shows people with celiac disease are more likely to suffer nerve damage? Jonas E. Ludvigsson, a clinical epidemiology Professor in Sweden, discovered that women with celiac disease are 2.5 times more likely to develop neuropathy or nerve damage. There is a real association between celiac disease and nerve damage. "We have precise risk assessments in a way we haven't had before" he stated last year. Yet even Sweden has its quandaries. 60% of women in Sweden who have celiac disease have neuropathy and they do not totally know why! Statistics vary from country to country, and even vary between specialists within that country. Nerve damage is no laughing matter, it presents with numbness and tingling of exterior areas (extremities). Basically, numbness in the nerve endings of the fingers and toes and other frustrating areas. Just try picking up pencils, or something hot out of the oven. If you do not feel the heat you will know that you may have nerve damage. Following a rigid gluten-free diet, however, can alleviate this problem to a certain degree, and that is why we keep repeating the mantra: “Eat Clean & Gluten-Free!” However, sometimes accidents happen, and people who have celiac disease, gluten sensitivity, or dermatitis herpetiformis get exposed to gluten. How to Recover From Accidental Gluten Exposure Kathy Holdman, M.S., R.N. and Certified Nutritional Therapist lists numerous ways to recover after gluten exposure. You need to take into account the amount of gluten exposure, length of time from last exposure, degree of gluten intolerance present, health of the digestive tract, existing inflammation or infection in the body and overall health status. Some people say they can recover in a few days, others say they may experience significant setbacks in their health that lasts weeks to months. For those with positive celiac disease it may take years for complete healing of the small intestine after gluten exposure, although "outward symptoms" may resolve sooner. Nurse Holdman suggests the following 10 tips to help alleviate symptoms from gluten exposure, and hopefully speed up recovery: Drink plenty of water, and this cannot be emphasized enough. Water is an essential nutrient for every cell in the body for proper function. Many people live in a state of chronic dehydration, which of course results in constipation. Then they take something to rid themselves of constipation and take too much and lose potassium, magnesium and throw out the balance of the salts in their body. When you have celiac disease you learn something new every week. Last week an Internist told me, after incurring my second bladder infection in eight weeks, that it could possibly be from the diarrhea following being glutened, and not totally washing myself. That made me a little sick just thinking about it. But, she told me an interesting fact about urinary tract infections and celiac disease. Celiacs do incur more frequent urinary tract infections due to more frequent diarrhea, no matter how meticulously clean we are. Taking four or five "Craisins" with each meal several times a day can limit the amount of bladder infections. I told her that I was also taking Cranberry tablets and she told me to throw them out because they are "useless." She said that you do not need to buy fresh cranberries, as they are "sour and expensive." Just buy a bag of the dried Craisins and eat some either before or after meals. Ingredients in the pure dried cranberries helps prevent bladder infections from occurring. Studies done in several Nursing Homes where many incontinent patients lived were given five Craisins either alone or in a salad twice daily and the decrease in urinary tract infections was nothing less than amazing. Get extra sleep and rest. Sleep is the time your body repairs itself. Avoid strenuous exercise, (the type that causes you to sweat). Exercise in moderation is what I think she wants to tell us. Drink bone broth. It is rich in minerals and gelatin and other nutrients that are soothing to the digestive system and nourishing to the entire body. Another health benefit of bone broth is hydration, and the more liquid intake the better. You can dress up bone broth with onions and garlic to improve the taste. Take epson salt baths. They contain magnesium, a mineral that can help the body to relax. The sulphate minerals found in Epson Salts are detoxifying, and they can stimulate the lymphatic system and support the immune system. Nurse Holdman also urges us to take digestive enzymes which can help modulate the symptoms of celiac disease. Take digestive enzymes. If taken immediately following the accidental consumption of gluten, some people believe that digestive enzymes can help to modulate the symptoms of celiac disease. It is well known that digestive enzymes soothe the stomach lining and ease the abdominal pain. Drink ginger or peppermint tea. They are both known to help relieve nausea and can be soothing to the digestive system. Drink a cup if you are having nausea or other gastrointestinal symptoms. Take activated charcoal. It is an over-the-counter-supplement that may be beneficial if taken immediately after an attack. It helps by binding with the offending food and preventing it from being absorbed into the body. This supplement can bind with medications so be sure to consult your licensed health care professional prior to taking it, especially if you take medications for other diseases or conditions. Eat fermented foods. Who knew!? Possibly the Koreans and their staple Kim Chi, or the Ukrainians/Romanians with their fermented red cabbage coleslaw of course! Fermented foods are high in nutrients that nourish the entire body. Start out with a small amount of fermented food and slowly increase it. Drink nettle leaf tea. It is an antispasmodic with antihistamine properties. It can help relieve muscle and joint pain, and relax your body naturally. Neither gluten intolerance nor celiac disease are mediated by histamine, but some people report that nettle leaf can help relieve symptoms of rash and itching following gluten exposure. It is a gentle diuretic and can be detoxifying. So if you experience dehydration symptoms it is time to drink more water. Get acupuncture treatments. It may relieve inflammation, especially in the abdominal area, and it can be relaxing. Only you can tell how many treatments are beneficial, and you need to take into consideration the cost factor because most health insurance plans do not cover acupuncture. Tips to Help People with Dermatitis Herpetiformis Recover from Accidental Gluten Exposure A suggestion from Me: If you have itching from dermatitis herpetaformis, try Scalpacin. I have been using it for years and nothing stops the itching in such a short time span. Once the sores start to appear, even just a slight "itch" is like a doorbell warning you ahead of time. I apply Scalpacin lotion, which is not a cream, but is a clear liquid. At first it stings but that is how I know that I have an impending outbreak. It is a non-fragrant liquid. You can use it on your scalp without totally ruining your hair style. Don't wash you hair with it, search out the spots, or, if you have a partner, they may be able to help you with the sores in your scalp, and you can point out itchy areas. For dermatitis herpetiformis itch you can also try a mix of baking soda and water by making it into a paste. This is not great for your scalp and hair, but it will ease the itching. It can be a little messy when it dries and the white powder flakes off on your floors, but you do not have to use it for hours at a time; it is a temporary method for temporary relief. You can also ask your physician if he or she will prescribe the prescription drug "Atarax" for you. It is a strong allergy medication and must be taken exactly as directed. It really helps the itch, but it can be sedating, especially when first trying it. Don't over-use the prescribed dosage. I would not suggest driving a car while taking Atarax, but if the itching, scabbing and bleeding have become so severe it definitely is the one allergy medication that helps with the itching from dermatitis herpetiformis. I have tried Benadryl, Claritin and other over the counter allergy medications, and nothing works as well as Atarax. Talk to your family physician about a prescription and read the instructions carefully. Hopefully these tips will prove helpful in the unfortunate event that you ever get cross-contaminated by gluten. I certainly hope this never happens to you!

Celiac.com 03/06/2018 - A number of clinicians and researchers have suspected that antibodies against transglutaminase 6 (anti-TG6) play a role in neurological issues in adult patients with genetic gluten intolerance, but it is not known if autoimmunity to TG6 develops after long-term consumption of gluten. A team of researchers recently set out to establish a correlation between these autoantibodies and the duration of gluten exposure by measuring the anti-TG6 in children with celiac disease at diagnosis. The team then investigated a correlation between anti-TG6 and the presence of neurological disorders. The research team included L De Leo, D Aeschlimann, M Hadjivassiliou, P Aeschlimann, N Salce, S Vatta, F Ziberna, G Cozzi, S Martelossi, A Ventura, and T Not. They are variously affiliated with the Institute for Maternal and Child Health-IRCCS "Burlo Garofolo" Trieste, Trieste, Italy; Matrix Biology and Tissue Repair Research Unit, School of Dentistry, and Arthritis Research UK Biomechanics and Bioengineering Centre of Excellence, College of Biomedical and Life Sciences, Cardiff University, Cardiff; the Department of Neurology at the Royal Hallmshire Hospital, Sheffield, UK; and with the University of Trieste in Trieste, Italy. The team used ELISA to measure anti-TG6 (IgA/IgG) in children with biopsy-proven celiac disease and of children experiencing gastrointestinal disorders. Celiac disease patients who tested positive for anti-TG6 were retested after 2 years of gluten-free diet. In all, the team analyzed test results for 274 children with celiac disease, along with 121 control subjects. They found anti-TG6 in 68 out of 274 celiac disease patients and in 19/121 control subjects, though the differences between the two groups was significant. None of the celiac patients or the controls who tested positive for anti-TG6 suffered from neurological disorders. Eleven of 18 celiac disease patients with other autoimmune diseases tested positive for anti-TG6. Among the celiac disease patients, the team found a significant correlation between the gluten exposure before the celiac disease diagnosis and anti-TG6 concentration. The gluten-free diet substantially reduced the anti-TG6 concentrations. The team found no significant correlation between anti-TG6 and anti-TG2 serum concentrations. Anti-TG6 is much more common in children with untreated celiac disease , but with no apparent neurological disorders. The synthesis of the anti-TG6 is associated with longer exposure to gluten prior to celiac diagnosis, while the autoimmunity against TG6 is gluten dependent and disappears with a gluten-free diet. Source: J Pediatr Gastroenterol Nutr. 2018 Jan;66(1):64-68. doi: 10.1097/MPG.0000000000001642.