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Celiac.com 04/07/2021 - It is not uncommon for people with celiac disease to have ongoing digestive symptoms and other systemic problems, even on a gluten free diet. Even though celiac disease is becoming better understood each year, much remains to be learned about the effects of the disease on the body and its ongoing symptoms. Not everyone with celiac disease who goes on a gluten-free diet will recover, according to the following study: "After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies)." While this article is intended to address celiac-related issues that you may want to explore with your health care provider, it is not intended as medical advice. Please consult a physician for any medical advice related to celiac disease or any issues mentioned in this article. Celiac Disease Follow Up Treatment A number of follow up tests are recommended, both immediately after a celiac disease diagnosis, and on an ongoing basis, including: Blood work for vitamin and mineral deficiencies Micronutrient deficiencies are common in adults with celiac disease, as are vitamin and mineral deficiencies. The most common vitamin and mineral deficiencies in celiac patients include the following vitamins and minerals: B vitamins (especially B12); Vitamin A; Vitamin D; Vitamin E; Vitamin K; Iron; Calcium; Carotene; Copper; Folic acid; Magnesium; Selenium; and Zinc. Thyroid Screening Because celiac disease is linked to autoimmune thyroid disease, thyroid screening is recommended for newly diagnosed celiac disease patients. (Note: Patients on thyroid replacement and other medications may need frequent monitoring for dosage adjustment as their absorption improves.) Bone Density Scan Up to 75% of celiac patients have low bone mineral density. Because of this, bone density scans are recommended for newly diagnosed celiacs. Liver Enzymes Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems. Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal. Note: Calcium and Iron status will improve in most individuals, even without supplements, once the gut heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet. Celiac Disease and Ongoing Symptoms After a Gluten-Free Diet Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below: Hidden Gluten Exposure New research shows that most people with celiac disease are regularly exposed to gluten, even when they are trying to be careful. Moreover, for most celiacs, gluten exposure is usually ongoing and silent. This article explores how much gluten exposure do celiacs get on a gluten-free diet. Moreover, celiac patients are really bad at judging gluten-exposure based on symptoms. Look for any possible sources of gluten exposure. Consider binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure. Many celiacs report positive results after taking AN-PEP enzymes (GliadinX is a brand that we've reviewed) before meals whenever they eat outside their homes. These enzymes have been shown in multiple studies to effectively break down small amounts of gluten in the stomach, before it reaches your intestines. Lactose Intolerance Enzymes needed to digest lactose are manufactured by the intestinal villi, which, in celiacs, are damaged by exposure to gluten. Many people with celiac disease suffer intolerance to casein, a protein found in dairy products. Often, this intolerance subsides as the gut heals. Lactose intolerance is a common misdiagnosis in celiac patients, because the mucosal damage from gluten leaves them unable to digest lactose-containing products. Testing for lactose intolerance can be done with a hydrogen breath test, Lactose H2. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with probiotic bacteria (see probiotics below) is also helpful. How is lactose intolerance related to celiac disease? Helicobacter Pylori A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for helicobacter pylori at the time of, or within 1 year of their celiac disease diagnosis. Interestingly, patients with helicobacter pylori colonization have a decreased risk of celiac disease. An Iranian study showed a connection between helicobacter pylori and celiac disease. Small Bowel Bacterial Overgrowth In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO. For more information, check these related articles: Breath Tests for the Non-invasive Diagnosis of Small Intestinal Bacterial Overgrowth: A Systematic Review With Meta-analysis, and Rosacea and Small Intestinal Bacterial Overgrowth (SIBO). Yeast Overgrowth Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered. Other Food Sensitivities Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves. To begin an elimination diet, it makes sense to start with the top most common food allergens, as identified by regulatory agencies like the FDA (U.S. Food and Drug Administration) and health organizations like the CDC (Centers for Disease Control and Prevention), and eliminate them one at a time for 2-3 weeks, then add the item back and record any symptoms or issues you might have. It might make sense to start this process in this order: Milk Eggs Peanuts Tree nuts (such as almonds, cashews, walnuts) Soy Fish Shellfish (such as shrimp, crab, lobster) Sesame seeds Mustard Dr. Fasano has created a diet for those with celiac disease which seems to help most celiacs improve quickly. Lately, there's also been focus on FODMAPS (See below). A low FODMAP diet has been shown to help reduce symptoms of IBS. This older article also has some interesting ideas. Cross-Reactivities for Celiac Patients A recent study indicates that Silicon Dioxide (Food additive E551) May Trigger Intestinal Damage and Inflammation in People with Celiac Disease or Gluten Sensitivity. Cross-reactivity between anti-gliadin antibodies and certain spice proteins indicates that patients with celiac disease or wheat allergies may also have an intolerance to many spices, even if they are gluten-free. Some spices can also be a source of cross-contamination, as wheat flour may be used as an anti-caking agent. This article explores this topic in more detail: Beyond Gluten: Exploring Lesser-Known Triggers and Cross-Reactivities for Celiac Patients Digestive Function Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription. Intestinal Motility Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts. Decreased Stomach Acid Low stomach acid (hypochlohydria) may interfere with the effectiveness of digestive enzymes, and promote yeast or bacterial overgrowth. A good source of information is the book "Why Stomach Acid is Good for You" by Wright & Lenard. For testing, using the Heidleberg Capsule or Gastrocap tests. Some celiacs with low stomach acid find benefits from taking supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store. Related articles include: Reduced Fecal Acidity Mirrors Rise in Celiac Rates. Beneficial Bacteria Probiotics are very helpful for regaining the balance of the intestinal flora. Use products that have multiple types of bacteria. Those found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures. Related articles include: Celiac Disease Onset Changes Gut Microbiota in Children; What Can Gut Microbiomes Teach Us About Gastrointestinal Distress in Children?; and Gut Microbiota Reflects Disease Severity in COVID-19 Patients. Digestive Enzymes Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Many people with celiac disease prefer vegetable based enzymes. which may be purchased online, or at health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To prevent heartburn, start by sprinkling ½ of a capsule on food, and increase as needed and tolerated. Be sure to make sure your enzymes are gluten-free. Watch out for Maltase, which can often be made from barley. Related articles include: Are Gluten-Busting Enzymes the Best Hope for Future Celiac Treatment and Maintenance?; Could Enzymes from Oral Bacteria Treat Celiac Disease?; Researchers Review Potential of Gluten Degrading Enzymes for Treatment of Celiac Disease; and Imagine a Gluten-Busting Enzyme that Worked Like LactAid. Carbohydrate Intolerance Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall, who recommends eliminating all complex carbohydrates to kill off "bad" bacteria. Parasites and other Bacterial Problems Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesn't mean they cant have the bugs that a normal person with diarrhea may have! Other Autoimmune Diseases A number of autoimmune conditions are associated with celiac disease. At least one in three people diagnosed with adult celiac disease will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations. Related articles include: Celiac Disease is Linked to Autoimmune Thyroid Disease; and The Ten Risk Factors Most Associated with Celiac Disease. FODMAPS FODMAPs is an acronym, short for “fermentable, oligosaccharides, disaccharides, monosaccharides and polyols.” FODMAPs is a single name for a bunch of different molecules, common in many in foods, that are poorly absorbed by some people. People who can’t tolerate FODMAPs can suffer celiac-like gastrointestinal symptoms. A low FODMAP diet has been shown to help reduce symptoms of IBS, and could be helpful to some people with celiac disease. FODMAPs have also been shown to play a role in non-celiac gluten sensitivity (NCGS). Now, a new app can help people zero in on FODMAPs in food. Related articles include: Can Low FODMAP Diet App Help Some Celiac and IBS Patients?; What's the Deal with FODMAPs and Gluten-sensitivity in IBS?; and FODMAPs, Food Intolerance and You. Oxalate Sensitivity Oxalate sensitivity can lead to inflammation in certain individuals due to the body's inability to properly metabolize oxalates, which are naturally occurring compounds found in many foods. When these oxalates accumulate in the body, they can form crystals that deposit in tissues, leading to inflammation and pain. This condition, often linked to disorders like kidney stones, can exacerbate inflammatory responses in the gut, joints, and other tissues, particularly in those with compromised gut health or certain genetic predispositions. The inflammatory response triggered by oxalate crystals can contribute to symptoms such as joint pain, digestive issues, and even chronic fatigue, making it crucial for sensitive individuals to manage their oxalate intake. Lectin Sensitivity Lectin sensitivity can cause inflammation in some individuals due to the body's adverse reaction to lectins, which are proteins found in various plant foods such as beans, legumes, and grains. Lectins can bind to carbohydrate molecules on the surfaces of cells, including those in the gut lining, potentially disrupting the gut barrier and leading to increased intestinal permeability, also known as "leaky gut." This disruption can trigger an immune response, resulting in inflammation and contributing to symptoms such as digestive issues, joint pain, and fatigue. In sensitive individuals, reducing or avoiding high-lectin foods may help alleviate these inflammatory responses and improve overall health Article originally published 03/25/2007, updated 04/07/2021.