Numerous Celiac websites and blogs can now be found on the internet. While many provide useful information, others contain outdated information which can be confusing at the least, and more importantly lacking in fact. Following a gluten-free diet/lifestyle is challenging enough, so we want to bring a level of comfort to our readers, by deciphering fact from fiction. We have conducted extensive research on various subjects of interest to Celiacs and those following a gluten-free lifestyle for any reason and have compiled the following list of most common myths, truths and questions.
Celiac only affects children. Once thought to be a childhood disease, it is now known that Celiac can occur at any time, from infancy through the elderly, and any age in between.
Celiac is uncommon. Celiac affects 1 in 133 people (close to 3 million), making it one of the most common auto-immune diseases in the world.
Celiac is a food allergy. Celiac is not a food allergy, it is an auto-immune disease (the immune system attacks the body – in this case the small intestines – when gluten is ingested). Celiac disease cannot be outgrown, and once triggered it is chronic (lifelong).
What is an auto-immune disease? The following website from the American Autoimmune Related Diseases Association, Inc. answers this question in detail. http://www.aarda.org/q_and_a.php
I am newly diagnosed, how long will it take for my intestines to heal? People may notice a difference after a few weeks, since the small intestinal lining begins to heal immediately (intestines renew every three days) and should completely regenerate in a few months, provided gluten is eliminated from the diet. The healing process (feeling well, subsiding of symptoms) can take anywhere from a few weeks to a few years & there will most likely be good days & not so good days in between. Healing time is also dependent upon on the severity of the initial damage, and also the age at diagnosis (older people may take longer to heal). If symptoms are still occurring after several months, it is possible gluten is still being ingested or intolerances to other foods could be surfacing. Although rare, one may have Refractury Sprue (see Celiac 101). Speak with your health care provider if symptoms persist.
I tested negative for Celiac, will I ever have to worry about it again? Yes, just because the test was negative, a possibility still remains that Celiac can be “triggered” later in life. Having a family member with Celiac certainly increases the risk. Also, about 10% of people with Celiac will test “negative”. If you are feeling unwell after receiving a negative blood test, and have ruled out other conditions, pursue another test and also have your doctor rule out an IgA deficiency, which could show a negative blood result even though you could still have Celiac.
I’m having tummy troubles, maybe I should try a gluten-free diet? It is important to see your primary care physician and/or gastroenterologist BEFORE commencing a gluten-free diet. Once eliminating gluten from the diet, it will be difficult to get an accurate diagnosis to confirm Celiac. The blood test is simple and highly accurate, so best to rule out Celiac!
What should I do if I ingest gluten? According to the Celiac Research Center at the University of Chicago, once gluten is ingested the disease is immediately reactivated and the abnormal immune reaction is triggered, thus causing damage. Once gluten is out of the system healing begins again. That healing period is different in people. The most important thing to remember is that continuous ingestion of gluten, whether intentional or inadvertent, will prevent the intestines from completely healing and puts people at an increased risk of the associated complications of Celiac.
If I have Dermatitis Herpetiformis, do I have Celiac Disease? Yes – DH is the skin manifestation of Celiac Disease. Someone with DH must follow a life-long, gluten-free diet.
Only gastrointestinal issues occur with Celiac. Celiac is a multisystemic disease, meaning it can manifest itself in many different ways. The most common issues are gastrointestinal (gas, bloating, cramps, diarriah, abdominal distention, loss of appetite, constipation), but there are numerous other symptoms including anemia, fatigue, weight loss, osteoporosis, vitamin deficiencies, fibromyalgia, migraines, other auto-immune diseases, among other symptoms (See Section Symptoms).
I don’t have any symptoms, how can I have Celiac? One can have “silent” Celiac and have very vague or no symptoms at all and still have intestinal damage.
“Cheating” a little is okay, right? No, Nein, Non, Na, Nao! Even the slightest amount of gluten (1/64 of a teaspoon) can cause intestinal inflammation. Continuous inflammation could result in cancer.
How should I react when friends/family say “Oh, you can have just a little bite”? Have patience and do what you know is right – do not take the bite!
Will the Gluten-Free diet cure me? No, there is no cure for Celiac. Once gluten is removed from a person’s diet, the small intestines will eventually heal and you will be able to live a healthy, comfortable life … but you will still have Celiac.
Should I also be tested for Lactose Intolerance since I was just diagnosed with Celiac? Yes, Lactose Intolerance often accompanies Celiac, though many people will outgrow the intolerance, once the intestines heal. The timeframe for outgrowing LI, will be different for everyone – it could be as long as a year. Be patient, and have a lactose re-test at some point. Be sure to avoid products with whey and casein, if lactose intolerant.
Will I Outgrow Celiac? No, once Celiac is “triggered”, it is a chronic, life-long disease.
Why do I hear of more people now being diagnosed? Thankfully, easy & highly accurate blood tests are now available to “screen” people for Celiac. Getting a primary care physician to consider the possibility of Celiac & then suggesting the blood test is another matter. The lack of awareness by physicians, the varied symptoms and occasional misdiagnosis of IBS or other, has contributed to large numbers of people still remaining undiagnosed. Yes, more people have being diagnosed over the last few years, but many others are still suffering, without an accurate diagnosis. National Celiac Organizations are working tirelessly to re-educate physicians on the importance of testing for Celiac.
Can an Increase in Celiac be attributed to an increase in the gluten content of wheat, due to “Wheat Breeding?” According to the Journal of Agricultural and Food Chemistry’s publication (dated 1.11.13), a survey was conducted and the “results do not support the likelihood that wheat breeding has increased the protein content (proportional to gluten content) of wheat in the United States”. Other possible factors were discussed. Read the complete survey results here.
Can I donate blood with Celiac? Absolutely, Celiacs can donate blood.
Can shampoo, lotions, or other personal care products containing gluten (wheat protein, also malt) be absorbed through the skin? Research indicates the gluten protein is too large to enter through the skin, though some have questioned the possibility. If a rash is occurring, it could possibly be due to an allergic reaction to some other ingredient in the product. It is recommended that small children avoid using products with gluten, as they may inadvertently ingest it. It is possible for adults to ingest shampoos, or put hands near mouth after applying lotions containing gluten as well. It is also questioned whether people with Dermatitis Herpetiformis should avoid gluten-containing products, as the possibility exists that gluten could enter the skin through small lesions, so if you have DH be sure to discuss with a health care professional. You may want to consider avoiding products with gluten if you have conditions such as acne, psoriasis, eczema, according to this article. (Note: Vitamin E, which is often found in skin/hair care products can be derived from wheat. Other ingredients to look out for are: barley extract, fermented grain extract, wheat amino acids – to name a few) This is a great source for identifying all wheat, barley, rye ingredients in cosmetics http://naturallydahling.com/ingredients.html)
Is the gluten-free diet tax deductable? Yes, Celiacs may deduct their expenses relating to a gluten-free diet. (see section on “Tax Deductions”).
The following products & food items are often in question:
Alcohol – Most grain alcohols & wines are safe for Celiacs, as the distillation process will kill off any gluten peptides. Unsafe alcohol includes beer, some winecoolers, and other alcohol and mixes with added flavorings (may contain barley malt). See Essentials/Alcohol for more info on Alcohol.
Blue cheese – Most blue cheeses do not contain gluten, though some do (the mold contains bread). The Blue Cheese debate will probably continue, but this article from the Canadian Celiac Association gives a detailed explanation of why Blue Cheese is probably safe, though it is certainly a choice whether or not to consume - http://www.glutenfreediet.ca/img/bluecheese.pdf
Communion wafers - Yes, they contain wheat, gluten-free altar breads are available: http://glutenfreehosts.com/ (Speak with your church leaders…)
Interesting article about Communion Wafers: About.com article: http://foodallergies.about.com/od/wheatallergies/f/communionwheat.htm
Envelope glue – According to the Envelope Manufacturers Association & the National Starch & Chemical Company, two U.S. glue manufacturers, there is no wheat gluten in envelope glue, corn is used, which is gluten-free. As an aside, a rep at NStarch, did comment however that the gum used in envelope glue is not “food grade”, and probably shouldn’t be licked anyway and suggested people use a sponge!
Lipstick, lipbalms - Though a large majority of lipsticks do NOT contain gluten, some do. Wearing lipstick made with gluten is entirely a personal choice. Some say small amounts of gluten are being ingested, while others believe lipstick with gluten may be worn without worry. There are many cosmetic manufacturers who do not add gluten to their products, so if you want the extra comfort level you should buy from them (see Manufacturers by category/Cosmetics). See CeliacCorner Store to order GF cosmetics.
Medication – Yes, medication & supplements may contain gluten. Read labels carefully and see Essentials/Medication for more info.
Natural Flavorings - Most added flavorings are derived from corn, but they can also be derived from barley malt. If natural flavoring(s) is listed without naming the source, it is best to call the manufacturer.
Oats – Oats in moderation are tolerated by most Celiacs, but it is important to purchase gluten-free oats, to avoid cross contamination. Also important to note: if newly diagnosed with Celiac, it is recommended to wait until intestinal healing has occurred before introducing Oats (see “note on Oats”).
Orange Juice – The majority of plain 100% orange juices are gluten-free. At least one OJ manufacturer stated they did use gluten in some of their juices which were not 100% OJ. Best to call OJ manufacturer’s directly to receive the most accurate, up-to-date info on your favorite brand.
Playdough – Yes, contains wheat. Small children may handle it, and then put fingers into mouth.
Postage Stamps – Fortunately, the majority of postage stamps are now peel-off! According to the U.S. Postal Service, the adhesive or lick-on stamps is corn-based and thus, gluten-free.
Tea Bags – We found no conclusive evidence that wheat is used in the adhesive to bind Tea bags, what you do need to be sure of is that “Barley” has not been added as an ingredient – be sure to check “herbal” tea ingredients.
Toothpaste and Mouthwash – Research shows the majority of major brand manufacturers do not intentionally add gluten to most of their products. We contacted several of the leading manufacturers and received similar responses (disclaimers?) ”… while they do not intentionally add gluten to the majority of their products, they cannot guarantee the product will not come in contact with other gluten-containing ingredients (i.e. cross-contamination); and/or they are unable to guarantee other raw ingredients from suppliers are gluten-free; and lastly, some products have not been officially “tested” for gluten content, and cannot be guaranteed gluten-free”. Some believe even if there were gluten in the product due to cross-contamination, it would only be in trace amounts, and unlikely to cause symptoms. We suggest you call the manufacturer to confirm your favorite products have not had any gluten “intentially” added, and then take extra care to rinse well and don’t swallow! Toothpaste and mouthwash for children would be another matter. Since they may have accidental swallowing, it is best to use a product that is confirmed gluten-free, and cross-contamination issues, if any, are addressed. Among others, Tom’s of Maine offers gluten-free toothpaste & mouthwash http://www.tomsofmaine.com/research/not-in-our-products
Note: See sections What Can’t I Eat & Other Sources of Gluten for additional food ingredients which are frequently in question.