Ask Questions About Celiac Disease
Do you have unanswered general nutrition questions about the gluten-free diet and lifestyle?
Melinda Dennis MS, RDN, LDNNCA Senior Nutrition Consultant
Melinda Dennis is NCA's Senior Dietitian Consultant and is happy to answer them. Please submit questions that are applicable to a general gluten-free audience. We regret that personal clinical questions (medical history, labs, supplements, etc.) cannot be addressed.
Time allowing, every effort will be made to answer all submitted questions by the next month’s e-newsletter. Questions and answers may be chosen to be anonymously included in the e-newsletter. They may also be posted to the website. Questions related to children or teens (17 years old and under) will be sent to clinicians at Boston Children’s Hospital and may require more time.
Note: This information is provided by NCA and Melinda Dennis, NCA's Senior Consulting Dietitian. This information is meant for educational purposes and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. This information can be printed and used in consultation with your physician or dietitian. No liability is assumed by NCA, Ms. Dennis or her nutrition consulting service Delete the Wheat, LLC. by providing this information.
Ask The Dietician
Please submit questions that are applicable to a general gluten-free audience. Personal clinical questions (medical history, labs, supplements, etc.) cannot be addressed.
Question of the Month
Q. I have celiac disease and fastidiously avoid gluten. However, I am very tired. Are there any new treatments I should be looking out for? Or do you have any suggestions about how I could feel less tired?
A. Gluten exposure is one of the most common reasons for continued fatigue in celiac disease. Even if a person thinks he/she is following a strict gluten-free diet, it’s always helpful to review practices for dining out safely, and consider new sources of possible cross contamination in the kitchen. Take a few minutes to recheck labels of food and supplements, recheck medications, and make sure all flour, grain and grain-based products (such as amaranth, quinoa pasta, etc.) are labeled gluten-free. Consider following www.glutenfreewatchdog.org to keep informed of gluten-free products that have been tested for gluten contamination via the best testing protocols. These are just a few examples of ways to make sure gluten is not sneaking into your diet.
There are many other reasons for fatigue, including thyroid conditions or other medical conditions, an unbalanced diet, nutritional deficiencies such as magnesium and vitamin D or iron, folate and B12 which can lead to anemia, poor sleep quality, depression, reactions to medications, food intolerances or food allergies, inadequate or excessive exercise, and stress, among many others. Fatigue can also be caused by other comorbid conditions, such as small intestinal bacterial overgrowth (SIBO), an overgrowth of bacteria in the small intestine that disrupts the digestive tract. SIBO can lead to nutritional deficiencies and many gastrointestinal symptoms, as well as fatigue.
Share your symptoms with your doctor who may check celiac antibodies, such as IgA-tTG, and run additional lab tests to check for anemia or other vitamin and mineral deficiencies. A dietitian can help review the gluten-free diet to see where positive changes can be made.
I have no financial interest in Gluten Free Watchdog.
Q. I am unsure of the importance of using gluten free skin and body products for someone with Celiac Disease? For example, lotions, makeup, shampoo, conditioner, lip balm or lipstick, etc., things that do not pass through the GI tract necessarily. Even touching things like Play Doh... Is the skin contact dangerous for Celiacs? I have heard mixed information from several sources. And when the person has little to no outward symptoms when glutened, it's hard to know how to proceed with these choices!
A. Per celiac gastroenterologist, Dr. Alessio Fasano, “there is currently no scientific evidence that gluten used in cosmetics that are not ingested is harmful to individuals with celiac disease, including those with dermatitis herpetiformis (the skin form of celiac disease). If you have celiac disease, then the application of gluten-containing products to the skin should not be a problem, unless you have skin lesions that allow gluten to be absorbed systemically in great quantities. The reason why this should not be a problem is that, based on what we know right now, it is the oral ingestion of gluten that activates the immunological cascades leading to the autoimmune process typical of celiac disease.”¹
Dr. Fasano’s statement applies to products applied to the skin or hair, such as body lotion, shampoo, conditioner, sunscreen, shaving cream, deodorant, makeup, and perfume, especially if hands are washed after use.
A few details to consider:
- Hand lotion –an “in-between” case. Some gluten exposure could occur if the individual uses a lot of lotion and does not wash his/her hands before eating.
- Products used in and around the mouth, such as lipstick, are more suspect. Even if they do contain gluten derivatives, per dietitian Tricia Thompson’s calculation, it would likely only contribute very minimal gluten to the diet. There was no quantifiable gluten found in any of the four lip products and two lotions containing ingredients derived from wheat, barley, rye, and oats that were tested in her 2012 study.¹
That being said, it is my clinical experience that several patients with celiac disease and dermatitis herpetiformis have reported reactions to what appears to be topical exposure to gluten (or air-borne in the case of hair spray) in body care products and that this reaction resolved once they stopped using the gluten-containing product. We do not know for certain if it was a gluten-containing ingredient or some other ingredient that caused the reaction, or if the product was tested for gluten. However, each of us knows our own body best. I support my patients who follow a gluten-free diet in selecting cosmetics free of gluten, in particular lip products and hair and face lotion, should they choose to do so.
People with a wheat allergy are recommended to avoid skin or body products containing wheat.
Here are some tips on selecting gluten-free products for the concerned consumer:
- Read the ingredients listed on cosmetics looking for the words “wheat,” “barley,” “malt,” “rye,” “oat,” “triticum vulgare,” “hordeum vulgare,” “secale cereale,” and “avena sativa.”
- Look for off-packaging ingredient lists when the product packaging is too small to include this information on the label. This may be in the form of tear sheets located next to the product display case.
- Contact cosmetic companies when ordering products by mail order and ask whether their products contain any derivatives of wheat, barley, rye, or oats.
- Use cosmetics labeled gluten-free. An increasing number of manufacturers are labeling their products.”¹
The Food and Drug Administration (FDA) does not issue rules addressing the use of the term ‘gluten-free’ in labeling of cosmetics. Therefore, gluten does not have to be definitively declared on cosmetic labels. The FDA, however, does not prohibit cosmetic companies from labeling products gluten-free.
More studies are needed on the gluten content of cosmetics containing ingredients derived from wheat, barley, rye, and oats, particularly for the lips and hands.
Play Doh™ is made from wheat flour. As long as it is not eaten and hands are washed carefully after use, it is ok to use. However, since children often have their hands in their mouths, I prefer to recommend gluten-free Play-Doh™ whenever possible. There are gluten-free recipes online.
¹Reference: Thompson T, Grace T. Gluten in cosmetics: is there a reason for concern? J Acad Nutr Diet. 2012 Sep;112(9):1316-23.
Q. With celiac disease, when I ingest gluten and it affects me days later, is it possible for the damage to heal or is it permanent? I’ve heard both in passing and I’ve been nervous that my ingestion over the past few years has affected more than just my intestines and I know my skin has the effects of gluten ingested and I just was wondering about it.
A. Good news! The villi (cells lining the small intestine) are not permanently damaged in celiac disease. In fact, the cells in the intestinal wall regenerate every 72 hours as long as they are not being exposed to gluten. The amount of time it takes for the villi to heal, however, depends on the person, how long they have had celiac disease, and the amount of damage to the villi. For most people, the intestine is expected to recover over a period of weeks to months on a strict gluten-free diet. For others, it may take years for the villi to fully recover.
Celiac disease is known as an extra-intestinal disease, meaning that it affects more than just our small intestine. It can also negatively affect other parts of the body, such as our liver, bones, and skin. Continuous exposure to gluten in people with celiac disease can lead to severe small intestinal damage (complete loss of villi) which, in turn, can lead to malabsorption, bone loss, nutritional deficiencies, and other conditions and diseases. The only known treatment for celiac disease is a strict gluten-free diet and carefully following the gluten-free diet is the best and only way to take care of our bodies and our long-term health.