FAQs (Frequently Asked Questions)
The following questions are frequently asked by those with celiac disease, gluten intolerance/sensitivity, dermatitis herpetiformis, or those thinking they may suffer from one of these. The answers will direct the questioner to information given on this website or other websites. I will put my personal biases/opinions in purple type. Treat them as asides as if I was talking to a friend. You'll want to educate yourself and then form your own biases/opinions!
Warning: This is not meant as a substitution for medical advice. It is meant merely to educate. Please see your physician for any problems you may be having.
- What are the current validated testing procedures for celiac disease? for dermatitus herpetiformis? gluten intolerance? Diagnosis/Testing, American Celiac Disease Alliance
- Why should I bother getting tested? Diagnosis/Testing, American Celiac Disease Alliance website discussion
- Why can't I be on a gluten-free diet when I get tested? Because after you eliminate gluten from your diet, your antibodies go down (tested by the celiac screening blood panel), and your intestines begin to heal (looked at during an intestinal biopsy). These are the primary diagnostic tools for determining celiac disease. Diagnosis/Testing
- What can I do if I'm already on a gluten-free diet and want to be tested for celiac disease? Unfortunately, unless you are willing to go back on a gluten-free diet for a few months, any testing done for celiac disease would probably be invalid (see above).
- Is stool testing a valid diagnostic test for celiac disease? This testing has no proven scientific basis at this time for diagnosing celiac disease. The website for the one company, Enterolab, that does this testing says it is only valid for gluten sensitivity, not celiac disease.
- What would genetic testing tell me? See "What is genetic testing and who can benefit from it?" on the University of Chicago Celiac Disease Center website. There is also an article on the Celiac.com site titled Ten Facts about Celiac Disease Genetic Testing by Dr. Scot Lewey. At this time the genetic tests only prove if an individual could POSSIBLY develop celiac disease over their lifetime. If a person does not have the necessary genes, then at this time it is felt they CANNOT develop celiac disease. The genetic tests will NOT tell you if a person has celiac disease, gluten intolerance, or an allergy.
- What are the basics of the gluten-free diet? American Celiac Disease Alliance. Quick Start Diet Guide by the Gluten Intolerance Group (GIG).
- What happens if I don't follow the diet carefully? This answer differs if you have celiac disease or gluten sensitivity. If you have celiac disease, you may not have any symptoms when you consume gluten. However, it can still be doing damage to your small intestine. This includes "just a little" "only once in a while" etc. If you don't have celiac disease but are gluten sensitive, it may mean that a diet low in gluten is adequate. See the American Celiac Disease Alliance discussion "Why is it important to know if you have celiac disease, versus wheat allergy or gluten intolerance?" "Cheating" for celiacs is purposely putting a toxic substance in your body. It's not the short-term result of possibly feeling ill, as much as it is the long-term very negative effects "cheating" can do to your overall health and longevity.
- Can I eat in restaurants? Restaurants that provide GF Information. Restaurants cards to present to restaurant staff. Eating Out Tips. You don't need to give up dining out. Eat very simply, taking as few chances as possible. Salads with oil and vinegar, hamburgers without buns, fish without sauces, etc. No soups, sauces, stews, salad dressings, etc. Ask many questions, like "Do the mashed pototoes have flour in them?" You'd be surprised at many of the answers you'll get. And remember the very wise motto "When in doubt, do without."
- Can I eat oats? About Oats Regular oats are very often contaminated by other grains. There are several companies now that sell "pure oats" that are carefully processed to keep them uncontaminated (see "About Oats"). It is recommended that you don't try eating oats until after your gut has healed, and then begin on 1/4 cup as a trial. This is because there is a protein in oats (not gluten) that does negatively effect some celiacs. The "pure" oats are much more expensive than regular oats, but are definitely a treat. They can be found at Henry's and Jimbo's.
- What is quinoa and how is it used? About quinoa Quinoa seems like an easy thing to add to soups, chilis, casseroles, etc.to help get some whole grain in our diets. It has a very mild taste.
- Is maltodextrin gluten-free? See discussion in "Confusing Ingredients".
- Can I consume vinegar? Yes. See "Distilled alcoholic beverages and vinegars are gluten-free" American Celiac Disease Alliance website and also in "Confusing Ingredients".
- Can I eat any bleu cheese? Yes, according to Tricia Thompson, a Registered Dietician specializing in celiac disease. See "Confusing Ingredients".
- Can I consume alcoholic beverages? See "Distilled alcoholic beverages and vinegars are gluten-free" American Celiac Disease Alliance website Also see "Confusing Ingredients". Don't forget that wine is gluten-free naturally. Bourbon may not be distilled, so beware. Beer and malted beverages are out, except for the new GF beers (they will be clearly labeled).
- What is cross-contamination (cc), do I need to be concerned, what can I do about it? See "Contamination in Food Preparation" American Celiac Disease Alliance website. Gluten Free Kitchens."Kitchen Reorganization" in Newly Diagnosed.
- Do I have to worry about prescriptions/supplements? Medical Resources, Pharmaceuticals
Gluten Free Drugs on the Gluten Intolerance Group website. It is such a pain to call the manufacturers, but often that is your only choice. The pharmaceutical companies are not required to label gluten, and rarely do.
- How do I figure out which manufactured food products are gluten free? Product ingredient labeling, Product Updates You're best bet always is to read the ingredient label, and if there is any question, call or email the manufacturer. There are many lists out there for free online or for sale. Just beware that companies are always changing their products/suppliers, so lists become outdated from the day they are made. It is always best to read the ingredient label of each and every product. The companies that say they will definitely list gluten are the real gems.
- Do I need to worry about products not made in "dedicated facilities"? Gluten Free Kitchens
If you have a choice between products, always pick the one that is produced in a completely gluten-free facility. Each individual must make their own choice on this issue, however.
- Where do I buy gluten-free food? The good news is, more and more regular grocery stores are now selling foods labeled gluten free. Specialty stores such as Whole foods, Henry's, Wild Oats, Trader Joes, Jimbo's all sell a lot of gluten-free foods.
- What about fiber in the gluten-free diet? Fiber, which is important for good health for several reasons, is often lacking in a GF diet. Read more about this.
- How soon will I feel better after being diagnosed with celiac disease?. The Celiac Disease Center at Columbia University Medical Center answers this question in their FAQ section of their website at http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm. "Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and down" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten." You may become more sensitive to gluten mishaps at first once you have taken gluten out of your diet, but these reactions can lessen over time as you become healthier. You may also discover that you have other food intolerances, such as soy or dairy, which can mimic your gluten reactions.
- Will there ever be a cure for celiac disease? Probably not any time soon. There are no cures currently for ANY auto-immune disease. But when one is found for any one of them, hopefully the breakthrough will impact the outlook for the other auto-immune diseases as well.
- Where can I read research articles that concern celiac disease? See "Research" on About Celiac Disease
- Is there research going on now? Yes - lots. There are even some that are doing clinical trials and are looking for participants. See "Research" on About Celiac Disease
- How can I participate in national advocacy projects? The American Celiac Disease Alliance usually has several projects that anyone can easily and quickly participate in (i.e. by writing your congressman, taking a survey) See current projects on the American Celiac Disease Alliance website.
- How can I make a difference in my community?
Each and every time you pleasantly talk to someone about celiac disease, whether it be a friend, family member or restaurant staff, you are promoting celiac disease awareness.
Participate in a Celiac Disease Walk/Run in your area (there currently is not one for the San Diego area).
- Actively participate in a local support group.
- Donate funds to any of the local support groups or the many organizations/research centers across the country dealing with celiac disease and gluten intolerance.