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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? 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.
- Is stool testing a valid diagnostic test for celiac disease? From my understanding, this testing has no proven scientific basis at this time. Diagnosis/Testing
- 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 may 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
- What happens if I don't follow the diet carefully? This differs if you have celiac disease or gluten sensitivity. If you have celiac disease, you may not have any symptoms what-so-ever 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 only gluten sensitivity, 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?" I view "cheating" as purposely putting a toxic substance in your body for those with celiac disease. It's not the short-term of possibly feeling ill that bothers me, it's the long-term very negative effects "cheating" can do to your overall health and longevity.
- Can I eat oats? About Oats My daughter and I both consume the "pure" oats without a problem. It is recommended that you don't eat large quantities at first. They are much more expensive than regular oats, but are definitely a treat. They can be found at Henry'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? Yes, if the product is made in the U.S. It can be made from a variety of starches, including corn, potato and rice. If (and evidently it rarely is) it is made from wheat, the law requires that "wheat" is stated in the ingredient label. And furthermore, testing in Canada has found that maltodextrin made from wheat has no gluten because it has been so highly processed that the gluten is removed.
But beware of just plain "malt", "malt flavoring", "malt vinegar", etc. There is a very good chance they have been made from barley malt, and the law does not require stating "barley" in the ingredient labels. These are ingredients you must call the manufacturer on.
- Can I eat in restaurants? Eating out suggestions. Chain restaurants. San Diego restaurant recommendations. Restaurants cards to present to restaurant staff. Restaurant Dining Info.I'm not ready to give up eating out. I just 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 consume vinegar? Yes. See "Distilled alcoholic beverages and vinegars are gluten-free" American Celiac Disease Alliance website Scientists say the distillation process takes out the gluten that is harmful to us. That is good enough for me.
- Can I consume alcoholic beverages? See "Distilled alcoholic beverages and vinegars are gluten-free" American Celiac Disease Alliance website Same comment as above. And 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? see "Prescriptions" on the American Celiac Disease Alliance website , Medical Resources, Pharmaceuticals
"Gluten in Medications" on the National Foundation for Celiac Awareness website It is such a pain to call the manufacturers, but often that is your only choice.
- 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. The best way is always by reading 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. But sometimes you don't have a choice, and I personally feel chances are very good you won't be affected - there are those that would disagree with this, however. Each individual must make their own choice on this issue.
- What's the deal with McDonald's French fries? McDonald's From the discussions presented, I feel the French fries are gluten-free. There is no detectable level of gluten in the ingredients. HOWEVER, the real issue is whether they are cooked in a dedicated fryer, and also if they combine oils from all the fryers at the end of the day. You'd need to talk to the restaurant manager about that.
- 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, all sell a lot of gluten-free foods. If you are in a remote location with not many options, you can order foods through the mail.
See the Columbia celiac center answer to this question: http://www.celiacdiseasecenter.columbia.edu/A_Patients/A02-FAQ.htm
- 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, Alvine Pharmaceuticals, Alba study, University Researches at UCSD, Irvine
- 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 at "Advocacy Action Center" 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.
Participate in a local support group.
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