Celiac Disease Program and Support Group

1. I always start out by asking if the company has a list of gluten free products they can send me. Asking for a list tells me two things:
   • first, that a company is somewhat familiar with celiac disease
   • second, they're willing to put information in writing.

   Also, companies that can't provide a written list and only read a list of products over the phone are more apt to give you inaccurate information. I think one of the reasons for this may be because those kinds of lists are often assembled "on the spot" by the person who is quickly reading through information on different computer screens.

2. Once I see a written list, I may call a company back and ask specific questions about certain items, especially if something doesn't look "right." Cookies and cream flavoring necessitated one callback, but the manufacturer assured me there were no actual cookies in the flavoring. Another time, I found minestrone soup on a gluten free list. When I called back, the manufacturer agreed that it was not gluten free.

3. If a manufacturer doesn't have a written list, I ask him to check products over the phone. If I'm aware of specific ingredients, such as modified starch, I'll ask what it's derived from.

4. I also ask about possible cross contamination. Unless a product is made in a dedicated factory -- and most major brands are not -- it will probably be manufactured on the same lines as those that produce gluten-containing products. However, most manufacturers will state that the lines are thoroughly cleaned between runs. For many celiacs, this is enough and they're willing to use these products. Some celiacs, however, don't consider these items to be "gluten free."

• Sometimes products do not contain any gluten-containing ingredients and are manufactured in gluten-free environments.

• Sometimes products do not contain any gluten-containing ingredients, but are manufactured on lines with other products that do contain gluten.

Sample comments might include:

• "Manufacturer states that the product contains no gluten containing ingredients but cross contamination is possible."
• "Manufactured on lines producing gluten containing products, but lines are thoroughly cleaned between runs."
• "Manufacturer states there is no possibility of cross contamination."

My feeling is that if the manufacturer refuses to say that a product is gluten free, even if there are no gluten containing ingredients and the lines are cleaned, then it's not my job to make that decision for him. My job is to report what he says so that our customers can make their own informed decisions.

I think it's very important to verify information directly with each manufacturer. We never depend on "word of mouth" assurances from friends, other celiacs or message boards. Friends and other celiacs don't manufacture foods and drugs, so how can they know what's in them? Only manufacturers know what's in the products they make, but friends and message boards can serve an important function.

For instance, they can alert you as to when a product may have changed. If you suddenly hear that Brand X Allergy tablets lists wheat starch on its label now, and it used to list cornstarch, you'll know it's time to call the manufacturer and update your information. Even then you need to carefully check the label. Are you looking at the 4-hour tab or the 8-hour tab? Just because they're both Brand X Allergy tablets doesn't mean the information is the same for both of them.

Trying to figure out whether a product is gluten free or not can be difficult, especially for newly diagnosed celiacs. Some ingredient names don't even sound like part of the English language! Our goal is to provide news and information for the celiac community. Aside from our products, we have a lot of free information on our website including over a hundred celiac medical questions which have been answered by some of the top celiac specialists in the US.

We also post articles and research stories from our free celiac newsletter, answer questions about gluten free cooking, post recipes and traveling info and host a discussion site. We maintain gluten information for an online list of ingredients on our Resources/Free Info Lists page...or you can write to us at celiac@clanthompson.com if you'd like help researching your favorite foods or drugs.