What to Do When You Are First Diagnosed with Celiac Disease

When you are diagnosed with celiac disease or a wheat allergy, there are many things to learn.  I am hopeful this checklist will be helpful to you--or someone you know--who is in that state of disbelief and depression.  I seriously went through a stage of mourning when I had to give up gluten.  I had to say goodbye to many of the foods I loved.  It is a good thing there is so much hope and joy that comes from better health.  There are such great gluten-free products available now, which is wonderful! 

If you have been diagnosed for a while and have a good system for keeping your diet gluten-free, take a look at this list.  Please comment on my blog if you can think of any additional tips to share with all of us.

1.  Understand the necessity of reading labels for the latest information.  Example:  Several cereals, candies, and chips have changed their ingredients and now have wheat in them, or a cross-contamination warning.  Remember:  wheat-free doesn't always mean gluten-free.  Watch for barley/malt, rye, and oats.  (Gluten-free oats are available in many health food stores. They are grown away from wheat and processed in a factory away from wheat.)  Forms of wheat to avoid include kamut, semolina, spelt, and triticale.

2.  Plan a grocery store visit when you are not in a hurry.  Take time to read the labels on everything you routinely buy.  Examples: The crazy thing is that tomato paste by itself might be just fine, but if you buy the tomato sauce with seasoning added, it might have wheat.  Check the label on dried fruit (which may be coated with wheat flour to prevent it from sticking together), deli roast beef, flavored rice, crispy rice or corn flakes (may contain a form of barley/malt, which has gluten), flavored potato chips and corn chips, frosting, beef broth/bouillon, seasoning mix, gravy mix, hot dogs, salami, trail mix, artificial crab, marinades, and soy sauce.  Some envelopes may have wheat on the seal, so just use tape instead of licking the seal.

3.  Medicine and vitamins may contain gluten. A possible website to check is glutenfreedrugs.com.  Check your toothpaste label.  (Sensodyne toothpaste is not gluten free at this time).

4.  Even though gluten is not supposed to absorb through the skin, several people in our local support group have felt there is a connection between skin and scalp irritation and the wheat in lotions and hair products.  Some lipstick contains wheat, and since those of us who wear it accidentally consume it...we need to buy gluten-free lipstick.

5.  When eating at restaurants, it is important that the employees understand the concept of cross-contamination on grills and in cooking oil. French fries cooked in the same oil as chicken nuggets are not  considered gluten-free. Many restaurants have gluten-free menus that are available online.

6.   Maltodextrin, listed by itself, does not contain wheat or barley. It would seem that maltodextrin would contain barley because of the word “malt” in the word “maltodextrin.”  However, this is not the case.  Of course, if it lists "wheat maltodextrin" in the ingredients, don't eat it.  I've seen this ingredient in some flavored potato chips.  Modified food starch produced in the USA is commonly made from corn. Also, caramel color, artificial flavors, and artificial colors are all usually gluten-free in this country. 

7.  Make sure you have your own peanut butter, jam, jelly, butter, honey, mayonnaise, etc. Labeling will help prevent cross-contamination.  Buy an extra toaster to be used for gluten-free bread. Label it, “For gluten-free bread only."

8.  Purchased play dough often has wheat. For young children who tend to lick their fingers, it may be important to make homemade play dough (see my cookbook for a recipe with rice flour). 

9.  Be aware of the need to stop making food that includes airborne wheat or white flour.  If someone else is making a recipe with flour, leave the area until the area is completely free of flour.   Some people are so sensitive that touching gluten products can affect them.  It is a good idea to have your blood levels checked for antibodies periodically to make sure levels are down. Even though you are not eating gluten you may have antibodies if something in your environment--such as airborne flour--is affecting you.

10.  When children who have celiac disease have gone to an event where they have been deprived of a treat, it may be helpful to have a supply of gluten-free candy at home to give them when they arrive home. If possible, send the treat with them to the event.  Serving gluten-free pizza from the health food store (or homemade) can help ease the disappointment felt from missing out on pizza with gluten.

11.  Please spread the word to others about your symptoms and how you were diagnosed.  It is common for proper diagnoses to take 10 or 11 years.  The diagnosis of this disease is still variable and difficult for most of the medical profession. Most of the people in our support group have been ill and have consulted numerous doctors before discovering that they have gluten intolerance.

12.  Have you gone off of gluten and you are still sick?  It is possible you may need to go off of dairy products for a time--perhaps six months or so.  Also, there may be some cross-contamination of gluten on the dishes you are using, if gluten is still in the house.

13.  Have hope!  You can do it!  Before you know it, you will have a gluten-free routine, and you can help others when they are first diagnosed.  Check the internet (or ask your doctor or health food store employees) how to get in contact with your local support group.  It is nice to know you are not alone...and you can share brands of gluten-free products you like and ask others what they have found.