Let's Talk About It

After a lifetime of celiac disease and dermatitis herpetiformis I have had the most difficult Summer ever. So I started with the pantry, where we have a side for me "Gluten Free". This can be good if someone does not put a box of gluten crackers on my side of the pantry, like a teenager!  I also reminded myself at the same time about Vinegar. Apple cider, distilled wine, balsamic are usually safe (I say usually because they can have added flavors, in which case the label should indicate that on the label. If not, take a minute to type a message to the company that produces the product. More and more I am taking fifteen minutes of my time daily to send notes to companies with vague "Ingredients lists. I do it nicely, and have received many "Thank You's", along with just a few nasty people on the other side of the telephone line or internet site. I then connect with them and mention this to the manager. I have received letters of apologies along with statements of "We will be changing our ingredients list, thank you for telling us. One company recently gave us a full credit for the product (which contained gluten even though it was listed gluten free). Back to VINEGAR. We have more vinegars on the market with enhanced flavorings than ever before. White vinegar may not be safe. The manufacturer can use wheat, rye or barley in their process and non-distilled contains gluten. If you do not have clear information avoid it.  Very expensive white vinegar should raise an alert flag and be verified. The fairly new salad kits come with a package of sesame seeds, sunflower seeds, craisins and nuts. One salad kit contains a package of these enhancers which have to be boiled. Watch out for it because it contains gluten and it was another "strike for me this Summer". Remember, these little seeds and nuts may have been coated with flour to prevent them sticking together in transport. It is better to create your own salad enhancers The problem is many companies do not know how wide the "gluten free" list travels. They do not realize that "MODIFIED ANYTHING" IS VERY VAGUE AND UNSAFE. Modified can mean anything, and does. I did not realize that shortening can contain Vitamin E from wheat germ, did you? Rice syrup seemed pretty safe until you look it up and find that it is made from barley enzymes. Roquefort Cheese, often listed as safe on most lists, but some brands contain gluten. Malt we knew was unsafe, even the flavoring. Maltose listed as safe on most lists because the manufacturing process is said to remove the gluten from end product, trace amounts or more may be left. Natural flavors caught me out this Summer. It is a vague term, remember wheat is "natural" too. Did you know that Pearl Barley and Pearl Rice is unsafe? I used to make barley with milk as a breakfast cereal. No more! TEA has also changed over the years too. The new flavored teas contain vague terms, and again 'Natural flavors" which is vague. Whenever possible buy whole leaf teas. There is an awesome documentary called "The Cove". Mercury Rising in the special features section discusses concerns with sushi: highly recommended to view this movie for health as well as environmental concerns. Another problem is " Natural Flavor and Color".Do not let the word "Natural" misguide you; wheat is a natural product. Always be careful with vague and general terms. I was also "caught" this Summer by a Dutch Store in our neighborhood. Everything on the packages was in Dutch, a language I am not familiar with.  I know that licorice contains gluten, and lots of it, but there were some bulk candies that looked like "Gummy Bears".  I asked the young man serving if he read Dutch. "Oh yes, I am fluent in Dutch".  I asked him if these gummy bear type candies contained gluten. I should have clued in right away when his eyes glazed over. He read the ingredients and said it did not contain wheat, and I stupidly bought some because at the time I had a candy craving. After two weeks of DH sores and itching I made myself swear I would never do that again. In fact, I have become so sensitive to gluten I should not have been in the bulk "anything" section of the store, and I know it.

Celiac.com Sponsor (A13):
After volunteering at the Dietician's office of our local hospital I am surprised at how uninformed they are. I was going to say "Ignorant" but that term is not very nice! The LAW states that an ingredient does not have to be listed if the product contains less than 100grams (amount varies) per kilo or less than a certain number ppm (parts per million). ANY amount of gluten, no matter how little, is harmful to a celiac. Please look for petitions you can sign to help groups trying to get the government to change these dangerous laws; consumers have a right to know exactly what is in any product they buy.

**To the gentleman who enquired about painful soles of his feet, I would question first if he had dermatitis herpetiformis because my nephew has DH sores on his feet when he cheats. Then I would ask him if he was thin, because the feet need some fat on them when walking.  I had problems with the soles of my feet because I am skinny (because of other connective tissue diseases). I purchased some "insoles" to put in my shoes and it helped, but what really helped was asking the pharmacist to make up a compound of anti-inflammatory cream, knowing that taking over the counter medications like ALEVE or IBUPROFEN, (any NSAID - Non Steroid Anti-Inflammatory pills) if used regularly can cause stomach bleeding, kidney and liver damage. Though they work very well for the celiac for abdominal pain or muscle pain, and of course for painful soles of the feet is not worth taking them regularly and risking kidney damage.

Yvonne (Vonnie) Mostat, Retired R.N., Freelance Journalist for the for the Celiac Journal