May is Celiac Disease Awareness Month

As some of you may know, Bill has been battling many serious health issues over the past 17+ years, and one of the core underlying problems is he has Celiac (SEE-lee-ak) Disease.

And since May is Celiac Disease Awareness Month, we wanted to pass along some information about this hereditary disease in case it can help others.

For those of you not familiar with Celiac Disease (a.k.a. CD or celiac sprue), it’s a genetic issue and it’s not contagious.

Basically if Bill ingests any type of gluten, his immune system creates antibodies that attack and damage or destroy the villi lining the small intestine so his body cannot properly absorb basic nutrients – proteins, carbohydrates, fats, vitamins, minerals and, in some cases, water and bile salts.

Gluten is the common name for the proteins in specific grains that are harmful to persons with celiac disease. These proteins are found in ALL forms of wheat (including durum, semolina, spelt, Kamut®, einkorn and faro) and related grains rye, barley and triticale and MUST be eliminated.

Even tiny traces of gluten in foods can affect those with CD and cause health problems. And, according to the Celiac Disease Foundation, damage can occur to the small bowel even when there are no symptoms present.

Did you know…

• Celiac Disease is NOT a food allergy – it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can sometimes grow out of. This is not the case with Celiac Disease.

• according to the Celiac Disease Foundation, 1 out of 133 people in the U.S. are affected with celiac disease?

• the National Foundation for Celiac Awareness says about 83% of Americans who have celiac disease are either undiagnosed or misdiagnosed?

• CD is a hereditary disease and occurs in 5% to 22% of the offspring and siblings of a person with the disease.

Symptoms and complications

Celiac disease can appear at any time in a person’s life according to the Celiac Disease Foundation. In adults, the disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. CD is a multi-system, multi-symptom disorder. Symptoms vary and are not always gastrointestinal (GI). GI symptoms can often mimic other bowel disorders.

Most people with the disease have similar symptoms or issues although some people with CD have no symtoms at all. Celiac disease can cause abdominal pain, gas, bloating, vomiting, diarrhea or constipation (or both). It may also cause irritability or depression, anemia, joint pain, muscle cramps, skin rash (or small red bumps), mouth sores, dental and bone disorders, tingling in the legs and feet (neuropathy), general weakness and fatigue, weight loss and stunted growth (in children).

Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment.

And the National Foundation for Celiac Awareness explains undiagnosed celiac disease left untreated can increase your risk of other problems like osteoporosis, infertility, thyroid disease and T-cell lymphoma or other cancers.

No treatment can cure celiac disease. However, you can effectively manage celiac disease by changing your diet.

Celiac disease versus gluten-intolerance

There is a big difference between people suffering with celiac disease and those who are gluten-intolerant. If someone with CD ingests a tiny amount of gluten it will trigger their immune system causing damage in their small intestine and an inability to absorb certain nutrients. Basically it could set them back weeks or months since it takes time for the villi to repair itself and the inflammation to tamp down.

On the other hand, if someone who is gluten-intolerant (a.k.a. non-celiac gluten sensitivity or NCGS) ingests gluten they may experience discomfort like bloating, diarrhea or abdominal pain, but it does not damage their small intestine.

Read ALL labels and not just food stuffs

When a loved one is diagnosed with celiac disease you diligently begin reading ingredient lists on everything. We were shocked how many canned, bottled, processed, packaged, frozen, dried and ready-made foods or sauces have gluten in them.

Not only do you need to watch for things with wheat, barley, malt or rye … but things like flavorings, dextrin, caramel coloring, HVP, etc. may be questionable depending on what countries they were made in or what ingredients are used. And oats are an issue since they may have been cross-contaminated with wheat during growing, harvesting and processing.

Also realize just because somethings says it’s “Gluten Free” doesn’t mean it is. The product could have been processed or packaged on shared equipment or in a facility that also processes wheat or other gluten products. Even though manufacturers clean machines, gluten can get down into little crevices and it is airborne.

But there are products that are packaged and processed in dedicated, gluten-free facilities or adhere to the Celiac Sprue Association (or GFCO or QAI and NFCA) standards to obtain a certified GF seal or label. But even those products can have minute traces of 5 to 10 parts per million when tested for wheat.

The best alternative is to avoid processed foods altogether and make your own meals at home so you’ll know exactly what’s in them! We currently do that although there are some GF products we use in our preparedness kits, stores and snacks.

Also, be aware there are non-food products that may contain gluten like…

• Toothpaste and mouthwash
• Lipstick, lip gloss or balm
• Soaps, bath salts
• Lotions and creams
• Vitamins and prescription drugs
• Hair products (some shampoos, conditioners, hairsprays, etc.)
• Sunscreen
• Cleaning products
• Latex or rubber gloves
• Stamps, envelopes, stickers
• Chewing gum and many types of candy
• Communion wafers
• Pet food
• Art supplies (e.g. paints, glue, clay) or play-dough

And of course beer, grain alcohols and the list goes on. Many companies and restaurants are offering gluten-free products but again, always check labels and/or ask the manufacturers’ websites or chefs if products are made or packaged on shared equipment, cooking surfaces, etc.

Learn more

Below are just a few examples of reputable sites to learn about Celiac Disease and gluten-intolerance symptoms, risk factors, tests and diagnosis techniques, support groups and more. And remember, if you or someone you know has or possibly has CD, please encourage family members to talk to their physician or learn more about the disease and risks.

Celiac Disease Foundation
Celiac Support Association
Celiac.com (has a forum, GF mall, etc.)
Mayo Clinic’s Celiac disease section
National Foundation for Celiac Awareness (NFCA)
NIH’s National Digestive Diseases Information Clearinghouse

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