By Katherine Woldum, RD, LD
Celiac disease, or gluten-sensitive enteropathy, once thought to be rare, is a chronic autoimmune intestinal disease, that is now recognized as one of the most common inherited diseases, with a world prevalence of about 1:266 people. For those individuals with close relatives with the disease, the prevalence is more like 1 in 7. What makes the diagnosis difficult is the variability of the symptoms, ranging from immediate and severe gastrointestinal distress to the opposite end of the spectrum, or silent celiac where there are no symptoms.
The diagnosis can be difficult and misdiagnosis is common and can be confused with irritable bowel syndrome, lactose intolerance, fibromyalgia, chronic fatigue syndrome, or ulcers. On average, it can take nine years for the proper diagnosis.
Symptoms of celiac disease: Weight loss; Abdominal pain; Lactose intolerance; Bone or joint pain; Easy bruising; Edema of hands and feet; Migraine headaches; Depression; Infertility; Elevated liver enzymes; Chronic fatigue; Iron, folate, and or vitamin B12 deficiency; Diarrhea or constipation.
In children, the diagnosis of failure to thrive, learning difficulties, irritability, or delayed puberty are all flags that further investigation needs to happen.
Individuals who have had a diagnosis of: Type 1 Diabetes; Osteoporosis; Down syndrome; Turner syndrome; Autoimmune thyroid disease, autoimmune liver disease, Addison’s disease all need further screening for celiac disease.
It is important to note that a gluten free diet should not be started before the diagnostic tests have been completed. Specific blood tests can be ordered , but these are not 100% accurate.
A small intestinal biopsy is often ordered, but that too can be inaccurate.
Kenneth Fine, MD, of Dallas, Texas, has devoted his practice to helping patients with their diagnosis. He offers a number of tests and this information can be viewed at www.enterolab.com.
Once the diagnosis of celiac disease has been confirmed, it is essential to follow a gluten free diet. Vitamin and mineral supplements may be necessary as well.
Eliminating gluten from a diet can be challenging because this ingredient is so common in our food supply. Unless otherwise labeled, you may assume that sauces, marinades, canned soups and most processed foods contain gluten. It may be called modified food starch, stabilizer, flavorings, hydrolyzed plant protein, filler, or emulsifier in some of the following; beer, breading and coatings’ broth, soup bases, gravies, brown rice syrup, dairy substitutes, nondairy creamer, hot dogs, salami, sausage, imitation bacon and seafood, lunch meats, medications, vitamin and mineral supplements, salad dressings, marinades, spices, soysauce, spelt, spaghetti sauce, tomato paste, vanilla extract, veined cheeses such as blue cheese.
Successful meal planning requires knowlege, creativity, a positive approach, and the ability to make substitutions. Many foods are naturally gluten free including meats, fish, poultry, eggs, milk, cheese, yogurt, legumes, nuts, seeds, fruits, vegetables, and grain alternatives such as amaranth, buckwheat, corn, flax, millet, rice, quiona, sorghum and teff.
Stores are featuring more and more gluten free items. St. Louis is fortunate to have many gluten free bakeries who have adapted recipes to make them acceptable. The internet is also a source for ordering.
With over 400 bistate members, another source of local information can be obtained by emailing stlouisalerts-subscribe@yahoogroups.com. Yahoo will walk you through a simple process to add your email address to the group.
After you register with Yahoo, you may go to :http://health.groups.yahoo.com/group/stlouisalerts.
You will be asked for a password to review any messages, files, calendar, etc. Write down your password to get into the website and add stlouisalerts to your “Favorites” when you join.
Eating out requires knowledge and a willingness to be assertive. Explain what is needed, suggest a clean pan for food preparation, avoid batters, sauces, and confirm the order when it arrives.
Because of the complexity of this lifestyle which may be combined with other medical issues, it may be necessary to consult with a registered dietitian to assure that all requirements for a healthy diet are being met.
Healing begins on day 1 of a gluten free diet and the diet is a lifetime commitment.