Living With Celiac Disease
By Shirley German

Celiac disease (CD) is a digestive disease that damages the villi of the small intestine, interfering with the absorption of food nutrients. It is a lifelong autoimmune disorder triggered by the consumption of gluten containing grains in individuals with a genetic intolerance to these specific gluten proteins.

Gluten, found in wheat, barley, rye and some forms of oats, drives the immune response in the gut of genetically predisposed individuals, resulting in chronic inflammation of the small bowel. Continual exposure destroys the intestinal lining, reduces the absorption of dietary nutrients, and can lead to nutritional deficiencies. Removing gluten from the diet of these genetically predisposed individuals can mean the difference between health and disease.

Some CD patients develop symptoms such as diarrhea, abdominal pain, irritability, depression, or skin rashes early in life, while others feel healthy far into adulthood. Other individuals with CD may not develop any symptoms at all or their symptoms may go unnoticed. If symptoms do appear,or are unnoticed and are left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer.

My first symptom was unexplained anemia. I was visiting a doctor specializing in thyroid conditions as I had been experiencing recurring abnormal thyroid levels in my blood work. Interestingly, the doctor took one look at me and asked me how long I had been "that color." (I have always been pale but apparently I was now "pasty.") He took some blood that showed my iron was well below the normal range.

Having eaten most of a healthy cow on a regular basis, it was unlikely I was not getting enough iron in my diet; it was more likely that I was not absorbing it.

I took to the internet to conduct my research and to learn why I might not be absorbing iron. The easiest reason I could find was a lack of vitamin B12. Requesting some further blood-work, I found that my vitamin B12 level was almost nonexistent. I started receiving injections of vitamin B12 on a weekly basis and my vitamin B12 and iron levels returned to normal. As soon as I stopped receiving the injections, my vitamin B12 and iron plummeted once again. Something was interfering with the absorption of vitamin B12 from my diet.

Along with not absorbing vitamin B12 and iron, I was having increasing symptoms of gastrointestinal bloating and pain, chronic diarrhea, overwhelming fatigue, muscle weakness, sudden and severe weight loss, and an inability to concentrate. These symptoms, the knowledge that my husband, a biologist and researcher, had gained from a conference he recently attended, as well as a quick look at an internet site for CD came together to suggest that I might have Celiac Disease. His suggestion was that I try a strict gluten-free diet for about six weeks and reassess my symptoms.

Only a few weeks into the diet, I was feeling so much better that I approached my physician and asked for a blood test to determine the presence of CD. My tests returned, positive. I was then referred to a gastrointestinaI specialist to confirm the diagnosis. He asked for further blood work, to determine the presence of specific antibodies associated with CD, and a small intestinal biopsy. This biopsy is considered the most accurate test for CD. All tests returned, positive.

Although the diagnosis of CD is difficult and often overlooked by physicians, knowledge about CD is growing, and more and more CD sufferers are getting diagnosed. At this time, there is no cure and no medication specifically for treating CD; however, some may need to take medications to address their particular autoimmune issues.

So how do you cope with Celiac Disease?

  1. Follow a strict gluten-free (GF) diet. This is not as difficult as it may seem. Vegetables, fruits, meats, and dairy products in their natural, unprocessed form are OK. The challenges are the grains and the processed foods, so learn the names of gluten free grains and read, read, read your labels! Words such as "modified food starch", "caramel coloring", and "malt flavoring" are foods to avoid. Other examples of hidden glutens are soy sauce (contains wheat starch); some salad dressings and soups (may contain modified food starch -- a thickening agent which may or may not contain wheat); Coke (contains caramel coloring); and medications (may be coated with gluten).
  2. Avoid substituting gluten grains with starches -- rice, corn, tapioca, etc. Explore the variety of other GF flours that have more nutrients (e.g., bean flours, flax seed, almond, etc.).
  3. Forget fast food -- that french fry basket also dipped with onion rings; battered fish, chicken and shrimp is your enemy! Save going out for dinner to those restaurants that are familiar with everything that went into the dish that you are about to eat. When you do go out to eat, ask questions!
  4. Read labels that go onto your body, also -- even my hairdresser is aware that she needs to consider using gluten free products (some persons with CD can absorb the gluten proteins through their scalp). Many years ago I soaked in an Aveeno (oatmeal) bath -- I broke out in large, itchy hives!
  5. If you like to bake, you can make your own gluten free favorites from scratch. Gluten-free baked products bake differently so take a GF cooking class or find a GF recipe of your favorite cereal based foods that you just can't do without. Bette Hagman and Patricia Riley have good, easy recipes.
  6. Encourage more stores to carry your favorite GF brands. Commercially gluten-free breads, crackers, bagels, donuts, English muffins, cookies, frozen dinners, cakes, etc. can be found in the frozen food aisles of the grocery store or they can be ordered online.

Some of my favorite products for their taste are:

  • "Tapioca Rice English Muffins," by Kinnikinnick;
  • Gluten-Free Bagels and Crackers, by Glutino;
  • "Sundried Tomato and Roasted Garlic Bread," by Whole Foods, Glutenfree Bakehouse;
  • Any "Gluten-free Pantry" mix; and
  • "Simplebites" Mini Cookies, by Pamela's

I have found that it's best to toast gluten-free breads, at least lightly, and especially if you're going to use the bread to make a sandwich.

Along with the above pastry items, I have discovered a commercially available beer made without wheat or barley called "Redbridge." It's distributed by Anheuser Busch Inc. I discovered this beer while dining at PF Chang's, one restaurant that regularly provides a gluten-free menu.

I still take vitamin B12 shots, monthly; and multivitamins, extra calcium and vitamin D, daily. I have the energy to participate in most of the activities that I choose, I've gained back a healthy amount of weight (although I now struggle with that as any typical, middle-aged woman!), and I can concentrate, most of the time, better.

Writing this article has been quite therapeutic for me; having an outlet to talk about my experience, helps me to cope with this challenging situation. I also hope that in writing this article, I will alert others who might be struggling with some of the same issues to take charge and seek help for themselves. You are one of the best resources to refer to for your own health and well-being.

How to get help/started:
  • Keep a dietary log of the foods that you eat, and when, for at least two weeks.
  • Note symptoms that you are experiencing – be specific and include when they occur.
  • Take your log with you on your next doctor's visit.
  • Try a gluten-free diet for 4 weeks to see if your symptoms improve.
  • Check out the various websites available for information regarding CD/read a book about it. One of my favorite websites: www.csaceliacs.org.
  • Consider your family's health history.
  • Talk with someone who already has the disorder.
  • Be prepared to accept that you do NOT have CD.

Seven years ago Shirley German was (self) diagnosed with Celiac Disease. Over these years, she has developed a strict dietary approach to managing the disease. With careful research and some trial and error, Shirley has modified and replaced a number of her family-favorite, conventional, gluten-containing recipes with gluten-free recipes providing a relatively normal array of traditional food choices for her whole family.