Celiac Disease and Me
Coeliac. Celiac Sprue. Nontropical Sprue. Celiac Disease. Gluten Intolerant Enteropathy. Gluten Sensitive Enteropathy. Idiopathic Steatorrhea. Malabsorption Syndrome. Intestinal Infantilism. Gee-Herters Disease. What are the meanings of these words and phrases? What have they to do with me?
A little bit more than a year ago, my husband began complaining more and more often about what an old man he was becoming. And who was I to argue? After all, as he crossed the threshold from twenty-eight to twenty-nine, he showed more and more signs of passage. His appetite, always astonishingly large for someone who was not fat at all, was decreasing. He experienced more muscle and joint aches and pains than before, though his activities remained relatively the same. He would become short of breath after moderate activity. And he was tired. As soon as he came home from work, he would take a nap until dinner was ready. Or if dinner was ready when he came home, he would have a nap for dessert.The tiredness and physical signs of weakness were easily explainable. His workload was bigger; he worked more hours and no longer had time to go to the gym every day during his lunch hour. Besides that, we had just been married a few months earlier. It was a big adjustment for both of us to change status and living arrangements, and to adjust our lives and lifestyles to accustom to each other. Any change, whether positive or negative, major or minor, equals stress, which manifests emotionally, mentally, physically. Sometimes in reaction, or perhaps as a defense, to it, all a person can do to cope with the stress is to sleep it off.
Almost before we knew it, January came. My husband, John, had been getting worse, but the changes were so gradual that we did not even realize it. People constantly accused him of looking extremely pale. His naps were lasting longer and longer, and he had to have one or two every day just to make it to bedtime. Still, he was very busy at work, and had given himself a huge project at home. We had bought an old house and decided to gut the whole thing to improve it, so we were living in my parents recreational trailer in our new backyard. It was still a stressful time, but in new and seemingly bigger ways.
In the meantime, we were adopting a new, more economical version of our medical plan. Because the plan required a primary care physician to refer all care, I decided to make appointments for both of us to have physicals, that way our new doctor would know us and have some medical background for us.
My physical was very interesting. It consisted of being weighed and having my temperature and blood pressure taken by the nurse. Then the doctor saw me. There was no examination, no request for me to have my previous medical records released to his office. He just answered questions that I came up with at the spur of the moment, and did not document any concerns that I had, such as my frequent, recurring headaches. If I would admit that I spent five minutes with him, I would be exaggerating. When I asked the doctor when I should come back, he said not to worry about it unless I had problems of some sort. Even then, he said, he does a lot of diagnosis over the phone. Stunned, I made my co-payment and left.My husbands physical was not much different than mine. Because John is a Type 1 diabetic, he sees an endocrinologist and has blood drawn every six months. Therefore, the doctor did not feel a pressing need to conduct too much of an exam that day either. However, John did express our concerns for the extreme tiredness, lack of appetite and energy, and weight loss. The doctor conceded with our hypothesis: it was stress.
While we were taking care of our medical appointments, John decided he had better have his blood drawn for the endocrinologist, as he was almost six months past due for it. The results came back surprisingly quickly, and equally surprisingly, by phone. One more surprise: John was extremely anemic. His blood counts were so low that the doctors decided to treat the symptoms first, rather than trying to find the cause.
In February, we began seeing a specialist, and a series of tests were performed. John had blood drawn and tested every two to four weeks, showing minimal improvement. Until the beginning of March, the doctors occasionally brought up the suggestion of blood transfusions, but my husband snubbed the idea and we worked around it. To make sure John would receive the attention he needed, the specialist wrote to our insurance company and obtained permission to act as Johns primary care physician for the next six months. Although his blood test results were still at about half the levels they should have been, the iron pills seemed to be helping. Very slowly, his blood counts rose. Finally, his iron levels were high enough that the doctor was not afraid to biopsy Johns small intestine where some abnormal tissue had been seen previously. After constant worrying, crying, and praying, on June 26, we received diagnosis at long last. John had a relatively unknown condition called celiac sprue. This is an intolerance to gluten so severe that any consumption of gluten destroys the tissue in the small intestine that absorb nutrients such as iron, and, I found later, Vitamin B, Vitamin K, and folic acid. In short, not only was my husband anemic, he was malnourished. We were referred to a dietitian, and instructed to remove all gluten from Johns diet until further notice.I remembered from my cooking classes in seventh grade that in baking, gluten is the stuff that makes dough elastic. It holds the dough together and also helps it to rise. It is found in flour. So we eliminated all wheat products such as bread, English muffins, and pasta from our pantry.
It was a full month after diagnosis before we were able to see the dietician. She did have more information on gluten sources than the doctor did. But because Celiac Sprue is so rare and unheard of, all resources they gave us said to contact the Celiac Sprue Association, which is more of an authority because they specialize in gathering and spreading information specifically on the disease we had in question. My husband and I were somewhat shaken by how much the doctor and the dietician seemed not to know about the disease. In the short time between diagnosing John and notifying us, they were unable to find much information for us. However, the dietician gave us more information than the doctor did on where we might find hidden glutens in foods. The partial list was overwhelming. Gluten is not just found in wheat. It is in rye, barley, oats and other grains. It is in modified food starch, hydrolyzed vegetable proteins, monosodium glutamate, distilled white vinegar, malt, and flavorings. Because she was unsure of all of the hidden sources of gluten, this list was simply a starting point for us.
When we returned home, it was time again to purge the pantry. The rye breads and oatmeal we had purchased to substitute for wheat products were the first to go. Margarine, mayonnaise, mustard, most of our salad dressings, all of the canned soups we had, bouillon cubes, celery salt, garlic salt, granola bars, soy sauce, instant and flavored coffees, some kinds of cheese, beer, lunch meats, pancake mix, syrup, most cereal all had to be eliminated from our kitchen. When I realized how much of the foods in our kitchen had to go, I was mortified to think that so much of what we ate was harmful to my husband.
My first trip to the grocery store to replenish our bare cupboards proved to be another eye-opening experience. The hour and a half of label reading produced only $40 worth of groceries, and countless insecurities. I wondered how long it would be before my husband would heal, and if we could ever stop worrying so much about the small amounts of starch or flavoring or vinegar that was found in so many foods and condiments. I spent the next two weeks ignoring my schoolwork to focus on the new research project I assigned myself.
I soon discovered that although there is a lot of ambiguity regarding whether or not certain foods are truly sources of gluten, all sources agree on many basic points.
Celiac Disease, as I stated earlier, is a severe intolerance to gluten. When a celiac consumes gluten, the immune system reacts in such a way that the villi, the small hair-like lining of the small intestine that absorbs nutrients from food, are destroyed. The body cannot then digest and absorb essential nutrients. "Malabsorption also can deprive the brain, nervous system, bones, liver and other organs of nourishment and cause vitamin deficiencies that may lead to other illnesses" (When food becomes the enemy). Celiac Sprue is a hereditary disease, typically occurring in patients of northwestern European Descent. Onset can occur in childhood or later in life. "Pregnancy, severe stress, physical trauma, or a viral infection can trigger celiac disease in susceptible people for reasons that arent well-understood" (Celiac DiseaseWhen Food Becomes the Enemy). There is no cure for celiac disease, but by strictly avoiding all glutens in the diet, the nutritional deficiencies and intestinal damage can be eliminated.
Celiac Disease is an autoimmune disease, and often celiacs have other autoimmune diseases, including Dermatitis herpetiformis, thyroid disease, systemic lupus erythematosus, type 1 diabetes, liver disease, collagen vascular disease, rheumatoid arthritis, sjogrens syndrome, Graves disease, Addisons disease, scleroderma, chronic active epatitis, myasthenia gravis. "The connection between celiac and these diseases may be genetic" (Celiac Disease). Interestingly, " a gluten-free diet appears to have helped some individuals with autism, chronic fatigue syndrome, attention deficit disorder (ADD), and ADHD; though it is by no means a cure for any of these" (Adams).
The symptoms of people suffering from celiac disease vary widely. Sometimes people who have the disease show no outward symptoms, yet they suffer internal damage. Common symptoms include: recurring abdominal bloating and pain; diarrhea; constipation; weight loss; pale, foul-smelling stool; any problem associated with vitamin deficiencies; anemia; gas; bone pain; behavior changes; muscle cramps; fatigue; weakness; delayed growth; failure to thrive in infants; pain in the joints; seizures; tingling numbness in the legs (from nerve damage); pale sores inside the mouth, called aphthus ulcers; painful skin rash, called dermatitis herpetiformis [this is another disease caused by gluten intolerance, some sources consider it to be a symptom of celiac sprue, others believe it is a separate but related disease]; tooth discoloration or loss of enamel; missed menstrual periods (often because of excessive weight loss); abnormal or impaired skin sensation, tingling in fingers and toes, inability to concentrate. "Reactions to ingestion of gluten can be immediate, or delayed for weeks or even months. The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease" (Adams).
Considering all of the related diseases and the variety of symptoms, it is no surprise that celiac disease is so often mis-diagnosed. Add to that the fact that in the United States, Celiac Sprue has long been considered a tropical or third world disease. Canada and Europe have long been aware of the disease and treating patients. It is "the most common genetic disease in Europe. In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease" (Celiac Disease). In recent years, the medical profession in the United States has begun to realize that its commonality may have an impact on the American population. "A recent study in which random blood sample from the Red Cross were tested for celiac disease suggests that as many as 1 in every 250 Americans may have it" (Celiac Disease). This news is hopeful to me because it means that as more is learned about the disease, more information and more acceptable foods will become more accessible.
In general, most sources agree about the disease itselfthe origin, symptoms, and related diseases. Much of the ambiguity I found in my research was in regard to other sources of gluten. This is due to the fact that in the United States, very little scientific research has been conducted to determine whether or not certain grains contain gluten. The studies done have been clinical, and tested reactions celiacs had to various foods that were thought to have gluten. Because of the diversity of reactions among celiacs, I tend to agree with the theory that it is better to be safe than sorry. Any ingredient that seems to be in dispute among sources, I consider to be dangerous. Among these ingredients are oats, buckwheat, alcoholic beverages, and distilled white vinegar. Oats are questionable because some celiacs have negative responses to them and others do not. Although buckwheat is closer related to rhubarb than to wheat, a few celiacs had symptoms recur after consumption. With regard to the alcohol and vinegar, many people believe that in the distillation process any traces of gluten are removed because the gluten proteins are large enough to filter out. Others argue, again, that patients have a recurrence of symptoms after consumption. These disputes will not be settled until further testing is conducted.
My largest lesson since my husbands diagnosis has been that even though I am relatively adjusted to new constraints in the kitchen (which actually are not so limiting since now that I know the foods I stock are safe), I must always, always continue to read labels. Last week for Thanksgiving, my husband and I decided to stay at our own home and spend the day together. I was nervous and excited to make my first turkey, dressing (with gluten-free bread crumbs), and gravy form scratch. The day before I had made a precise schedule in my head for when to start each item on our menu so that the whole meal would be ready at the same time. When I pulled the thawed turkey breast out of the refrigerator to find out if there was a cavity to stuff, or if I had to do the dressing in my crock pot, I read the packaging before I took it off. To preserve the flavor, the turkey had been enhanced with, among other things, modified food starch, one of the most emphasized no-nos on the list. I was devastated. Certain that I had ruined our first Thanksgiving at our own home, I checked my on-line resources and discovered that Albertsons brand turkey is gluten-free and completely safe. We made a quick run to the grocery store, and saved Thanksgiving after all.The initial impact of learning that John has this disease was great. Even now as I continue my research and see the potential damage to his body and overall health, I become so frightened that I stop reading about it for several days. But I have also learned that with a commitment to an acceptable diet, the damage can be minimized and symptoms eliminated. I have learned how to make bread without gluten, pumpkin pie without sugar or gluten, and am looking forward to more experimenting to find delicious, safe treats for my husband and me to share. But at the same time, I learned that I must never allow myself to stay within a cocoon of safety. I must always continue to read labels when I buy foods, because manufacturers my change ingredients with any batch, or at any time without notice. And, most importantly, I learned again the same lesson that my life teaches me continually: I cannot take anything for granted.
Adams, Scott. "Frequently Asked Questions About Celiac Disease & the
Gluten-Free Diet." Celiac.com. 1995-1999.
"Celiac Disease." 13 Jul. 1999. National Digestive Diseases Information
Clearinghouse. National Institute of
"Celiac DiseaseWhen food becomes the enemy." 23 Oct. 1998. MayoClinic
Health. Mayo Foundation for