No one wants to be a celiac. Consider the evidence: To date, there have been no popular game shows called “Who Wants to Be a Celiac?” Magazine covers do not catch the eye with titles blaring “Lose More Weight than You Ever Thought Possible – Six Tips for Becoming Gluten Intolerant.” Young children do not answer the question, “What do you want to be when you grow up?” with “I want to be a celiac.” Without conducting a formal scientific poll, it seems safe to conclude that having celiac disease ranks fairly low in popularity.
The unpopularity of being gluten intolerant is glaringly evident in the reluctance of our relatives to be tested for it. Those of us who have experienced improved health as a result of adhering to a gluten-free diet see family members suffering symptoms similar to ones we had, and we want them to experience the same renewal of health we obtained.
Too often, however, they respond apathetically or even negatively to our suggestions that they be tested. We hear statements such as, “I couldn’t have celiac disease. I’m not as sick as you were.” At that, we wonder why someone would not try to avoid becoming as sick as we were before we were diagnosed.
When a relative emphatically declares, “Even if I found out I did have celiac disease, I wouldn’t go on that diet,” we argue within ourselves that if the person had gangrene, he or she wouldn’t hesitate to undergo whatever treatment was required.
When a family member accuses, “You just want me to be a celiac,” we suspect that what the person is really thinking about us is, “Misery likes company.” Do we really have cause to be concerned, or should we put aside our concerns?
Because celiac disease is a genetically-linked condition, the tendency for it runs in families. In 2003, after screening more than 13,000 people in 32 states, Dr. Alessio Fasano of the University of Maryland Center for Celiac Research estimated that one out of every 133 Americans suffered from celiac disease. However, the study found the occurrence to be six times higher among first-degree relatives – parents, children, and siblings – of celiacs.
Three years later, having considered the results of additional studies, the American Gastroenterological Association (AGA) summarized in a technical review that “relatives of patients with celiac disease are at a higher risk for celiac disease than those in the general population. Based on studies, with relatively complete biopsy confirmation, the prevalence is close to 10% but may be higher.”
In families with more than one person with celiac disease or dermatitis herpetiformis, the incidence was greater still. While second-degree relatives of celiacs – aunts, uncles, grandparents, grandchildren, and half-siblings – enjoyed a lower occurrence of celiac disease than first-degree relatives, the prevalence was still more than that of the general public.
Statistics show that relatives of celiacs are, in fact, at greater risk for having celiac disease.
Regardless of the statistics and sometimes in spite of having symptoms, there are people who avoid being tested for gluten sensitivity because a positive test result would obligate them to adopt a gluten-free diet. For some of these people, the policy of “ignorance is bliss” could come with a steep price.
Celiac disease typically results in damage to intestinal villi which are responsible for producing digestive enzymes and absorbing nutrients. When villi are damaged, malabsorption can occur, resulting in various vitamin and mineral deficiencies, anemia, and in children, stunted growth and dental enamel defects.
Untreated celiac disease may result in bone disorders such as osteomalacia (softening of the bone) and osteoporosis, neurological conditions such as peripheral neuropathy and ataxia, and fertility disorders such as infertility and miscarriage.
Though far less common, various cancers, primarily of the digestive system, may develop as complications of untreated celiac disease.
A person who is considered at risk for having celiac disease but who avoids being tested for it needs to understand that having the test will not give him or her the disease, and more importantly, that not being tested will not prevent having the disease.
It is also possible a person’s aversion to a gluten-free diet could be mitigated if he or she were shown the similarity between a celiac eating gluten free in order to prevent complications of celiac disease and a diabetic eating a controlled diet in order to lessen the possibility of complications due to diabetes.
Several groups of medical experts have written guidelines outlining groups of people who should be tested for celiac disease. The American Gastroenterological Association, in its 2006 “AGA Institute Medical Position Statement on the Diagnosis and Management of Celiac Disease,” states,
“It is the position of the American Gastroenterological Association (AGA) Institute that testing for celiac disease should be considered in symptomatic individuals who are at particularly high risk. These include those with unexplained IDA [iron deficiency anemia], a premature onset of osteoporosis, Down syndrome, unexplained elevations in liver transaminase levels, primary biliary cirrhosis, and autoimmune hepatitis. Situations in which testing for celiac disease should be selectively considered during the medical evaluation, especially if symptoms that could be the result of celiac disease are present, include type 1 diabetes mellitus, autoimmune thyroid disease, Sjögren’s syndrome, unexplained recurrent fetal loss, unexplained delayed puberty, selective IgA deficiency, irritable bowel syndrome, Turner’s syndrome, peripheral neuropathy, cerebellar ataxia, and recurrent migraine, as well as children with short stature and first- and second-degree relatives of patients with celiac disease.”
The “National Institutes of Health Consensus Statement on Celiac Disease,” published in 2004, has a similar list of individuals who are at higher risk for celiac disease. The list includes first- and second-degree relatives of celiacs. The NIH Consensus recommendation for at-risk individuals is, “Symptomatic individuals in these populations should be tested for celiac disease.”
Our concern for family members of celiacs is, therefore, not without foundation, especially for those individuals who have symptoms which may be consistent with celiac disease.
Fortunately, there are reputable sources having information that is readily available for us to use in helping family members learn the facts about celiac disease.
The Mayo Clinic and the University of Chicago Celiac Disease Center have Web sites that offer information that is easy to understand and print. The Mayo Clinic address is http://www.mayoclinic.org/celiac-disease/. The University of Chicago Celiac Disease Center address is http://www.celiacdisease.net/; the FactSheets are located at the tab for “Celiac 101.”
The University of California at San Diego Wm. K. Warren Medical Research Center for Celiac Disease has a 90-minute video called “What You Need to Know About Celiac Disease.” There is a link on the UCSD Center’s Web page for viewing the video online. The address for the UCSD Center for Celiac Disease is http://celiaccenter.ucsd.edu/communitylecture.shtml.
Once a relative decides to request that his or her doctor do a screening blood test for celiac disease, it may be helpful to print out the “AGA Institute Medical Position Statement on the Diagnosis and Management of Celiac Disease” to take to the doctor. This article is technical and not particularly reader-friendly for a lay person, but it may help to explain the patient’s motivation in requesting the screening test. The article can be obtained online at http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS0016508506022268.pdf.
Because of the restrictive diet that is the only current treatment available, celiac disease is not apt to win any popularity contests. However, ignoring celiac disease can have serious consequences.
We can help our family members by alerting them to the fact that relatives of celiacs are considered by medical professionals to be at increased risk of having the disease.
If a family member is tested and the results are negative (The person does not have celiac disease.), it is likely that he will be quite happy. If the results are positive (The individual has celiac disease.) he is probably not going to be thrilled. In fact, if it is your child who is diagnosed, he may blame you for passing on the gene. Tell him those were the only genes you had at the time.
University of Maryland Medical Center, “University of Maryland Study Shows Celiac Disease is More Prevalent in U.S. than Previously Thought,” http://www.umm.edu/news/releases/celiac_study.htm
“American Gastroenterological Association (AGA) Institute Technical Review on the Diagnosis and Management of Celiac Disease,” http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850602227X.pdf
Mayo Clinic.org, “Celiac Disease,” http://www.mayoclinic.org/celiac-disease/
NIH Consensus Development Program, “National Institutes of Health Consensus Development conference Statement,” http://consensus.nih.gov/2004/2004CeliacDisease118html.htm
“AGA institute Medical Position Statement on the Diagnosis and Management of Celiac Disease,” http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS0016508506022268.pdf