Life with Celiac Disease: Diagnosis and Implications

This is the first post in an ongoing series about life with celiac disease. This condition usually starts out with a puzzling array of symptoms that will worsen over time if a gluten free diet is not administered. For many celiacs, like so many people with chronic illness, the process of trying to figure out what is wrong takes years and results in much needless suffering.

I tried to write a brief overview of my experience from the onset of symptoms to my odd diagnosis story to my recovery, but it's too complicated to explain without devoting an entire post, and I don't want this blog to be just about me. Let me summarize in bullet points:

• Years of atypical, severe, unexplained, worsening, eventually debilitating symptoms
• The advice of various doctors caused much harm and never helped
• I cured myself by finally trying a quasi-elimination diet free of some of the most common dietary offenders for a few weeks. No doctor even brought this up as a possibility, though the worst that can happen is a few weeks' inconvenience.
• I was never officially diagnosed with the disease, though not due to the common situation in which a patient is already not eating gluten and will not go back so any testing results in a false negative (tests can only measure the response to gluten, so no gluten means no evidence of an abnormal response to it).
• Many people feel much better on a gluten free diet but most of them do not have celiac disease. Sometimes this matters because a person may have a condition that needs to be addressed by more than a gluten free diet or may have a curable sensitivity to gluten and need not commit to a life of going to great pains to avoid it.
• I still tested borderline positive while on a gluten free diet(!), which means my response was so severe that it took longer to go down than my doctor said was possible. That does not fit the technical specifications for a diagnosis but tells me that I clearly have the disease.

See? Even the bullet-pointed version is complicated. This difficult process is actually typical for celiac disease and many other common chronic conditions that are considered difficult to diagnose. Doctors are wonderful for many things, but they cannot have the same investment in solving your health difficulties as you can. Therefore we need to take active responsibility for our health and, for most of us, the biggest way we affect our health is through what we eat. Many of us who feel healthy now fail to make this a priority or only think of healthy eating in relation to weight management. I think this is a blight on our culture and we are paying for it with our long-term health.

Active responsibility, though, is not reliance on WebMD, Dr. Oz, the USDA, Dr. Weil, or other quacky or fad-driven sources rife with conflicting claims and shoddy logic. I am sorry to say that just because Oprah says something does not mean that actual facts of nature conform to her will. When the government agency promoting the expansion of American agriculture markets starts telling you what to eat because their panels voted on what is most nutritious, run the other way!

I often hear people complain that healthy eating is futile because what is considered healthy changes every couple of years. This, however, comes from relying on shoddy advice. There are many things we do know scientifically that simply have not permeated our culture (e.g. saturated fat and cholesterol consumption is not associated with cardiovascular disease or other negative health outcomes), but it is true that there is very much that we do not know about nutrition. Intellectual humility is necessary for us to be honest with ourselves. For those gaps in our knowledge, however, we have many thousands of years of human history to go on. Have superbly healthy people eaten the way you do for hundreds of years? In any ways that they have not, are your deviations supported by exhaustive scientific research? If you do not know, then aren't you gambling with your health?

Do you have or do you know anyone with celiac disease or a similar chronic health problem? Were there any issues with figuring out what was wrong?

Are you convinced that good nutrition is really important? Do you eat a truly healthy diet most of the time? If not, what challenges would you have to overcome to do so?