My health questions – very few answers.
So, many of you might know that I’ve been struggling with some health issues for a couple of months now. I wasn’t going to write this post until I was certain of a diagnosis, but that’s looking more and more distant at the moment. Here’s what we know so far:
In mid-February I began to have digestive problems – I had to get up urgently to use the restroom about 3-4 times per night. I wasn’t sleeping well and was easily fatigued. These problems persisted every day and I could count only two different times from February to mid-March where I didn’t have to urgently get to the bathroom, if you catch my drift. I was super tired, cloud-headed and pretty unhappy about it.
Figuring I just had some sort of parasite, I continued to work and maintain my regular schedule as best I could. Despite my low energy levels I attempted to ride the Tour de Cure in Sahuarita – needless to say, it was not a success. My doctor would later explain that with the constant digestive issues, I was most certainly suffering from malabsorption (and as a result, malnutrition) and that a 100km bike ride was, in his words, “a stupid thing to attempt”. A number of blood and fecal tests all came out negative for all sorts of cancers, parasites and other disorders. I was certainly frustrated that we seemed to be no closer to a diagnosis.
After coming down with Strep in early March, I decided to make another trip to my doctor. He reviewed my tests again and found that there was an abnormality – my anti-gliadin antibody count (specifically my IgG) was really high – a hallmark of Celiac Disease. The doctor advised me to start a gluten-free diet immediately and he referred me to a Gastroenterologist for further diagnosis.From Wikipedia:
Celiac disease is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. Symptoms include chronic diarrhea, failure to thrive (in children), and fatigue, but these may be absent, and symptoms in other organ systems have been described. Celiac disease is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat, and similar proteins found in the crops of the tribe Triticeae (which includes other common grains such as barley and rye). Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the small-bowel tissue, causing an inflammatory reaction. That leads to a truncating of the villi lining the small intestine (called villous atrophy). This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption. The only known effective treatment is a lifelong gluten-free diet. While the disease is caused by a reaction to wheat proteins, it is not the same as wheat allergy.
A diet without gluten is going to be a challenge for me. No more breads, cookies, pastas, cakes, (most) soups, beer, and a great deal of other things that have wheat in them. There are a lot of restaurants that are doing well to accommodate these kinds of diets. but it’s still a big challenge.
Once I began the gluten-free diet, my symptoms improved within a week. I felt better, my clarity improved and I was a little less easily fatigued. I visited Dr. Gottlieb at Desert Sun Gastroenterology and he gave me two options – either undergo a gluten challenge for several weeks and submit to an upper-GI biopsy or genetic blood screen. The upper-GI biopsy would look for damaged villi in the digestive tract (the “gold standard” test for an accurate Celiac diagnosis). The genetic blood screen would rank my results on a 1-to-8 scale. If I ranked a 5 or higher, Dr. Gottlieb would be comfortable with a Celiac diagnosis. I figured, “okay. Soon we’ll know what’s happening to me”. Unfortunately, I wasn’t so fortunate.
My ranking would be less than a “1” on that scale. Faced with the possibility that my gluten-free diet and decline of symptoms was merely a coincidence, Kerri and I went to Cheesecake Factory the other night to have what was possibly my final meal with gluten and my symptoms, while milder, have returned. So, what does this mean?
– I do not have Celiac disease.
– I get sick whenever I eat bread products (or some unknown ingredient that does not present itself in gluten-free food).
– Gluten-free bread tastes like shit.
So I still don’t know what’s happening. I plan on returning to Dr. Gottlieb to figure out what’s happening. Even if it’s just a gluten intolerance, I’d like a diagnosis to move forward. I’d prefer the certainty of a diagnosis to the nebulous possibilities that can present with the same symptoms. But for now, I’ll just stick to my gluten-free diet.