Surprising Ways Celiac Disease Can Manifest Itself

People often tell me stories of how they suffered for years and I used to think about how fortunate I was that my anemia diagnosis led to my celiac diagnosis ten months later. As it turned out, my road to a diagnosis was much more involved than that. The year before I found out about the anemia, I was diagnosed with Shingles. The problem was that I was not in the age group of people who have that condition. Therefore it was misdiagnosed as a muscle spasm and then as hives from the spasm medication. By the time my husband drove me to the third doctor’s visit (in ten days), someone finally figured out I had Shingles. Since the condition requires treatment within three days, mine had already progressed to something called postherpetic neuralgia.

Several years ago David Letterman was out of work for weeks for a case of Shingles. It was later reported that he had PostherpeticNeuralgia. The thing about this condition that many people don’t know is that it is so painful you don’t think you’ll live. The pain is so severe that you just assume you are not long for this world. My case is no different than the average person with the condition. I could not sleep, eat or even think during the episode. The pain overtakes your life every second of every day in ways no one who hasn’t experienced it can imagine. Narcotic drugs do not begin to touch the pain of this type of pain. Luckily for me, a dear friend of mine suggested I see a neurologist when the doctors threw several narcotics at me and said that’s all they could do for me. They might as well been giving me candy. The specialist I was referred to specialized in treating people with postherpeticneuralgia. He gave me a strong anti seizure medication called Neuronton, which you step up on until you get less than pleasant side effects. That is when you know you’ve reached the limit of this medication for your body. Eventually, if you’re lucky, you become pain free and begin the process of stepping down off the medication.

By the end of the first week on the medication, I felt that I would live. Dateline NBC did a story the very night that I finally started coming back to life, about how the maker of the drug lost the biggest class action lawsuit against a drug company. The suit was founded around the illegal practice of off label use of the medication. Some people with a bi-polar disorder that were given the medication committed suicide. My husband told me to stop taking the meds and I told him if I didn’t make it to get in on the lawsuit.

After my Shingles episode was finally over, after about four months, I assumed it was a fluke that I got a condition that only people 50 and over got. It turns out that people under 50 with auto-immune conditions also get Shingles, which I remember reading and not thinking much about during the episode. When I finally had my celiac diagnosis, and learned that is in fact, an auto-immune condition, the pieces all fell into place. There is now a vaccine for Shingles that is for people 60 and older.

If you ever know anyone that is diagnosed with Shingles who is under 50, please let them know the chance they have an auto-immune condition of some kind is extremely high. They might not have celiac and there is no study showing a connection between the two conditions. In hindsight, had I taken what my neurologist said to me more seriously, I might have been diagnosed with celiac earlier. I specifically inquired about the possibility of me having an auto-immune condition. He said that we’d only worry about that if I did not respond to the meds. Since I responded well to them, it was never discussed again.

Even though I really had a short road to my celiac diagnosis, and feel very fortunate about that, for over four months during my plight, I was not a fully functioning human being. In fact, I was like a living zombie. It simply should not be so hard to get tested for and diagnosed with celiac disease in this country. The NIH started a campaign to educate doctors in the U.S. about celiac in 2006. Over three and a half years later, it seems that their big campaign consisted of publishing some information about celiac disease in a gastroenterologist journal. The problem with that is that the front line of defense should be primary care doctors. People with celiac who have depression as a symptom – or migraines – are not going to be sent to consult with a gastroenterologist. Dentists need to be educated about celiac disease as well. The goal of the NIH program was to get an additional 500,000 people in the U.S. diagnosed with celiac disease in five years. If the agency plans to meet that goal, they better step up their game now.