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Cynthia's Story


My journey to being diagnosed with celiac disease has been a long and winding road. As a teenager, I had gut pain and bloating. I was hospitalized at age 15 with a high white blood count and gut pain, but they never found anything wrong with me. As an adult, I had frequent bouts of bloating and gas, but it ran in the family so I didn't think anything of it.

When I was 47, I was at my family doctor's office, and they were giving free scans for osteoporosis. I figured, why not? Surprisingly, the doctor found I had osteoporosis but was perplexed about why I had it so young. He treated me just for the disease and did not go beyond that to determine what other diseases can cause or are related to osteoporosis.

Around that same time, I began suffering from depression, anxiety and severe panic attacks. I saw a psychiatrist and was put on antidepressants. Again, nobody connected the dots to determine if other diseases were the cause or related to my mental illness.

By the time I was 53, I was exhausted all the time. I slept 10 to 12 hours every night and still felt tired. I had headaches all the time. I had sores on my tongue and thin paper-like cuts in the corners of my mouth. I found out later that these sores and cuts were due to lack of nutrition.  I looked terrible. I was very thin. I attributed this to my depression, chronic pain from a prior car accident, and working long hours. I was still taking antidepressants. I started having diarrhea and told my psychiatrist. She told me it was a side effect from my medication. Then I began having bowel incontinence--in other words, if I felt the urge to go the bathroom, I had to go right then. I couldn't hold it in for very long.

Since I was 53, I decided to have a colonoscopy, purely for preventative maintenance, thinking nothing of my GI symptoms at the time. The doctor asked me if I had any symptoms. I told him about the diarrhea and bloating as well as a pain that I described as being kicked in the upper gut or a tender, bruised feeling. I discovered the kicked-in-the gut pain when I worked in a doctor's office and pulled heavy patient charts from the file cabinet, thrusting them against my upper body.

Following the colonoscopy, the gastroenterologist gave me a blood test that was off the charts for celiac disease. To confirm the diagnosis, I had an endoscopy that demonstrated damage to the villi of my small intestine. At my follow up visit, I remember the doctor telling me about celiac disease, that I couldn't eat gluten ever again. I had never heard of the disease. I didn't know what gluten was. My mind was in a total fog. I had no idea what impact this would have on my life. The doctor gave me an antiquated handout about a gluten-free diet and sent me on my way.

I went to the grocery store to find gluten-free food and spent 3 hours reading the fine print on everything. It was exasperating and overwhelming. I later realized that buying "fresh, naked" food was my best bet.

I'll skip the part that every celiac knows - the social repercussions, the frustration of dining out at restaurants and friends' houses, explaining that what you have is not an allergy, but an autoimmune disorder, etc.

Let's move forward 2 years, after I was diagnosed. I was still not feeling well. In fact, I had a severe episode of depression one year after I was diagnosed with celiac disease. I still had gut pain and was going to the bathroom a lot. I had strictly adhered to my gluten-free diet. I didn't know what was wrong and thought I had refractory celiac disease - celiac disease that can recur despite being on a gluten-free diet. I saw my GI specialist, told him my symptoms, and he ordered another colonoscopy. During the procedure, he took biopsies of my large intestine and found that I have collagenous colitis (also known as microscopic colitis). This type of colitis is not well known, but is strongly associated with celiac disease. Collagenous colitis was discovered in Sweden in the early 1970s. The treatment? For bad flare-ups, I take steroids.

About a year later, I was still having problems - the bloating, abdominal pain, etc. I returned to my GI specialist, thinking I had chronic colitis flare-ups, but he diagnosed me with a spastic colon, otherwise known as irritable bowel syndrome (IBS). He prescribed a muscle relaxant for my gut, but the side effects outweighed the benefits, so I chose not to take the medication.

As you can see, celiac disease has such an effect on your body and can cause so many other illnesses. Don't travel that long journey like I did. Be aware of your constellation of symptoms. Don't treat just one of them independently. Make certain your primary care physician and other specialists you see communicate with one another about your total health picture.

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