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My name is Tiffany and I was diagnosed with Celiac disease when I was 43 years old. When I was 40, I was diagnosed with Shingles, which progressed to a complication called Postherpetic Neuralgia, which is a severely painful condition where you think you are death’s door but it actually can’t kill you. However, over 90% of patients with it report they considered suicide at some point. I never did that, but I certainly didn’t think I could be expected to live with such debilitating pain, hence I thought I was dying.
Luckily a close friend suggested I see her neurologist because the narcotics I was given could not touch the nerve pain I had. I saw her neurologist and he saved my life by putting me on a controversial drug that had only recently been approved for my condition. It worked and in less than three months I was back to my old self, or so I thought. During my ordeal, I researched Shingles and knew it didn’t typically affect people my age who were seemingly healthy. It did however affect younger people (under 60) if they had an autoimmune disease. I asked the neurologist about this and he said that was something to consider only if the drug didn’t work. I now believe I got Shingles because I already had Celiac disease. After my Shingles incident, I suffered from terrible fatigue and after seeing three different doctors to figure out why, my new dermatologist finally thought to test my iron level and I was diagnosed with iron deficiency anemia. So now I knew what was wrong and daily iron therapy would bring my energy level back up. The iron did help initially and I felt like I was on the road to recovery. I increased my intake of iron rich foods, took an iron pill every day and eventually was told to go off the pills to see if my iron levels could maintain. They did not hold and in six weeks I was back to square one. By this time I was worried. I started researching what causes anemia and that led me to be screened for both ovarian and colon cancers. Thankfully, I had neither condition. The gastroenterologist that performed my colonoscopy had previously run a full Celiac panel blood test on me without telling me (this was before I learned to get copies of all my test results), told me that one of the markers on the blood work, the tTg, came back positive for Celiac disease. He then informed me it was a very rare disease, affecting only those with Irish/Scottish heritage and wrote down the term ‘Celiac Sprue’ on a piece of paper for me. When I researched Celiac disease on medical websites, I quickly realized the doctor didn’t know as much about the condition as I did from reading about it online for an hour. I set off to find a new, better-informed doctor. Since anemia is a blood disorder I sought the help of a hematologist, one that was so popular there was a five-week wait to see him. This guy had my Celiac panel blood test results from the other doctor but said it’s probably a fluke since I don’t have intestinal distress issues, and therefore can’t possibly have Celiac disease. We then discussed my monthly cycles which were light for twenty years, so I already knew that wasn’t the problem. This doctor could not come up with an answer as to why I was anemic so he finally said that I should wait about 15 years and go through menopause and I would not be anemic after that. I could barely find my car in the parking deck after realizing that I had waited so long to see this ‘specialist’ who apparently didn’t know as much about Celiac disease as I did, or anemia for that matter. Another month passed before I was able to see my third specialist. This time it was another gastroenterologist who had actually diagnosed a friend of mine with Celiac disease so I assumed he would be knowledgeable about the condition. Never assume anything. He seemed to think I was a hypochondriac and was not happy to see that I had a folder containing previous test results and info on Celiac disease with me. Doctors do not like it when patients come in prepared, just in case you don’t know that yet. As soon as I said I did not have typical symptoms Celiac but did have some occasional bloating, stomach cramps and nausea when eating, the doctors eyes glazed over. He told me about drugs he recommends for those things. I told him that I was interested in finding out why I had all these odd things going on along with the anemia and I wanted an endoscopy to look for evidence of Celiac disease. He told me that not only did I not need an endoscopy, but there was no way I had Celiac disease. I was so tired of looking for a doctor who would listen by this point that I felt I had to manipulate this one into doing the test I needed so I would not have to wait any longer for an answer. I persuaded the guy to perform the endoscopy. Two weeks later I had the test and was told I’d have the results in a week. It turned out that I almost had to threaten a lawsuit to get my results but finally the doctor called to tell me I had a classic case of Celiac disease. Doctors don’t like to be wrong. Then this guy did something that could be considered malpractice but I’m not the type to sue. He actually told me that since I didn’t have the bad symptoms typically associated with Celiac disease, the dilemma now is whether or not he should prescribe the gluten-free diet to me. Though I had a hard time believing he’d just said what he said, I kept my composure and asked if maybe I would eventually get bad symptoms if I continued to consume gluten. He said that I probably would so therefore I should start the diet right away. He told me I could still eat rice, potatoes and corn and promptly hung up. He did not give me a referral to a nutritionist or even a Celiac disease website. Luckily I already knew a lot about the diet by this point. My Mother and sister were both tested for Celiac via blood work but only my mother tested positive. We can trace Mother’s first symptoms back at least 18 years. If I had not been diagnosed with Celiac, she would still be poisoning herself unknowingly every day of her life. My Mother did not deserve to feel badly for so long. No one does and that’s why I’m on a mission to tell everyone I can about Celiac disease. If we wait for the medical community to do that for us, we’ll be waiting a very long time indeed. Knowledge about Celiac disease here in the US is lacking greatly. It is easier for Celiacs to eat out safely in Europe than here at home. That is unacceptable to me but I believe we can affect change in our society if we all do our part to get the word out about Celiac. |
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