I was diagnosed last month with celiac disease. When I really start to think back I realize celiac disease has been an issue since at least high school. I thought I was lactose intolerant. I would get sick and stop eating cereal with milk and feel better. I felt sick after eating things like pizza and pasta with cheese. I thought it was dairy. Around 10 years or so ago my mom was diagnosed with IBS. At the time my mom and I had the same doctor. We thought I had IBS.
Then I got pneumonia and had a massive allergic reaction to one of the medicines I was given. It affected my joints and since I had always had some problems with my wrist and joints I went to Mayo to check for things such as RA, lupus and other related joint diseases. Everything was negative. I don’t know for sure but I can only assume this auto-immune response was related to celiac disease.
Back then I had never even heard of celiac disease. I would have never thought I had it. I didn’t even know what gluten was. I knew wheat, rye and barley but I didn’t know about the gluten protein. I was active and tried to eat healthy but I didn’t know about macro nutrients. I would have never known to ask about celiac disease.
Even a few years ago when a friend was diagnosed I didn’t connect any of the dots in my history. I learned a lot about celiac disease and being gluten-free at the time but never applied it to me. Even though I could only drink one beer without getting too sick. Even though I didn’t eat bread with my lunch because it made me too tired for an afternoon at work. Even though I didn’t put my hamburgers or hot dogs on bread because I felt better when I didn’t. Yet I never thought that I had celiac disease. I still thought it was IBS.
I wish 10+ years ago celiac disease had been more prominent. I may have been able to be diagnosed sooner. I wish when I went to the doctor about five years ago that she hadn’t been so terrible. I had told her I thought I had IBS but my symptoms were really acting up. She didn’t understand how I could feel constipated yet have diarrhea. She either had no clue or didn’t believe me. She felt my stomach and dismissed my complaints. At this point I changed insurance at work to get away from the crappy doctors at the insurance clinic. For the next five or so years I only went to my ob-gyn because I was so upset with how I was treated under my old doctors. I had symptoms still but at times they wouldn’t be as bad. Then in October I had two instances that pushed me over the edge and made me sick for several months. I needed to find out what was wrong and how to fix it.
If it was IBS I thought I’d do an elimination diet to figure out my triggers. Well, it turned out to be something else, celiac disease. I have been eating gluten-free since March 15th and I feel so much better. And yes, I get upset about the limitations especially when eating out. It will take time for me to totally accept that aspect. At home it is no problem. I love fruits, veggies, meat and dairy but I wish I could just go out and eat anywhere. I hate the fact that I have to plan ahead and restaurants give me 4 or 5 choices in their 20 page menus. In time I am sure I will get over this. I am glad to have the fog lifted and not have a headache every day. I just wish I had found all this out sooner. I had some miserable days.
I encourage those who aren’t sure what is wrong with them to keep digging, keep asking and find a doctor who will listen. There may be something wrong; it might not be what you think it is. Doctors should explore everything. Don’t give up. It may take 10+ years but once you know what’s wrong and how to fix it you will feel better.