I found out I have celiac disease 4 years ago, but my symptoms started long ago. Hearing the stories about me, I knew I had it as a baby. My parents told me I was colic, for example. At 3, I was diagnosed with juvenile arthritis and had to have surgery and cortisone treatment. I also know that I had a lot of rashes and constant ear infections, with my dad taking me to the emergency room at least twice a year just to get me on penicillin and out of pain.
In my teens I started developing vitiligo, an autoimmune disease that makes you develop un-pigmented patches. My parents didn’t take me to a specialist; we had relatives with the disease, so it was accepted, never talked about and considered something that people “just get.” When I was 18, I went to the doctor because I wanted to find out if there was anything I could do, but the doctor told me there were not really any options other than transplanting skin, which seemed too invasive. I never suffered too much from the disease, as I’m Nordic and quite pale.
Also in my teens I started developing severe stomach pains, which became worse in my 20s. I went to the doctor, who told me it was IBS and gave me soluble fibers to help decrease the diarrhea and bloating I was suffering from. It didn’t help, but I got used to living with the pain. At times I also vomited after eating, and I remember that I couldn’t really understand why I did that. I’m not sure if it was psychological or physical even today, but I had anxiety and stress around eating.
I somehow lived with this and the constant fatigue I was now having. I was always a calm person although I was doing a lot of sports, but at university I took a lot of naps since I had a flexible schedule. Every time I had my health checked and a blood test was done they told me I was anemic and that I had a little higher than normal level of white blood cells, but doctors always said that I had just had an infection or I was stressed. I was wondering why I got that result every time, but I felt that no doctors listened to me when I complained about my symptoms. I also moved around a lot, so I always had different doctors. Some commented on my vitiligo but never took it further.
As I started working around age 25, I no longer had energy to do much else but work. As soon as I came home I always took a nap because I was so exhausted. I was often sick, feeling like I had the flu, and every time I was sick I had diarrhea and vomiting and my body was aching. Thankfully I was a good and efficient worker, so my managers did not complain even though I averaged about 1 sick day a month.
Around 28, I had a stressful year and I had the stomach flu multiple times. One time I went back to work although I was still feeling tired, and I fainted in the subway. I had to go to the hospital to get stitches! I was sick and tired, and tired of being sick!
Through my own research and realizing that vitiligo was an autoimmune disease, I started reading everything about it. I went on a paleo diet, and then on a low carb high fat diet, which is basically the same. After a couple of days, I felt great, and I couldn’t believe the energy I had!
I read stories about people who had vitiligo and found the connection with gluten. I immediately went to the doctor and demanded a test. The general practitioner I had at that point was not too happy when I started talking about autoimmune diseases because he didn’t see the connection. Since then, I have also been diagnosed with Hashimoto’s, which explains a lot of my symptoms. Right after I stopped eating gluten, I had two terrible bursts of hives, but it never came back again.
I sometimes get upset that my celiac disease wasn’t detected when I was a child because it would have prevented so many of my issues, but I am glad that at 30 I’m finally healthy and have the energy that I always envied in other people! I don’t think I can describe the feeling I have now compared to how I used to feel. I feel alive!