Celiac Disease: A Hidden Epidemic says that on average in the US it takes 9 years from the onset of symptoms to a diagnosis. I’m pretty sure it’s taken at least that long for me. Probably longer.
I have what would be termed silent celiac. I didn’t have the traditional intestinal symptoms of diarrhea, rapid weight loss, obvious malnutrition. If I had, I expect I would have been diagnosed a lot earlier. I had hormonal irregularities. The summer before I left for college, my father started having me tested to see why I had such irregular periods. They’d started when I was around 14 or so, but never regularized. I once skipped an entire year.
In college, I got sick. I had a truly miserable case of mono, and it knocked me on my ass in a way that my doctors couldn’t account for. I had to leave school so my parents could take care of me. My father taught my mom how to do a tracheotomy in case I stopped breathing. They had me on antibiotics and 100 mg of prednisone a day. And still I was in pain. And still my tonsils kept swelling up. Ultimately, I accidentally lanced my own tonsils. (You probably don’t want to know the details). Turns out I’d had an infection inside the tonsils themselves.
I never fully recovered from the mono. At least, that’s what everyone thought. I never got my energy back. I got regular upper respiratory infections – bronchitis at least twice a year, and eventually pneumonia. New Years day 2005, I got another infection and my tonsils swelled up. But this time, they never went down again. They stayed swollen. You know how when you’re spooning with your boyfriend (or girlfriend) and one of you ends up putting your arm underneath the other one’s neck and you can lie there like that for a while before the arm goes numb and one of you has to move? I couldn’t do that. If I rested my neck against my boyfriend’s arm, I choked.
Thanks to a needlessly complicated series of events, I didn’t get my tonsils out until December 14th of that same year. The day immediately after I handed in grades and was done with the semester. Initially, my ENT had been opposed to taking out my tonsils, saying that it was excruciatingly painful for adults and he almost never recommended it. Then he looked in my throat. “Oh, my god. When do you want them out?”
And you know, it was excruciatingly painful. And you know what else? It was nothing compared to what I went through every year with those stupid tonsils. The nurse showed me what my tonsils looked like, after surgery. Each one was the size of a golf ball.
The ENT reassured me that I’d start feeling better and recover my energy, now that the tonsils were out. He said they hadn’t functioned correctly since the mono (remember the infection inside the tonsils? that apparently breaks them permanently). He said I was having to fight infection constantly, which was why I was so tired.
I did feel better. But again, I didn’t recover my energy. I went to my doctor, and she ran a few blood tests. I was anemic. She put me on iron supplements, and that was it. When I came back saying I was still tired, she told me I was just depressed. No. Actually, she told my father I was just depressed. She never told me anything. Keep in mind, I was 28 then. It wasn’t even legal for her to tell him anything without my express permission. And I still haven’t forgiven her, because that ended up sowing the ground for what would become a constant conflict between my father and me every time I complained of fatigue.
It wasn’t until Fall of 2007, when, out of desperation, I went to see some nutritionists a friend had recommended, that anyone even considered celiac disease. They sat down with me and took a thorough family history, the first time any of my doctors had done that. You see, all of my doctors prior were colleagues of my father’s. I guess they figured they already knew the family history. Except he wouldn’t have ever mentioned his mother to them. Because he stopped speaking to her before I was born, and there was a great deal of anger and pain there. So it wasn’t until these nutritionists asked me about my grandparents that any doctor of mine knew that my grandmother had celiac disease. “No one’s tested you for celiac disease before?” they asked in disbelief.
Turns out, they thought all their patients had celiac disease. In my case, they just happened to be right. They didn’t, however, know the appropriate test protocols. So they did the antibody serum test and called that good. So I went on the elimination diet for six months, and I never went back on gluten. Until I decided to see a normal doctor and get retested. Because, really, if you’re going to commit to going gluten free for life, you’d better have a good reason to put yourself through that.
Long story slightly less long, I ended up back on gluten for three months in order to get the biopsy. I’m glad I did it, now. Because I like having the data, and because I’m far enough away from it now that I can forget how miserable it was. And I am very glad of finding my current doctors. Both my PCP and the Celiac Specialist.
So, if we consider that elevated prolactin the first sign, it took from 1996 to July 2010 for me to get diagnosed. 14 years. Nearly half my life. If we consider the mono as a potential trigger for the celiac disease, it took from 1998 until 2010. 12 years.