I was horrified when I looked in the full-length mirror and saw how thin I was. I forget why I was looking in the mirror while I was naked in the first place. I usually only looked it in to check my outfit, but that day, I was naked, and I was shocked. I immediately went to my mother and showed her. She took me to the doctor. I was diagnosed with anorexia. I insisted I wasn’t trying to lose weight. They assured me they believed me, that this was a different type of anorexia, that they knew it wasn’t intentional. If I’d only understood then what I understand now, I’d have recognized the bullshit.
I hadn’t thought about that in a long time, but I’ve been reading this book on Celiac Disease and it’s really opened my eyes to a lot of misdiagnoses in my past. As I read about eating disorders, this memory came flooding back to me. I remember being weighed; I was 89 pounds (and about 5’0″ tall.) I was told to drink high protein shakes. The nutritionist wanted me to gain 11 pounds in the next two weeks. I gained a lot, but not that much. I had to continue with the high protein shakes and eat more at every meal. She wanted me to eat more high calorie foods, too. That was my treatment.
Now I wonder how different my life might have been if they’d asked me questions about my health. Instead of assuming this underweight teenage girl was anorexic because she was underweight and a teenage girl, what if they’d probed more? What if they’d recognized my own fear – after all, I was the one who told my mother I needed to see a doctor to find out why I was so thin – and considered other options? What if, when I told them I sometimes skipped meals, they had let me explain why? (I tried to explain but they wouldn’t listen.) Maybe they would have learned about my digestive problems, about how often I was doubled over in pain, about how frequently I had diarrhea. Maybe it would have occurred to them that I wasn’t absorbing nutrients properly.
The doctor and nutritionist terrified me. I’d never had an eating disorder, and suddenly I became anxious about food for the first time in my life. They insisted I had to eat three meals every day. This meant that if I slept in and ate brunch at 11am, I needed to squeeze in another meal before dinner. In college, I would get out of bed early on Saturday to eat breakfast before heading to brunch with my friends an hour later. It didn’t stop the diarrhea, and it certainly made me worry about food constantly, but it did keep me from being quite so thin. I maintained a weight of around 100-105 for a long time. It was better, but still too low.
I don’t remember when my perspective changed, but it did. At 22 I insisted on seeing a gastroenterologist and was diagnosed with IBS for the first time. The appointment was 10 minutes long, with no physical examination, just a recital of my symptoms and then a diagnosis. I wasn’t told there was a diet to follow. I learned that on my own a year later when I accidentally found a pamphlet in a doctor’s waiting room. My first colonoscopy and endoscopy were years later. They ruled out Crohn’s disease and cancer. Then I was on my own again with the IBS diagnosis. I was still constantly sick. My next endoscopy with a different doctor didn’t give me any more information, but it changed the diagnosis to IBS, reflux, and some mystery ailment. The doctor said she wasn’t sure what it was, but that IBS and reflux alone didn’t explain my symptoms. Then she said she couldn’t do anything else for me. I have no idea if either endoscopy checked for Celiac. Maybe they did and the damage to my intestine wasn’t visible yet. Maybe they didn’t look.
It wasn’t until age 32 that I tried going gluten free. My primary care doctor didn’t want to test me for Celiac or send me to a nutritionist. I pushed on seeing a nutritionist and she gave me a referral to someone who was very nice but who, as it turned out, had absolutely no experience with gluten free diets. No wonder it took me another TWO AND A HALF YEARS to eliminate all of the gluten contamination in my diet!!!
I assume that I don’t have hidden gluten in my diet anymore because, for the first time in 20 years, I don’t have nausea, diarrhea, constipation, and abdominal pain on a regular basis! The feeling is miraculous and I am constantly thankful to be free of it all.
Still, I have to wonder, how might my life have been different if, instead of assuming that every underweight teenage girl was anorexic, that doctor had actually examined me and maybe figured out that I had Celiac Disease or gluten intolerance? (Note: I don’t know which I have because I was never tested and the only way to test for Celiac disease is to eat gluten again, which I can’t do. My doctor should have tested me before I started the diet.) Ok, gluten intolerance wasn’t known 20 years ago, but Celiac Disease was, and they never even considered it. For that, I may never forgive them. I’m just so grateful that I finally took things into my own hands, did my own research, and got better. And next month, for the first time ever, I’m seeing a Celiac specialist! I can hardly wait!
Posted by chronicrants 
it happened with my Celiac Disease. Of course, technically I haven’t been diagnosed with Celiac to this day….
Then there was another gastroenterologist. She did an endoscopy. I wonder if she checked for Celiac? I would hope so, but she never mentioned it. She said she was checking for reflux. She doesn’t practice any more and I haven’t had a chance to find her notes in my hundreds of pages of records. But I do remember her diagnosis: IBS and reflux, plus something else that she wasn’t sure of, but I shouldn’t be too worried. I’m not kidding! That’s what she said! She said that my symptoms could not be entirely explained by IBS and reflux so there had to be something else. I was sure I didn’t have reflux. My aunt and grandmother had it, and my symptoms weren’t anything like theirs. Still, I took the pills she prescribed. And I got worse. Sigh.
Chronic Rants 