I have an appointment in a few days with a new doctor who seems willing to finally test me for celiac, after 37 years of increasing symptoms. I'm glad to have finally found someone who seems willing to take my concerns seriously, but I've had such bad experiences in that past that I don't know what I'll do if she turns out to be another doctor who won't listen. I've prepared everything I can think of to bring to the appointment - a chronological list of the many symptoms that have worsened over the years, factsheets from multiple prominent celiac research centers, scholarly article abstracts, etc. Any suggestions for what else I can say or do to get her to listen?
My symptoms are way too many to list briefly, but here are the most bothersome ones:
- Horrible, itchy rashes since age 6, often over large areas of my body.They ooze yellow/clear fluid and bleed when I scratch. I was told it was eczema, then stress, then contact dermatitis. But no creams, relaxation techniques, or perfume-and-dye free detergents/soaps/shampoos have helped.
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Diarrhea 4-6 times per day since early teens, along with nausea after meals and extreme fatigue. Doctor did one stool test for parasites (negative) and concluded I was fine. When there was no improvement after a year, I went back several more times. Doctor reminded me of "The Boy Who Cried Wolf" and said that if I kept coming back with the same complaint, she wasn't going to be able to believe anything I told her. She said I was lucky to have such a fast metabolism that I could eat whatever I wanted and never gain weight. On the fifth or sixth visit, she essentially threatened me by saying that if I came back complaining of diarrhea again, she'd make me get a colonoscopy that would be "extremely unpleasant" and would involve "shoving something up my butt". She also implied that my parents would be upset at having to pay for the procedure when she knew there was nothing wrong with me. I didn't go to a doctor for years after that.
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Awful insomnia for the last 20+ years. Sleep study ruled out obvious causes, through my brain waves showed very little deep sleep waves (which they couldn't explain). Medications did not help.
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Terrible SI joint pain that did not respond to physical therapy, acupuncture, massage, or cortisone shots.
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Increasingly bizarre neurological symptoms - walking into doorframes, falling down stairs, hand cramps, trouble with buttons and coordination, forgetting names of people I've known for decades. Neurologists found nothing wrong and said it was from stress.
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Internal shaking for the last five years, extreme nausea much of the time, and soaking several shirts and blankets per night with sweat. Repeated negative tests for diabetes and thyroid problems. Again, I was told it was from stress. When I pointed out that it's just as bad on vacation, or at times of my life when everything is going perfectly well, doctors said that stress can come from good things too, and that even being happy with my job is a form of stress! No matter what I say, I can't win. Previous doctor wouldn't test me for celiac because she said that I would have died in childhood if I'd had untreated celiac (which I know isn't accurate), and the most I insisted that something was really wrong, the more convinced she became that I was irrational.
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Clear response to a 12-day strict gluten-free trial - exhaustion for the first few days, then felt better than I ever have in my life, then became violently ill upon reintroducing gluten.
This last bit is what got a new doctor to finally agree to meet with me to talk about celiac testing. I feel awful but I've continued eating some gluten every day since then because I really need accurate test results. I simply can't handle larger amounts, but I'm worried that I'm not eating enough for it to show up, and that my doctor will stop pursuing this if tests are negative.
Obviously, I'm going to stop eating gluten immediately once the tests are over (regardless of the results), but a diagnosis is crucial because my daughter is having similar symptoms, and her own doctor keeps telling us she's just an anxious child and won't test her either. So there is a lot riding on this appointment, and I'm getting more and more nervous as it gets closer. Any advice would be most appreciated! Sorry this is so long.
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