In 2007, I was sick for pretty much the full year. Lost 15 pounds on an already slim frame. I (finally) went to the doctor and the very first thing I was tested for was celiac disease. It came back positive and an endoscopy confirmed it. Yep…I definitely had celiac disease. Easy…right? You get sick, you go to the doc, he tests you and you get your results.
Well, it was easy for me. Little did I know at the time, way, way, way too many people who are suffering haven’t had it so easy. And years later, they still don’t have a definitive celiac diagnosis that they long for. That’s one of the reasons I started the Doctor Horror Stories page on this site; to let people know that they are not alone and there are indeed way too many crappy medical professionals out there and to keep searching until you find the answers you are looking for.
I received the below email yesterday from someone who is beyond frustrated. She feels cheated. She vented. I’m sharing.
Dear Gluten Dude,
I feel cheated…. in so many ways.
It was two years ago when I started having pains in my ribs and pain on my side when lying down. I was tired, my knees started hurting, and my hips started clicking and hurting. I was so tired. I couldn’t move in the morning. I couldn’t think. I couldn’t find words. I was 30 years old. I thought, I just popped out two babies, it must be that. I was 113lbs. Underweight for my 5’6″ frame. I weighed more in the 8th grade. I thought it was because I was breastfeeding and my babies were hungry. I told my dr about my rib pain. She told me it was probably positional from breastfeeding. I told her I was tired. She said, well, you have two babies. It made sense, sort of.
My labs came back normal. My ribs continued to hurt. My side continued to hurt. I started to look pregnant at night after I ate dinner. I was not pregnant … yet.
Then I got pregnant with my third child. At 10 weeks, I had a miscarriage for no apparent reason.
I went to my OBGYN. Maybe it’s my ovaries giving me all this pain? She said… definitely your bowel. But offered no help.
I went back to a different doctor. My rib pain was getting worse. He said, “I really think it’s gastritis, you’re stressed…. moving, two babies, a miscarriage, you’re stressed” I started omeprazole. It seemed to help. Then it didn’t.
I woke up in the middle of the night. Twice. I thought I was dying. Maybe a heart attack, but I knew it couldn’t be. I’m so young. I thought I should go to the ER, but my husband couldn’t bother to stay awake, and we have super crappy insurance.
I couldn’t eat. I couldn’t sleep. No one cared.
I went to a gastroenterologist. I had been diagnosed with IBS 10 years prior due to excessive diarrhea with no findings on a colonoscopy. I asked to be tested for celiac. He said, “you’re not having diarrhea now, just constipation. You have IBS.” I was sent home with more acid reducers. He started me on a FODMAP diet, told me to google it.
I started. At first with a little gluten, then without. I started feeling so much better. I had been so constipated, even though I went daily, I just couldn’t seem to move it out. Now things were moving. My rib pain went from extreme to just hurting. I could eat some food. If I ate gluten, I couldn’t poop for a few days. I wondered if it was just a coincidence.
I went to a new doctor. He said he would test for celiac. I was already on a GF diet for 6 months. It came back borderline. He said it was negative. He told me I had functional dyspepsia. I still had days where the pain was so bad I could not eat anything. He ordered an ultrasound. They found a polyp in my gallbladder, but that it was not the source of my pain.
I tried every drug that has ever been used on stomach ailments. FDguard, IBguard, oregano oil, cinnamon oil, simethicone, docusate, magnesium, flax, turmeric, levsin, omeprazole, zantac, dexilant, prilosec, Pepzin GI, peppermint capsule, probiotics……
I found a new doctor. She was different. She said, it could be celiac, but it’s hard to say without eating gluten. I would not. It hurt too much. It had been a year GF. My knees and hips no longer hurt. My tingling in my toes didn’t happen as much. While still in pain, I could eat a little. She encouraged me to try no dairy. I told her I was going to take gluten out of my house.
After a few weeks, I was actually not hurting during the day. Every time someone would bring bread into my house, my kids would eat PB&J happily. The pain would come back.
I thought, maybe I’m crazy. Is this a weird coincidence? Could it really be the gluten?
My new doctor wanted a colonoscopy and upper endoscopy. I finally got one last week. I’ve been GF for 1.5 years. They found abnormal cells in my small intestine. She told me to remove all gluten sources from my house, “your cells showed gluten sensitivity, but not necessarily celiac” I also had an adenomatous polyp removed from my transverse colon. She said had I not had a colonoscopy, it’s likely I would have had a tumor in 10 years.
I don’t know how much more strict I can get with gluten. I feel cheated. Do I have celiac? What is, likely celiac? Celiac is for life. What is likely celiac, but not necessarily? Is it possible that my cells are healing, so they aren’t showing the full blown celiac? I’ve been GF for so long.
I feel overwhelmed. I’m already so careful about gluten. I think I’ll have to eliminate my weekly dinners with friends, as I know it is very likely a contaminated source. There are only two restaurants I go to regularly, but likely contaminated…. goodbye.
Am I celiac? Am I not? My family thinks I’m crazy. My mom tries to accomodate a little, but no one else takes it seriously. They think I’m a hypochondriac.
I feel cheated on my my diagnosis. Cheated that it took so long. Cheated that it’s not a very clear answer. Cheated that I am super sensitive to gluten. Cheated that I’ll never be able to eat pizza again. Real pizza, with real yeasty gluteny dough. Cheated that I can’t go out with friends and not be that weird friend. Cheated that I come off like a jerk when people offer me a cookie and I say no… and then, no, really, I really can’t. Cheated that I can’t eat dairy. I love dairy. I used to love to bake, and cook. Now it’s not the same. I feels like such a chore. Cheated that I have so many other food allergies. That EVERYTHING seems to hurt me. There’s no joy in eating right now.
I’m going to get a copy of the pathology report. See what it says about those cells. If I have celiac, I want to be able to tell people with confidence. Right now, I feel like it might still be in my head, even if it’s not.
Thanks for letting me vent.
Thanks for your website.
I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner.
Positive energy brings positive results.
Don’t you feel better already??