Two years after my initial celiac diagnosis, I was still feeling like poop. My gastro ran a few extra tests and found nothing else wrong. Then he decided to re-scope me. Not to confirm that I actually had celiac disease. I did. But to see how my intestines were healing.
But what if you go to a new doc and he insists on re-testing you for celiac disease because he doubts the first tests were accurate.
We’ve all sadly had our share of doctor horror stories. Here’s another one to add to the list from a fellow celiac.
I am still having issues after being diagnosed with celiac disease two years ago and going gluten free. I know that it can take longer to get better and decided to see another gastroenterologist for a second opinion. I left the Doctors office with my head spinning. I brought all of my blood test results for the last year so he could see all my levels. He walked in the room and asked why I was there.
[Dude note: This drives me batty. In what other industry is this accepted? Can you imagine walking into a client’s office without first knowing why you are there?]
I told him because of my celiac and he said that my antibodies were perfect so I must be gluten free. I said yes and was ready to talk about everything. He never asked me my history or how I was currently feeling. The first thing he decided to do was another scope. I tried to show him the pictures of my first scope showing the damage to my intestines but he didn’t want to see it. I told him the the biopsies showed celiac and I had a genetic test that showed I have the gene. He told me he wanted to redo the gene test since I had it done two years ago. ???? I know that your genes don’t change. The tests costs $650 and he asked if I would pay for it. My insurance paid for it the first time.
I didn’t have a copy of the gene results and he wanted to see it. The office contacted my doctor and they sent a copy. He called me in his office and said that I only had a 2 for the gene and only had a moderate chance of developing the disease. He only sees people with a 7 or 8 (high chance of developing celiac). Since I had biopsies come back positive then I probably had celiac. ????
He then told me to “gluten up” for a week before my scope so they could send the samples to a different lab. I told him that gluten makes me sick. He told me to think about it. ????????
I left there and contacted a celiac dietitian that I see and she was floored by what he said and how he acted. He made me feel like it was all in my head. I went through years of being sick and told it was all in my head. I was relieved when I was diagnosed because I could finally let everyone know I wasn’t making it up.
The next day I called the office and cancelled everything and told them I won’t be back. They asked why and I told them at I won’t make myself sick for him and damage my intestines so he could be convinced. My husband called our insurance company to make sure they didn’t approve anything from his office and filed a complaint. The person that he talked to has a daughter with celiac and she couldn’t believe it.
In a way I am glad that I saw Dr. Nightmare because I will never let a doctor convince me it is all in my head.
Thanks for listening.
“It’s all in your head” is a phrase I have heard over and over again from my fellow celiacs. Makes me sad.
Look…there are tons of great docs out there. But there are also those with the god complex; who make you feel like they’re doing you a favor by seeing them; and “how dare you question my decisions?”
When I was a lad and dealt with a bit of acne (good times), I had a dermatologist who insisted on doing an injection in each pimple to get rid of them (at $10/injection). I said that I didn’t care about the ones I already had, I want to prevent future ones. He said he would no longer treat me then. Nice.
So if a doc wants to do a second endoscopy to see how you are healing, and you trust his/her instincts, I’m down with that. But when he’s convinced you may not have celiac, even though you’ve already been diagnosed, and he starts suggesting more test, you may want to que$tion where his motivation$ lie.