You probably have #celiac but whatever …

By | September 29, 2015

That is pretty much what I felt was the attitude of the first GI doc that I saw. I asked for an appointment to see this doc because I could see him sooner than the celiac specialist, but also because I wanted to get some information before going to see the specialist. I wanted to see what the diagnosis process was going to entail in the other system.

The doctor seemed to know less about celiac then I did! I brought in my various test results. He didn’t seem to know what to make of the dermatitis herpetiformis results. He saw my Antibody blood test and said it was high. That I probably have celiac. That I should ‘look it up on the Internet’!

I came prepared with questions. Mostly they went unanswered.

I asked about a referral for a dietician/nutritionist for the gluten free diet. He said they only had dietician for diabetes and that I should just ‘Google ingredients’ to see if they had gluten.

When I asked about what deficiencies I might have, he mentioned B12. I said I had some tests in March, so he looked it up and said my B12 was fine.

When I mentioned that I’m worried about osteoporosis, he commented that I should probably take a calcium supplement.

When I asked about the benefits of getting the biopsy diagnosis versus not, he pretty much said it made no difference.  What is worse is that when I mentioned acid reflux, which I’ve been treated for on and off for the last 20 years, he said that I needed an endoscopy to make sure I don’t have esophageal cancer.

So, I left the office no further along in the diagnosis path. I left feeling like the GI doc knew less about the disease then I did. I have an endoscopy booked. He mentioned that I might want to eat gluten a day or two before the endoscopy. When I looked up the gluten challenge protocol, it says two weeks, not two days!

When explaining the procedure, he mentioned being put to sleep for the 10 minute procedure. General anesthetic for 10 minutes seems like an extreme option. The way he described the procedure, I felt like I was being talked down too. Like it was nothing to be concerned about. Like the interruption in my life was not worth consideration.

I’m going to cancel the endoscopy because I do not trust that it will be done right. I don’t want to have to repeat it because the wrong things were done. I’m just glad that I’m in a place where I can see a special specialist – that is a GI doc that specialized in celiac. I have a much better appreciation for why 80% of celiacs go undiagnosed. If the way this GI doc treated me is anything like the norm, then I can see why people run away after their first appointment. Disappointed and lacking support. This is not an appropriate way to treat someone who is newly diagnosed (or undiagnosed) with a serious disease.

I’m not impressed!

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