gluten intolerance diagnosis

Diagnosis Difficulties

My stomach has hurt for a few days now and I haven’t seen the doctor, mostly because doctors never really seem to ever know what is ever going on…especially not the first visit, and I don’t have time for a bunch of tests. (who does?) Don’t get me wrong, doctors save lives and I wouldn’t want to step back even a year in the way of medical advances…thinking about living and giving birth just 50 years ago makes me shiver. But doctors could definitely learn to listen better and think deeper about the issues patients bring them…Such as gluten intolerance. My primary care physician was actually surprisingly open to my self diagnosis and ordered a blood test right away. At the time I hadn’t eaten wheat in a long time, though I still ate spelt (which I know is a wheat) and she advised me that even if the test comes back negative that if my body reacts badly to wheat, don’t eat it. As obvious as that sounds, I was really happy to hear she felt that way instead of assuming I’d made some wrong connection between what I ate and how I felt. The only reason I was having the test was because I suspected my son of similar issues and when looking into his health doctors always asked about the family history and I’d get disbelieving stares when I said I couldn’t eat wheat but had never been tested for intolerance. My test came back positive, meaning yes, gluten intolerant. She advised me to see a specific gastroenterologist to be tested for celiac, which turned out to be a very different experience. At that appointment he took one look at me and said,”you are not a celiac. Celiacs are fair and you are dark. You look lactose intolerant.” In my head I was saying,”um, OK. Aren’t many Italians celiacs?” But I could tell this was not a person with an open mind so I didn’t bother trying to get into a discussion with him. He did another test which came back negative~ no surprise considering he had already decided it would be! And he advised me not to have the scope test because, again, he said that a lot of people don’t do well with wheat and the only thing you can do for that is the same way you treat celiac anyway, which is to not eat wheat so it didn’t really matter. I still think it might be a good idea at some point, just to know for sure for my kids’ sake, but I will definitely go to a different doctor next time. It seems like everyone has a long story to tell about their gluten intolerance diagnoses, so I hope that it becomes far less of a mystery disease in the future.


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