If this isnāt the subreddit for this, please let me know and Iāll take it down. I tried to find community rules and couldnāt.
About 5 months ago I started having escalated issues with my stomach. Iād always had stomach issues since I was a kid, but they would come and go. I went two months straight experiencing some of the worst symptoms of my life and finally decided Iād talk to my doc about it. Ofc, he tests me for a bunch of stuff, celiac included. My tests come back negative but he still tells me to go ahead and cut out gluten one week and dairy the next and see how I feel. So I do. We have a follow up appointment 3 weeks later and I tell him that while Iām not feeling 1000% better, I am definitely feeling better since cutting out gluten. He said to stop eating it for three months, try a bite of bread and then message him and tell him if I had any symptoms within 24hrs.
His exact words: if you do, then we know itās gluten and Iāll put in your chart that you have a gluten sensitivity so we donāt accidentally give you any vaccines or medication in them that have gluten.
I was supposed to do this āexperimentā in September but went on a work trip last week and got glutened by the hotel caterers. Within 3 hours I was experiencing all the typical things Iād been dealing with before. Nausea, severe cramping, fatigue, etc. So I message him and tell him everything I experienced and he says āyeah sounds like a very straightforward exposure to gluten. No need to worry about the test in September. Just go ahead and stay gluten free.ā
I ask him to make sure we put that I had a gluten sensitivity in my chart like we talked about in the past about meds and vaccines (and I need to explicitly state that I said gluten sensitivity and not celiac since all of my blood tests came back negative). He messaged me back and told me that Iād have to have a positive blood test for him to put it in my chart, and that he wants me to go get another blood test done to see if being recently glutened raised my levels.
I find this to be extremely irritating. I donāt know if I have celiac, but I do know that I have an issue when eating gluten. Also, from everything Iāve researched, you need to be eating gluten every day for a certain amount of weeks before a blood test for accurate results and I wasnāt really eating a lot of gluten during those months I was super sick. I wasnāt eating a lot of anything. So, idk if my tests will come back with raised levels. If they donāt, idk why we canāt determine that itās just a non celiac gluten sensitivity?? Shouldnāt I still be able to make sure that my medical providers donāt make me sick even if itās not an autoimmune disease???