What to ask the Gastro at first appointment?

[JenniK]

Hi all, 

My gastro appt just got moved up a couple months due to a last minute cancellation. Now i feel unprepared. Help? 

I saw a gastro a couple years ago who listened to all my symptoms and told me to consider myself celiac and no real need to go through the endoscopy because “you have celiac”. This was a relief at the time but questionable advice in hindsight. Almost immediately afterward, he left that practice which makes me think that he just didnt want new business there…) 

Two years on (strict gluten-free) and i have what seems to be a intestinal ulcer, months of bloating and gas, so my dr referred me back to a new Gastro. ( H pylori test was negative but i wonder if false negative bc that is main cause of ulcers. ?) i had an immediate joint pain reaction to the Pepcid and had to quit it after a couple weeks, but it was helping. 
 

Like you all, i I have realized i often need to point drs in the right direction, but i feel at a loss as to ask/ hope for from gastro this time. I feel pretty certain that he will schedule an endoscopy this time. What i feel torn about it whether i should gluten challenge again if i will have an endoscopy for the ulcer anyway. I guess they also need to rule out intestinal cancer at this point since h pylori was negative. It seems like a waste not to have them look for gluten damage if i am to undergo the procedure anyway, but then again, to go through the reactions is a lot. I would definitely love to do it and have him say no evidence of celiac though!

Opinions? advice? 

[Scott Adams]

I am sorry to hear about your ulcer, and ongoing symptoms. Has your diet been 100% gluten-free? Do you eat out at restaurants. If so, you may still be getting trace amounts in your diet.

To be retested:

 

[JenniK]

I very very rarely eat in restaurants. If I do, it is steak and potatoes. I cook most of my foods (no gluten-free frozen pizza, etc) I do not eat much factory made gluten-free food except sometimes potato chips and chex cereal, yogurts, peanut butter and nestle chocolate chips to make homemade cookies. Otherwise it is meat, vegetables, fruit and cheese. 

i do share a kitchen with gluten eaters, but they have one certain counter space for gluten foods. I have my own marked butter, peanut butter, etc…

I guess the endoscopy would be to see what is causing the pain and presumed ulcers. It is very different than my former IBS-like- gluten pain.

[Scott Adams]

I would definitely clarify with your gastro exactly what testing will be done during the procedure. If you want them to check for celiac disease and do a gluten challenge, be sure to discuss this with them.