So What Questions Should I Be Asking....

[mommy2krj]

We go see the GI doc today for the results from the endoscopy/biopsy. The nurse has already told me that it was negative for Celiac but there was evidence of gastritis. To continue the miralax and omeprazole.

 

So. I plan on asking about gastritis and Celiac as what I've read they can go together.

 

I plan on asking about NCGS and trying to figure out basically anything that can solve these stomach issues he's had! I want this resolved, not simply treated.....though I understand that Celiac is an ongoing issue that can take years to resolve....I don't want to just treat for something like reflux when he has not ever shown signs or symptoms (apparently with the exception of the gastritis) of having reflux and the omeprazole has already been tried and didn't do anything to take care of any of the symptoms.

 

Are there any other questions I should ask? Any concerns I should bring up? I plan on writing down a list so that I can actually cover these things. Oh and I plan on getting a copy of the blood work as he and my husband's are the only ones I don't have.

[stanleymonkey]

First thing I would ask is how many samples they took. They intestines are long if they took a small amount they likely would have missed damage. I would also ask to see the pathology report for yourself

[mommy2krj]

Thanks.....I knew there was something else besides a copy of the blood work that I wanted to get but I couldn't remember what it was!

[nvsmom]

You might ask if you could have his nutrient levels tested. Celiacs and those with NCGS are often low in calcium, potassium, iron, ferritin, B12, D, zinc, and (I think) folate.

 

Perhaps ask if he has a positive response to the gluten-free diet, if he would be willing to diagnose your son with NCGS (for future school accommodations and such).

 

Good luck!

[mommy2krj]

We pretty much got the diagnosis. Due to the scalloping and the fact that he's still having stomach issues. Or at least we do for the next 3.5 months as a trial to see if being gluten free helps. Also took another batch of blood as she is running the EMA IgA or IgG and the genetic tests.

So...we have some answers....we shall see if they are the right ones. And a binder full of information I haven't gone through yet.

Thanks for all the advice!

Oh and I got his blood work results and the pathology report from the endoscopy/biopsies....but I haven't read through any of that yet, either.