What to expect/ ask for at first GI appt tomorrow?

[JenniK]

Hi all, 

I have been challenging for five weeks now and first GI is tomorrow. I have had a return of so many symptoms which I had actually forgotten that I had after 2 years gluten-free.  I do want to find out what’s wrong, especially for the sake of my three sons, if what I have is genetic. But I am ready to go back to gluten-free. I’m already worried that the GI is going to want me to continue gluten for weeks or months more before making a diagnosis, further tests. Honestly, I am not sure that I want to prolong it like that since my whole body is so uncomfortable. Then again, I’ve come this far, and something is clearly inflaming my entire system...

I want to go in to my appointment prepared and educated. Advice, comments on what I am thinking, please.

i want to have the blood tests redone tomorrow. My GP ran them when i first flared with mouthful of canker sores, only a couple days into gluten challenge. I would like the see the comparison after 5 weeks.

My sons’ pediatrician, who after 20 years of always being right about everything with my three sons, said that I should insist on the genetic testing because ... (well, let me insert here that when i was discussing with him, my youngest son has a brain concussion and we had just finished checking his recovery progress from the brain trauma, so my worried, overwhelmed MomBrain was not getting everything.) i THINK he said  the endoscopy is pointless without the genes; i THINK he said that the endoscopy is also pointless without biopsy— is that right?

Since I have flared in so many symptoms which cannot be placebo effect because I had forgotten that I had them before, i dont even know if i want to continue to eat it to wait for weeks or months for an endoscopy. (basically, I remembered the diarrhea and the nerve pain, and was expecting those, but not the body pain, general fatigue, hands that barely open in the morning, popping joints, blurry vision, distended belly, and major water weight gain, sore tonsils, canker sores, back acne, and the strangest: a double ear infection which i have never had in my life.)

I don’t even know what I am asking exactly, except, knowing what you know, what should I insist on checking at the appt, what falls under, ‘worth it to keep checking’ or ‘you know enough to go gluten-free again’ ? 

 

 

[Scott Adams]

More and more celiac disease is being diagnosed with blood tests only, which are very accurate if a full blood panel is done:

It's possible you won't need an endoscopy at all, so get the blood test results and feel free to share them with us. 

Why not also follow your doctor's advice and get the genetic test as well? This could be done at the same time.