Location Of Pain/discomfort...relevant To Diagnosis?

[birdie22]

I'm posting this in the "pre-diagnosis" forum because I'm curious on other's thoughts/opinions on something my doctor told me. As you can see in my signature, I'm sero-negative and diagnosed as NCGS. When my doc gave me that diagnosis she said that because my discomfort is epigastric that indicates "some other reaction" to gluten and not Celiac because with Celiac pain/discomfort is usually intestinal (lower in the stomach). I'm interested in hearing what you all think about that statement.

One of my symptoms is an incredibly uncomfortable bloating/pressure in the epigastric region (between my breastbone and navel). I originally thought I had a hiatal hernia. Though my entire belly gets distended the discomfort is only felt in this area. Sometimes the amount of pressure there makes me feel nauseous. I feel like that scene in Alien when the alien is coming out of the human body. It's like something is trying to push it's way out. I'm guessing this is a build up of gas because I get relief from gas-x/phazyme products.

[pricklypear1971]

I think your doctor is behind on his/her reading.

Good lord, celiac disease can cause joint pain and neuro issues without any intestinal issues so why the heck can't a swollen belly be celiac disease? Sheesh.

And btw I get the same kind of thing - wrenching stomach pain and gas, followed by days of acid stomach. And while not dx'ed by blood/biopsy (too many steroids in the mix) there's no doubt that my issues are celiac disease not NCGI. My ND thinks so (grudgingly - she hoped for NCGI but the rash and lack of vitamins/minerals rather sealed the deal).

[mushroom]

So many of our posters describe pain right below the ribcage. I don't know where your doctor got her notions from, but experience on this forum tells me she is wrong.

[birdie22]

Thanks for the opinions. I appreciate it. I'm tempted to seek a GI consult. I'm not interested in going back on gluten for a scope but would be interested in a GI opinion of my symptoms and would even consider a scope knowing that my gluten-free diet could negate any biopsies for celiac.