4 replies to this topic

[pricklypear1971]

I'm just tossing this out there, you DH'ers will understand why.

Took my son to a Pediatric GI yesterday. He reviewed his labs (showing two sets of negative celiac blood tests) and we discussed our concerns about son's gi troubles.

I told him we were having him tested because of a lifetime of issues, and I was recently dx'ed Celiac.

He listened and then asked me a few questions about my dx process. I told him it was complicated, that I have dh (and that's what lead me down the Celiac path). I ended up telling him I was never biopsied (skin), or scoped, or given blood work. He understood my doctors failed to catch it, and I had the steroid use that would interfere with testing, and my dx was basically process of elimination and reaction to gluten-free and iodine (rash).

I then showed him pics of my rash (iphone). He did NOT say "that's not dh!". He accepted everything I told him. So, I had a doctor (who is familiar enough with Celiac he's starting a study about Celiacs going back on gluten - no, I did not volunteer) not pooh-pah my rash as DH.

Not much, but a step in the right direction.

And yes, son had abdominal xray (constipation) and a third Celiac panel (doc wanted to run it at a different lab just to see if it differs). Endoscopy in the next few weeks to look for any abnormalities, including Celiac.

[ciamarie]

Thanks for sharing. I hope they / you get your son's issues sorted out soon, too!

[jlaw]

Nice to have little glimmers of what should actually be normal!

[squirmingitch]

I second that emotion!

[Jackson]

Congrats on having a doctor who listens.