Anecdotal But Interesting: Doctor Reviewed My Rash
Posted 09 October 2012 - 11:54 AM
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.
Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND.
Responsive to iodine withdrawal for DH (see quote, above).
Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Posted 09 October 2012 - 12:26 PM
Posted 09 October 2012 - 09:58 PM
Posted 10 October 2012 - 05:12 AM
Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012
Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.
Sept. 2013 adding back dairy in small quantities & thus trialing iodine
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