<<Disclaimer: Verify this information before applying it to your situation.>>
Hi Listies-
This came from Becky, Celiac list, a very short time ago:
<<Does anyone have any experience with bowel cancer secondary to a celiac
diagnosis?>>
This came from the Carcinoid (Cancer) Listserv sometime this weekend:
<<Wondering if anyone has experience with other immune system diseases
as they relate to carcinoid. The 2 that come to mind are psoriasis and
celiac sprue.>> <<Celiac Sprue...... ....supposedly can contribute to
gastrointestinal cancersif undiagnosed long enough, but I can't find
anymention of carcinoid specifically. Anyone elsefamiliar with celiac
disease?>>
My reply to the Carcinoid List (today, 3/11):
I am not the Noid in the family ("yet", with fingers securely crossed); my
mother is. She is 74, and lived deep in the Adirondacks for over 20 years.
Had GI symptoms, roundly ignored. She moved back down south to Connecticut
last year, and her APRN ran her through the battery of tests just because of
her age, discovering a terminal ileum carcinoid. At surgery it was found to
be widespread, from retroperitineum to duodenum. "We got it all", and "she'll
never have a problem with it again" was all we got from the surgeons. She
took that as gospel. She's been in deep denial, but is now coming around to
admit this should be treated seriously and we are talking about going to see
Dr Warner for a consult.
I was diagnosed with Celiac Sprue as the docs were working me up to make sure
my symptoms were not Carcinoid-related. I was immediately put on a
gluten-free diet, with good results (This is great news; I'd been told I had
Lupus, and now I'm holding onto a distant hope that the Lupus diagnosis might
fade into the past). Mother had her Celiac Disease/ Sprue bloodwork drawn a
few weeks ago; it takes an unusually long time for the results, which I hope
to see by the end of this week. Mom's family has a history of diabetes and
arthritis, but no other diagnosed Sprue - yet. Nobody else in her family has
had any form of cancer at all.
As in this Carcinoid post the Celiacs have been wondering the same thing
about auto-immune related syndromes. I "belong" to both lists, and Mom & I
seem to be the ones with the diagnoses already in place and the workups in
the works, which seems almost serendipitous...... but where do we go from
here? I'll forward this post to the Celiac list, and let's see what our many
brilliant minds working together can come up with.
The Carcinoid Cancer Foundation, Inc. http://www.carcinoid.org
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OK, folks; anyone else with a similar situation or researching along the
same track?
Kathy G. Hubbell
[log in to unmask]
Middletown, CT
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