Comments on: Misdiagnosing Has To Stop

By: melt

melt — Thu, 21 Jul 2011 02:42:04 +0000

50. Thanks , I have recently been looking for info about this subject for a while and yours is the best I have found out till now. But, what about the conclusion? Are you sure concerning the source?

By: Tina Turbin

Tina Turbin — Wed, 25 Nov 2009 00:37:11 +0000

Katie,

we will stay in touch and next year I have something very exciting planned with my team of help and the moms, families and doctors connecting up. Stay tuned.

L, Tina

By: Tina Turbin

Tina Turbin — Wed, 25 Nov 2009 00:35:47 +0000

Tina,

I am in Idaho—and yes, I am a full-time, homeschooling mom I’m jealous
you will get to speak with Dr. Green. I saw an interview he did with CNN and was
really impressed with his views of Celiac in the USA.

I am VERY interested in being part of anything to do with raising awareness
about Celiac, raising awareness IN the Celiac community and especially in
making moves or changes that help ALL of us—-and not just the Celiac’s
that fit in that nice neat box of symptoms and Biopsy diagnosis. No
offense, but the whole picture of Celiac needs to be presented to Dr.s and
organizations and new guidelines for not only diagnosis need to be adopted
that includes ranges of symptoms and response to the GF diet—-but this
also needs to extend to food manufacturers that think it is okay to let a
little bit of gluten in GF foods. I hear in Australia they have real, 100%
GF foods that have 0 Gluten in them—and then a Gluten-Lite designation for
foods that have up to let’s say 20ppm gluten. This makes me really mad, as
our own FDA with Celiac Dr.’s support is going ot allow up to 20ppm gluten
in GF foods.

So if there is anything I can do to be a mover and shaker in this—-I’m in!

Katie

By: Katie

Katie — Sat, 21 Nov 2009 17:07:23 +0000

Tina,
Our plans are to keep doing what we are doing, which is avoiding pretty much
all packaged GF foods, except for companies that are committed to making
sure their products are clean from planting to production! Obviously, our
GF results speak volumes all on their own. We used Enterolab, and the
results we got from them are the results we believe—that my husband,
daughter and I have a DQ8 gene and our son has a DQ1 gene. Even though the
mainstream Celiac research centers won’t recognize Dr. Fine’s testing and
results yet—we definitely, definitely have Celiac disease. Our daughter
started with Prometheus labs, and her results suggested that HLA testing
would tell us whether she actually had Celiac or not as her results were
consistent with Celiac. My husband’s Prometheus results were 100% negative
(according to them). But of course, Enterolab told a different
story—which eating Gluten Free clarified. I guess the thing that really
bothers me about the whole Biopsy is the Only True Diagnosis thing is that
my kids bleed profusely and spontaneously when they ingest gluten. It’s one
of the first hallmark symptoms of contamination, along with extreme
crankiness. Dr. Fasano actually said he had never heard of this, except
after months and months of contamination! My friend whose kids react the
EXACT SAME WAY to gluten (which is how we became friends in the first place)
just shook her head. It seems even the Celiac Docs don’t want to really
listen.

So—sorry to barf all over you here. But I feel a LARGE part of the
misdiagnosis and no-diagnosis is the fact that there is SO little
communication among perhaps Dr.s and patients as far as TRUE modern-day,
industrialized world symptoms. Dr. Green says that the presentation in
America is so NOT emaciation and diarrhea and this is a big reason Dr’s are
missing it—-there is such a spectrum of symptoms. Apparently, Dr. Fine
will be presenting what he needs to to get his test validated in December.
If this proves to be what he needs to do to impress the Egos that Be in the
Medical Community—then my Mother in Law recent comment about our
ridiculous test where we “shit in a box and send it off to Texas” will be
eaten by HER!

Katie

By: katie b

katie b — Sat, 14 Nov 2009 01:09:54 +0000

I agree—and I am so glad there is a project to get the attention of Govt and hopefully more doctors. Part of the misdiagnosis is due in part to the unreliability of blood tests and the “old” standard of the biopsy. Tests like Enterolab (and I have no affiliation with them) need to be taken seriously by medical personnel. My family does have Celiac per Enterolab—-and taking gluten out of our diets was an almost overnight miracle in relieving symptoms. But a recent phone conversation with Dr. Fasano in which I said we had Celiac per Enterolab and his response that that is not a valid test so we don’t have a ‘real’ diagnosis was disheartening….to say the least. More inclusive standards for diagnosis, along with more sensitive comprehensive testing AND Dr.’s accepting that there is a Spectrum of Celiac/Gluten Intolerance the same as Autism Spectrum—-and we will be making impressive progress in this country regarding diagnosis!

Thanks for a great blog

Katie

By: uberVU - social comments

uberVU - social comments — Thu, 12 Nov 2009 17:20:16 +0000

Social comments and analytics for this post…

This post was mentioned on Twitter by GreekPrincess74: Misdiagnosing Has To Stop | Gluten Free Help http://bit.ly/2vhto6…

By: Wendy

Wendy — Wed, 11 Nov 2009 20:25:39 +0000

What a truly important subject this is! I really enjoy all your work in furthering this cause.

By: Lizzie

Lizzie — Tue, 10 Nov 2009 21:21:12 +0000

I watched this interview and couldn’t BELIEVE how widespread this disease is. So glad you are providing GF advice and help! I’m not GF but my sister was just diagnosed with celiac disease and recently switched to a GF diet, and she made this AMAZING frittata for dinner and I was like, “Where did you get that???” She sent me the link to the recipes on your site and I can’t wait to try them! Thanks for everything you’re doing out there! Misdiagnosing really MUST end!

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Tue, 10 Nov 2009 09:48:39 +0000

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