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Still Angry Sometimes After 2 Years


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#91 beebs

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Posted 30 November 2011 - 05:35 PM

And is it effective against DH?

I'm half dq2, half dq8. Wonder if it works on half genes?


Wouldn't it be which one of your genes was the one that was triggered, which they still can't tell can they? So if its your DQ8 it wouldn't work but if it was your DQ2 it would...Complicated!
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#92 pricklypear1971

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Posted 30 November 2011 - 05:41 PM

Wouldn't it be which one of your genes was the one that was triggered, which they still can't tell can they? So if its your DQ8 it wouldn't work but if it was your DQ2 it would...Complicated!


My dq2 is clearer, does that make sense? The dq8 is a translated gene.

I still wonder about the dh, and neuro issues...and does it stop the autoimmune cascade?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

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!

#93 Katrala

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Posted 30 November 2011 - 05:46 PM

My concern with a vaccine would be that they are only looking at resolution of GI symptoms.


From my understanding, the goal of the vaccine is to make it so the body no longer attacks itself (the lining) when gluten is present.

Saying that celiac affects 1% of the population makes me say "ARRRGH!" One percent is diagnosed but everything I've read says it's probably more like 10 to 30%.


Which studies mention this percentage as an estimate for celiac disease?
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Positive Celiac (Blood & Biopsy) - April 2011
Peanut Allergy

#94 saintmaybe

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Posted 30 November 2011 - 06:55 PM

It sounds like the vaccine is developed on an antiquated or limited understanding of the spectrum of celiac and gluten intolerant symptoms. Perhaps.

If it stops the body from attacking itself, in whatever capacity, in response to gluten, great! If it's only addressing the intestinal response, well, that's not so helpful for the thousands of us whose primary and *first* symptoms were neurological or "Other", even if we did go on to develop more traditional symptoms of the disease.
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#95 beebs

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Posted 30 November 2011 - 07:31 PM

If you read up about it, it says that it is dealing with the immune response. Says nothing about the type of symptoms, but that it is similar to what they do to desensitise people who are allergic to things.
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#96 saintmaybe

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Posted 30 November 2011 - 07:43 PM

If you read up about it, it says that it is dealing with the immune response. Says nothing about the type of symptoms, but that it is similar to what they do to desensitise people who are allergic to things.



Eh, I'm not holding my breath. Phase II is a long way from Phase IV, or on the market. Lots of products stall out in III or IV. Let alone getting through the FDA approval process here in the U.S. which is fraught with politics.

Aside from all of which, it sounds like a weekly injection. Thanks but no thanks. I'm not giving the pharmaceutical industry one more red cent than I absolutely have to for something that seems very intrusive and time consuming. Since I can just...not eat gluten, I'm gonna go do that.
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#97 pricklypear1971

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Posted 30 November 2011 - 07:53 PM

This is why I ask....

http://www.celiac.co...ease/Page1.html

I assume it would help with DH (iga is an autoimmune reaction).
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Apparently there is nothing that cannot happen today. ~ Mark Twain

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!

#98 beebs

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Posted 30 November 2011 - 08:39 PM

Wow - what an interesting read prickly - especially about the 53% who felt better on the diet with no elevated anitbodies or gut damage! I know gluten intolerance is very real -but that means it is very very, common also!

I would feel much the same saintmaybe - re the vaccine, if I could guarantee that I never got glutened again :) Does sound invasive and its a fair while off - but it still gives me hope!
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HLA DQ8, gluten-free since January 2011

#99 ravenwoodglass

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Posted 01 December 2011 - 03:42 AM

Aside from all of which, it sounds like a weekly injection. Thanks but no thanks. I'm not giving the pharmaceutical industry one more red cent than I absolutely have to for something that seems very intrusive and time consuming. Since I can just...not eat gluten, I'm gonna go do that.


But think of all the $$$$$$ the pharm companies could make off this!!!! Would kind of make up for all the money they lose when we go on the diet. They lost thousands off me alone in the last 9 years since I no longer have to take the 5 different and very expensive meds that I had to take before diagnosis just to get painfully through the day.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


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