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Member Since 26 Jan 2010
Offline Last Active Private

Posts I've Made

In Topic: Test Interpretation?

Today, 08:25 AM

Just got genetic testing fm Mayo.  Allergy blood tests done yrs ago showed I was allergic to glutens, so I went gluten-free then.  After that, osteporosis doc was looking for why I got osteoporosis at an early age, he found antibodies.  GI doc did endoscopy, which was okay, he said maybe b/c I had been gluten-free so long (although he had me start on gluten about 6 weeks prior to the test).  My niece was just diagnosed 6 months ago.  New GI dr. ran following...  DQ Alpha 1  01:02, 05:01    DQ Alpha 2  02:01, 06:02  Celiac gene pairs present?  Yes.  I'm thinking these are postive results, right?



Do you mean the test the gynecologist ran?



I am getting confused.  Maybe start over?  Why would the GI put you on a gluten challenge if you were diagnosed years ago?  Did he run any blood work after you were eating gluten?  If you had been gluten free for years - the Celiac blood work shouldn't have been positive (the one the OB?GYN ran?).  



You may want to get a copy of all your medical records to see if you were actually tested for Celiac or not.  It sounds like you probably have it but a genetic test only tells you that you are 1 of the 30% of people with a gene that could be activated at some time (but for most, will not be activated as only about 1% of the population have Celiac Disease).

In Topic: Restaurants Won't Allow Any Outside Food

Yesterday, 09:07 PM



 The ADA will allow you to bring your own gluten-free food to places where safe food won't be available. Professional mediators helped to decide a case in New Hampshire involving a tour train operator that refused to allow a passenger with food allergies to bring her own food. Ultimately, the tour train operator revised its policies to make them more accommodating to people with allergies.




I would bet that cake wouldn't be a medically necessary food.  I would also think that a train is a different circumstance than a restaurant.  You are stuck on the train with no option to leave or go elsewhere for food.  Obviously, this person 3 years ago did not NEED cake nor was limited to one location for food.

In Topic: Restaurants Won't Allow Any Outside Food

Yesterday, 08:59 PM

Allowing outside food as a disability accommodation is reasonable and required under the Americans with Disabilities Act.


Of course the restaurant can attempt to use an alternate accommodation like getting a gluten free cake on their own.


ADA would over ride any local health code laws in this case...ultimately in court such as law would be ruled illegal..although they can have specific regulations  such as it cannot be prepared in the kitchen of the facilities.


The facility should attempt to resolve this issue with their insurer,,eventually will a major lawsuit, the law would require insurance to automatically allow outside food as a disability accommodation..it may take a class action suit by various people including those with celiac, various food allergies, autism, etc.


you can try contacting your area ADA TECHNICAL ASSISTANCE CENTER..


although ADA does require this accommodation, until it is actually proven in court, it will be debated and denied



Just an FYI - This thread and the posts on it are from 2011 (3 years old).

In Topic: Test Interpretation?

Yesterday, 05:46 PM

If you had a positive celiac test before, you have Celiac. If you had allergy testing, you did not test for Celiac. This may just be a confusion of word usage? I am not sure why you would be re- tested for Celiac if you were tested for it before.

Edit : your dogs are adorable!

In Topic: Even gluten-free Foods Triggering Reaction After Initial Glutening?

29 October 2014 - 06:45 PM

I'm also getting ready to round up and re-examine diet VERY carefully. It's almost inconceivable that I'm ingesting any gluten, but it's time to get damn sure.
After that, despite my careful analysis of my diet today, I'm going to have to take it apart and put it back together, challenging specific ingredients and looking for triggers. The academic literature doesn't have a whole lot to say about this after folks don't respond to a GFD (I seemed to respond for quite a while, years in fact, thus making me "secondary RCD"). I gather there isn't much info on this because folks' individual triggers aren't easily detectable. Or, there aren't any particular triggers at all. Hope that's not the case. There's always the elemental diet...

Did you get a positive biopsy? I Think that's how they diagnose refractory? Might check into the "Fasano" diet. Basically, whole foods with minimal processing for a few months. Then people with " refractory Celiac" were able to expand their food choices.