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Cara in Boston

Great Experience At Beth Israel In Boston

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I am going through the testing process now for both myself and my 5 year old son. Since our primary care doctor is with Mass General, that is where we started. I was getting frustrated with both the long delays in between testing and my son's doctor simply not answering any of my questions. It takes forever just to get someone to call me back. Here's his timeline: November Dr. Visit, December first blood tests, resultst take two weeks and are positive, can't get follow up appointment until January. Get more blood tests. Two weeks for results. Need endoscopy. Can't get appointment until March 10th, etc. etc.

We have switched to a Doctor from Children's Hospital and I am expecting it to be much better.

For myself, when I got my initial blood tests back, I made an appointment at BIDMC (they have a celiac unit). Went yesterday. Got a diagnosis. Got an appointment for a gastroscopy 2 days later. They also set up follow up visits and a meeting with a Celiac Diatician. They were friendly, organized, and FAST. I feel so much relief and no longer frustrated and angry about this whole process.

If you are in the Boston area, skip the rest and go straight there.

Cara

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It would be great if the Beth Israel center became affiliated with Cyrex Laboratories (www.CyrexLabs.com). It is a new lab that caters to Celiacs and identifies CROSS-REACTING foods like potato, rice, corn, coffee and many other foods. Look at Cyrex Lab's page and look at the huge array of cross-reactive tests and familiarize yourself with it. Then call Beth Israel and ask them to begin working with Cyrex Labs so that Celiacs can find out their cross-reactive foods. So far, I have discovered I am also cross-reactive to corn, soy and nightshade plants.

I've already called them and I don't think they took me seriously (they weren't familiar with the concept of cross-reactivity in Celiacs).

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It would be great if the Beth Israel center became affiliated with Cyrex Laboratories (www.CyrexLabs.com). It is a new lab that caters to Celiacs and identifies CROSS-REACTING foods like potato, rice, corn, coffee and many other foods. Look at Cyrex Lab's page and look at the huge array of cross-reactive tests and familiarize yourself with it. Then call Beth Israel and ask them to begin working with Cyrex Labs so that Celiacs can find out their cross-reactive foods. So far, I have discovered I am also cross-reactive to corn, soy and nightshade plants.

I've already called them and I don't think they took me seriously (they weren't familiar with the concept of cross-reactivity in Celiacs).

It's hard enough for most docs to believe that there are that many people with wheat problems out there. Doctors do not address food issues well at all in the US so they are not going to be responsive to a lab which is not in their network and won't make money for them. I think these types of labs are fantastic and very cutting edge but you can also have testing done on your own. I did and that was the only reason I got well.

Thanks for this info, by the way! :)

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Do you mind me asking which doctor you saw? I might need to switch from my GI doc out in the burbs.

Thanks!

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