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Thank You- A Very Special Day

Valerie2622

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Valerie2622 Apprentice
Valerie2622
Posted

Long story short, I am still in the process of getting a diagnosis of Celiac disease, but today is a VERY special day, and I want you all to know that it might not be so special if it wasn't for the kind people on this forum.

Today is special because Dr. Fasano is coming to Lexington, MA to lead a seminar about the spectrum of gluten related disorders and I'm going to get to be there. Thanks to the supportive people on this forum, I also got up the courage to call Dr. Fasano and request an appointment, which shall be towards the end of October. 

One step at a time! Right now, it's time to eat a larabar. :)

~Val

 

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1desperateladysaved Proficient
1desperateladysaved
Posted

Great Val,

 

I hope you get lots of ideas for you new meals!

 

Dee

cyclinglady Grand Master
cyclinglady
Posted

Good news! I am happy for you!

BlessedMommy Rising Star
BlessedMommy
Posted

That's great! :)

 

This forum has been so helpful. I don't think that I would've had the courage to switch doctors, put my daughter on a gluten challenge, and finally get the bloodwork done without their help.

MJ-S Contributor
MJ-S
Posted

Wow - that's great!

 

I didn't know Fasano is in Lexington today. That's very close to me. If it's not too late, where and when is he speaking? I'm having trouble finding any information about it online.

 

Edit: I found it: St. Brigid's Parish Hall at 7:00pm. Thank you so much for the heads up!!

StephanieL Enthusiast
StephanieL
Posted

Are you still on gluten or not?  

 

If your blood work was "on the edge" with no positive biopsy, I would suggest getting your blood work drawn again and having it sent to the May clinic as well as wherever your past blood work has been done.  IME, Dr. Fassano still wants a positive biopsy if there is questionable blood work.  

Valerie2622 Apprentice
Valerie2622
Posted
  • Author

I'm so glad you found it- I didn't see this message until now. Did you get to go to the seminar? I went and it was very helpful.

  On 10/22/2014 at 9:02 PM, MJ_S said:

Wow - that's great!

 

I didn't know Fasano is in Lexington today. That's very close to me. If it's not too late, where and when is he speaking? I'm having trouble finding any information about it online.

 

Edit: I found it: St. Brigid's Parish Hall at 7:00pm. Thank you so much for the heads up!!

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Valerie2622 Apprentice
Valerie2622
Posted
  • Author

My bloodwork was positive but they could not find intestinal damage when they did the endoscopy. That being said, I have many challenges that have to do with Celiac disease. I've been off gluten since July 20th, 2014 (and also dairy free because I recently found out I'm lactose intolerant)

MJ-S Contributor
MJ-S
Posted

I did - I thought it was great. Thanks again.

StephanieL Enthusiast
StephanieL
Posted

Did you have the genetics done?  Are you currently gluten-free?

Valerie2622 Apprentice
Valerie2622
Posted
  • Author
  On 10/23/2014 at 7:10 PM, StephanieL said:

Did you have the genetics done?  Are you currently gluten-free?

Haven't had the genetics done yet. I've been GFDF since July 20th, 2014. I have an appointment with Dr. Fasano at MGH, where hopefully things will be sorted out. I believe an official diagnosis is important, so if I'm told to do the dreaded "gluten challenge", I will. >.<

StephanieL Enthusiast
StephanieL
Posted

So the only test so far that was positive was the blood work?  

 

I am not trying to be a downer but just want you to be sure you are going into this with realistic expectations.  No genetics, no + biopsy and I would almost guarantee you that he's going to strongly suggest a challenge.  He/his office isn't even happy when there are 4  of HIS 5 diagnostic criteria met- they still want a challenge. 

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