Thank You- A Very Special Day

[Valerie2622]

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

 

[1desperateladysaved]

Great Val,

 

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

 

Dee

[cyclinglady]

Good news! I am happy for you!

[BlessedMommy]

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]

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]

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]

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.

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!!

[Valerie2622]

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]

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

[StephanieL]

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

[Valerie2622]

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]

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.