Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thank You- A Very Special Day

Valerie2622

Recommended Posts

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

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

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. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,222
    • Most Online (within 30 mins)
      7,748
    Dr. Elizabeth Fagan
    Newest Member
    Dr. Elizabeth Fagan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Family education

      By Rogol72 · Posted

      @sillyyak52, If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration of gluten cross contamination even though I've explained it diplomatically with articles, pictures of dermatitis herpetiformis (which I've had for years) like @knitty kitty and I both suggest you do. I avoid that sibling at restaurants now and sit at the opposite end of the table out of arms reach! I've had similar treatment at a recent siblings 60th BBQ with family and friends (brought my own food and burger), where I was told (in a very rude manner) "tough luck, there's nowhere safe ... just cook your burger on the BBQ" which was cross contaminated ... I stood my ground and asked for a clean frying pan to cook my burger safely and separately. 
    • Deanne jones
      Can food allergies like milk and soy flatten villi?

      By Deanne jones · Posted

    • trents
      Dangerously underweight, Perfect gluten free and insomnia

      By trents · Posted

      knitty kitty makes a good point. Avocados are high in histamines. So are bananas. Both also trigger histamine production in the body when consumed so there's a double whammy with those two foods for those struggling with histamine intolerance/MCAS
    • knitty kitty
      3 years with Celiac, now I appear fine.

      By knitty kitty · Posted

      @Sharke, The updated guidelines for a gluten challenge are to eat ten grams of gluten per day for two weeks minimum.  Lesser amounts of gluten (3 grams) don't provoke an immune response strong enough that the antibodies leave the gastrointestinal tract and get into the blood where they can be measured in tTg blood tests.   Have no doubt that the antibodies made in the small intestine are doing damage there, even if you don't suffer severe symptoms, yet. Did you react to barley prior to going gluten free? Have you been checked for chronic autoimmune gastritis which is another autoimmune disease that sometimes occurs with Celiac Disease? Have you been checked for nutritional deficiencies?  Thiamine deficiency (Gastrointestinal Beriberi) can cause constipation and/or diarrhea, abdominal pain, and weight loss.   Thiamine Deficiency Disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/  
    • knitty kitty
      Family education

      By knitty kitty · Posted

      @sillyyak52, Count another one in the same boat!  My family has always been in denial.  They said my tummy aches were a ploy to miss school.  My parents passed from health problems associated with uncontrolled Celiac Disease (Abdominal Aortic Aneurysm and Glioblastoma brain tumor).  My sister still has her head buried in the sand.   I agree with @Rogol72, try the consequences of untreated celiac disease shock treatment.  Sometimes people are just scared of having to change their comfortable lifestyle.
×
×
  • Create New...