Jump to content
  • 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

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

Great Val,

 

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

 

Dee

cyclinglady Grand Master

Good news! I am happy for you!

BlessedMommy Rising Star

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

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

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

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

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

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

StephanieL Enthusiast

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

Valerie2622 Apprentice

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.