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

How much does the diagnoses matter?


Kazbo

Recommended Posts

Kazbo Rookie

I have been gluten free off my own back for about 7 weeks. I had a bumpy ride to begin with and I'm now reducing lactose after some symptoms returned.  I am waiting for my gastro referral to come through but in the mean time I'm finding things have improved significantly since I changed my diet. 

I am wondering how many of you NEEDED the diagnosis of celiac or if your self diagnosed and have been happy with that. Or maybe you just say Non celiac gluten sensitivity and  that's enough for you.  

I am really not sure which mine is but I feel confident now that it's one of the above. I'm not sure I want to face to gluten challenge for a diagnosis where celiac may or may not be discovered but is knowing for sure helpful?

I also worry that NCGS might not be taken seriously,  although I am sure for those suffering it is very serious indeed!  

I'm interested in others thoughts and experiences to help me make a choice or to feel that NCGS matters too! 


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



Celiac.com Sponsor (A8-M):



captaincrab55 Collaborator

Hi Kazbo,  I had an Apprentice that was self diagnosed with Celiac.  I couldn't convince him to get diagnosed by a Doctor,  He did something dumb and got locked up.  They refused to feed him gluten free foods, because he wasn't diagnosed by a Doctor!

Kazbo Rookie

OK, good point. I'll try and avoid prison if I don't get the diagnosis 😆😬

Beverage Rising Star

Some docs in the US are diagnosing without the endoscopy. My step granddaughter (age 19) and I were both diagnosed by different docs based on blood test, DNA test, and response to gluten free diet. If you haven't already had the Celiacs blood tests done, you would have to eat gluten again for many weeks prior.

I do have a letter from my doc saying i require a gluten free diet, but have never had any medical person require to see it, even when I was in hospital 2 years ago.

captaincrab55 Collaborator
3 hours ago, Beverage said:

.

I do have a letter from my doc saying i require a gluten free diet, but have never had any medical person require to see it, even when I was in hospital 2 years ago.

I had to show that I was diagnosed with dermatitis herpetiformis in order to get my health insurance to cover gluten-free brand name drugs instead of generic drugs that weren't gluten-free!

 

 

 

drugs that weren't gluten-free

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,138
    • Most Online (within 30 mins)
      7,748

    JennaferH
    Newest Member
    JennaferH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Katya773
      Ohh gotcha , thank you! Makes sense why I got so sick 😕 Definitely avoiding this in the future 
    • pmarklesparkle
      Thank you, Hopeful!  I've downloaded both of those apps and will try them out.  Much appreciated!
    • Thelma Cadieux
      Thanks but I will check it out with my doctor, usually stress will trigger it,
    • Hopeful1950
      Has any doctor suggested taking a round of Dapsone?  If you have dermatitis herpetiformis, dapsone will clear it fairly quickly.  It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis.  Sure enough it worked like a miracle and itch stopped and after 2 months the rash cleared.  Then I embarked on figuring out how to eat to avoid the breakouts.  It is my understanding that once you expose to gluten, the reaction happens and antibodies are deposited in your skin.  They can blister right away or hang around for a long time and get "activated" by other things like your monthlies, pressure, stress etc.... It makes it difficult to diagnose and difficult to manage.
    • Hopeful1950
      I use an app called Spoonful where you can scan labels and it will tell you whether it is safe, questionable (and why) and also something you can substitute.  It also makes it easier to see what is on the label.  There are some ingredients that I avoid in addition to gluten. You can also search the app by a category.  I just searched on "cosmetics and a few things popped up as compliant.  I think the app is mainly focused on food.  When I first started out reading labels was a nightmare and it took me so much time at the store.  This app has really helped me when I am looking at something new.  They update frequently, and if something isn't in their data base there is an AI function where you can enter the information from the label and it will analyze it right away for you. I have used an app called Find Me Gluten Free in the past when I am traveling to find restaurants.  People's reviews are very helpful because even when a restaurant claims to be able to accommodate, often people will find out differently and they report it on reviews. Hope this helps.
×
×
  • Create New...