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

Benefit of certain diagnosis


gbm75

Recommended Posts

gbm75 Newbie

I am a teacher and have been following a gluten-free diet strictly as I have a 30-minute commute to work and am experiencing many digestive issues which I cannot have on the highway! I have a sister and a brother with Type 1 Diabetes. My sister has just been diagnosed (in May) as having (being?) celiac. 

From what I am reading to get an accurate test and diagnosis I would need to eat gluten 2x/day for 6-8 weeks before being tested and then having a biopsy. This sounds pretty miserable. While I would love to eat a cinnamon roll again, it would chain me to my bathroom all summer. 

I'm wondering if I should try to get tested or just go along how I am now, acting as if I have already been diagnosed. Are there any benefits to having an actual diagnosis? I am currently living in the U.S.

How long does it take for your villi to heal themselves? 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

I think you need to determine why a formal diagnosis would be important for you--would this be the only reason for you to stay 100% gluten-free, for example? It seems that you've already determined that you have a sensitivity to gluten--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, and since you've not been screened for celiac disease it can't be ruled out.

 

Getting a formal diagnosis can have drawbacks--for example you may pay higher private health and/or life insurance premiums. 

trents Grand Master

You could also get genetically tested for having any of the genes that connect to celiac disease. 40% of the general population  have one or both (there may have been another discovered more recently so there may be more than two) but only about 1% of the population actually has active celiac disease. It also takes a stress event of some kind, e.g. a viral infection, to activate the genetic potential. But if you don't have any of the genes you can rule celiac disease out and presume NCGS instead. But at the end of the day, the antidote is the same for both, namely, total avoidance of gluten for life. Having said all that, it is common for celiacs to develop other food intolerances. The most common are dairy, oats (even gluten free oat, eggs, and corn. But it could be almost any food protein.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JohannesW85 replied to JohannesW85's topic in Related Issues & Disorders
      4

      Do I have celiac/Gluten sensitivity?

    2. - captaincrab55 replied to Connie Smitj's topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?

    3. - trents replied to Connie Smitj's topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?

    4. - Connie Smitj posted a topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?

    5. - trents replied to Brown42186's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Help Understanding Test Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,366
    • Most Online (within 30 mins)
      7,748

    Stacey sharkey
    Newest Member
    Stacey sharkey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JohannesW85
      Did you take a look at my pics that I uploaded?    These rashes is not itchy, but I have seen that people have this too that have celiac and it’s not itchy for them either. I have also heard that sulfur burps are a common things with celiac too.  Yes it can be something else too but it’s to much symptoms that I have that match with either gluten sensitivity or celiac.   Hopefully it’s just gluten intolerance and not celiac.  As I said before I have the gen type for celiac and diabetes typ 1 and the those diseases going hand in hand.    Thanks again Trent for your time to reply, and I wonder if any body else have kind of the same symptoms that I have?   
    • captaincrab55
      Welcome Connie Smitj,  Did you have a follow up test to see if the treatment for H Pylori was successful?  It's possible to catch it again, especially from a partner.  When I contracted it a second time my wife was tested and was positive for two of the bacteria in H Pylori.  
    • trents
      Welcome to the forum, @Connie Smitj! Can you give us a little more history about your celiac journey? How long ago were you diagnosed and how long have your been gluten free? Do you have other symptoms besides quick onset of hunger after eating and gut pain? How long have these symptoms being happening?
    • Connie Smitj
      I eat a gluten-free diet but hunger pains start within an hour of eating dinner. I  had h pylori infection before I was diagnosed. Occasionally I’ll have bouts of pain. Could it come back or is it just celiac disease?
    • trents
      Scott, am I missing something? For the TTG-IGA normal is anything 3 or less and his score less than 2. I think that one is in normal range. @Brown42186, if the GI doc is not interested in doing an endoscopy with biopsy of the small bowel lining based on the elevated TTG-IGG I would request a repeat on the bloodwork now that you have resumed gluten consumption again.
×
×
  • Create New...