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

Going To The Doctor Tomorrow-What Test(S) Should I Have Done?


desperateforhealth

Recommended Posts

desperateforhealth Apprentice

About a month and a half ago I decided I was fed up with my stomach problems and did enough research to suspect gluten intolerance/celiac's, so I decided to go gluten free. My stomach is happier (although it might just be because I eat healthier now), but I've decided I'd like to get tested so that I can know for sure. I'm worried about people thinking my self-diagnosing isn't legit. Especially if I am still having problems, even if it's fewer than before.

So my question is... what test(s) should I request from my doctor so that I can know if I have gluten problems? Obviously I am particularly interested in ones that don't require you to have gluten IN your system, but I am also worried about price. Any advice and information is very much appreciated.

Thank you so much for your help.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Unfortunately both blood tests and endoscopy/biopsy require you to have gluten in your system.

If you are looking for a Celiac Disease diagnosis, you will have to go back on gluten (some say a substantial amount of gluten for a period of at least three weeks...my Celiac Doc told me a month).

Since you are gluten-free, perhaps you should stay that way for a few months then decide if it is worth the set-back for a diagnosis. Also at by then you may be ready for a gluten challenge to confirm for yourself that gluten is a problem for you.

desperateforhealth Apprentice

Thank you!

Do you think I need to wait a few more months before being able to tell if gluten was affecting me if I reintroduced it?

GottaSki Mentor

hard to say. You may find gluten bothers you after only a short time gluten-free.

The reason I suggest some time without gluten is to see if you have even more improvement to your health since you are already gluten-free.

There are no concrete formulas for celiac diagnosis - many have negative celiac panels and positive endos or vice versa.

The standard path is celiac panel/bloodwork followed by endoscopy with several samples taken of from different locations. Since you are already gluten-free - you'll have decide when you want to proceed with attempting to get an official dx which will require gluten in your diet for weeks prior to testing.

desperateforhealth Apprentice

That makes sense, thanks.

If the bloodwork is positive, why do people still have to get the endoscopy?

GottaSki Mentor

To confirm diagnosis - for many giving up gluten for life is not something they will do without an official dx. The endoscpy can also be helpful in determining the level of damage. Personally my damage was quite severe so I have had follow up endos.

Again you will find of full spectrum of paths that have led folks to the gluten-free life - some with official celiac or gluten intolerance dx / some without. Some have improved health without testing and don't feel they need a dx to stay gluten-free.

desperateforhealth Apprentice

Ah, yes. Thank you, that is quite helpful.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,372
    • Most Online (within 30 mins)
      7,748

    Paula Andrews
    Newest Member
    Paula Andrews
    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

    • Paula Andrews
      Hi! Did anyone experience severe body aches prior to being diagnosed?  Last year I suddenly experienced widespread pain, completely unexplained. After numerous tests with normal results I was diagnosed with fibromyalgia in August and started taking Cymbalta, which helped about 80%. Now other than pain, I did not have any additional fibromyalgia symptoms.    In the following months I started experiencing diarrhea, to the point where it was constant. In January I was diagnosed with celiac disease and microscopic colitis after having an endoscopy/colonoscopy. I've been gluten-free since that day and recently my pain level has dropped to ZERO.  I'm starting to wonder if I even have fibromyalgia, or if all of my symptoms were celiac and colitis.  I've seen several doctors and no one suggested this, but from what I'm reading it sounds possible.  The fact that I was diagnosed with two different diseases within a few months also seems odd. Has anyone else experienced all-over body aches with celiac?  And if so did the pain end after eliminating gluten?  Unfortunately I don't know anyone who has either celiac or fibromyalgia to talk to.
    • Scott Adams
      Understood, and with any positive blood test the usual next step is a biopsy to confirm celiac disease, and this would be true even if the tTg-IgA is negative.
    • Levi
      ADA, if that applies to you, has specific procedures, guidelines, rules, and regulations for employers to accommodate employees with disabilities. Check with your company HR Dpt. As Scott has mentioned this would be a quick fix, with the protection afforded employees with disabilities through ADA there is no need for you to job hunt. Hope this helps.    Ps. Coeliac Disease is now a listed Disability in the U.S.  
    • trents
      Yes, the TTG-IGG was positive but not the TTG-IGA.
    • Scott Adams
      For someone with celiac disease who might have extreme villi damage the term "cross-reactivity" gets thrown around a lot.  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.
×
×
  • Create New...