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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Opinions Much Appreciated


Mysh

Recommended Posts

Mysh Rookie

Hello, looking for some thoughts/opinions similiar to a post that was just done about further testing (I didn't want to hijack that thread).

I was diagnosed approximately 3 weeks ago. I cant get into a gastroenterologist for another 3 weeks, and then it would probably be another 3-4 weeks before he can do a biopsy.

I am, after reading up a bit on Celiac wondering if I need to go ahead with a biopsy or whether it would be bneficial to either a) seek further or more elaborate tesing and just go a dietician or whether I should just continue on the course my doctor has set me on.

My test results so far include:-

Transglutaminase IgA - 4 Range <5

anti - Gliadin IgA - 22 Range <20

anti - Gliadin IgG - 46 Range <20

This is all I've had apart from the usual blood screen. My iron and B12 levels have been severly low my entire life.

I should add that my gluten intake will be from hidden/cross contamination. I figured out years ago that I feel better when I don't eat "Carbs", so I rarely eat bread, pastas. Like I said, it's been years since I've had a regular diet. My doctor of course doesn't know this - we barely discussed the diagnosis at all and she has referred me elsewhere.

That being said, I am concerned that I am going in for a biopsy to confirm a diagnosis, when infact I am happy to deal with the diagnosis as it is.

Someone mentioned before that my body might be already either in a healing state or one where it has effectively healed and I am being glutened which is causing my issues.

Thoughts very much appreciated. Should I go for more tests? Can someone interpret my blood tests? Any advice welcome too.

Thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Skout Organic



Celiac.com Sponsor (A8-M):
Authentic Foods


Mysh Rookie
:unsure: :unsure: :unsure:anyone?
ravenwoodglass Mentor
  Mysh said:
That being said, I am concerned that I am going in for a biopsy to confirm a diagnosis, when infact I am happy to deal with the diagnosis as it is.

Thanks!

IMHO the answer is in bold above. You have positive blood work and if that and resolution of symptoms is enough for you then the choice to biopsy or not is up to you.

GFinDC Veteran

The way I understand it, the biopsy is a hit or miss thing, and can give false negatives in the best situation. If you have been pretty much gluten-free for a while, there is probably an even lower chance than usual that the biopsy will show something conclusive. At least that's how my non-doctor head sees it.

Mysh Rookie

Thanks everyone. I'm still in two minds about it although I am leaning towards not having it done more than having it done.

I am going to see my GP again and also a naturopath so things might be a bit clearer after that. I have also come across a dietician who has celiac herself so if I can get in to her i think it will be money well spent.

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      127,134
    • Most Online (within 30 mins)
      7,748

    Ch3ls3a
    Newest Member
    Ch3ls3a
    Joined

  • Celiac.com Sponsor (A20):
    Authentic Foods


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Skout Organic



  • Upcoming Events

  • Posts

    • 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...
    • 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...
    • Scott Adams
      It took me 2-3 years to feel like my gut recovered, and then I still had gluten ataxia issues for well over a decade.  This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can...
    • Thelma Cadieux
      Good idea, but make sure she does not require lactose free cheese,it is common in celiac patients. 
×
×
  • Create New...