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

Ok, Im Confused.


co09wrx

Recommended Posts

co09wrx Newbie

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

I'm not an expert in the blood tests. The ones developed ten to 15 years ago were not as specific as some available today. There is one (somebody will know which it is) which is highly specific for celiac disease. A positive there is 99% accurate.

Lisa Mentor

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry

If your anti-endomysial antibodes are positive, you can conclude that your diagnosis is Celiac Disease. No biopsy would be needed.

ravenwoodglass Mentor

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry

You have a good GI. Follow their advice. Plus if you are already gluten free the biopsy has a good chance of being a false negative.

I hope you heal quickly but for some of us things can be up and down for a bit. Hang in there and ask any questions needed.

Roda Rising Star

Go with what you GI is saying if you are comfortable with that. My youngest son is diagnosed without a scope/biopsy.

If you still want to do the scope/biopsy, be aware that you have to be eating gluten to get the most accurate biopsy for celiac. The scope does look at the esophagus and stomach also. Biopsies are taken from both places to rule out other things like barretts esophagus, ulcers, inflammation , cancer, parasites, H pylori, etc. I'm not mentioning this to scare you, its just part of the routine scope process.

lovegrov Collaborator

It's my understanding that a number of doctors now consider symptoms and a positive blood test all you need for a diagnosis. And improvement on the diet would confirm it.

richard

co09wrx Newbie

Thanks for all your feedback. I know I will need assistance in the future coping with this. Feeling better, I have less blotting staying away from gluten and dairy. Coming to the realization that it may take a long time for my digestive track to heal.

Terry


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Good luck Terry. :) You'll probably notice some improvements within a week or two and then other improvements will slowly show up... It does take a while.

I wanted to add that I was diagnosed based on positive EMA and ttg IgA, and my symptoms. No endoscopy neede, which is great since I like to avoid procedures like that. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,914
    • Most Online (within 30 mins)
      7,748

    Andreaheath
    Newest Member
    Andreaheath
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Alibu, Migraines ran in my family as well.  Correcting my Thiamine insufficiency made a dramatic improvement in frequency and duration.   If you take Thiamine, B12 and B6 together, they have analgesic (pain relieving) properties.  Taking thiamine every day has cut down on their occurrence and severity for me.   Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide).  These forms get into the brain easily.  Magnesium Threonate gets into the brain easily, too, and helps thiamine work.  My gave a sigh of relief when I first took it, and no migraines. Yes, lowering histamine levels helps one feel better, too.  Vitamin C and B12 help reduce histamine.  A low histamine diet can help, too.  DAO supplements lower histamine, as well.  DOA is a digestive enzyme we can run short on.  
    • knitty kitty
      @ehb   Great you're going to start the AIP diet!  I know it's scary and stressful, but you'll soon start feeling better.  It's a challenge, but you can make it.  Do ask for a Erythrocyte Transketolace test which tests for Thiamine level.   I hope your Vitamin D level is between 70 and 100 nmol/L.  In this optimal range, Vitamin D can act like a hormone and regulate the immune system.  Vitamin D 3 is the form that the body can utilize well.  I was prescribed the synthetic firm D2 and my body didn't like it.  I know getting my Vitamin D up in the eighties made a world of difference to me.  My depression improved and I felt so much better at higher levels.   I prefer Life Extension brand for many vitamins.  The important thing is to read the label and watch out for fillers like rice flour.  This may help. Keep us posted on your progress!  
    • ehb
      @knitty kitty I have an appointment to go over the results tomorrow. Vitamin D was in the normal range. I’ve decided to start the gluten contamination elimination diet, while avoiding nightshades as recommended by the AIP. I am still hoping to get support from a nutritionist or advice from the doctor about supplements to make sure I’m getting enough nutrients. I’m still having a hard time sorting through all of the different brands and possible combinations
    • cristiana
      We've definitely all had such thoughts.  But as Scott says, it does get easier with time.  I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes.   I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone will create a decent substitute for them! One thing that I remember my husband said to me when I was feeling down one day  was: "Why don't you try to think of all the things you can still eat, rather than the things you can't?"  The list is long, and it did help - sort of!  
    • Scott Adams
      It looks like they are naturally gluten-free, but not labeled gluten-free. https://www.quakeroats.com/products/hot-cereals/grits/instant-grits-plain
×
×
  • Create New...