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
co09wrx
Posted

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
psawyer
Posted

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
Lisa
Posted

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
ravenwoodglass
Posted

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
Roda
Posted

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
lovegrov
Posted

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
co09wrx
Posted
  • Author

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
nvsmom
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,271
    • Most Online (within 30 mins)
      7,748
    Trisha Waller
    Newest Member
    Trisha Waller
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Kan-101

      By RMJ · Posted

      It is more likely code for “we think there really was a good response to the treatment, but it was small or in a small percent of subjects so it would take a large clinical trial to try to prove it.”
    • Dana0207
      Celiac symptoms

      By Dana0207 · Posted

      Thank you so much for your replies. Luckily the rash went away when I completely swore off gluten. It took several months but I have not had a flare in months. So a biopsy is no longer possible. The itch was terrible and apart from bleaching my skin the steroid lotions and potions did nothing. The Gliadin is for accidents and shall be a part of my travel kit from now on. This past exposure has made a me a little leery about eating anything that was not cooked in my kitchen or a dedicated gluten-free restaurant. As much as I used to love baked goods, I am cured and have become quite the gluten free baker to the point that friends and family forget that my cakes/cookies/and bread are not "real". I guess I will have to wait for the new blood test to come out to get confirmation but I have a suspicion that the rash was dermatitis herpetiformis.
    • Jmartes71
      Nateral remedies

      By Jmartes71 · Posted

      Hello, I just wanted to share with the frustration of skin issues and seeing dermatologist and medications not working for years, I did my own healing experiment. As of last week I have been taking a drop internally under the tongue of Vetiver and putting on topically on sores Yellow/Pom.I am seeing a extreme difference at a rapid time.Im also noticing my nails a little harder. Ive always been into natural properties because I feel its safer for the body.I know short time, but really seeing a difference. I also feel the the trapped gases that causes bloating helps break down as well.Curious if any body else can benefit from and has tried. Products is made by Doterra by Dr Hill
    • Scott Adams
      Is Caputo gluten free flour really free of gluten?

      By Scott Adams · Posted

      We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/
    • Scott Adams
      Celiac symptoms

      By Scott Adams · Posted

      I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • Create New...