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

Newbie, Testing Questions


tita2

Recommended Posts

tita2 Newbie

Hello all,

I am new to the whole gluten thing. I have been researching it for the past couple of months since a friend discovered her own sensitivity and feels better on a gluten free diet. She tested negative to celiac. I have had digestive problems for years, migraines, depression and a host of other issues. I finally started to eat gluten free (as much as I can) only 5 days ago and feel some difference. A while back I discussed it with my doctor and asked to be tested, but he quickly insisted I could not be celiac unless I had extreme symptoms, and mine have never been severe. Since then, I have become more informed. My question is this, why be tested if you already know you're feeling better on a gluten free diet? I want the test, but my friend thinks it is unnecessary. From what I have been reading so far, I disagree. Also, how do I convince my doctor that a test would be beneficial?

Thanks for your time and information. Great website and forum!

tita


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

This is the collective test that you should have your doctor order, if you would like to be tested for Celaic:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It's important that you should be eating a full gluten diet, before testing for optimum accuracy.

Many people here are self diagnosed and they feel quite comfortable with that. Walk around this site and read others experiences. To test or not to test is a personal decision that only you can make. :) Some people want an official diagnosis, some people just feel better off gluten. :)

And Welcome!

nvsmom Community Regular

I think being tested benefited me. I've been gluten-free for about a month, although I was glutened by smaller amounts than I ever thought possible so I haven't felt better much of the time. So being off gluten doesn't feel much better but being glutened seems to be worse. Also, after being diagnosed, it led to finding out that I have some sort of hypothyroidism, which will prevent me from feeling good gluten-free.

I'm an odd case who probably wouldn't have felt a lot better gluten-free because of another unknown pre-existing condition, so I don't know if I would have stuck with it. In many people's thoughts, I'm only half diagnosed because I did not want to pursue the endoscopy, and am comfortable with positive blood tests... It really is a personal choice though.

tita2 Newbie

Thanks for your responses. I will keep reading about people's experiences and knowledge here. :)

sosickofbeingsick Newbie

The reason I think testing should be done (for my own case anyway!) is that there is a difference between having the autoimmune response to gluten that celiac patients have, and having gluten simply "not agree" with you.

However, if you are having some of the symptoms that indicate nutrient deficiencies, etc. , it seems to lean more to an auto immune response. If it just doesn't agree with you (ie causes diarrhea, bloating), it shouldn't be causing intestinal damage as far as I understand from the research I've read.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,265
    • Most Online (within 30 mins)
      7,748

    V Arnold
    Newest Member
    V Arnold
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      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
      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
      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
      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
      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...