Jump to content
  • 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

Am I coeliac?


Sumara

Recommended Posts

Sumara Newbie

In Nov 2022 I had a blood test that came back with a weak positive for Coeliac. I had been off eating any bread and pasta products that month so the doctor recommended I go back to eating gluten and do a repeat blood test a week later. After my second blood test the doctor said I was still weak positive and not to worry, it meant nothing, and to just carry on as normal. However since then I've done a bit of reading and seen that any weak positive is still a positive for Coeliac and that I should be on a gluten free diet. I was also not offered an endoscopy biopsy, should I have had this to confirm a positive diagnosis? 

My primary symptoms are symptoms of fatigue, brain fog, a little bloating, deteriorating eyesight, weight gain, some joint pain, inflammation.

Any support or information would be amazing, thanks!

Sumara

(these are my first and second blood test results)

anti TTG IgA
21.2 CU (< 20.0)

TTG IgA Interpretation
Weak Positive

IgA
1.0 g/L (0.8 - 4.0)

Endomysial Ab
Negative

Deamidated Gliadin Peptide IgG
12 CU (< 20)

DGP IgG Interpretation
Negative

These are my second blood test results, slightly higher TTG Iga, but lower Deamidated gliadin Peptide.

anti TTG IgA
22.0 CU (< 20.0)

TTG IgA Interpretation
Weak Positive

IgA
0.9 g/L (0.8 - 4.0)

Endomysial Ab
Negative

Deamidated Gliadin Peptide IgG
10 CU (< 20)

DGP IgG Interpretation
Negative


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



Celiac.com Sponsor (A8-M):



trents Grand Master

The Mayo Clinic guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of the blood draw and fro two weeks leading up to the day of the endoscopy/biopsy. You fell well short of that and no doubt it skewed your antibody test numbers downward. Your physician gave you bad guidance. You either need to go back on gluten for around two months if you choose to repeat the antibody testing or for two weeks straight if you decide to go forward with the endoscopy/biopsy.

The other option would be to forego further testing and go all in on gluten-free eating to see if the symptoms improve. That's a reasonable option if you don't care about an official diagnosis that goes in your medical chart. IMO, it is likely you have celiac disease because of the weak positive tTG-IGA as it is 98% accurate. But keep in mind that many people have trouble being consistent on a gluten-free diet without an official diagnosis and in some countries, like the UK, an official diagnosis qualifies you for government stipends for buying gluten-free food.

Scott Adams Grand Master

Since you had two positive blood tests already, you should eb able to just do the endoscopy/biopsy, especially if you explain that you were gluten-free for a time before your blood tests (during the 6-8 weeks before). For the biopsy you would need to eat the same 2 slices of wheat bread daily for 2 weeks beforehand, but if you need further confirmation be sure to discuss with your doctor getting a biopsy (at least 4-6 samples should be taken).

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    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

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.