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

help interpreting results?

love2craft
 Share
Go to solution Solved by trents,

Recommended Posts

love2craft Rookie
love2craft
Posted

Hello everyone!

I am wondering if someone could help me interpret my celiacs blood test results. The blood tests were ordered by my PCP who is not knowledgeable on celiacs and I had to really push for the tests. It will take a few months to see a gastro so I am hoping someone with a bit more knowledge can help me out in the event that my PCP is unable or unwilling to explore a celiac diagnosis further. 

DEAMIDATED GLIADIN ABS, IGG - 23 units (standard range: 0 - 19 units)

DEAMIDATED GLIADIN ABS, IGA - 12 units (standard range: 0-19 units)

T-TRANSGLUTAMINASE (TTG) IGA - 5 U/mL (Standard range: 0 - 3 U/mL)

I also have the HLA-DQ2.5 haplotype on the HLA-DQA1 gene. I do not have the HLA-DQ8 gene.

Based on this information, should I seek out a gastro for further testing? I fear my PCP will not know how to interpret these results. Thank you. 

 

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

Celiac.com Sponsor (A8-M):


  • Solution
trents Grand Master
trents
Posted
  • Solution

Two out of the three antibody tests are positive and you have one gene indicating the potential to develop celiac disease. Yes, I would seek further testing for confirmation but since you have already had the antibody testing done the next logical step is an endoscopy with biopsy. You also have the option of going on a gluten-free diet up until at least two weeks before the endoscopy when you should then go back on a gluten containing diet represented by 2 pieces of wheat bread daily or the gluten equivalent, according to the Mayo Clinic guidelines for the pretest gluten challenge for those having an endoscopy/biopsy. By that time, however, you might find that gluten will cause stronger reactions than before.

What are your symptoms? Can you live with them until the endoscopy?

love2craft Rookie
love2craft
Posted
  • Author

My symptoms are mainly 

1 minute ago, trents said:

What are your symptoms? Can you live with them until the endoscopy?

My symptoms are primarily gastrointestinal and some brain fog. I was actually gluten free for the last 18 months after identifying a sensitivity via an elimination diet. My PCP ordered the blood test without telling me about the gluten challenge so this is actually my second test, but the only one I have done since reintroducing gluten. Symptoms lately have been fine but I have admittedly not been eating a ton of gluten, only the 2 slices of bread a day as generally recommended. 

I am also still waiting for my Endomysial antibody IGA results. 

trents Grand Master
trents
Posted

So, how long were you back on gluten before the second antibody test?

love2craft Rookie
love2craft
Posted
  • Author
Just now, trents said:

So, how long were you back on gluten before the second antibody test?

3.5 weeks

trents Grand Master
trents
Posted

According to the Mayo, the gluten challenge preceding the antibody testing should last 6-8 weeks and two weeks for the endoscopy/biopsy.

love2craft Rookie
love2craft
Posted
  • Author
2 minutes ago, trents said:

According to the Mayo, the gluten challenge preceding the antibody testing should last 6-8 weeks and two weeks for the endoscopy/biopsy.

What does that mean for my results? Could/should they be higher?

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Given the two positive blood test results it is likely that you do have celiac disease. The results would likely have been higher had you followed the 6-8 week protocol.

The normal next step would be an endoscopy to confirm, and you should continue eating gluten until all tests are completed. Here is more info on what your blood test results mean:

 

trents Grand Master
trents
Posted
(edited)
10 minutes ago, love2craft said:

What does that mean for my results? Could/should they be higher?

Yes, likely higher. Believe me, we get this same story over and over on the forum. I mean, docs failing to warn their patients not to go on a gluten-free diet until testing is complete. It's very frustrating because it often creates test results that are not definitive. Many docs are just ignorant about gluten related disorders or they have an attitude about it being the latest healthcare scare craze or fad disease.

Edited by trents
love2craft Rookie
love2craft
Posted
  • Author
10 minutes ago, trents said:

Yes, likely higher. Believe me, we get this same story over and over on the forum. I mean, docs failing to warn their patients not to go on a gluten-free diet until testing is complete. It's very frustrating because it often creates test results that are not definitive. Many docs are just ignorant about gluten related disorders or they have an attitude about it being the latest healthcare scare craze or fad disease.

Do you think I should ask my gastro to re-do the blood test?

trents Grand Master
trents
Posted
Just now, love2craft said:

Do you think I should ask my gastro to re-do the blood test?

No. I would move onto the endoscopy/biopsy.

love2craft Rookie
love2craft
Posted
  • Author

Would the Endomysial antibody IGA results change the two positive results? Indicate higher likelihood or is it already high?

love2craft Rookie
love2craft
Posted
  • Author
34 minutes ago, trents said:

No. I would move onto the endoscopy/biopsy.

I just received the results of my Endomysial Antibody IgA test and it was negative. How does this impact the rest of my results? Thank you so much for all your help!

trents Grand Master
trents
Posted
(edited)
1 hour ago, love2craft said:

I just received the results of my Endomysial Antibody IgA test and it was negative. How does this impact the rest of my results? Thank you so much for all your help!

The EMA is a less sensitive test than the tTG-IGA but it does carry a very specific affinity to celiac when it is positive. A negative for that one doesn't change my opinion. Your next logical step is to go back on regular amounts of gluten and arrange for an endoscopy with biopsy. Does the prospect of an endoscopic procedure make you nervous?

Edited by trents
love2craft Rookie
love2craft
Posted
  • Author
3 minutes ago, trents said:

The EMA is a less sensitive test than the tTG-IGA but it does carry a very specific affinity to celiac when it is positive. A negative for that one doesn't change my opinion. Your next logical step is to go back on regular amounts of gluten and arrange for an endoscopy with biopsy.

 

Thank you for the explanation. This has been so overwhelming as my PCP has been unhelpful but I have an appt with a gastro who can hopefully provide clarify and arrange a biopsy. 

Not nervous about the endoscopy, just dreading additional weeks of gluten. I tried to start gradually but my symptoms are really catching up with me. 

  • 3 months later...
love2craft Rookie
love2craft
Posted
  • Author

I wanted to share an update with everyone regarding my results in case this is helpful to anyone. I have been biopsied and received an official Celiac diagnosis today. 

trents Grand Master
trents
Posted

Thanks for the update. You have a leg up on this as you were already eating gluten-free before beginning the gluten challenge in preparation for the testing. Let us know if we can help with anything.

love2craft Rookie
love2craft
Posted
  • Author
2 minutes ago, trents said:

Thanks for the update. You have a leg up on this as you were already eating gluten-free before beginning the gluten challenge in preparation for the testing. Let us know if we can help with anything.

Thank you. I posted in the post diagnosis section that I am now looking for book/research recommendations and supplement recommendations. The switch to being SUPER strict with cross contamination is very daunting. 

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

 

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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,111
    • Most Online (within 30 mins)
      7,748
    Donald Carr
    Newest Member
    Donald Carr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.