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

+ bloodwork - endoscopy.. then + bloodwork and another + bloodwork.. next endoscopy??

joleenrae
 Share

Recommended Posts

joleenrae Newbie
joleenrae
Posted

My daughter was tested at her annual appointment when she turned 4 because her brother has celiac's. She has no symptoms. She eats a lot of gluten. 

Blood work round #1 March 2024: 

-          Endomysial IgA Ab: Negative  (Range: Negative)

-          Gliadin IgA: <10.0 U/ml  (Range: <20.0 Negative)

-          IGA: 93.43 mg/dL  (Range: 27.00 - 195.00)

-          TISSUE TRANSGLUTAMINASE IGA: 9.1 U/ml  (Range: <4.0) *** this was high. the range changes for the next one, but it was noted that it was about double the range. 

We went for an endoscopy in May 2024 and it was negative. 

Blood work round #2 October 2024:

-          ENDOMYSIAL ANTIBODY TITER: 1:5 titer  (Range: <1:5) **flagged as high

-          ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER: POSITIVE  (Range: NEGATIVE) **flagged because its not negative

-          IMMUNOGLOBULIN A  TISSUE TRANSGLUTAMINASE AB, IGA:  28.8U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.) **flagged high but the ratio/range was different and about double. Note says: Serological evidence for celiac disease is present.

Blood work round #3 January 2025:

-          TTG IGA: 28.1U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.)

Now we are scheduling another endoscopy. My main concern right now is if the endoscopy is negative again…where does that leave us??? Public Schools and daycare will not feel her gluten free if its not an official diagnosis.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Since she is asymptomatic and her first biopsy was negative I would not assume she has developed celiac disease. If her upcoming biopsy shows evidence of mucosal damage you have the firm evidence you need to trigger the gluten-free protocol at the preschool. There are other causes for mildly elevated tTG-IGA levels besides celiac disease. Studies are all over the map with this statistic but there is somewhere between a 10% and an almost 50% chance that your daughter will develop celiac disease since she has a first degree relative who is a celiac (her sister).

The important thing in this scenario is to continue to monitor the situation via testing and symptoms. You are already doing this so kudos to you and your doctors.

But one question I have is, are the blood samples being tested by the same lab in each case? Different labs build these tests a little differently and there is no industry standard. So, to compare her tTg-IGA test scores from one time to the other is only useful if the analysis is being handled by the same lab.

Edited by trents
joleenrae Newbie
joleenrae
Posted
  • Author

The first lab was different because Allina switched which lab they work with in between March and October. But October and January were the same lab. All through Allina but two separate labs.  

Scott Adams Grand Master
Scott Adams
Posted

I lean towards very probably celiac disease due to the two positive tTg-IgA blood tests. Although there are other things that might cause this test to be elevated in certain individuals, the most likely cause by far would be gluten sensitivity. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

trents Grand Master
trents
Posted

Have you and you and the children's father been tested?

joleenrae Newbie
joleenrae
Posted
  • Author

We have been tested and tested negative. But we have not done the gene testing. 

Celiacandme Apprentice
Celiacandme
Posted

I hope you don't have to wait too long until her endoscopy. Is she able to bring her lunch with her in the meantime?

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

Celiac.com Sponsor (A8-M):


  • 5 months later...
joleenrae Newbie
joleenrae
Posted
  • Author

We had the follow up endoscopy 1 year out from the first one. We left that day and they said visually it looked good so he thought she'd be negative again. Results came back this week as celiac sprue present and level Marsh 3A. So she doesn't have much damage but she is now positive for celiacs... Just thought I'd post in case in takes anyone else a year to get a diagnosis. :)

Scott Adams Grand Master
Scott Adams
Posted

It's too bad they didn't diagnose her based on the positive tTg-IgA blood tests + family history. Marsh 3A does confirm celiac disease, but it’s great that the damage isn’t extensive! Even with moderate changes, symptoms can vary widely. Strict gluten-free eating should help heal the gut over time. 

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. SusanJ
      - SusanJ replied to Jillian83's topic in Coping with Celiac Disease
      5

      Celiac and dermatitis herpetiformis has taken Me from Me

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was...
    2. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    4. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    5. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,980
    • Most Online (within 30 mins)
      7,748
    Cathal Brugha
    Newest Member
    Cathal Brugha
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
×
×
  • 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.