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

High Transglutaminase


trishatrue

Recommended Posts

trishatrue Rookie

Help! My daughter was diagnosed with Celiac 6 months ago and had followed a strict diet since. Recent blood results indicate that transglutaminase has increased instead of decreasing. Her doctor insists she has not been honest about her diet. I vehemently disagree, as she and I read everything that goes in her lips and on her body and we are extremely careful concerning cross-contamination. I need help! Has anyone had a similar experience? Is there another disease that could cause hight translutaminase to be present?


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



Celiac.com Sponsor (A8-M):



cruelshoes Enthusiast

There are other conditions that can cause an elevated tTg reading, including Type 1 Diabetes, Hashimoto

trishatrue Rookie
There are other conditions that can cause an elevated tTg reading, including Type 1 Diabetes, Hashimoto
cruelshoes Enthusiast

I don't know enough about refractory celiac to comment about that. I did find this, however:

Open Original Shared Link

Refractory celiac disease. For the purpose of this review, patients with refractory celiac disease are patients with true celiac disease and villous atrophy (i.e., not a misdiagnosis) who do not, or no longer, respond to a GFD. Although the most common reason for failure to respond to a GFD is dietary indiscretion or unknown exposure to gluten, refractory celiac disease also occurs in patients on a GFD who have developed a complication such as ulcerative-jejunoileitis, or enteropathy-associated lymphoma. Patients with refractory celiac disease do not necessarily have positive serology for celiac disease. Refractory celiac disease was reviewed in the context of the requested objectives.

I know you said you have already done this, but I would go back again and triple check everything that goes on or in her body. This includes food, supplements, OTC and prescription medications, shampoo, hand lotion, etc. Gluten can hide in the darndest places. Do you have any gluten in the home at all? Would you be willing to make your home totally gluten-free for a few months to see if it made any difference? CC is so hard to track down sometimes, and some people are extremely sensitive to it.

I would also ask the doctor to run the Anti Gliadin antibodies. This is another tool in determining dietary compliance. Maybe it would tell a different story than the TtG.

Open Original Shared Link

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.

.....

Follow Up Test #1:

tTG-IgA: This test result should be negative

The numerical value of the test doesnt matter as long as the result is negative.

Follow Up Test #2

Anti-gliadin IgA: This result should have a very low negative value

In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well.

.

I truly hope you get to the bottom of things soon.

trishatrue Rookie
I don't know enough about refractory celiac to comment about that. I did find this, however:

Open Original Shared Link

I know you said you have already done this, but I would go back again and triple check everything that goes on or in her body. This includes food, supplements, OTC and prescription medications, shampoo, hand lotion, etc. Gluten can hide in the darndest places. Do you have any gluten in the home at all? Would you be willing to make your home totally gluten-free for a few months to see if it made any difference? CC is so hard to track down sometimes, and some people are extremely sensitive to it.

I would also ask the doctor to run the Anti Gliadin antibodies. This is another tool in determining dietary compliance. Maybe it would tell a different story than the TtG.

Open Original Shared Link

I truly hope you get to the bottom of things soon.

Thank you for the advice. I spent my weekend going over everything in my cupboard's (kitchen & bath) that she consumes and I found a hair product she uses with her hair straightener, mascara, and hand lotion she had in her locker at school. My question is: since these products are not digested, can they elevate her TtG? She does not suffer from any rashes or apparent complications from them (actually, she is completely asymptomatic except for extreme osteopenia that has caused bone deformity in her legs; it took 3 years to figure out it was celiac causing this). Regardless, they have gone in the garbage, as will the rest of the products in my home if it compromises my daughters health.

We did have her blood re-drawn yesterday to confirm the previous results. I wish they had suggested the Anti Gliadin test as well! However, if the results are the same we will ask for it.

I am grateful for your help. Thank you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...