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

tTG still elevated after 6 years gluten free


camercla

Recommended Posts

camercla Newbie

Hi,

Just wondering if anyone is going through a similar experience. My tTg over the last six years since diagnosis has gone from 120 to 50, 41, 41, 38 and is now back up to 43. I had the biopsy to confirm coeliac disease 6 years ago. Dietician also told me my EMA (?) Was elevated and there's absolutely nothing else that could be causing all this but gluten. But I've been on an incredibly strict gluten free diet. Generally I don't have symptoms except for maybe fatigue. My other medical issues include Hashimoto's, high risk HPV and having occasional issues with my throat bleeding, regurgitating food and just on a few occasions really sharp pain in my upper abdomen. I've been to the doctor for all of this but they've not got any answers so far.

Anyone had a similar experience of their levels not going down despite going gluten free?

 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

The EMA is very specific for celiac disease. Are you cross reacting to some other food like gluten free oats or dairy or meat glue?

To which tTG lab do you refer to? There is a tTG-IGA and there is a tTG-IGG.

Have you checked for gluten in any vitamins and supplements you may be taking, medications and oral hygiene products?

knitty kitty Grand Master
(edited)

@camercla, Welcome to the forum!

Have you been checked for nutritional deficiencies?  These can occur on gluten free diets and due to the damage done to our small intestines (where our nutrients are absorbed) by elevated antibodies.  

Vitamin D helps regulate the immune system when blood levels are above 80 nmol/L.  Vitamin D deficiency is linked to autoimmune diseases.

The eight essential B Vitamins are important nutrients that we must get from our diet or from supplementation.  Our bodies cannot make them and without them our bodies cannot function properly.    

Insufficiency in Thiamine B 1 can cause symptoms of fatigue, difficulty swallowing, nausea and vomiting.  Gallbladder dysfunction (that pain in your upper right side) is seen in Thiamine deficiency.

Hashimoto's Thyroiditis is improved with Thiamine supplementation. 

Thiamine has anti-viral properties.  Thiamine can fight and prevent HPV infections.

 Are you following a the Autoimmune Protocol Diet?  It has been shown to promote healing in autoimmune diseases.  

Ask your doctor for an Erythrocyte Transketolase test for Thiamine deficiency (before supplementing).  Doctors can administer Thiamine (500 mg) by IV.  Since Thiamine is nontoxic and safe, there's no harm in trying it, if only to rule it out.  Taking over the counter Thiamine supplements like Benfotiamine or Thiamine Hydrochloride also work as well (500 mg three times a day).  Higher than normal amounts are needed to get thiamine into cells and correct deficiency).  Thiamine needs magnesium and the other B vitamins to work with it.  Talk to your doctor about supplementing with a B Complex, extra Thiamine,  Vitamin D and magnesium.

I have found these things very helpful on my Celiac journey.  Hope this knowledge will make your journey smoother.

References:

Association of Thiamine Intake with Human Papillomavirus (HPV) Infection in American Women: A Secondary Data Analysis Based on the National Health and Nutrition Examination Survey from 2003 to 2016

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7670832/

And...

Hypothyroidism Complicated by Vitamin C and Thiamin Deficiency in Surgical Patients

https://pubmed.ncbi.nlm.nih.gov/37278003/

And...

A Prospective Study to Evaluate the Possible Role of Cholecalciferol Supplementation on Autoimmunity in Hashimoto's Thyroiditis

https://pubmed.ncbi.nlm.nih.gov/37116030/

And...

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

And...

Efficacy of the Autoimmune Protocol Diet as Part of a Multi-disciplinary, Supported Lifestyle Intervention for Hashimoto’s Thyroiditis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592837/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Edited by knitty kitty
Add links
cristiana Veteran

Just chiming into say I think mine took 8 years to get down to normal levels from memory.   

I tried so hard to get my numbers down, I rarely ate out, never cheated etc.  I did make the odd mistake along the way but I think in my own case cross contamination at home must have been happening. I share the house with gluten eaters and we had a very suspect old dishwater that didn't really rinse properly.  Thing seem to improve once we got rid of that, and also when we bought a new oven and I used the bottom oven, my family the top. 

Anyway, got there in the end.  And although I think once or twice my numbers went up a bit, for example after a holiday in France where I think the labelling rules weren't as strict as they are in the UK, the general trend was downwards.  

 

RMJ Mentor

What is the normal range for your test?  It can vary from lab to lab because the units aren’t absolute.

My tTg IgA went down to the top end of the normal range within a year, but it took six years for my DGP IgA to become normal.  That one still pops into the high range occasionally.  If I eat processed foods I have to use certified gluten free foods. 

Scott Adams Grand Master

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 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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748

    kyle68j
    Newest Member
    kyle68j
    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

    • 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.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...