tTG still elevated after 6 years gluten free

[camercla]

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?

 

 

[trents]

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]

@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 September 23, 2023 by knitty kitty
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[cristiana]

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]

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]

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.):