Ttg levels not going down

[Irane]

Hey I was diagnosed celiac in November 2017 with ttg levels above 200 and started on a strict gluten free diet. After 6 months it came down to 100 and I got it checked 3 months back and it was down to 25 but I checked again this week and they were rocket high to 100. What could be the cause of this ? I don’t understand why my levels won’t go down I’m on the most strict gluten free diet I think anybody could be on. I don’t even eat chicken unless it says gluten free on it

[cyclinglady]

Well, it could be that your celiac disease is active.  This seems pretty logical considering that it had lowered to 25 before.  Take a serious look at your diet, supplements, medications, kitchen practices, eating out — anything that you can swallow.  

Consider the Fasano diet.  I trialed that diet for a few months. It did not bring down my very elevated DGP IgA though.  Nor did it reduce my lingering symptoms (indigestion, GERD which were new) from a 1/2 year earlier previous Gluten exposure.  So, I had a repeat endoscopy.  My small intestine had completely healed and I was diagnosed with Chronic Autoimmune Gastritis.  I have never been able to bring down my DGP IgA, but then I only had it retested after what I thought might be gluten exposures (vomiting, Abdominal pain,  diarrhea).  I do have other autoimmune issues that play into the mix.  

What I learned:

1.  Celiac disease antibodies tests were designed and tested just to diagnose celiac disease and not for dietary compliance.  But the blood tests are the only non-evasive tests available. 

2.  Not all symptoms are due to celiac disease.  Avoid having medical assume that you are just struggling with celiac disease.  My GI did not.  He wisely suggested an endoscopy early on but I was stubborn.  

In your case, I would start with your diet. Easiest thing and most logical.  

Edited February 1, 2020 by cyclinglady

[Irane]

After my levels were checked to be 25 I had a hair glutening 2 days after could that have been the reason my recent test results are so high? Can one glutening cause such high numbers?

[cyclinglady]

A gluten exposure from hair?  I personally do not think that is possible unless you were actually eating hair products that contained gluten and who would do that?  Did you swallow shampoo?  

Let’s say you used some hair gel that has a little gluten and the wind blew your hair into your mouth.  You are not going to get enough gluten to cause a flare up.  I guess if you had a disorder that causes you to eat hair, then it could be possible.

Do you EVER eat out?  Do you live in a household that has gluten in it?   Not that you can never do these two things, but mistakes can be made.  There is some risk of exposure.  

[Irane]

Omg my bad I meant to say major not hair *** I had a major glutening while I was travelling to India For a week and after that when I came back to US I felt better for a while but I was still having rashes and I got my levels checked and they were 100

also I had a slight elevation in my liver enzyme AST

[RMJ]

I think it could be possible - a major glutening could be like a booster shot for the immune system.  Hopefully your antibodies will go back down again as quickly as they did the first time.  

[docaz]

Experts come more and more to the conclusion that a pure gluten-free diet is almost impossible to maintain. A recent study which in my opinion was very cleverly done, examined doggy bags taken home after eating gluten-free food in restaurants. The doggy bags were examined and a very high percentage showed to contain gluten. (If you do a web-search for gluten free doggy bag you will find that). 

Unless, someone lives in a "zip-lock" bag, the likelihood is very high that one is exposed to gluten.

I think that it was not this year's but last year's Beyond Celiac's yearly symposium where clinicians from the most reputable celiac centers use the term gluten-reduced diet because they realized the great social impact and the difficulty to maintain a true gluten-free diet. 

The question is what to do with this information. Should we isolate ourselves even more from social situations? I think that enzymes specifically designed to break down proline bindings in the gliadin molecule are a"crutch" because they does not address the underlying condition but I think that this crutch is a very good one for now. By the way, DPP-IV that is contained in some products with catchy names is not effective. 

For full disclosure, I am involved with such a product but I purposely do not want to mention it here to avoid that this post gives a promotional feeling but I think that you could benefit tremendously from such enzymes when you eat a gluten-free mean in environments that are not completely gluten-free.  

Edited February 2, 2020 by docaz
forgot a word

[Fenrir]

On 2/1/2020 at 8:41 PM, docaz said:

By the way, DPP-IV that is contained in some products with catchy names is not effective. 

For full disclosure, I am involved with such a product but I purposely do not want to mention it here to avoid that this post gives a promotional feeling but I think that you could benefit tremendously from such enzymes when you eat a gluten-free mean in environments that are not completely gluten-free.  

This is actually in correct. AN-PEP has been pretty well proven in studies to do exactly what it advertises: breaks down gluten before it reaches the small intestine. It's not a cure, but in a world where it's near impossible to avoid gluten 100% of the time (due to cross contamination) it is beneficial to use it as a prophylactic in situations where you don't have control over the food prep. 

Best estimates using proper dosed products with AN-PEP is that it can nutralize up to 0.75g of gluten in a single dose. That's roughly an 1/8th a piece of bread. That's enough to minimize reactions to cross contamination. 

Again, AN-PEP is very well established at this point to break down gluten. Where things go wrong is people think they can take it and then eat like they don't have celiac disease. If used for the proper purposes, AN-PEP is pretty effective at guarding against small, incidental gluten exposures. People should still make an effort to avoid gluten as much as they can though, it's not a replacement for a gluten free diet. 

[docaz]

13 minutes ago, Fenrir said:

This is actually in correct. AN-PEP has been pretty well proven in studies to do exactly what it advertises: breaks down gluten before it reaches the small intestine. It's not a cure, but in a world where it's near impossible to avoid gluten 100% of the time (due to cross contamination) it is beneficial to use it as a prophylactic in situations where you don't have control over the food prep. 

Best estimates using proper dosed products with AN-PEP is that it can nutralize up to 0.75g of gluten in a single dose. That's roughly an 1/8th a piece of bread. That's enough to minimize reactions to cross contamination. 

Again, AN-PEP is very well established at this point to break down gluten. Where things go wrong is people think they can take it and then eat like they don't have celiac disease. If used for the proper purposes, AN-PEP is pretty effective at guarding against small, incidental gluten exposures. People should still make an effort to avoid gluten as much as they can though, it's not a replacement for a gluten free diet. 

I completely agree with you regarding AN-PEP and thank you for your kind comments. The issue is that some products contain DPP-IV and these do not work.

Here is a paper that shows how effective AN-PEP is and how ineffective DPP-IV is

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452362/

[Fenrir]

1 minute ago, docaz said:

I completely agree with you regarding AN-PEP and thank you for your kind comments. The issue is that some products contain DPP-IV and these do not work.

Here is a paper that shows how effective AN-PEP is and how ineffective DPP-IV is

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452362/

Got ya! I read a little more into your post than you meant. Most people lump these supplements all into the same group but AN-PEP is different than the others. 

Although, AN-PEP supplements can also be suspect because most of the manufactures under dose their products. From my research and reading of studies it seems that 300mg Aspergillus Niger is required to be effective, many of the supplements only contain 100-200mg. They would still work if you just took 2x the dose on the bottle but at their recommended dose they might not be effective.