question on TTG level

[Karynkat]

Hi there! I am having my gastroscopy tomorrow. My TTG level was 19u/ml. Is this a high number on my report it says <12 is positive, everything I read says 6.4 or greater is positive for celiac disease.  I am so worried my biopsy is going to be negative. I got sick over a year ago with food poisoning and I am still sick. All symptoms of celiac and I have severe sensitivity to eggs.  I just want to move on with my life, kick gluten to the curb and feel better.

[Scott Adams]

Welcome to the forum!

So each lab might have a different scale, as they may use a different company's test, and if I understand your email correctly, you had a tTG score of 19 and anything greater than 12 is considered positive, right?

If this is the case, then it is a solid positive blood test result for celiac disease, and the tTG test is the most specific and accurate test for celiac disease. Hopefully you have been (and were) eating gluten daily throughout the testing process, because if you go gluten-free before all tests are completed you could end up with false negative results.

[trents]

Welcome to the forum, Karunkat!

I think you meant to type >12 is positive instead of <12 is positive. On that scale basis, 19 is not a strong positive but it is not equivocal either. Every lab uses custom scales for the antibody tests. There is no industry standard.

I also have a sensitivity to eggs but I find I can eat them occasionally and in limited amounts without an issue. I can no longer eat eggs that are scrambled or fried but I can eat a poached egg without issue. The steaming process of poaching changes the egg protein. I try to eat one poached egg every other day and that seems to work for me. I bought one of those plastic, non stick egg poachers which makes them easy to fix: https://www.amazon.com/Nordic-Ware-64702-Microwave-Poacher/dp/B00004W4UR/ref=sr_1_11?crid=9GSHR70NFUVG&keywords=egg+poacher+pan+nonstick+2+eggs&qid=1680549923&sprefix=egg+poacher%2Caps%2C191&sr=8-11

It is typical for celiacs to develop sensitivities to some non gluten foods because of the "leaky gut" syndrome that accompanies celiac disease. Larger than normal protein fractions slip past the small bowel membrane into the blood stream where they are misinterpreted by he immune system as invaders. Egg sensitivity is a common one among celiacs as is dairy and oats (even gluten free oats). But it can be almost anything.

Occasionally, we do see those with positive antibody tests receiving negative biopsies. Sometime this is because the GI doc did not sample enough areas. The damage to the villi can be patchy.

[Kathy8183]

Ttg iga test result a year ago was over 250 and I've followed gluten-free diet since, diligently.

This week it's over 59 which is improved but still positive. I can't get any meaningful information out of the gastroenterologist except to admonish "stay off gluten and retest in 3 months" . That has no meaning for me. Aside from celiac, can that number represent other autoimmune issues? These tests are confusing but the doctors are useless at helping us understand them when they just brush us off like that. I know I'm not getting gluten. My weight has come back to normal after 4 years of losing and not being able to gain. My energy has been excellent. How concerned should I be with this week's results and what does the Dr think will change in 3 months? I can't get a response from him and that's creating unnecessary stress for me. 

[trents]

Kathy, yes, there are some other foods (eg., the protein casein in dairy), some other medical conditions (e.g. Crohn's Disease) and even some medications (e.g. NSAIDs and a certain blood pressue med) that can cause inflammation in the small bowel villous lining that mimics celiac disease. Do a search, on "What things besides celiac disease can cause elevated tTG-IGA?" There is an article on this forum somewhere dealing with this question.

[Kathy8183]

Thank you! 

[trents]

To be honest, what I'm not sure about is if non celiac inflammation/villi blunting will result in elevated tTG-IGA or if elevated tTG-IGA is specific to the inflammatory reaction caused by gluten.

Edited April 5, 2023 by trents

[RMJ]

2 hours ago, Kathy8183 said:

Ttg iga test result a year ago was over 250 and I've followed gluten-free diet since, diligently.

This week it's over 59 which is improved but still positive. I can't get any meaningful information out of the gastroenterologist except to admonish "stay off gluten and retest in 3 months" . 

My Ttg level normalized in a year but took me 6 years to get my DGP IgA level down to the normal range.   I thought I was eating gluten free but to be in the normal range, if I eat processed foods they have to be certified gluten free. 

If your result was reported as >250, who knows how high it really was!  You’ve gotten it down a lot and your symptoms have improved - good job.  I don’t know that a retest in 3 months is useful, maybe 6 months? As long as the level continues to decrease that’s what you want to see.

[Kathy8183]

1 hour ago, trents said:

To be honest, what I'm not sure about is if non celiac inflammation/villi blunting will result in elevated tTG-IGA or if elevated tTG-IGA is specific to the inflammatory reaction caused by gluten.

 I've read differing opinions on that and haven't seen a consensus. Some say many things can elevate the results but I haven't heard from experts. If that's true how can one ever know if they're getting gluten by mistake? 

I also have hypothyroidism which was diagnosed by family Dr long before celiac disease. He never saw the possible connection.  I wonder if my  tTG-IGA is still elevated because of the hypothyroidism which I assume isn't going to go away even though I'm off gluten.  And what about seasonal allergies.? I'm extremely congested from the tree pollen and was the day of my test. Does that impact  tTG-IGA? The test is the gold standard but how reliable is it for tracking progress if other things can impact it? So confusing. 

[Kathy8183]

Here's one to ponder! In August I ended up in ER with a severe diverticulitis perforation, so had emergency surgery. Ten inches of my SMALL intestine was removed and resectioned. Diver is rare in the small intestine. Did I really have diver or did gluten erode my tissue away? Surgeon of course goes with diverticulitis but I wonder. Also I'm wondering how the impact of major surgery just months ago, a 10 inch shorter small intestine creating it's own digestive challenges given the jejunum is what lost the 10 inches impacts test numbers. It's a science way above my grasp. 

[Kathy8183]

1 hour ago, RMJ said:

My Ttg level normalized in a year but took me 6 years to get my DGP IgA level down to the normal range.   I thought I was eating gluten free but to be in the normal range, if I eat processed foods they have to be certified gluten free. 

If your result was reported as >250, who knows how high it really was!  You’ve gotten it down a lot and your symptoms have improved - good job.  I don’t know that a retest in 3 months is useful, maybe 6 months? As long as the level continues to decrease that’s what you want to see.

I agree and thanks. I see no purpose in another test so soon so I'm holding out for longer given I'm not getting answers to my questions. 

[Karynkat]

Thanks for the reply all, Yes greater than twelve is positive.

 

The scope was done yesterday. Told to go on a strict gluten-free diet. villi looked normal but I have a follow up on the 25th.  We will see.

[trents]

25 minutes ago, Kathy8183 said:

And what about seasonal allergies.? I'm extremely congested from the tree pollen and was the day of my test. Does that impact  tTG-IGA? The test is the gold standard but how reliable is it for tracking progress if other things can impact it? So confusing. 

Allergies engage an entirely different immune system path so that would not impact tTG-IGA. Celiac disease, hashimoto's, etc. are autoimmune conditions. I would think diverticular disease of the bowel would not show the same kind of damage as villi blunting. With diverticular disease, there are little pockets that develop in the bowel lining that trap food and become infected. It's like having zits in your bowel.

Edited April 5, 2023 by trents

[Kathy8183]

You answered my question so forgive the additional one. 

Edited April 5, 2023 by Kathy8183
Deleting question.

[trents]

Hashimoto's disease results in hypothyroidism. Hashimoto's is an autoimmune disorder where the cells of the thyroid are attacked by the immune system, leading to death of the cells and diminished production of thyroid hormone.

[lindalee]

On 4/5/2023 at 1:39 PM, trents said:

Hashimoto's disease results in hypothyroidism. Hashimoto's is an autoimmune disorder where the cells of the thyroid are attacked by the immune system, leading to death of the cells and diminished production of thyroid hormone.

so if my thyroid is high then i have Hashimoto's?  Just found out I have high thyroid and started taking levothyroxne.

[trents]

20 minutes ago, lindalee said:

so if my thyroid is high then i have Hashimoto's?  Just found out I have high thyroid and started taking levothyroxne.

No. Hashimoto's disease means you have hypothyroidism (level of thyroid hormone is too low). Too much thyroid hormone is hyperthyroidism.

[lindalee]

48 minutes ago, trents said:

No. Hashimoto's disease means you have hypothyroidism (level of thyroid hormone is too low). Too much thyroid hormone is hyperthyroidism.

thank you.  Just found out i have hypo and low sodium and chloride.

[knitty kitty]

@lindalee,

You may have nutritional deficiencies that are causing hypothyroidism.  

Thiamine Vitamin B 1 is used by the thyroid.  Hypothyroidism can occur in Thiamine deficiency.  

Supplementing with Thiamine could help get your thyroid working better.  

A good B Complex would help correct nutritional deficiencies that develop in CeD.