Strictly adhering to gluten-free diet but TTg 150!

[Katkits60]

Hi, I was diagnosed coeliac oct 2019 and have been strictly gluten-free since. I understand cross contamination, I don’t eat ‘may contain’ and am religious with my food, as is my family who strictly adhere to my gluten-free environment needs. I found out my latest ttg test result was 150, down from 250 in February, but it’s still 10 x what is Normal. I’m really concerned  that a)there is another underlying issue. I don’t feel the doctors believe me but I am extremely knowledgeable and strict about all food and drink consumed. Does anyone know of what any possibility may be or how I go about investigating other issues causing high ttg, I’m very worried there is damage going on, the doctor hasn’t suggested a solution, just keep repeating my tests so I don’t think they believe me? Anyone else experiencing this or can advise? Thanks 

[cristiana]

Hello Katkits60

Those sort of results are always discouraging, especially if you are trying to do everything right.

My own story is similar.  I my tTG was over100 back in 2013, had another test a couple of years later and was still in the 80s, and like you, despite being incredibly careful, it took ages to come down to normal levels, in fact, only in the past few months did it go down to 9.

Eating out is a big source of cross contamination, even if a restaurant states they have some gluten free dishes they often aren't, it can get in so easily if there is gluten about.  If you share a kitchen with gluten eaters that might be the issue.  We did have a very old dishwasher that left residue, and that I am sure was a source of contamination.  Also, when I shared an oven.  When we needed a replacement oven we decided that I should use the bottom oven only, the family use the top, I think that helped.  Other sources can be in supplements.

These are just some ideas of where gluten might be sneaking in.

But my own gastroenterologist was never worried about me, he just said so long as my levels were going down, he was happy.  It sounds like your doctors are of the same view.

I wonder, are you still consuming oats by any chance?

Cristiana

 

 

Edited July 29, 2022 by cristiana

[trents]

Do you still consume dairy and oats (even gluten free oats)?

[trents]

I would also suggest you talk to your doctor about getting on short-term immuno-suppressant therapy with prednisone or something similar. Sometimes that will quiet down an over reactive immune system and put you on the path to healing.

[RMJ]

Antibodies don’t disappear instantly when you stop ingesting gluten.  250 to 150 in five months is a wonderful decrease and in line with what scientists call the half life of an antibody. How high was your TTG when diagnosed?  Has it been going down steadily?

 

 

[plumbago]

3 hours ago, trents said:

Do you still consume dairy and oats (even gluten free oats)?

The cited article is great to know about, but wasn't OP's original complaint about high TTG results not flattened villi? I was going to suggest ARBs (a class of medication to lower high BP), but then I realized ARBs probably don't impact TTG (but do impact villi). There are other conditions that can impact TTG like Crohn's but we probably would have heard about that in her original post.

Plumbago

 

[trents]

4 hours ago, plumbago said:

The cited article is great to know about, but wasn't OP's original complaint about high TTG results not flattened villi? I was going to suggest ARBs (a class of medication to lower high BP), but then I realized ARBs probably don't impact TTG (but do impact villi). There are other conditions that can impact TTG like Crohn's but we probably would have heard about that in her original post.

Plumbago

 

This is something that has always confused me. Can villi be damaged by other factors besides gluten and not give off tTG-iga antibodies. Is it only the inflammation caused by gluten ingestion or can any inflammatory process that damages the villi produce tTG-IGA antibodies? And if it's only gluten, then why is tTG-iga positive not considered a lock for celiac disease?

[plumbago]

1 minute ago, trents said:

This is something that has always confused me. Can villi be damaged by other factors besides gluten and not give off tTG-iga antibodies. Is it only the inflammation caused by gluten ingestion or can any inflammatory process that damages the villi produce tTG-IGA antibodies? And if it's only gluten, then why is tTG-iga positive not considered a lock for celiac disease?

All good questions. I wish we could convene a panel of broadly representative people (doctors, nurses, scientists, patients, etc etc) to have our questions answered or generate a discussion.

[trents]

1 minute ago, plumbago said:

All good questions. I wish we could convene a panel of broadly representative people (doctors, nurses, scientists, patients, etc etc) to have our questions answered or generate a discussion.

Operating on the assumption that anything that causes inflammation of the villi would produce tTG-IGA antibodies, e.g., Crohns, I linked that article for OP in my above post.

[Kate333]

Hi Katkits60.  I share your frustration, but Cristiana's and Trents' encouragement are spot on.  It's the overall trend (downward) that really matters, so try to not get discouraged!

It can take awhile to reach the "sweet spot" of normal range, esp. for older adults.  Your name mentions 60, so I assume you are over that age?  What was your TTG level at diagnosis?  In my case, my highest TTG blood test showed 224 at diagnosis in late 2019 and didn't normalize until earlier this year in May.  Like you, I thought I was doing EVERYTHING humanly possible to avoid G, but my doc thought I was still getting somehow getting exposed to G.  At first diagnosis, I naively trusted processed/packaged foods labeled "gluten-free" or "certified gluten-free" and occasionally ate at restaurants advertising gluten-free menus.  Only when I stopped eating ALL processed foods and only ate fresh meat, veggies, fruits and stopped eating out did my G antibody numbers really start to rapidly decline (by about 50% each time I was tested every 3-4 months).    So, I concluded that those food manufacturer labels and restaurants were not accurate, shouldn't be trusted, because there is no real regulation to verify their accuracy. 

I hope this helps reassure you a bit.  Good luck in your healing journey.  You can do it!!

  

[knitty kitty]

10 hours ago, Katkits60 said:

Hi, I was diagnosed coeliac oct 2019 and have been strictly gluten-free since. I understand cross contamination, I don’t eat ‘may contain’ and am religious with my food, as is my family who strictly adhere to my gluten-free environment needs. I found out my latest ttg test result was 150, down from 250 in February, but it’s still 10 x what is Normal. I’m really concerned  that a)there is another underlying issue. I don’t feel the doctors believe me but I am extremely knowledgeable and strict about all food and drink consumed. Does anyone know of what any possibility may be or how I go about investigating other issues causing high ttg, I’m very worried there is damage going on, the doctor hasn’t suggested a solution, just keep repeating my tests so I don’t think they believe me? Anyone else experiencing this or can advise? Thanks 

Have you tried the Autoimmune Protocol diet?  It was developed by a doctor with Celiac for herself and her children, Dr. Sarah Ballantyne.

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Following the AIP diet, my inflammation levels decreased and I felt much improved.

This article might be of interest to you.  This study found probiotics helpful in lower ttg levels in children.

Can a Synbiotic Supplementation Contribute to Decreasing Anti-Tissue Transglutaminase Levels in Children with Potential Celiac Disease?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354869/

[plumbago]

8 hours ago, trents said:

Operating on the assumption that anything that causes inflammation of the villi would produce tTG-IGA antibodies, e.g., Crohns, I linked that article for OP in my above post.

What I found on the ARBs causing villi damage indicated that TTG levels were normal.

Coeliac disease enteropathy and symptoms may be aggravated by angiotensin receptor blockers in patients on a gluten‐free diet
Neil O'Morain,corresponding author 1 Eileen Shannon, 1 John McManus, 1 Vanessa Warner, 1 Hilary Leeson, 1 Helen O'Donovan, 1 Brian Egan, 2 and Valerie Byrnes 1

Angiotensin receptor blocker‐associated enteropathy (ARB‐e) is an increasingly recognised clinical entity with symptoms and histological findings identical to coeliac disease (celiac disease). There is evidence to suggest immune‐mediated mucosal injury in ARB‐e with a high prevalence of DQ2/DQ8; however, as IgA anti‐tissue transglutaminase (anti‐TTG) is usually negative, an insult other than TTG‐mediated injury is suspected. The impact of ARBs on disease activity in patients with celiac disease is not known.

Edited July 30, 2022 by plumbago

[cristiana]

8 hours ago, Kate333 said:

At first diagnosis, I naively trusted processed/packaged foods labeled "gluten-free" or "certified gluten-free" and occasionally ate at restaurants advertising gluten-free menus. 

I think eating out is particularly high risk.   I found a largely gluten free local cake shop which seemed to be doing absolutely everything right, with only a miniscule range that contained gluten, and an owner who actually has coeliac disease.  Yet I went to one of their stalls at a local fair recently and they were mixing up the tongs when serving from both product lines.   I really love their cookies so ate one regardless but did pay for it later with a sore stomach.   Just this sort of thing takes its toll, particularly over time.

 

[Katkits60]

22 hours ago, trents said:

Do you still consume dairy and oats (even gluten free oats)?

Not oats but they are really hard to avoid in gluten-free processed cookies and yes dairy such as cheese, butter, lactose free milk. 

[Katkits60]

22 hours ago, cristiana said:

Hello Katkits60

Those sort of results are always discouraging, especially if you are trying to do everything right.

My own story is similar.  I my tTG was over100 back in 2013, had another test a couple of years later and was still in the 80s, and like you, despite being incredibly careful, it took ages to come down to normal levels, in fact, only in the past few months did it go down to 9.

Eating out is a big source of cross contamination, even if a restaurant states they have some gluten free dishes they often aren't, it can get in so easily if there is gluten about.  If you share a kitchen with gluten eaters that might be the issue.  We did have a very old dishwasher that left residue, and that I am sure was a source of contamination.  Also, when I shared an oven.  When we needed a replacement oven we decided that I should use the bottom oven only, the family use the top, I think that helped.  Other sources can be in supplements.

These are just some ideas of where gluten might be sneaking in.

But my own gastroenterologist was never worried about me, he just said so long as my levels were going down, he was happy.  It sounds like your doctors are of the same view.

I wonder, are you still consuming oats by any chance?

Cristiana

 

 

Thanks Cristian, just concerned about hidden damage while ttg is still 10 x normal

[cristiana]

1 minute ago, Katkits60 said:

Thanks Cristian, just concerned about hidden damage while ttg is still 10 x normal

I wonder, have you had an endoscopy since you were diagnosed - sorry, I may have missed this in your posts?   

 

 

[Katkits60]

11 hours ago, knitty kitty said:

Have you tried the Autoimmune Protocol diet?  It was developed by a doctor with Celiac for herself and her children, Dr. Sarah Ballantyne.

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Following the AIP diet, my inflammation levels decreased and I felt much improved.

This article might be of interest to you.  This study found probiotics helpful in lower ttg levels in children.

Can a Synbiotic Supplementation Contribute to Decreasing Anti-Tissue Transglutaminase Levels in Children with Potential Celiac Disease?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354869/

Thank you, I have ordered the book but it will be really life changing to elimate some everyday foods I eat such as potato, cheeses, eggs. These are staples to me, I also love wine which looks like that may be a no no now

I certainly need to read more and understand what is happening to me with these high levels and what I can do . I live in England and don’t think this type of food diet is widely known 

Just now, cristiana said:

I wonder, have you had an endoscopy since you were diagnosed - sorry, I may have missed this in your posts?   

 

 

Not since the endoscopy that confirmed my coeliac diagnosis 

[cristiana]

That's interesting that you live in England because I do too, and none of my fellow coeliac friends that live in my area were ever told how high their tTg's were, beyond "over 100" at diagnosis.   I would love to have known what mine were at diagnosis, I suspect they were stratospheric. 

Sorry, again, if I have missed this, were you given that figure when you were diagnosed? 

[knitty kitty]

2 hours ago, Katkits60 said:

Thank you, I have ordered the book but it will be really life changing to elimate some everyday foods I eat such as potato, cheeses, eggs. These are staples to me, I also love wine which looks like that may be a no no now

I certainly need to read more and understand what is happening to me with these high levels and what I can do . I live in England and don’t think this type of food diet is widely known.

Katkits60, 

This AIP diet is like a vacation for your digestive system.  Yes, the AIP diet is very different from how we're used to eating, but it is very worthwhile.  

If you sprained your ankle or hurt your arm, you wouldn't go out and jog or lift weights.  No, you would go easy, get some rest, take time off your regular scheduled activities. 

Our digestive systems need the same care.  Fresh veggies (or single ingredient frozen vegetables) and grass fed beef.  Easy to digest soups and stews.  These changes give our digestive systems a chance to recuperate.  Even the microbiota in our intestines will change away from the SIBO and carbohydrate fermenting types to more beneficial types of bacteria which are noninflammatory.  

And remember to take a B Complex supplement.  B vitamins are added to gluten containing products to replace those lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins.  They are empty calories without nutritional value.  

The B Complex vitamins are needed for the repair and proper functioning of our bodies.  They are water soluble, so any excess is easily flushed away.  Discuss supplementation with your doctor or nutritionist.

Your body will love you for it!

[Kate333]

Katkits60, I also forgot to mention how important it is to become familiar with "hidden" gluten ingredients sources.  I say hidden because so many food companies and restaurants routinely use G as a "filler" substance and it not always clearly labeled.  For example, G is used in many canned soups, restaurant and canned soups and even scrambled eggs (to make them fluffier, and also in condiments and salad dressings to make the products appear thicker.  Also, product labeling is often unclear and can be misleading.  For example, the term "food starch" is suspect because that substance can contain wheat.   Also, CC is a big risk if products labeled gluten-free are also processed in a shared facility with G containing products, you can get CC (nuts and oats are good examples). 

When I was first diagnosed, I knew NOTHING about these hidden risks thus did not know how to avoid them.  I was just given a list of "obvious" G sources to avoid (bread products, pasta, donuts/bagels/croissants, pancakes, etc.).  IMO understanding that is the key to avoiding both obvious G and CC and rapidly decreasing your bloods numbers back to the normal range.   Perhaps someone here will have an updated list of foods containing "hidden" G.  Also, another great resource is the website verywellfit.com which contains a massive number of articles written by Jane Anderson, a celiac expert.