TTG test going up after two years diagnosis and very strict gluten free diet

[Gretchen Dabek]

I was diagnosed 2 years ago with celiac. I had stomach problems for about one year prior. My TTG test was 180. I had and endoscopy that showed mild damage to villi. Went on gluten free diet. Still symptomatic. Had another endoscopy 6 months later showing villi now normal. TTG numbers still elevated though going down a bit. After feeling better and then symptoms returned I got another tTG test and number had gone up. I went on a very strict Fasano diet, no processed foods, only grain was brown rice, meat, vegetables and fruit for 3 months. I just had a lab test and tTG is up to 180 again. I am depressed and at my wits end. The only positive thing is that I feel great and my vitamin levels are normal. Any ideas?

[Scott Adams]

It sound like you’ve eliminated processed foods and looked closely at your diet for sources of possible contamination. Have you looked at your lotions, cosmetics, conditioners, shampoos, etc. for wheat? Also, do you ever eat outside your home, especially food from restaurants?

[Gretchen Dabek]

Thank you for responding. I have eliminated processed foods and the only gluten free grain I eat is brown rice. I buy certified gluten free lipstick and gluten free supplements. I will take a look at my lotions. I think I am using brands that are gluten free. 

I never eat out anymore.

[Scott Adams]

Perhaps be sure your brown rice is not the culprit. Although it’s unlikely, grains can be cross contaminated in areas where they package them, during shipping from the fields, etc. If possible use a brand that says Gluten-Free on it or even better certified gluten-free.

[Gretchen Dabek]

Thank you. The brand does say gluten free, but I was wondering about it because the last three months on this very strict gluten-free diet I have eaten an extraordinary amount of rice. This is something I will investigate.

[DJFL77I]

That makes no sense . Your villi would not have healed if the immune response was still on

Might be some other issue causing antibody levels to stay high 

[Gretchen Dabek]

I think this too. My gastroenterologist kind of shrugs this off. He doesn't have any answers. I am with Kaiser and my doctor has done all the protocols for celiac. My DNA test said I had one gene for celiac, but that it was very slight probability of me getting it. As I said my doctor did two endoscopies, so I think he feels he has done what he can. Any ideas what to do next?

[Scott Adams]

It’s strange that your villi recovered but you still have high antibody levels. You didn’t mention your symptoms...are you still having symptoms consistent with gluten exposure?

I was thinking that perhaps you could go grain-free for a time, then retest, but this is not easy to do.

[Posterboy]

On 1/15/2021 at 9:37 PM, Gretchen Dabek said:

I was diagnosed 2 years ago with celiac. I had stomach problems for about one year prior. My TTG test was 180. I had and endoscopy that showed mild damage to villi. Went on gluten free diet. Still symptomatic. Had another endoscopy 6 months later showing villi now normal. TTG numbers still elevated though going down a bit. After feeling better and then symptoms returned I got another tTG test and number had gone up. I went on a very strict Fasano diet, no processed foods, only grain was brown rice, meat, vegetables and fruit for 3 months. I just had a lab test and tTG is up to 180 again. I am depressed and at my wits end. The only positive thing is that I feel great and my vitamin levels are normal. Any ideas?

Gretchen,

You should also consider SIBO.

It shows up in treated and Untreated Celiac's....

SIBO often happens when we get low in Stomach Acid.  Start taking you a B-complex with your meals.

And see if you don't start to feel better after 2 to 3 months.

Here is the research on SIBO in Celiac's...

Also research about low stomach acid.....

Low/NO stomach acid is common in Celiac's too!

See this research entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

Try the baking soda test to see if your Stomach Acid is low but going undiagnosed...

https://drjockers.com/5-ways-test-stomach-acid-levels/

Here is the research that explains how Baking Soda might help a Celiac?

I hope this is helpful but it is not medical advice.

Posterboy,

[Gretchen Dabek]

Thank you. I really appreciate all the support on this forum. I will check out all your links.

[DJFL77I]

Sibo has nothing to do with antibody levels 

[Posterboy]

2 hours ago, JamesDelaney said:

Sibo has nothing to do with antibody levels 

James,

I understand why you think this.....because it is not talked about a lot....nor is it well understood....

but SIBO is a valid "Differential Diagnosis" for on going GI symptom's in Non Responsive Celiac's....

Celiac.com wrote a nice article about it 12+ years ago......but each generation must educate the next.

https://www.celiac.com/celiac-disease/celiac-disease-treatment-and-continuing-symptoms-by-mary-anderies-r1108/

Not everything is caused by Gluten....though it MOSTLY is in Celiac's....

Here is some other research about it...

https://www.bidmc.org/centers-and-departments/digestive-disease-center/services-and-programs/celiac-center/celiacnow/nutrition-and-the-gluten-free-diet/nutritional-considerations-on-the-gluten-free-diet/small-intestinal-bacterial-overgrowth/level-3#:~:text=SIBO%20is%20a%20common%20complication%20of%20celiac%20disease,of%20gluten%20exposure%2C%20SIBO%20testing%20should%20be%20considered

See this BMJ article also entitled "Small bowel bacterial overgrowth in coeliac disease: a cause of presenting symptoms"

https://gut.bmj.com/content/60/Suppl_1/A83.2

The University of Chicago recently did a nice study on mice to predict who would develop Celiac disease....

They explain it well that it is "A complex interplay of contributing factors" that triggers Celiac disease....

SIBO is one of those factors that is often overlooked....as well as Low/NO stomach acid...

quoting from the article.....they note even a virus could be a trigger.

"Based on studies in celiac disease patients, Jabri and her colleagues have proposed that signs of tissue distress associated with high levels of an inflammatory protein called IL-15 in the lining of the small intestine were required to cause villous atrophy, the hallmark of the disease.

Certain environmental factors may come into play as well. In 2017, for example, Jabri and her team discovered that a common and relatively harmless virus can cause changes to the immune system that set the stage for celiac. All of these factors work together to trigger an autoimmune response when someone ingests gluten that causes villous atrophy."

That is why EBV has been shown to be a trigger in some Celiac's....

https://medicalxpress.com/news/2018-04-epstein-barr-virus-linked-diseases.html

I am just trying to generate ideas for Gretchen so they will know what else to consider.

For those Celiac's who don't improve on a gluten free diet both SIBO and Low/NO Stomach acid should be considered...

Quoting again from the University of Chicago article...

"Even while maintaining a strict gluten-free diet, 40% of celiac disease patients still show signs of inflammation and villous atrophy, or damage to the villi, the small, finger-like protrusions in the small intestine that help absorb nutrients. Therefore, treatments that can reverse or prevent the disease are greatly needed to improve quality of life for people with celiac."

I wrote a Posterboy blog post about my Low/NO stomach acid going UNdiagnosed and or Misdiagnosed maybe it will help you to read it...

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

I can only tell you IT helped me!

You might also consider taking some Tryptophan recent research shows it can help Celiac's...

https://www.gutmicrobiotaforhealth.com/gut-microbes-in-celiac-disease-show-impaired-metabolism-of-dietary-tryptophan-according-to-researchers-at-mcmaster-university/ 

Again, I hope this is helpful but it is not medical advice.

As always,  2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

[knitty kitty]

Gretchen,

Welcome to the forum!

I found some interesting information that I hope is helpful.

This study found that Cow Milk Protein can cause an increase in IgA Ttg even when abstaining from gluten......

"Anti-tissue transglutaminase antibodies not related to gluten intake"

https://www.sciencedirect.com/science/article/pii/S2341287918301601

I've read another study that found casein, rice protein, maize (or corn), chicken meat, and yeast have proteins that resemble the gluten protein enough that they will trigger an autoimmune response.  So, maybe all that brown rice was a bad idea.    

   Continued high IgA tTg levels often indicate another autoimmune disease such as diabetes and autoimmune thyroid problems.  Diabetes and thyroid problems frequently occur with Celiac Disease and are related to Thiamine deficiency. 

   Since you have been eating "an extraordinary amount of rice"  lately, you may have become low on thiamine (Vitamin B 1).  For every 1000 kcal of carbohydrates you need 0.5 mcg of thiamine to process those carbohydrates into energy.  High calorie malnutrition occurs when you don't have enough thiamine to process the amount of carbohydrates consumed. 

  Your blood tests for vitamins may be within "normal" limits but those limits are set too low.  Blood tests for vitamin levels are not accurate.  Most vitamins are used inside cells, so circulating blood levels don't accurately show the amount of vitamins inside cells.  Erythrocyte transketolase is the best for detecting thiamine deficiency.  It measures how much thiamine is being utilized.  For which vitamins did your doctor test?  

   I take extra thiamine in the form of lipothiamine and benfotiamine.  Benfotiamine has anti-inflammatory properties and helps with diabetes.

"Anti-Inflammatory Effects of Benfotiamine are Mediated Through the Regulation of Arachidonic Acid Pathway in Macrophages"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249497/#!po=33.6207

 

And an interesting study... too bad they didn't read the previous study......

"What about COVID-19 and arachidonic acid pathway?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7314570/#!po=28.8462

 

There's this study that found some viruses can trigger an immune response....

"Anti-transglutaminase antibodies in non-coeliac children suffering from infectious diseases"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/

And one case study that found SIBO to be the problem for one patient.....

"All that glitters is not always gold"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3926449/

 

I hope these will be of help.

Knitty Kitty

 

 

17 hours ago, Gretchen Dabek said:

I think this too. My gastroenterologist kind of shrugs this off. He doesn't have any answers. I am with Kaiser and my doctor has done all the protocols for celiac. My DNA test said I had one gene for celiac, but that it was very slight probability of me getting it. As I said my doctor did two endoscopies, so I think he feels he has done what he can. Any ideas what to do next?

 

[Gretchen Dabek]

16 hours ago, Scott Adams said:

It’s strange that your villi recovered but you still have high antibody levels. You didn’t mention your symptoms...are you still having symptoms consistent with gluten exposure?

I was thinking that perhaps you could go grain-free for a time, then retest, but this is not easy to do.

I am symptom free for the last month.

[Scott Adams]

@knitty kitty this is very interesting, and we'll do a summary of this research:

Quote

"Anti-tissue transglutaminase antibodies not related to gluten intake"

https://www.sciencedirect.com/science/article/pii/S2341287918301601 

The patient in this new article we published today also experienced high ttg until they also eliminated dairy:

 

[Gretchen Dabek]

2 hours ago, Scott Adams said:

@knitty kitty this is very interesting, and we'll do a summary of this research:

The patient in this new article we published today also experienced high ttg until they also eliminated dairy:

 

 

[Gretchen Dabek]

I am going to try the no dairy regimen. Difficult because I eat lactose free yogurt and hard cheese which is almost completely lactose free.  I never thought about the milk protein being an issue. Thank you.

[DJFL77I]

One of the moderators here described exactly what you are describing.  She said her villi healed but her antibody levels are still elevated. You should ask her. Cyclelady or something like that 

[Gretchen Dabek]

How do I contact this person? I am new to this forum.

[knitty kitty]

I believe you're referring to Cycling Lady.  She was found to have autoimmune gastritis which was elevating her antibodies.  

 

[Gretchen Dabek]

28 minutes ago, knitty kitty said:

I believe you're referring to Cycling Lady.  She was found to have autoimmune gastritis which was elevating her antibodies.  

 

Thank you 

[tessa25]

You have about 15 feet of small intestine. Endoscopy sees the first foot. So you can still have damage that has not yet healed further along the pipe.

If you never eat outside of your home you can buy those Ez gluten test strips and test everything you consume. If you do eat away from home you could be getting glutened out there.

In my case all solid food causes my numbers to increase gradually. Perhaps you can take the blood test more frequently to find the culprit.