Positive Ttg Iga test after years gluten-free

[GINAGF]

After 5 years of eating gluten free and always have a negative result on my annual Ttg IGA blood test, always 1. I had my first positive result today. It was a 12. Does this mean I'm getting gluten in my diet and not realizing it? Can it mean anything else? 

In the past my reaction to gluten has been horrible and noticeable, so I'm shocked this is my test result.

Anyone with a similar experience?

[trents]

I would ask for a repeat on that test as there can be false positives:

"The accuracy of blood tests can depend on the laboratory and the manufacturer, the review found. It points to a 2009 study in which 150 samples from patients with known celiac disease status were used to compare the accuracy of tTG tests at 20 laboratories in the U.S. and Europe. Sensitivity was less than 75 percent at four laboratories, the review notes. A similar 2012 study found differences in the performance of tTG tests across various manufacturers." https://www.beyondceliac.org/research-news/blood-tests-to-diagnose-celiac-disease-under-scrutiny/

I would also review the ingredient labels of the prepared food products in your pantry that you have been consuming of late. Also check for gluten in any meds or supplements you take. Manufacturers can and do change formulations.

How long has it been since you had an endoscopy?

And welcome to the community!

Edited July 21, 2020 by trents

[GINAGF]

I haven't had a scope since 2017. I have one scheduled for next week now.

I started taking pepcid ac since June at recommendation from my doctor. I'm wondering if that's the culprit. I've lost 10 pounds since June. After maintaining the same weight for a few years.

 

[Scott Adams]

Be sure that you're eating gluten daily until all testing has been completed. If you start a gluten-free diet before tests for CD it could lead to false negative results.

Weight loss is a common symptom of celiac disease.

[cyclinglady]

55 minutes ago, Scott Adams said:

Be sure that you're eating gluten daily until all testing has been completed. If you start a gluten-free diet before tests for celiac disease it could lead to false negative results.

Weight loss is a common symptom of celiac disease.

I think she has celiac disease.  She had an elevated TTG after years of having normalized results. 

[cyclinglady]

Why the Pepcide?  
 

At the time of my repeat endoscopy, my DGP IgA was greatly elevated (never ever had a positive on the TTG or EMA).   The scope revealed a healed, healthy small intestine, (GI went in deep and you could see the villi on his scope), but found gastritis.  Biopsies revealed Chronic Autoimmune Gastritis.  AIG causes low acid, making it difficult to digest food.  Taking acid reducers would not have been the right treatment.    I had indigestion, some GERD-like symptoms.  I Thought that my celiac disease was flaring, but after a few months of the “Fasano strict gluten-free diet”, I knew something was off.  The scope revealed more than the AIG, it proved that I was not crazy!  
 

My focus is to calm  down the inflammatory process.  AIG usually leads to iron and B-12 deficiencies and cancer.
 

An elevated TTG can also be due to other autoimmune diseases.  

 😥

Edited July 21, 2020 by cyclinglady

[trents]

Yes, you don't want to purposely expose yourself to gluten before the followup endoscopy. The purpose of the followup would be to see if the villi have healed.

I would be concerned if after 2+ years of maintaining a steady weight that you lose 10 lbs. in three months when nothing else about your lifestyle has changed except the addition of Pepcid AC. 

Pepcid AC does not contain gluten as an intentional ingredient: "Gluten or gluten-containing grains are not ingredients in the product. However, we do not currently test our final products for gluten, and we cannot confirm that the product or any ingredients in the product are free of gluten. We strongly recommend that if you have any form of gluten intolerance or sensitivity, you should consult your doctor before taking any medication, since he or she is most familiar with your medical history." But it is possible that there is unintentional cross contamination as with many other products that are not certified gluten-free, especially those that state they are manufactured in a facility that processes other items that may contain gluten.

Why did your physician prescribe Pepcid AC? Have you developed GERD?

[Posterboy]

2 hours ago, GINAGF said:

I haven't had a scope since 2017. I have one scheduled for next week now.

I started taking pepcid ac since June at recommendation from my doctor. I'm wondering if that's the culprit. I've lost 10 pounds since June. After maintaining the same weight for a few years.

 

GinaGF,

Here is the research you  are looking for...

https://celiac.org/about-the-foundation/featured-news/2017/05/medication-use-associated-persistent-villous-atrophy/

I will quote their conclusion/summary paragraph about your concerns....

"Most interesting was the relationship between the use of certain classes of medications with the presence of persistent villous atrophy. Acid reducing medication (PPIs), non-steroidal anti-inflammatories (NSAIDs), and certain types of mood medication (SSRIs) all seemed to be associated with persistent villous atrophy. These are all widely used medications; further study regarding their relationship to delayed mucosal healing is warranted."

I think the article will explain itself.  PPIs lower stomach acid artificially and could be triggering your body to attack itself.

See this article that explains why this might be so....

https://celiac.org/about-the-foundation/featured-news/2017/05/medication-use-associated-persistent-villous-atrophy/

The effect you have suspected has been studied....

Here it is entitled "Use of Proton Pump Inhibitors and Subsequent Risk of Celiac Disease"

Here is the link to the abstract of this study....https://pubmed.ncbi.nlm.nih.gov/24035759/

And here is there conclusion from the study....

"Conclusions: Exposure to antisecretory medications is associated with a subsequent diagnosis of celiac disease. The persistence of this association after excluding prescriptions in the year preceding the celiac disease diagnosis suggests a causal relationship."

I wrote a Posterboy blog post about my experience with low stomach acid being misidiagnosed maybe it will help you.

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

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

Posterboy,

[trents]

Just for the sake of clarity here, GINAGF was diagnosed with celiac disease almost three years previous to starting the use of an H2 blocker. The upcoming endoscopy should provide some helpful information about what is going on with the state of her recovery and perhaps even the unexpected weight loss. 

[GINAGF]

I was diagnosed celiac over 5 years ago. I was using the Johnson & Johnson brand or melaleuca brand of pepcid. I spoke to melaleuca and they told me the product is not gluten free. And the Johnson & Johnson website says they don't test for gluten nor can guarantee it's not in there. So my assumption is the gluten is coming from there, causing the positive blood test result 

[RMJ]

Just an idea: Is the positive vs negative cutoff for your recent test the same as the previous ones? Each manufacturer sets their own numerical ranges. 

I think it is a good idea that you’re having another endoscopy. Hope it solves the mystery.

[GINAGF]

9 minutes ago, RMJ said:

Just an idea: Is the positive vs negative cutoff for your recent test the same as the previous ones? Each manufacturer sets their own numerical ranges. 

I think it is a good idea that you’re having another endoscopy. Hope it solves the mystery.

Yes it is the same number cutoffs. 1-3 negative 4-10 weak positive 11+ positive

[Posterboy]

33 minutes ago, trents said:

Just for the sake of clarity here, GINAGF was diagnosed with celiac disease almost three years previous to starting the use of an H2 blocker. The upcoming endoscopy should provide some helpful information about what is going on with the state of her recovery and perhaps even the unexpected weight loss. 

Trents,

The acid reducers could of lowered her stomach acid enough to have triggered another positive for Celiac disease.

The link to low/NO stomach acid was studied 30+ years ago but people don't associate the two any more.

Here is the research about Low/NO stomach acid in Celiac's.

entitled  "Gastric morphology and function in dermatitis herpetiformis and in C(o)eliac disease"

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

And why taking PPIs could trigger another positive test...

This article shows how our antiflammatory state is triggered in the body.

https://www.medicalnewstoday.com/articles/321624#From-inflammatory-to-anti-inflammatory

You don't have to be taking PPIs to have low stomach acid.....

Stress can do the same thing....and is a risk factor for Celiac disease.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

The same effect has bee seen in Heartburn/GERD.

Here is the research on stress and heartburn entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/

We all  know stress kills right.....but it maims us first!

Again I hope this is helpful but it is not medical advise.

Posterboy,

[Kate333]

6 hours ago, GINAGF said:

After 5 years of eating gluten free and always have a negative result on my annual Ttg IGA blood test, always 1. I had my first positive result today. It was a 12. Does this mean I'm getting gluten in my diet and not realizing it? Can it mean anything else? 

In the past my reaction to gluten has been horrible and noticeable, so I'm shocked this is my test result.

Anyone with a similar experience?

Hi Gina.  

My tTG IGA test numbers sharply declined right after I began a gluten-free diet in Jan. this year (from a high of 224 down to 73 in March, then slightly back up to 81 in the latest June blood test).  I was surprised by the jump (even a modest one) because I was expecting/hoping for another decline, hopefully down into the "normal" test range (for my test, it's 14 or less).   I also had weight loss but, in my case, I think IBS, food limits as a learned about gluten-free diets was a huge contributing factor in my case.

When I was first dx in Dec./Jan, my doc explained that sometimes it can take longer ( a year or more) to fully "flush" ALL the G antibodies out of the system.  He encouraged me to be patient but also quizzed me about my shopping/eating habits to make sure I wasn't inadvertently exposing myself to potential CC, that I was 100 % buying/cooking/eating only fresh, natural foods (no packaged stuff, not even those labeled gluten-free because labels can be inaccurate if no real QA testing and/or shared facilities). 

He didn't address how "typical" (or not) it is to see #s spike up after being on strict gluten-free diet for years.  But those are great Qs for a gastro specialist (after you get your scope results).

The most important thing is you are proactively "on top of things" by making sure you get scoped and closely track your blood test numbers over the years.  You deserve a pat on the back for for that.

 

 

 

 

[trents]

32 minutes ago, Posterboy said:

Trents,

The acid reducers could of lowered her stomach acid enough to have triggered another positive for Celiac disease.

The link to low/NO stomach acid was studied 30+ years ago but people don't associate the two any more.

Here is the research about Low/NO stomach acid in Celiac's.

entitled  "Gastric morphology and function in dermatitis herpetiformis and in C(o)eliac disease"

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

And why taking PPIs could trigger another positive test...

This article shows how our antiflammatory state is triggered in the body.

https://www.medicalnewstoday.com/articles/321624#From-inflammatory-to-anti-inflammatory

You don't have to be taking PPIs to have low stomach acid.....

Stress can do the same thing....and is a risk factor for Celiac disease.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

The same effect has bee seen in Heartburn/GERD.

Here is the research on stress and heartburn entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/

We all  know stress kills right.....but it maims us first!

Again I hope this is helpful but it is not medical advise.

Posterboy,

PB, if I understand what you're saying, you mean that her celiac disease could have been reactivated without gluten exposure?

Edited July 22, 2020 by trents

[cyclinglady]

@Posterboy  It seems like you just looked at my response and the fact that GINAGF had been on an acid reducer for a month or so.   She has not been on it for years potentially causing villi damage.  She wanted to know why her TTG was elevated after it had not elevated for many years.     I was letting her know that many things can cause a slightly elevated TTG besides a gluten exposure.  That not all symptoms are due to celiac disease  and that elevated celiac antibodies (remember, mine were elevated when I had my repeat endoscopy and my small intestine had healed).  I also wanted her to know that the celiac antibodies tests were designed to help diagnose and not to determine dietary compliance.  Doctors use them because they are only “tool in the toolbox” that is non-evasive and cheap.  But no worries.  The OP is going to have a repeat endoscopy. Her GI will find the root cause of her elevated antibodies.  

I just heard a doctor mention that you should not reference old studies beyond 10 years.  Something to consider and research.  😊

 

[DJFL77I]

I don't think Pepcid is gluten free...

omeprazole I think is gluten free

[trents]

1 hour ago, DJFL77I said:

I don't think Pepcid is gluten free...

omeprazole I think is gluten free

It may depend on the company producing it and their particular formulation. Apparently, "pepcid" is made by more than one company. The OP states that one company making pepcid products specifically told her that their's was not gluten free. Another company, Johnson and Johnson, told her they don't test for gluten. 

This state of affairs is so frustrating! There are people like myself who are trying to get off PPIs and want to use H2 blockers as a bridge or PRN for heartburn but find that we may actually be doing more harm to ourselves because of possible/probable gluten in the H2 products. There ought to be a law requiring all companies producing medicinal products for oral consumption to test for gluten so that they can state definitively whether or not they are gluten free.

[Posterboy]

20 hours ago, trents said:

PB, if I understand what you're saying, you mean that her celiac disease could have been reactivated without gluten exposure?

Trents et Al,

I think I was rushing....I do that sometimes...what I meant was if you could be having a False Positive look into SIBO.....especially if Weight Loss is a concern.

SIBO can also trigger a Positive result.

Here is nice study about it from the BMJ....

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

And their concluding points quoting

"In summary, this case highlights the need to fully investigate patients who fail to respond as anticipated. Failure to do this may result in ongoing symptoms and nutritional decline.

Learning points

Duodenal villous blunting and an intraepithelial lymphocytosis are non-specific findings and the differential diagnosis includes coeliac disease.

If a patient thought to have coeliac disease fails to improve, then adherence to a gluten-free diet should be checked by a specialist dietitian.

If a patient thought to have coeliac disease fails to improve as predicted when adhering to a gluten-free diet, alternative diagnoses, including bacterial overgrowth, should be considered.

In the cases of suspected coeliac disease with discordant histology–serology findings, human leucocyte antigen determination must be performed."

They also noted "A study, involving aspirate proven cases of SIBO, found villous blunting in 24% and increased intraepithelial lymphocytosis in 26%" so almost 50 percent of Celiac's could also  have SIBO.

See this medical news article about SIBO "What you need to Know about SIBO" especially if you are losing weight unintentionally IMO you should look into SIBO as a possible cause of positive serology while continuing to eat gluten free.

https://www.medicalnewstoday.com/articles/324475

Chrons might also be considered....but I would check for the SIBO first....

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

Posterboy,

[Posterboy]

20 hours ago, cyclinglady said:

@Posterboy  It seems like you just looked at my response and the fact that GINAGF had been on an acid reducer for a month or so.   She has not been on it for years potentially causing villi damage.  She wanted to know why her TTG was elevated after it had not elevated for many years.     I was letting her know that many things can cause a slightly elevated TTG besides a gluten exposure.  That not all symptoms are due to celiac disease  and that elevated celiac antibodies (remember, mine were elevated when I had my repeat endoscopy and my small intestine had healed).  I also wanted her to know that the celiac antibodies tests were designed to help diagnose and not to determine dietary compliance.  Doctors use them because they are only “tool in the toolbox” that is non-evasive and cheap.  But no worries.  The OP is going to have a repeat endoscopy. Her GI will find the root cause of her elevated antibodies.  

I just heard a doctor mention that you should not reference old studies beyond 10 years.  Something to consider and research.  😊

 

Cyclinglady,

I actually only recently came across this research on Celiac.com (last month or two)....but it still good research...

The more recent research I just quoted from the BMJ puts SIBO in Celiac's at approx. 50 pct this early research but this puts it a more like 2/3....

quoting from the Celiac.com article about this topic of potential SIBO in treated Celiac's...

"In a study designed to determine the causes of continued gastrointestinal problems in celiacs who are on a gluten-free diet, Italian researchers looked at 15 celiac patients who continued to experience symptoms even after 6-8 months on a gluten-free diet. Histology improved in all patients after this time so refractory celiac disease was excluded as the cause"........

"Ten patients (out of 15 patients) were found to have small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. The doctors prescribed a diet without milk or fresh milk-derived foods to the patients with lactose malabsorption; and treated the patients with parasite infestation with mebendazole 500 mg/day for three days for two consecutive weeks. The SIBO patients were treated with rifaximin 800 mg/day for one week. All of the patients were re-evaluated one month after treatment, and all were symptom-free."

I don't think most Celiac's know this that if they are still having trouble on a Gluten Free diet SIBO needs to be considered as a Differential Diagnosis.

Again I hope this is helpful but it is not medical advise.

Posterboy,

[cyclinglady]

@Posterboy

What?  Nothing in the two links in your response to Trents, indicates that SIBO can cause an elevated TTG.  We already know that SIBO is often linked with celiac disease and that it can cause small intestinal damage.  Over a dozen things can damage small intestinal villi.  You need to respond to the OP (Original Poster’s) question and not discuss a topic that is of interest to you (though I have been guilty of going off topic plenty of times).  😆
 

That Celiac.com article is way too old to be of value (2004).   Look for current 2020 research (or at least within five years).  My daughter would get a scolding and a bad grade for using old research from her teachers.  Medical science is changing rapidly.   Practically daily as evidenced by COVID-19.  Stay current and keep it applicable.  Otherwise, your posts are confusing. 😊

Again, the OP just wanted to know why her TTG is elevated after being normal for years.  She is getting an endoscopy which should help determine what is going on.  
 

Edited July 23, 2020 by cyclinglady

[GINAGF]

17 hours ago, trents said:

 

This state of affairs is so frustrating! There are people like myself who are trying to get off PPIs and want to use H2 blockers as a bridge or PRN for heartburn but find that we may actually be doing more harm to ourselves because of possible/probable gluten in the H2 products. 

My amazing pharmacist sat down with me yesterday and showed me how to look up my meds and ingredients to look for. Not only was the acid reducer not gluten free but neither was the Tylenol in my cabinet. However I take Tylenol infrequently. Turns out store brands like Walmart, target, and CVS are more often gluten free. I picked up a bottle of pepcid of the walmart equate brand yesterday. It said gluten free right on the box. 

I don't take a lot of medication except vitamins which I know are gluten free, so I feel disappointed in myself that I wasn't more diligent with the over the counter meds. This is not my first year as a Celiac and I should have known better. 

[trents]

Great information. Thanks!

Day before yesterday I picked up the Walmart Equate equivalent of Pepcid "Complete" which has two antacids in addition to famontidine. It does not state on the bottle that it is gluten-free. 

Can you share more information about what the pharmacist showed you about how to look up your meds and ingredients and gluten?

Edit: I specifically looked up the the question of whether or not Equate Acid Reducer Complete is gluten-free. According to the website ad side bar pictures it is gluten-free but it does not say that on the label itself that is on the bottle: https://www.walmart.com/ip/Equate-Dual-Action-Acid-Reducer-Complete-Famotidine-10-mg-Calcium-Carbonate-800-mg-Magnesium-Hydroxide-165-mg-Chewable-Tablets-Berry-Flavor-50-Count/19400281

Edited July 23, 2020 by trents

[cyclinglady]

52 minutes ago, trents said:

Great information. Thanks!

Day before yesterday I picked up the Walmart Equate equivalent of Pepcid "Complete" which has two antacids in addition to famontidine. It does not state on the bottle that it is gluten-free. 

Can you share more information about what the pharmacist showed you about how to look up your meds and ingredients and gluten?

Edit: I specifically looked up the the question of whether or not Equate Acid Reducer Complete is gluten-free. According to the website ad side bar pictures it is gluten-free but it does not say that on the label itself that is on the bottle: https://www.walmart.com/ip/Equate-Dual-Action-Acid-Reducer-Complete-Famotidine-10-mg-Calcium-Carbonate-800-mg-Magnesium-Hydroxide-165-mg-Chewable-Tablets-Berry-Flavor-50-Count/19400281

This helps:

https://celiac.org/about-the-foundation/featured-news/2016/01/gluten-free-101-need-know/
 

I used to keep a list of ingredients to avoid with me all the time.  I would pull it out if my wallet.  Now it is on my phone, but with time, you memorize it.  As a result even, my cosmetics are in fact gluten free.  That is because I am so conditioned to read labels.  It just takes time and practice.  But truth be told,  it is easier and faster just to support ($$$$) those manufacturers who place a gluten free label on their product.  I may pay a bit more, but sometimes piece of mind is priceless.  
 

When in doubt call the manufacturer or just do not buy it.  There are usually substitutes available.  
 

The Equate product just lists “starch” based on the website inactive ingredients description.  Sometimes the website does not match the actual product packaging.  Always go with the label (which the photo shows the source of the starch).    But you can see that they do not match.  So, read the label when you receive this product, if you buy this product online.  It might not be gluten free.  

Edited July 23, 2020 by cyclinglady

[GINAGF]

52 minutes ago, trents said:

Great information. Thanks! 

Can you share more information about what the pharmacist showed you about how to look up your meds and ingredients and gluten?

Edit: I specifically looked up the the question of whether or not Equate Acid Reducer Complete is gluten-free. According to the website ad side bar pictures it is gluten-free but it does not say that on the label itself that is on the bottle: 

I'm using the 20mg tablets. See picture below.

She said do no take anything with a starch listed until it can be confirmed it came from potato or corn. If you can't confirm it don't take it.

Meds should have an ndc code on it. She said to go to www.dailymed.nlm.nih.gov and type in that code to verify the source of the starch or to see a listing of the ingredients and where they are derived from.