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Glutensensitivegirl

Test results: TTG v. Gluten Gene

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I have struggled with 'bowel issues' for a long time, colonoscopies have only elicited a diagnosis of IBS. Several years ago I went to a funcitonal medicine doctor who noted that I had 'a reaction' to gluten w/ some elevated bloodwork and recommended I not eat gluten. After 18 months, these markers decreased. Fast forward a few years later (and a few bowls of pasta, pieces of bread, etc)....my autoimmune markers are elevated again. 

Question though: back when I was being seen the doctor checked the 'celiac gene' of DQ2 and DQ8....I was 'negative' for both. But my tissue transglutaminase (tTG), IgA was elevated at the time. It went down when I stopped eating gluten for an amt of time. Now I checked again and it's a 10 (when the normal is 2 or below).

So....can tTG be slightly elevated in the absence of the DQ2 and DQ8 genetic component? Or is 10 not even slightly but just full blown? I really don't want to get a biopsy although I know its the 'gold standard' .... 

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A slightly elevated TTg can mean other things.

"...common in patients who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis."

http://www.cureceliacdisease.org/archives/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet


 

 

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So would DQ2 and DQ8 as negative be enough to not pursue a gluten free diet? Are those the only genetic tests for celiac? Would a visit to a rhematologist be better in this situation than seeing a gastro? My appendix also burst this fall out of nowhere and have had other issues so I'm trying to control my medical costs by going to as few 'ologists' as possible, :)

 

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21 minutes ago, Glutensensitivegirl said:

So would DQ2 and DQ8 as negative be enough to not pursue a gluten free diet? Are those the only genetic tests for celiac? Would a visit to a rhematologist be better in this situation than seeing a gastro? My appendix also burst this fall out of nowhere and have had other issues so I'm trying to control my medical costs by going to as few 'ologists' as possible, :)

 

I don't know what your medical history is, what diseases you  may have, etc.  I doubt the tests run by a "functional med doc" are scientifically valid.  It is possible to have problems with gluten, unrelated to Celiac.  Things like FODMAPS, for example. Just aa its possible to have a thyroid disease, for example, that can raise the ttg in the absence of Celiac disease.

 

  If eating gluten free or gluten light makes you feel better, maybe you should do that.


 

 

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49 minutes ago, Glutensensitivegirl said:

I have struggled with 'bowel issues' for a long time, colonoscopies have only elicited a diagnosis of IBS. Several years ago I went to a funcitonal medicine doctor who noted that I had 'a reaction' to gluten w/ some elevated bloodwork and recommended I not eat gluten. After 18 months, these markers decreased. Fast forward a few years later (and a few bowls of pasta, pieces of bread, etc)....my autoimmune markers are elevated again. 

Question though: back when I was being seen the doctor checked the 'celiac gene' of DQ2 and DQ8....I was 'negative' for both. But my tissue transglutaminase (tTG), IgA was elevated at the time. It went down when I stopped eating gluten for an amt of time. Now I checked again and it's a 10 (when the normal is 2 or below).

So....can tTG be slightly elevated in the absence of the DQ2 and DQ8 genetic component? Or is 10 not even slightly but just full blown? I really don't want to get a biopsy although I know its the 'gold standard' .... 

How can you say that the TTg was only slightly elevated at a 10 when the top of the range is a 2?  The gene test just helps to rule out celiac disease, but the researchers are finding other genes linked to celiac disease.  Consider a full celiac panel.  The cost is around $450 USD.  

I personally test negative on the TTG tests.  Only the DGP iga  is ever elevated for me and yet I had moderate to severe intestinal damage.  I never had gene testing.  

If you test, try to find a celiac-savvy doctor.  

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  That means 8 to 12 weeks of gluten daily.  Even two weeks off gluten can ruin the results (University of Chicago's celiac website).  
 
(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Thanks. I do not notice a difference w/ the diet specifically. My functional medicine doctor is actually an MD....she just doesn't take insurance, and my normal University hospitals labs did the testing originally; then my regular PCP readministered the TTG IgA test. He also did a TTG AB IgG that was negative.

Her protocol was all about 'inflammation' and that by eating foods that your body reacts to, you cause more inflammation (leaky gut following, making the intestinal wall porous, allowing food particles to enter the bloodstream...then my body attacks the foreign substances but that I have a predisposition to autoimmune disease in my family it goes bonkers and keeps attacking). I eliminated gluten and took probiotics, prebiotics, fish oil, Kaprex AI (anti-inflammatory)....sort of kill the inflammation with kindness, ha. 

I just don't see how I can have a negative for the genetic testing yet a positive TTG IGA. Does a biopsy cause more problems? Do they have to biospy to see damage?

Edited by Glutensensitivegirl

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I think you need to read this:

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

The above article discusses the fact that it is really hard for many doctors to interpret genetic test results and that some labs do not run the full test.

and....

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059855/

The above study showed that about 9% of Brazilians with celiac disease do not carry the common celiac genes.  Okay, so maybe you are not Brazilian, but the message is that not every test is perfect or dead on.  

You can do any of the following:

1. Make sure the genetic test was done properly.

2.  Get the complete blood panel.

3.  Get a four to six biopsies.  This might be worth it.  It can help diagnose celiac disease, rule out SIBO and others intestinal issues.  Make sure the GI is celiac savvy. 

It is common to have a good visual result on an endoscopy, so it is critical to get four to six biopsy sample to see villi damage.

The leaky gut theory is getting more press.  Dr. Fansano's discovery of zonulin "gate keepers" is promising.  It might explain food intolerances.  But more research is needed.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/

Finally, you can continue to be gluten free and self-diagnose yourself as Karen stated.   You must be strictly gluten free though.  Remember it can take more than a few years to feel well.  Why so long?  Everyone heals differently and many get exposure to gluten despite their best efforts.    The choice is yours.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Recently I was involved with a clinical study, on the reactions of Gluten in humans.  One of the things that came to light, was a primary cause of allergic reactions, to Gluten.  There are two glycoproteins in Gluten, one is called Glutenin (Glutelin), the second is called Gliadin.  Gliadin is a major cause of illness , abnormal conditions and allergic reaction.  The research proved that because people who were not processing proteins properly in the first stage of digestion, were extremely sensitive to the Gliadin protein.  This sensitivity is primarily caused by malabsorption.  When Gluten is consumed, the carbohydrates start to break down, by the salivary amylase. Salivary Amylase also contains glycoproteins.  In a normal health adult, when Gluten enters the stomach, the glycoproteins in the Gluten and saliva are broken down and converted, by the action of the Peptic enzymes. The Peptic enzymes are most active in the destruction and conversion of allergens in proteins,  when the pH of the Hydrochloric acid is at 1.2 pH.  If the pH of the Hydrochloric acid, produced by the stomachs parietal cells, become more neutral, or alkaline, the peptic enzymes loose their ability to convert proteins into peptones.  At pH 5.0 the peptic enzymes are completely inactive in the conversion of proteins. Malabsorption occurs, when the strength of the Hydrochloric acid weakens, preventing conversion of the proteins and sterilization of the nutrients in the stomach.  Many proteins are allergens and will cause allergic reactions, if they are not destroyed by the action of the Hydrochloric acid and peptic enzymes. Because the digestive system of young children is not fully developed, they become more susceptible, to the allergic reaction of the glycoprotein ( Gliadin), in Gluten.  Adults become more susceptible, when they develop a condition called Hypochlorhydria.  Hypochlorhydria, is the reduction in the strength of the Hydrochloric acid, produced in the stomach.  This condition, will result in the proliferation of bacterial, especially yeast, candida and H. pylori, in the digestive tract. The lack of sufficiently strong Hydrochloric acid in the digestive process will prevent sterilization, and protein conversion and allow bacteria to flourish in the digestive process.  One of the best and most accurate test available for diagnosing digestive disorders is the Heidelberg pH Diagnostic test.  The Heidelberg test is used by researchers, hospitals, pharmaceutical companies and clinics throughout the world.  If anyone suffers from Gluten sensitivity, I highly recommend that they get a pH diagnostic test, or pH gastrogram.

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2 hours ago, J Whittington said:

Recently I was involved with a clinical study, on the reactions of Gluten in humans.  One of the things that came to light, was a primary cause of allergic reactions, to Gluten.  There are two glycoproteins in Gluten, one is called Glutenin (Glutelin), the second is called Gliadin.  Gliadin is a major cause of illness , abnormal conditions and allergic reaction.  The research proved that because people who were not processing proteins properly in the first stage of digestion, were extremely sensitive to the Gliadin protein.  This sensitivity is primarily caused by malabsorption.  When Gluten is consumed, the carbohydrates start to break down, by the salivary amylase. Salivary Amylase also contains glycoproteins.  In a normal health adult, when Gluten enters the stomach, the glycoproteins in the Gluten and saliva are broken down and converted, by the action of the Peptic enzymes. The Peptic enzymes are most active in the destruction and conversion of allergens in proteins,  when the pH of the Hydrochloric acid is at 1.2 pH.  If the pH of the Hydrochloric acid, produced by the stomachs parietal cells, become more neutral, or alkaline, the peptic enzymes loose their ability to convert proteins into peptones.  At pH 5.0 the peptic enzymes are completely inactive in the conversion of proteins. Malabsorption occurs, when the strength of the Hydrochloric acid weakens, preventing conversion of the proteins and sterilization of the nutrients in the stomach.  Many proteins are allergens and will cause allergic reactions, if they are not destroyed by the action of the Hydrochloric acid and peptic enzymes. Because the digestive system of young children is not fully developed, they become more susceptible, to the allergic reaction of the glycoprotein ( Gliadin), in Gluten.  Adults become more susceptible, when they develop a condition called Hypochlorhydria.  Hypochlorhydria, is the reduction in the strength of the Hydrochloric acid, produced in the stomach.  This condition, will result in the proliferation of bacterial, especially yeast, candida and H. pylori, in the digestive tract. The lack of sufficiently strong Hydrochloric acid in the digestive process will prevent sterilization, and protein conversion and allow bacteria to flourish in the digestive process.  One of the best and most accurate test available for diagnosing digestive disorders is the Heidelberg pH Diagnostic test.  The Heidelberg test is used by researchers, hospitals, pharmaceutical companies and clinics throughout the world.  If anyone suffers from Gluten sensitivity, I highly recommend that they get a pH diagnostic test, or pH gastrogram.

Interesting, b/c the protocol my 'functional medicine' doc (again, who is also an MD)...was no gluten, fish oil, HCL betaine (As you mention above), kaprex ai, vitamin D, folic acid, b vitamins (b12?), probiotics, fiber...

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