Gluten sensitivity - weird blood test results

[Night Ranger]

I'm a young male, in my early twenties. Four months ago I asked my doctor for celiac/gluten intolerance blood tests. I had experienced minor digestion issues and also had a family member with skin issues, who believes and insists their skin issues and flare-ups to be related to eating gluten/wheat. I've received some inconsistent blood-test results and wanted to ask for advice. Prior to testing I had consumed and eaten gluten and wheat my entire life (four pieces of bread a day, rolled oats/oatmeal, pasta, etc), with no problems or issues.  

My blood test results were: 

TTG IgA   <1                

AGA IgG    9.8 H

My doctor told me at the time: Of the people who ask for celiac and gluten related blood tests, I was: "one of the rare ones", - as I scored just below positive for the IgG test. He then added that the only way to confirm whether or not I have any sort of gluten sensitivity would be to have a gastroscopy. He didn't order any other blood-tests.

Since testing, I decided to cut out gluten/wheat, and have noticed better concentration levels and no brain fog - however I don't believe this to be conclusive evidence to suggest I have a gluten sensitivity or intolerance. One reason why I asked for a gluten intolerance blood test in the first place is because I was experiencing digestion issues, and thought perhaps gluten could be a factor. Since going gluten free, my digestion issues have continued to occur, so I do not believe them to be gluten related.

I would prefer not to have the gastroscopy done, if possible. Should I enquire about future blood work? I'd also quite like to go back to eating pasta and bread, or have a definitive answer to whether I would be allowed to. How should I go about this with my doctor? Also what are the chances of me receiving a false positive? Thanks everyone. 

Reference ranges for TTG IgA and AGA IgG: For the TTG IgA: (Negative is <7 U/ml, Equivocal is 7-10 U/ml, Positive is >10 U/ml. The AGA IgG reference ranges are: Negative - <7 U/ml, Equivocal - 7-10 U/ml, Positive >10 U/ml

[Wheatwacked]

18 minutes ago, Night Ranger said:

Since testing, I decided to cut out gluten/wheat, and have noticed better concentration levels and no brain fog - however I don't believe this to be conclusive evidence 

Your improvement on GFD would indicate that gluten does affect you. Because of its addictive qualities gluten causes DENIAL. With Celiac ruled out it still leaves NonCeliac Gluten/wheat Sensitivity, for which the only diagnosis is rule out Celiac and show improvement on GFD.  Your may still be getting gluten in ways you don't realize. Soy Sauce is more than half wheat. Tamari Sauce is soy sauce without the wheat. You may have other food sensitivities that pop up as a result of vitamin and mineral deficiencies like vitamin D or choline (smelly poop) Depending on your nutrition it can take months to years to undo the damage.

Other symptoms of Celiac (there are hundreds) 

 

 

[trents]

The tTG-IGA test is the centerpiece of antibody testing for celiac disease but there are others that need to be run since some people who do have celiac disease produce an atypical immune response that does not trigger a postitive tTG-IGA.  Not sure about the AGA-IGG. Not familiar with that terminology expression but it may be the same as Deamidated gliadin peptide (DGP IgA and IgG). One test that should have been run that wasn't is the total serum IGA. When it is low it can create false negatives in the tTG-IGA. Here is a primer for celiac antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

As Wheatwacked mentioned, you may have NCGS (Non Celiac Gluten Sensitivity) instead of Celiac Disease. There is no test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and shares many of the same symptoms. Your use of the term "gluten sensitivity" is not very precise so I felt the need to point out that there are two possibilities. 

It can be very challenging to actually eliminate gluten from the diet as opposed to just eliminating the larger sources of it. This might help: 

Until you cut out all gluten you may not see all symptoms disappear, if in fact you have NCGS or celiac disease.

If you go in for further testing, whether by serum testing or by "gastroscopy", you would need to be back on regular amounts of gluten. At least two slices of wheat bread (or the equivalent) for a minimum of six weeks before serum testing and the same amount of gluten for at least two weeks before the gastroscopy with biopsy. 

[trents]

Just to clarify, if you decide to go back for more thorough serum antibody testing, go back to eating significant amounts of gluten for two months and then I would ask for: 1. Total serum IGA, 2. tTG-IGA, 3. Deamidated gliadin peptide (DGP IgA and IgG).

NCGS shares many of the same symptoms with celiac disease but does not damage the small bowel villi. Damage to the small bowel villi is the distinguishing characteristic of celiac disease. In celiac disease, gluten causes an autoimmune reaction that creates inflammation in the lining of the small bowel. This inflammation produces antibodies that can be detected by the serum tests. The gastroscopy with biopsy directly assesses the damage to the villi through microscopic examination.

Since your brain fog has improved with gluten reduction it seems likely that you at least have NCGS. The quickest way to go from here would be the gastroscopy since it only requires a two-week pre test gluten challenge. However, whether NCGS or celiac disease, the antidote is the same: total elimination of gluten from the diet.

In addition to gluten sensitivity, you may also have issues with other foods such as dairy or oats, which are common co-conspirators with gluten sensitivity.

[Night Ranger]

17 hours ago, Wheatwacked said:

Your improvement on GFD would indicate that gluten does affect you. Because of its addictive qualities gluten causes DENIAL. With Celiac ruled out it still leaves NonCeliac Gluten/wheat Sensitivity, for which the only diagnosis is rule out Celiac and show improvement on GFD.  Your may still be getting gluten in ways you don't realize. Soy Sauce is more than half wheat. Tamari Sauce is soy sauce without the wheat. You may have other food sensitivities that pop up as a result of vitamin and mineral deficiencies like vitamin D or choline (smelly poop) Depending on your nutrition it can take months to years to undo the damage.

Other symptoms of Celiac (there are hundreds) 

 

 

Hi! Thanks for the helpful comment. With Celiac disease ruled out, from my limited understanding the only way to confirm Non Celiac Gluten Sensitivity or a Wheat sensitivity would be to trial eating gluten/wheat for a period of time, correct? 

If I encounter issues when eating gluten, that would point to and suggest Non Celiac Gluten Sensitivity or a wheat sensitivity. 

If I encounter no issues when consuming gluten, that would mean I can tolerate gluten in my diet and am safe to eat it and reintroduce it? 

When I ask the previous questions please bear in mind that up until the last four months of my life, I had consumed gluten with no problems or issues and I also have no family history of Celiac disease or diagnosed Non Celiac Gluten Sensitivity. 

I believe I *DO NOT* have Non Celiac Gluten Sensitivity, but would like to know for sure. What would you advise me to do, in my position? Thankyou for your time and assistance : ) 

[Night Ranger]

15 hours ago, trents said:

Just to clarify, if you decide to go back for more thorough serum antibody testing, go back to eating significant amounts of gluten for two months and then I would ask for: 1. Total serum IGA, 2. tTG-IGA, 3. Deamidated gliadin peptide (DGP IgA and IgG).

NCGS shares many of the same symptoms with celiac disease but does not damage the small bowel villi. Damage to the small bowel villi is the distinguishing characteristic of celiac disease. In celiac disease, gluten causes an autoimmune reaction that creates inflammation in the lining of the small bowel. This inflammation produces antibodies that can be detected by the serum tests. The gastroscopy with biopsy directly assesses the damage to the villi through microscopic examination.

Since your brain fog has improved with gluten reduction it seems likely that you at least have NCGS. The quickest way to go from here would be the gastroscopy since it only requires a two-week pre test gluten challenge. However, whether NCGS or celiac disease, the antidote is the same: total elimination of gluten from the diet.

In addition to gluten sensitivity, you may also have issues with other foods such as dairy or oats, which are common co-conspirators with gluten sensitivity.

Thanks for your comment and assistance! I will definitely discuss things with my doctor, and request all of these tests are done. 

Is it possible you could read my previous comment (above) as well, about Non Celiac Gluten sensitivity? 

 

 

Also, one final question for you. I live in Australia, and according to Coeliac Australia, IgG test results only reflect exposure to triggers (gluten), not disease, intolerance or sensitivity to triggers. Is it possible I unnecessarily cut out gluten from my diet - if my test results only indicate an exposure to gluten, and not a sensitivity or intolerance to gluten? 

I've included some quotes from Coeliac Australia's website further below. 

Link: https://www.coeliac.org.au/s/article/unorthodox-testing

"IgG antibodies are proteins produced by the immune system in response to exposure to external triggers, like pollens, foods or insect venoms. Their presence reflects exposure to these triggers, not disease that results from exposure. IgG antibodies to food are commonly detectable in healthy adult patients and children, whether food-related symptoms are present or not. There is no credible evidence that measuring IgG antibodies is useful for diagnosing food allergy or intolerance, nor that IgG antibodies cause symptoms. (The only exception is that gliadin IgG antibodies can be used to monitor the success of avoiding gluten in people with proven coeliac disease).

Despite studies showing the ineffectiveness of this technique, it continues to be promoted in the community." 

Source: https://www.coeliac.org.au/s/article/unorthodox-testing

 

[Wheatwacked]

"Researchers are examining whether harbouring some parasites in the gut may hold answers to painful health issues such as coeliac disease."   https://www.coeliac.org.au/s/about-us/research/hookworm-research

Also from Coeliac Australia. Really? And they say IGG antibodies is quackery?

Other than the calories and fortified vitamins and the profit motive there is no health benefit to eating wheat. People who don't eat wheat don't get healthier by adding it to the diet, People who eat wheat do get healtier by excluding it.

[trents]

6 hours ago, Night Ranger said:

Hi! Thanks for the helpful comment. With Celiac disease ruled out, from my limited understanding the only way to confirm Non Celiac Gluten Sensitivity or a Wheat sensitivity would be to trial eating gluten/wheat for a period of time, correct? 

If I encounter issues when eating gluten, that would point to and suggest Non Celiac Gluten Sensitivity or a wheat sensitivity. 

If I encounter no issues when consuming gluten, that would mean I can tolerate gluten in my diet and am safe to eat it and reintroduce it? 

When I ask the previous questions please bear in mind that up until the last four months of my life, I had consumed gluten with no problems or issues and I also have no family history of Celiac disease or diagnosed Non Celiac Gluten Sensitivity. 

I believe I *DO NOT* have Non Celiac Gluten Sensitivity, but would like to know for sure. What would you advise me to do, in my position? Thankyou for your time and assistance : ) 

A diagnosis of NCGS would ensue from:

1. First getting tested for celiac disease resulting in negative test test results (serum antibody and/or endoscopy with biopsy).

2. Improvement of symptoms when all gluten is removed from the diet and lifestyle. Not just most of it, but all of it which would include cross contamination and other sources such as what might be in your supplements and medications and oral hygiene products.

 

Concerning IGG only being an indicator of exposure to gluten rather than damage from it, this is the first I have ever heard of that. So, I am skeptical. But we are learning more about gluten-related disorders all the time so I can't rule it out.

[LCAnacortes]

Consider eliminating dairy.  My daughter had a huge problem with it - and it caused the same kind of symptoms that gluten did. See if that helps.