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Borderline TTG-A mean negative?


Jjk1992

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Jjk1992 Newbie

Hi! I recently had a bunch of blood tests done and the only one that was elevated was the TTG-A. My level was 12.6, with negative listed as 0-4 and positive as >15. I asked my doctor about it and she said if I was Celiac my level would have been much higher, and that there wasn’t much research supporting just a gluten sensitivity. 
That being said, I had been suffering from the following symptoms for YEARS: GERD, indigestion, chronic migraines, extreme fatigue and brain fog, joint pain, and bloating. I’d never considered that gluten was the issue, but I decided to try going gluten-free just to see what happened and I could literally cry by how much better I feel. I feel like I’m alive again. 
Going forward, is it possible that I am celiac or should I just assume it’s some kind of gluten sensitivity? Do I even need to push for an official diagnosis or should I just continue a strict gluten-free diet and call it good? 


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trents Grand Master

Welcome to the forum, @Jjk1992!

Did your decision to try going gluten free preceded the celiac blood antibody testing or come after it? If before, you probably sabotaged the test results.

Not sure why your doctor would say there isn't much research supporting the condition known as gluten sensitivity. Gluten sensitivity, or NCGS (Non Celiac Gluten Sensitivity) is a well-established medical phenomenon. It is 10x mor common than celiac disease and shares many of the same symptoms. There currently is no test for NCGS. Celiac disease must first be ruled out. Some experts feel NCGS can be a precursor to celiac disease. Just because there is no test for NCGS does not invalidate it as a medical reality. If your doctor is in denial about this I think I would look for a new doc.

As far as the need to push for an official diagnosis it depends on how disciplined you are. Many people psychologically just seem to need an official diagnosis to keep themselves on the gluten-free bandwagon. Otherwise, they tend to slip back into denial. At the end of the day, the antidote for both celiac disease and NCGS is the same: Lifelong abstinence from gluten.

knitty kitty Grand Master

@Jjk1992,

Welcome to the forum!

Having a slightly positive test result warrants more investigation.  

Like @trents said, a slightly positive result can be a reflection of decreased gluten consumption prior to the test.  It's like being told you're a little pregnant.  

Was your Total IgA taken?  If you have low Total IgA, your tTg IgA can be low, too.  

Do you have anemia, Diabetes or Thiamine deficiency?  These can cause low tTg IgA results.

Chronic inflammation as occurs in years of undiagnosed, untreated Celiac Disease can cause low tTg IgA results.  

Subclinical vitamin deficiencies as occurs in undiagnosed, untreated Celiac Disease can result in low tTg IgA antibodies.  

Your symptoms "GERD, indigestion, chronic migraines, extreme fatigue and brain fog, joint pain, and bloating" are symptoms of nutritional deficiencies.  Thiamine Vitamin B1 and B Complex deficiencies can cause Gerd, chronic migraines, extreme fatigue and brain fog, and bloating.  Joint pain can be caused by deficiency in Vitamin D.  These are common deficiencies found in untreated Celiac Disease.  

Have you had a genetic test for Celiac Disease genes?  Since celiac disease is genetic, checking for the presence of celiac disease genes is important.  

Hope this helps!  Keep us posted on your progress!

Scott Adams Grand Master

Given your many symptoms which are common among those with celiac disease or gluten sensitivity, it would make sense for you to try a gluten-free diet for 3-4 months to see if it helps. 

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    • trents
      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
    • Richardo
      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.
    • trents
      Your chest pain could be related to the Sarcoidosis. "When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur." https://en.wikipedia.org/wiki/Sarcoidosis   The bowel incontinence could be caused by surgical damage (or scar tissue) to the cauda equina nerve bundle in the lumbar area of the spine. Or, it could be related to unintentional gluten exposure.
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