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Has Anyone Had A 0 On The Ttg Blood Test?


no-more-muffins

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no-more-muffins Apprentice

I am seriously confused by some of my results. The more I have been researching things the more I think my blood tests may not be valid. I have heard that having a 0 on the tTG test seems suspicious, and that everyone pretty much has at least some tTG present if they sufficiently make IgA.

My total IgA was 115, (normal range 68-378)

My tTG was 0 (range 0-19 being normal)

I got tests from enterolab for gluten sensitivity that came back as a 6 (anything over a 10 is positive.)

My symptoms:

weight loss, short stature, failure to grow as a child, late puberty, anxiety, depression, eczema, constant nausea, frequent loose BM, hand tremors, joint pain, headaches, insomnia, fatigue, menstrual irregularities, periodontal disease, endometriosis (14 years ago).

I have seen improvement with a gluten-free diet.

My 21 month old dd was positively diagnosed at enterolab as having gluten sensitivity (18 units on the test).

Anyone have any insight on this? I can't figure out why my gluten tests at enterolab could be negative.


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Switch2GF Rookie

Blood tests are not the "official" way to diagnose, they are just an easy first step.

My dad's blood work also came up with a 0. They determined that some people's body just don't produce the antibody that they are looking for.

An endoscopy is the true way of diagnosing. If you and your doc want to be 100% sure, then this is the next step. Best of luck!

darlindeb25 Collaborator
An endoscopy is the true way of diagnosing. If you and your doc want to be 100% sure, then this is the next step.

This is not necessarily true either. A good share of doctors miss a diagnosis with the endoscopy. either they do not know what they are looking at, or they do not get enough samples, so many varitables.

Recently, Dr. Peter Green stated a positive blood test is proof. This is something new from him. I think soon, we will hear many new thoughts on gluten intolerance/celiac disease.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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