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Can Enterolab Really Tell Me If I Have Celiac?


Mia H

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Mia H Explorer

Hello, I'm pretty new here. I had my blood test results about a week ago and of course they came back negative. I have been on a low gluten diet for about a year and no gluten from nov-jan. I ate gluten for 3 weeks prior to the test but now I see that was useless and only made me sick and is slowing my recovery.

I have about 20 symptoms of celiac so I'm quite confident I have finally found my answer.

I really appreciate hearing about other people's bad experiences with Dr because I have felt like a hypochondriac or just plain crazy person for almost 20 years now, when all along I knew something was wrong with me.

My question is can enterolab tell me if I have celiac or just gluten intolerance. I know I'm going gluten free either way but it would help me mentally to stay gluten free in hard situations like eating out, eating at friends and family, doing it life long, giving up communion, etc.

And does anyone have any recommendations on getting the whole panel or just the smaller panel.

Thanks!

Mia


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Mia H Explorer

I'm sorry if this posts twice, but I don't think it worked.

mouse Enthusiast

I have not used them, but many on here have. It is pretty quiet on the forum during the weekend, so have patience and someone will respond. My take on them is that they can tell you if you also have Celiac as long as it done within 2 years of being gluten-free. Welcome to the board.

gf4life Enthusiast

They can tell you if you have a gluten intolerance, and they can tell you if you have the Celiac genes, or gluten intolerance genes, but they do not diagnose you with Celiac. They are a lab run by a doctor, but they do not give out a diagnosis, only test results. Some people have taken their results in to their doctor and gotten and official daignosis. But most people who get positive results from Enterolab just start the diet and forget about trying to get the diagnosis of Celiac, they just want to feel better. So it is a personal choice.

CarlaB Enthusiast

I found out from Enterolab that I have two gluten-intolerance genes and a gluten intolerance. I have no trouble avoiding gluten because of how sick it makes me ... like you, I got very ill from the gluten challenge, and if I think about that, I have no trouble staying away even without the celiac diagnosis.

I was off wheat for three years before my negative blood test, then did a 6 week gluten challenge, which was useless, for my endoscopy, which was also negative. I was gluten free for 2 months after my gluten challenge, and Enterolab still found that I was intolerant.

Mia H Explorer

Thank you for your replies. It helps to have some imput for such a costly venture. But I know if I don't do it now, 5 years from now I will wish I had. And my health is worth everything now! I'm sick of being sick!

But I am very hopeful now that in several months I will be feeling better and in 6-12 I will hopefully be good as new.

Mia

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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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