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Elevated Antibodies For Life?


tiredofdoctors

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tiredofdoctors Enthusiast

I went to my neuro, and he said that my antigliadin antibodies were slightly elevated (only one over normal). This is also very frustrating, though, because I haven't cheated ONCE since going gluten-free well over a year and 1/2 ago. I realize that one over isn't NEARLY as much as it was, but it scares me that one over will still do more neurological damage -- however small.

The neuro doc said that his impression is that once you have these antibodies, regardless of how strictly you adhere to diet, you will still have some elevation -- for life.

Has anyone heard of this? I would think that, if you adhered to the diet without compromise, you should be able to get the antibody level down to within normal limits. Any help you can give would be GREATLY appreciated.

xxxooo

Lynne


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mouse Enthusiast

YOUR BACK!! Glad to see that you have a monitor again. Don't know the answer. Still waiting for my test results. Will call next week and see what the numbers were. My neuro problems have seemed to have gone bye bye lately and I hope they stay away. I am wondering if that one glutened pill that I took 2 1/2 months ago could have lingered that long. I certainly don't care to test it.

jmengert Enthusiast

Hi, Lynne--Very funny you should ask this, as I was just told this on Wednesday. My antibodies were also positive (just one over the limit, too), but the rest of my results were fine. My doctor said that since my results came down so drastically, it was fine. He also said that those results are probably as good as I will ever get. I'm having an endoscopy (my first one) in two weeks, so I'll know then if I'm actually getting damaged or not.

So, I guess it could be true. I found it a bit odd, too.

kbtoyssni Contributor

At first I thought there's no way they can still be high if you're gluten-free. But then I thought about things like mono. I had mono seven years ago and blood tests would still show those anti-bodies. The difference is that mono is caused by a virus and therefore you will always have that virus (as opposed to bacterial infections which go away when the bacteria die), but you feel better because your body builds up antibodies. Celiac isn't a virus, though, so I don't think this same principle applies. Maybe it mimics a virus in some ways, though? I have no idea.

bremac Apprentice

I think the point is that we (most of us I think) can never be 100% gluten free. It might be 99.999% but there is still eensy tiny little bits of gluten that we ingest accidentally. My GI is happy as long as my ABs are hovering around normal. Before I was diagnosed they were almost 100X higher, so if they're almost normal it means I'm doing something right. I know it can be frustrating though because we WANT to have them be zero. :)

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    • 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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