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KB11

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KB11 Newbie

My two younger cousins just found out that they had celiac disease. They are ages 7 and 10. My aunt and uncle told us that our family should be tested. I am the youngest of my family(19). Is there anyway that we have it. I'm pretty sure none of us have the symptoms, but would it be better to know. I'm just trying to help my mom learn more and to figure stuff out. Thanks a lot!


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MySuicidalTurtle Enthusiast

Celiac Disease does run in families. Your cousins could have inherited from their mother or fathers side. If they inherited it from the side connected to you then there is a chance you and your family could have it, too. Not everyone has symptoms or shows them right away. Sometimes people show nothing or have a few periods in their life where they are sick but then well. It doesn't hurt to get tested.

KaitiUSA Enthusiast

Yes, get tested...it is genetic. You don't have to have any symptoms at all with celiac so you won't be able to tell by that. Better tested to find out now if you have it or not

tarnalberry Community Regular

As noted, it is genetic. Your chances are not as high as your aunt's or uncle's, but higher than the general population. (I believe second degree relatives are 1 in 44, but I can't quite recall what the odds with third degree relatives are...)

Symptoms need not be obvious, or even particularly present at this point in time. But on the off chance that you do have it, it is much better to find out now before it causes serious medical problems in the future.

Good luck!

Carriefaith Enthusiast

If no one else in your family has celiac other than your cousins, then it will be very hard to know which side of the family the gene is on. I would recommend getting the celiac blood panel and a celiac gene test (to see if you have the gene for celiac).

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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? 
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      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.
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      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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