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How Often To Test?


shelly40

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shelly40 Rookie

Hi all!

 

I was diagnosed with celiac in November. Since I was diagnosed, my whole family is going through the testing process.

 

I know I carry both genes.  My boys (9 and 11) were tested and while they also carry the genes, they don't have celiac.  So far, neither of my sisters have celiac.   One of my nephews tested postive for celiac.  I have 2 other nephews who were tested last week and we're awaiting the results. 

 

My question is about my two boys. How often should they be retested?  My ped is not very knowlegable about celiac and will test as often as I want.   I plan to talk to my GI about it but have found very useful info here too.

 

What have others on this forum done? 

 

TIA!


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kareng Grand Master

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I’ve tested with the genes for celiac disease, but I haven’t yet shown any symptoms for it. What should I do?

We recommend that you undergo a blood screen every 2-3 years or immediately upon the appearance of symptoms. This is especially true for 1st-degree relatives (parents, siblings, children) of someone with celiac disease.

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      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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      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.  
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