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6 Year Old About To Be Tested


jmrogers31

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jmrogers31 Contributor

My six year old is going to be tested with a blood sample this week for Celiac.  I was wondering what your thoughts were because her symptoms don't seem celiac related but gluten free seemed to help them.  She had a rash all over her stomach, legs, bottom, back, and forearms.  It isn't the celiac rash and the doctor described it as discoid eczema.  She wets the bed almost every night at age six and has extreme anxiety.  We started a gluten free diet about 3 months ago because I was gluten free and figured what could it hurt?  Well, the rash started to clear up within a few weeks after she has had it for months.  She stopped wetting the bed after about a month gluten free and she used to have a lot of issues at school including shouting matches with other kids, issues with paying attention, to almost panic attacks to dramatic improvement in behavior that the teacher is really stunned by.  Well, we took her to an allergy specialist for the rash and she wants a blood test which means 4 to 6 weeks of gluten again.  It has been a month now and the bed wetting is back, the rash is back, and the anxiety is starting to come back.  We decided we don't really care what the results say, she is back gluten free after this.  My question is, are these symptoms normal for kids?  Bed wetting, eczema, anxiety, attention issues?  She really doesn't have any GI issues at all. 


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stanleymonkey Explorer

My then 2 yr old had what we were told was excema, no creams fixed it, gluten free did. Her behavior was odd, she was scared of the stairs one day! That stopped gluten free. We're still,working on the bed wetting, but 2 1/2 yrs of chronic constipation have made it hard. I've read a lot of people on here mentioning anxiety as a symptom. Our youngest didn't have any GI issues beyond mild constipation, but she cried all day long, had bizarre rashes, gluten free she is happier. The eldest was tested at 3 for celiac disease but came up negative, but she had the genes. We went gluten free anyway. Her little sister was aneamic, that was enough for us. If she is obviously better gluten free, go with your gut and go gluten free after the testing.

Cara in Boston Enthusiast

After three months being gluten free, 4 weeks back on gluten might not be enough to get accurate blood tests.  Just know that a positive result means she probably has it but a negative result means the didn't detect it - not that she doesn't have it.  (Does that make sense?)   Don't let a negative result sway you into allowing gluten back into her diet.  

 

My son (diagnosed at age 5) had ZERO GI symptoms.  All we saw was a drastic change in behavior.

 

My symptoms included anxiety . . . .which went away pretty quickly after being gluten free.

 

Trust your instincts - you are doing everything right.

 

Cara

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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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      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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