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What Could This Mean?

mart

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mart Contributor
mart
Posted

Hi. Does anyone know what this could mean? My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive. He has all the classic symptoms, she only has a few. The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive. I read at the doctors office that this test was "99.98% accurate for life." I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year. If the test is so accurate, why do I need to retest in a year? In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it? It seems everything I ask the doctor is answered with a quick and dismissing "I don't know." Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?

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aikiducky Apprentice
aikiducky
Posted

I don't understand why doctors in general are so reluctant to recommend a gluten free diet anyway. Even when it's highly likely that a person has celiac disease, they'd prefer to see one eat gluten until there's extensive and maybe permanent damage before recommending the diet. :rolleyes:

A grumpy way of saying, yes, I wholeheartedly agree with you. Your daughter tested positive. I don't understand what they expect to change in a year. Better get on the diet sooner than later, and prevent all those future problems before they have a chance to develop.

Pauliina

Smunkeemom Enthusiast
Smunkeemom
Posted
Hi.  Does anyone know what this could mean?  My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive.  He has all the classic symptoms, she only has a few.  The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive.  I read at the doctors office that this test was "99.98% accurate for life."  I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year.  If the test is so accurate, why do I need to retest in a year?    In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it?  It seems everything I ask the doctor is answered with a quick and dismissing "I don't know."  Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?

<{POST_SNAPBACK}>

my daughter kathryn tests were weird and her doctor says that she "doesn't have it now but may develope it one day" and suggested that we keep her on a 'low gluten diet' and wait for her to get sick.

I talked to Kathryn about it (she is 4) and she wants to do the gluten free diet anyway, she says the food tastes good and that way maybe she won't even have to get sick (sounds smart to me)

Kathryn doesn't have the "bathroom symptoms" but does get stomache cramps and has tested slightly anemic though, and sometimes she has really really cranky days and then I remember what all she ate, and it was a whole load of gluten, she was wanting to wait until after tonight to go gluten-free (we went to a hayride with smores) she has decided now that she has had smores that they weren't a big deal and she can live fine without them so tomorrow is her first gluten-free day.

anyway sorry for the long post, talk to your kid and see if she wants to commit to gluten-free for a year or so to see if she feels better and if she grows any, chances are that after a year she will feel so great she won't want to go back... :D

Indea88 Newbie
Indea88
Posted

That was enough for me. A positive genetic test, the DQ2. When I heard this about my 2 year old who hadnt had a formed stool since birth, I started the gluten free diet that day. My toddler is a different child. It sounds like your daughter had positive genetic testing.I know it is harder at this age. My other son who isnt positve is 11 and I know it would be all together different for this age child to begin gluten-free but she will feel better and know the difference...

Guest nini
Guest nini
Posted

I would put her on the gluten-free diet ASAP...

I am so sick of the Dr.s that adopt this "wait and see" attitude. Oh lets keep feeding this child POISON and see if in a year she's any sicker... WHAT???? :blink::blink:

With a brother that is pos. and having some pos. bloodwork, WHY WAIT FOR IT TO GET WORSE??? and it will get worse. Maybe not until she is an adult and trying to have a child and has recurrent miscarriages or infertility. It will get worse.

IMHO it is better for your entire household to go gluten-free especially with your son's pos. results. It will make it easier on all of you in the long run.

Don't feel like you have to spend a lot on specialty foods, stick with a healthy diet of meats, fruits and veggies that are naturally gluten-free... there are a lot of options out there.

Carriefaith Enthusiast
Carriefaith
Posted
I read at the doctors office that this test was "99.98% accurate for life."
which test did she have?

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      Seeking advice on potential gluten challenge

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      Seeking advice on potential gluten challenge

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      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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