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If Dad Is Positive Why Is Child Not

Guest flowermom6117

By Guest flowermom6117
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest flowermom6117
Guest flowermom6117
Posted

Last December the doctors suggested that my 4 yr old daughter may have Celiac. I dove into all the research I could find, and low and behold I thought "Yes we finally found the answer". After blood work and biopsy the doctors said "nope she just has food allergies and gluten intolerance". I put my daughter on a gluten free diet anyway, and began trying to convince my husband that he was most likly Celiac. Some of my daughter symptoms have resolved, but not all.(but thats side tracking)

Last week he finally got tested, and I was right he was so positive with blood work that they don't even feel the need to confirm with a biopsy. What I'm wondering now is, Since my husband is positive was my daughters results a fulse negitive and should I have her retested? I'm already having problems with the school system in my area, and I just wonder if I had a positive test result if that would make it easier.

Also my husband was at the doctor for unusually swollen lymp nodes. We are going to a surgen to have them removed and tested. (his mother passed at his age of lymphoma) Has anyone ever heard of nodes swelling because of Celiac? My family has been through so much latley I just pray these lumps are a symptom of celiac and not cancer?

If anyone has any insight I would be greatful.

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

Last December the doctors suggested that my 4 yr old daughter may have Celiac. I dove into all the research I could find, and low and behold I thought "Yes we finally found the answer". After blood work and biopsy the doctors said "nope she just has food allergies and gluten intolerance". I put my daughter on a gluten free diet anyway, and began trying to convince my husband that he was most likly Celiac. Some of my daughter symptoms have resolved, but not all.(but thats side tracking)

Last week he finally got tested, and I was right he was so positive with blood work that they don't even feel the need to confirm with a biopsy. What I'm wondering now is, Since my husband is positive was my daughters results a fulse negitive and should I have her retested? I'm already having problems with the school system in my area, and I just wonder if I had a positive test result if that would make it easier.

Also my husband was at the doctor for unusually swollen lymp nodes. We are going to a surgen to have them removed and tested. (his mother passed at his age of lymphoma) Has anyone ever heard of nodes swelling because of Celiac? My family has been through so much latley I just pray these lumps are a symptom of celiac and not cancer?

If anyone has any insight I would be greatful.

It's possible your daughter tested negative, but does have Celiac, or at least gluten intolerance. The tests are wrong with 20-30% of people. You could wait and have her retested..but why wait until more damage is done?

Your hubby's swollen Lymph nodes are a sign that his body is fighting something. Most likely it's the Celiac disease, but because of his family history they will do a biopsy to make sure that's what it is? It's good that they're looking, rather than just letting it go.

I had many symptoms of Celiac for years and they went undiagnosed. Swollen lymph glands are the first thing my Dr. finally took seriously. Now that I'm gluten-free my lymph nodes have settled back down. Hopefully your hubby's will too.

Best wishes to you all for getting the answers you need to get on the path to wellness.

pricklypear1971 Community Regular
pricklypear1971
Posted

It isn't unusual for children to have negative blood work and endoscopes but still have a positive reaction to going gluten-free. They think perhaps the dont have enough antibodies and damage to show up on tests....unfortunate for testing but great she doesn't show obvious internal damage that they found (that's another problem - damage may be there but they didn't biopsy that area).

Of dad is Celiac that's a huge red flag for her doctors. Trial the gluten-free diet for her and if it works there's the proof. She could still get a dx of NCGI for school.

psawyer Proficient
psawyer
Posted

There is definitely a genetic association with celiac disease, but just because you have the genes does not mean you will get the disease.

If I recall correctly, 20 to 30 percent of the American population have one or both of the recognized celiac genes. Only about one percent actually develop celiac disease.

The genes are only part of the picture.

False negatives on tests are, however, not unusual--especially in young children. Retesting might be a good idea.

rosetapper23 Explorer
rosetapper23
Posted

Your husband is wise to get his lymph nodes checked out--for some reason, celiacs run a higher chance of developing lymphoma (perhaps his mother had celiac, too?).

Skylark Collaborator
Skylark
Posted

Retesting your daughter makes sense if you're having trouble with schools but you have to put her back on gluten for a couple months. The tests are not accurate on a gluten-free diet. It can also be harder to get the antibodies to show up in kids than adults.

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