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How Young Can You Test?

angie315

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angie315 Apprentice
angie315
Posted

My oldest daughter (4 years) was recently diagnosed with Celiac (via blood & biopsy). How accurate are the blood test for very young children. My youngest is only 14 months and my ped. just gave me an order to get her her blood work done. The only sign that she is showing is a very bloated belly at the end of the day and her weight % is starting to drop. I would love to know now if she has celiac now so that I can get her gluten-free immediately. I keep reading that testing can be unreliable in young children.

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Ursa Major Collaborator
Ursa Major
Posted
My oldest daughter (4 years) was recently diagnosed with Celiac (via blood & biopsy). How accurate are the blood test for very young children. My youngest is only 14 months and my ped. just gave me an order to get her her blood work done. The only sign that she is showing is a very bloated belly at the end of the day and her weight % is starting to drop. I would love to know now if she has celiac now so that I can get her gluten-free immediately. I keep reading that testing can be unreliable in young children.

Angie, it sounds like your baby may have celiac disease as well. But unless she is extremely ill (as in near death) it is highly unlikely that her tests will show anything. At that age diet response is the most reliable test.

Seriously, she is starting to show celiac disease symptoms. Do you really want to wait until she is failure to thrive and really ill and tests positive, or would you like to prevent her from getting so sick that her development pretty much stops? And that goes for not just physical development, celiac disease will affect the brain, too.

You older daughter has celiac disease. It is genetic, and so it is very likely that other kids in your family (plus at least one parent) will have it as well. If your baby was mine, I would put her on a gluten-free/casein free diet immediately to prevent her from getting very ill, and to make sure there will be no long-term damage. Plus, of course, children with undiagnosed and untreated celiac disease are more likely to develop juvenile diabetes as well. A risk I would never willingly take if I'd suspect celiac disease in a young child.

pinkdljj Rookie
pinkdljj
Posted
My oldest daughter (4 years) was recently diagnosed with Celiac (via blood & biopsy). How accurate are the blood test for very young children. My youngest is only 14 months and my ped. just gave me an order to get her her blood work done. The only sign that she is showing is a very bloated belly at the end of the day and her weight % is starting to drop. I would love to know now if she has celiac now so that I can get her gluten-free immediately. I keep reading that testing can be unreliable in young children.

Hi,

I had my 15 month old tested via her pediatrician after 4 weeks of diarrhea. Everything came back normal. I refused to believe it so I had her tested through Enterolab. Her antibodies for gluten are already way above normal and she has two sets of celiac genes. I took her off wheat asap and her diarrhea disappeared. I have either celiac or gluten intolerance and carry the genes so I knew it was the same fo her.

Enterolab was great. I just sent in a stool sample and within 2 weeks they had the results posted online. And, they can be off gluten and be tested.

Take care,

Leslie

dbmamaz Explorer
dbmamaz
Posted

I just want to let you know you arent alone in this struggle. My neighbor had a severely colicky baby, who basically didnt sleep the first few weeks at all unless sitting, and screamed all the time. Her doctors just kept giving her meds for reflux, but finally she told her husband to look up things on line. He suggested removing major allergens from HER diet - and it worked - the colick was gone and he became a fat and happy baby.

When he started on solids, the first few times she tried anything with wheat, he got sick/ear infection. The last time, she fed him wheat for almost 2 weeks and he became crying and miserable again. She took the wheat away, and he's back to being fat and happy.

She went to her doctor, who suggested taking the test - but she insisted that the test isnt accurate if the child is gluten-free (we have another neighbor w a celiac toddler). She contacted a pediatric gastroenterologist who said her son would have to be on gluten for 6 months for the testing to be accurate.

So now she's really unsure what to do. She doesnt want to put him back on gluten for 6 months, when she knows it will be awful, esp since false negatives are so common on young ones (her son is only around 6 mo). They are doing allergy tests next, and I suggested the genetic test - but its really hard with little ones.

However, since you already have plenty of gluten-free food in the house, it might be easy to do a food challenge and see what YOU think - take the little one off gluten for 2 weeks and then put him back on it, and see if you see a difference.

Good luck

angie315 Apprentice
angie315
Posted
  • Author

Question about Enterolab. I saw that it was pretty expensive. Did you submit to insurance and if so, did they pay it entirely?

Hi,

I had my 15 month old tested via her pediatrician after 4 weeks of diarrhea. Everything came back normal. I refused to believe it so I had her tested through Enterolab. Her antibodies for gluten are already way above normal and she has two sets of celiac genes. I took her off wheat asap and her diarrhea disappeared. I have either celiac or gluten intolerance and carry the genes so I knew it was the same fo her.

Enterolab was great. I just sent in a stool sample and within 2 weeks they had the results posted online. And, they can be off gluten and be tested.

Take care,

Leslie

pinkdljj Rookie
pinkdljj
Posted
Question about Enterolab. I saw that it was pretty expensive. Did you submit to insurance and if so, did they pay it entirely?

My insurance company did not cover any of it. It was almost $400 to test her. It was worth it though. Now I know for sure she is a gene carrier and her body is not tolerating gluten, something her doctor couldn't diagnose.

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