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What Tests For A 5 Year Old?


sandsurfgirl

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sandsurfgirl Collaborator

I was diagnosed 3 weeks ago with celiac and I think my 5 year old son has it. We've known he has wheat and dairy intolerance for a long time but were told, like I was, that we could have it in moderation. Of course gluten never came up as an issue.

I am nervous to deal with doctors for my son and the ignorance that I dealt with my whole life of being misdiagnosed. I'm hoping his ped is knowledgable but you never know.

What tests have the best accuracy rate for a 5 year old? I have read that some tests aren't sensitive enough to diagnose young kids.


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ravenwoodglass Mentor

Start out with the same tests that are use to diagnose adults. Get the blood panel and if you want one a biopsy. With your being diagnosed your ped should have no issues doing this. If those come back negative then you can think about perhaps doing Enterolab or just take him gluten free and see what happens.

sandsurfgirl Collaborator

The thought of anesthesia and a biopsy for my 5 year old just kills me. I want to cry thinking about it.

I guess we can start with blood and maybe even do Enterolab first. I know it's controversial but it's a place to start and it's not invasive.

I don't mind just doing the diet, but since it's a lifelong commitment I want him to have a diagnosis if possible so I can get him to comply when he's older. He's a stubborn one!

mommida Enthusiast

I know how you feel about the endoscopy.

I cried when they took my daughter (7years old) away yesterday. She has been through it before and was quite the little pro as the 11 year was pitching quite the fit.

Make sure you trust your child's doctor! That helps a lot.

Some points to remember, that endoscopy can rule out a lot of other problems. i.e.

congenital defect

H. Ployri

parasites (a stool collection check should be done first)

eosinophils

leaky gut

the list can go on and on

It can also be used to determine the track of healing in follow up endoscopies. (if needed)

In my daughter's case, we now know she is doing better and I have the relief she shouldn't need to be on a feeding tube! That testing needs to be done in other areas to find out why she is having abdominal pain, weight loss, headaches, salt cravings, and so on. The big thing the refferal to another specialist because the Celiac and EE has been ruled out as the causeof these problems.

  • 2 months later...
Mizzo Enthusiast

I was diagnosed 3 weeks ago with celiac and I think my 5 year old son has it. We've known he has wheat and dairy intolerance for a long time but were told, like I was, that we could have it in moderation. Of course gluten never came up as an issue.

I am nervous to deal with doctors for my son and the ignorance that I dealt with my whole life of being misdiagnosed. I'm hoping his ped is knowledgable but you never know.

What tests have the best accuracy rate for a 5 year old? I have read that some tests aren't sensitive enough to diagnose young kids.

We dealt with A GI specialist at Children's hospital in Boston, ma. I would recommend a children's hospital or pediatric specialty facility.

Our 6yr old girl had bloodwork which was very high and then the endoscopy a week later. Knowing we would get an answer and not a guess was well worth OUR anguish over the endoscopy. She did fine , even asked for a second icepop in the recovery room for her slightly sore throat. Yes she had a mildly sore throat for 24hours, and tried to convince me for 2 more days she needed more ice cream. No post op problems whatsoever. Our relief in getting a diagnosis in a few days after a year and a half on laxatives and high fiber foods for a misdiagnosed chronic constipation was worth it.

Her Villi were completely atrophied by the time the scope was done. Here i was increasing her fiber intake ie: Wheat, oats, etc... for the " constipation" per Dr. orders.

So yes I understand the frustration.

The test was pretty simple. They put them to sleep with a mask first, before they IV them. An hour or so prep time, 30 + minute surgery time (they do a biopsy during the scope), then an hour post op time. You will spend much more time than that worrying over it.

Good luck.

  • 2 weeks later...
mollie dog Newbie

I was diagnosed 3 weeks ago with celiac and I think my 5 year old son has it. We've known he has wheat and dairy intolerance for a long time but were told, like I was, that we could have it in moderation. Of course gluten never came up as an issue.

I am nervous to deal with doctors for my son and the ignorance that I dealt with my whole life of being misdiagnosed. I'm hoping his ped is knowledgable but you never know.

What tests have the best accuracy rate for a 5 year old? I have read that some tests aren't sensitive enough to diagnose young kids.

My little 5yr old girl recently had bloodwork done because her pediatrician thought she should weigh more than 33lbs at 5yrs old. Something in her bloodwork was elevated and consistent with celiac disease so they booked her in for a biopsy of her small intestine. It was scary at first but she did awesome and yes had 2 popsicles as well. Diagnosis was celiac and so now she's been gluten free since Wednesday - so far so good....

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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