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Are Blood Tests Always Accurate For Celiac ?

Sharon Marie

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Sharon Marie Apprentice
Sharon Marie
Posted

I have a granddaughter and a great grandson that had negitive results in their blood tests for celiac. She suffers so from eczema ( think more likely Dermatitis Herpetiformis ). And he is having behavioral problems.

I know one symptom in children is ADHD. He is so skinny and hyper. Very sensitive and loveing when he is in control of himself.

I have celiac and I know it is inherited.

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Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to these boards.

I don't know how old those kids are. But those blood tests are notoriously unreliable in children under six, and are almost useless for babies and toddlers unless they are at death's door.

And in older kids and adults those tests are somewhat more reliable, but still far from perfect. A negative test can absolutely NEVER rule out celiac disease (and that goes for the biopsy as well).

My oldest grandson (now 5 1/2) looked like one of those starving third world children, just skin and bones until he was four years old. He was hyper, extremely emotional (crying for hours over little things, being inconsolable, and as a result treated like he was a wimp), and wanted to eat all day long. He would cry when my daughter would tell him that lunch (supper) was over and he wouldn't get any more until the next meal.

Finally last year she saw the light and put herself and her five kids on the gluten-free diet. What a difference! Little Ethan stopped being so emotional within days, and immediately started putting on weight. He is a very normal little kid now. Still slim, but not skin and bones. He is heavy! Before it would frighten me how light he was when I picked him up.

Eczema could be caused by dairy, gluten, nightshades, corn, eggs or other intolerances. If you think that your granddaughter's eczema is DH, you may be right, as you probably know what it looks like.

In her case, having a skin biopsy (taken BESIDE an active blister, my idiot dermatologist took mine right in the middle of the rash and then told me I definitely didn't have DH) would be a good idea. If it comes back positive, she would have an official celiac disease diagnosis. If it is negative, I would try the gluten-free diet anyway, was gluten can cause psoriasis and eczema as well as DH.

Maybe you could convince the parents to just try the gluten-free diet anyway? And if not, maybe they would be receptive to testing with Open Original Shared Link, which is much more sensitive than a blood test.

itchygirl Newbie
itchygirl
Posted

I'm totally with Ursa Major because I had to have three biopsies before they got it right. The derm has to know what they are doing, and the lab has to know how to read it.

gfp Enthusiast
gfp
Posted
my idiot dermatologist took mine right in the middle of the rash and then told me I definitely didn't have DH)

This just illustrates how unreliable testing can be when the people taking the tests don't know what they are doing.

The same goes for blood tests and biopsy and tsting children in general.

Its not a black and white test even if sampled correctly. Its about levels above 'normal'.

Many things can influence the tests ... and like any other of this type is someone with a result of 19.5 sicker than someone with 20.5 if the 'normal high range is 20. Perhaps the same two people sampled a day later would have reversed results. Is one positive and the other negative?

Secondly, if you stick to the diet then the numbers SHOULD go down. This doesn't mean you are cured.. it means its under control ...

By the time many of us actually get a test ... we have already tried everything, celiac disease is like that! Its the last thing the Dr. tests for in many cases and many of us already noticed we feel bad eating wheat so we either cut it out or reduced it ourselves.

When you add to this the random element of how experienced the person taking the sample or blood is and lack of advice that we must eat gluten for a period before testing then it really adds a random element.

So its worth repeating Ursa

A negative test can absolutely NEVER rule out celiac disease
AllieB Newbie
AllieB
Posted

My blood work was defintively negative. Finally after two years on a gluten-free diet, they did a biopsy and found celiac related damage, even after two years gluten-free. My son has negative blood work, when he is 100% gluten free, he stops complaining about stomach aches and he doesn't act like he has a hole in his stomach. My niece has negative blood work, and at nearly five she is the size of an average 2 year old. Is it celiac? I don't think my sons will die if they are on a gluten diet, but I don't think it's doing them any good either.

Sharon Marie Apprentice
Sharon Marie
Posted
  • Author

Thanks for the output I will pass it along to my Grand daughter.

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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