Coeliac testing

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Does anyone know if you can have a negative coeliac test and yet still have it?

My son has been what my granny would have called "very sickly" all his life. He was failure to thrive as a baby, serious acid reflux, food refuser, constantly ill, speech delayed, slow to walk, tiny. Tested for everything, was lactose intolerant but negative coeliac. Later neurological issues, epilepsy, ADHD etc etc. Now at 19, small for his age, pale, frequent headaches, frequent sickness, thin, stomach pains and indigestion.

I think he may be coeliac and his test as a toddler could have been wrong? Does anyone know if that's possible?

Yes. The coeliac U.K. site says it’s possible to have coeliac but negative blood test results. Def worth approaching the GP for another blood test initially and go from there.

Has he tried cutting gluten for a few weeks to see if he feels better?

He won't. He's very stubborn and eats a limited diet which is very gluten heavy. He doesn't want to contemplate cutting out gluten!
I think he might with an actual result though.

If he hasn’t been tested in nearly 20 years, I certainly would encourage him to get re-tested. And explore other things. He’s a grown up now though so will have to sort it out himself.

I don’t know what type of test he would have had as a toddler, but I think testing has improved which is why there has been an increase in people being diagnosed. The initial test now is a simple blood test that looks for antibodies to gluten. If that is positive then an endoscopy with biopsy is carried out to look for damage of the villi in the small intestine. My husband tested positive age 58 after requesting blood tests for unrelated symptoms, he had no idea he was coeliac. I don’t think it would be unreasonable to request the blood test now considering the symptoms he has, at least you would know one way or the other and can either rule it out or confirm the diagnosis and make dietary changes. The key thing is make sure he has been eating gluten at the time any tests are done, (in case he has stopped or limited intake) otherwise there is a risk of negative result. Hope he gets some answers one way or the other.

You can have a severe gluten intolerance with a negative celiac test. There is also seronegative celiac disease that doesn’t usually show up on a blood test.

Well he is and he isn't! He still needs my help with this kind of thing.

Absolutely possible.

2 Family members were diagnosed negative and were later found to be positive through other tests.

The first one was a massive shock but a relief it wasn't something worse, the second one we pushed for additional tests because it was quite obvious that it was a repeat of the situation with the first family member.

What I mean though is you can’t force him. He will have to want to pursue these investigations.

How is his diet generally? You say it’s limited and gluten heavy. One thing to consider is generally is vitamin deficiencies. There are lots of things that could make for a “sickly child” if they have long been deficient. If he has had ongoing issues with reflux throughout childhood, that’s quite unusual and might warrant if there are structural issues that might have caused that.

If he only had a blood test then yes it's very possible he has it despite the negative test. It's the endoscopy that really diagnoses coeliac disease.

Thanks for all the posts.

It just hit me like lightning after yet more vomiting after he ate a large pizza..."why am I taking it as fact that he's not coeliac when he has literally all the symptoms, just because he had a negative test 15 years ago?"
I feel like an idiot.

Diet is not very good, but recent blood tests only showed low b vitamins and iron and folate, which his now well supplemented for. Reflux eventually resolved but now has acid indigestion and heartburn, a recent development.
GP seems quite blase and as if I'm an over anxious meddling mother, but he's not well most of the time.