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Genetic Testing For Celiacs

EmilyR83

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EmilyR83 Rookie
EmilyR83
Posted

Hi, I am Emily and we just found out that my 14 month old son has celiacs. He had a genetic test done. I dont know the name of it or anything though. They said that he was 18-whatever that means. Anyway, so anyone that had a genetic test done, did you get a number? Sorry if I sound really dense-I am trying to figure out what this all means.

also-they said the normal range(to test negative for celiacs) was 24 to 100and some.

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sugarsue Enthusiast
sugarsue
Posted
Hi, I am Emily and we just found out that my 14 month old son has celiacs. He had a genetic test done. I dont know the name of it or anything though. They said that he was 18-whatever that means. Anyway, so anyone that had a genetic test done, did you get a number? Sorry if I sound really dense-I am trying to figure out what this all means.

also-they said the normal range(to test negative for celiacs) was 24 to 100and some.

Please someone correct me if I'm wrong... but it's my understanding that the genetic tests show whether you have the Celiac gene but does not diagnose celiac. Did you get a diagnosis from a doctor? Can you find out the name of the test? We have not done genetic testing but I've always been interested.

Susan

EmilyR83 Rookie
EmilyR83
Posted
  • Author

I dont know the name of the test. Just that my doctor said she was doing a genetic test for celiacs. It was a blood test. He has been gluten free for over a month. I dont care if I have the official biopsy done and have a result. According to the blood work, my doctor said that he does have celiacs. He has all the symptoms. He was 16 lbs at 13 months and weighed less than he did at nine months. He screamed nonstop. He hadnt grown at all-height weight, head, feet-nothing. They started him on a gluten free diet and he gained a pound and a half in 4 weeks. he never cries anymore. All I care about is my baby is happy. My doctor says he has celiacs, but I dont know about an official diagnosis though.

psawyer Proficient
psawyer
Posted

Genetic tests show whether you are susceptible to developing celiac disease, but can not rule it out. Among those who are genetically susceptible, only a small number actually develop the disease. If the recognized genetic markers are absent, then your chance of developing celiac disease is minimal, but it is not zero, as cases have been identified in patients who did not show any of the marker genes.

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      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.
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