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Interesting Question About Diagnosis

Jaysonguy

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Jaysonguy Newbie
Jaysonguy
Posted

Ok, I have a friend who may have Celiac disease.

The reason I say "may" is because she had the gene testing and they said she has one of two genes.

The doc says if she takes it again and only has one of two genes the doc is going to take her off a no gluten diet and let her eat everything.

Is this how it works?

Do you need both genes to really have it?

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happygirl Collaborator
happygirl
Posted

No, she does not need both genes for it. Just having the gene does not mean that you have Celiac. But, about 99% of people who have Celiac, have one or both of the genes (they are still trying to figure out if there are other genes involved).

The blood testing is usually the "first" step in diagnoses. There is the full Celiac panel (blood test) that needs to be run. Following that, some doctors will order an endoscopy/biopsy to document the damage done to the villi of the intestines (which is a hallmark sign of Celiac).

Hope this helps.

Rachel--24 Collaborator
Rachel--24
Posted

Having a gene doesnt mean you have, or will ever get, Celiac. Many many people carry a celiac gene and most of those people never actually end up developing the disease. Blood tests, biopsy and most of all response to diet are better indicators.

plantime Contributor
plantime
Posted

Why take her off a glutenfree diet? There's nothing unhealthy about it.

Jaysonguy Newbie
Jaysonguy
Posted
  • Author
No, she does not need both genes for it. Just having the gene does not mean that you have Celiac. But, about 99% of people who have Celiac, have one or both of the genes (they are still trying to figure out if there are other genes involved).

The blood testing is usually the "first" step in diagnoses. There is the full Celiac panel (blood test) that needs to be run. Following that, some doctors will order an endoscopy/biopsy to document the damage done to the villi of the intestines (which is a hallmark sign of Celiac).

Hope this helps.

Having a gene doesnt mean you have, or will ever get, Celiac. Many many people carry a celiac gene and most of those people never actually end up developing the disease. Blood tests, biopsy and most of all response to diet are better indicators.

Thanks you two, so is there a sure fire way to know if someone has Celiac?

Why take her off a glutenfree diet? There's nothing unhealthy about it.

No but it's not the easiest thing in the world for some people, I've been doing it for almost 2 years now but I'm also just really good at it lol plus I don't mind making my own food and never eating sandwiches because all the bread tastes like many of the filtered words here and that cereal from a main producer is next to impossible and........

lol

Life is easier if you don't have to plan around a problem.

Rachel--24 Collaborator
Rachel--24
Posted
Thanks you two, so is there a sure fire way to know if someone has Celiac?

A positive biopsy with flattened villi is a sure fire way to know. Positive IgA and tTG would also be "proof positive". Other than that I'd go with what my own body is telling me. Does she feel bad when she eats gluten? Does she feel better not eating gluten? That would be a pretty good indictator. I'm not sure how long shes been on the diet but Enterolab can do stool testing and still detect antibodies several months after eliminating gluten from the diet.

CMCM Rising Star
CMCM
Posted
Ok, I have a friend who may have Celiac disease.

The reason I say "may" is because she had the gene testing and they said she has one of two genes.

The doc says if she takes it again and only has one of two genes the doc is going to take her off a no gluten diet and let her eat everything.

Is this how it works?

Do you need both genes to really have it?

You don't need 2 genes to have it. I was told that having the gene means you have a "predisposition" to it, and that it would be better to not eat gluten. Remember that there is a segment of those with celiac who have what is called "silent celiac" disease. They have no observable symptoms but intestinal damage is still occurring.

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

I would think that her doctor would order the "standard" tests before taking her off the gluten-free diet. Antigliadin, Antitransglutaminase and Antiendomysial antibodies, and then a small intestine biopsy. I think taking her off a gluten-free diet based solely upon genetic testing could be a big mistake.

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