Can You Have Celiacs Even If Nobody In Your Family Does?

[fozbery]

I am currently waiting for biopsy results and my gastroenterologist thinks I have celiacs but nobody in my family does however my mother complains of IBS and fatigue.

Sorry if that's a silly question!

Thanks

[eatmeat4good]

It is not a silly question.

No one in my family is diagnosed with Celiac either.

There are people with symptoms, but no one has the diagnosis.

When you consider that 1 in 133 people have Celiac and 90% of them are undiagnosed, it makes sense that a lot of us will not have family who are known to have Celiac.

That doesn't mean they don't have it.

It is a hereditary disease. That means others in your family have it or some of your ancestors had it.

Just because a hereditary disease has not been diagnosed doesn't mean it isn't there.

I think Celiac is just coming to light and you may be the first to be diagnosed in your family. Many in this generation, or I should say generations, are just now getting diagnoses for gluten intolerance and Celiac, both have probably been in existence in the family trees for generations, but the symptoms weren't discussed, treated, or diagnosed. You and I may be the first ones in our families to have a name for what we have.

The first time I came across Celiac, I thought, "Well, everything matches, but it can't be that, because no one else in my family has it, and if it were a hereditary disease others would have it too."

How false that thinking was.

I probably stayed sick another 2 years on that falsehood alone.

I don't understand the genetics of it all, but it might be possible that it could skip generations and yet be passed on to future generations.

I let all my extended family know for that reason.

I think that is why they recommend family members be tested, as some with Celiac can have it and have no obvious symptoms. So the symptomatic family members are the ones who bring the disease to light.

In previous generations, people just lived with what ailed them, and there was no linking symptoms to diagnoses. That is a modern concept.

The fact that testing has such high rates of false negatives is also a reason more people aren't diagnosed. So many people who test negative still walk around with Celiac thinking they are fine when they are not. It is scary really.

I'm grateful I know now.

Has your family been tested?

Mine haven't taken the Celiac concern very seriously.

[fozbery]

Nobody else has been tested. There is really only my mother who has mild ibs and always tired. Everybody says they are completely healthy and normal.

I wonder how many people with IBS have all the symptoms of celiacs but not actually celiacs. That's what I'm frightened of. A diagnosis of ibs would be so frustrating because it's so hard to treat and manage.

[seashele2]

My sister-in-law is the only person in my husband's family who has celiac and everyone living has been tested. In my family, my uncle has it, I have it and my daughter has it. I guess it just depends on the family. Other autoimmune diseases are the same way. I am the only person in at least 5 generations in both my mom and my dad's families who has type 1 (juvenile onset) diabetes. Even hereditary diseases have to start somewhere, I guess.

[ravenwoodglass]

Nobody else has been tested. There is really only my mother who has mild ibs and always tired. Everybody says they are completely healthy and normal.

I wonder how many people with IBS have all the symptoms of celiacs but not actually celiacs. That's what I'm frightened of. A diagnosis of ibs would be so frustrating because it's so hard to treat and manage.

Since false negative testing for celiac is not uncommon many of those who have symptoms but are not diagnosed could well be celiac. I had the IBS diagnosis for most of my life but because I test negative for celiac in blood tests no one would look any further. My new GI stated that he advises folks who test negative to give the diet a strict try for at least a couple months no matter what the test results.

[Emilushka]

Nobody in my family has Celiac or even a hint of similar problems. I'm the only lucky winner, and I'm confirmed by blood work so I'm even "officially" Celiac.

[cassP]

of course its POSSIBLE for noone in your family to have it- but i think its rather likely that more in your family & extended family do.

your mother's "IBS" & fatigue sounds very much like Celiac or Gluten Intolerance. also know- that most Celiacs have no stomach issues at all and would never suspect having it. or they may have some Neurological or mental or skin issues.

for Celiac- you have to have the genes- and an environmental trigger- so its very likely that many in your family & extended family either have it, or are just carrying some of the genes. some literature says that all immediate family members of a Celiac should be screened... yet i am FIGHTING tooth & nail to get any of my family tested OR my PCP to even consider it with my family. i told her i really think my dad has it- but she said: "does he have stomach problems??".. i said "no, but most people dont" why is it such a battle