I'm The Only One :(

[fisharefriendsnotfood]

There is NO ONE in my whole family that knows they have celiac disease. I found out it was a genetic disease a few weeks ago, and was like, then how do I have it? I suspect it's from my dad's side of the family, because my aunt has stomach problems but has never been tested for celiac disease. I really think she has it though.

And then, my uncle on my mom's side is "allergic to wheat". I don't think he's been formally tested to a wheat allergy, it just "bothers him". He's not even wheat-free though; we had my family over for a family member's birthday and he ate the white birthday cake, which is obviously not wheat-free.

But I still think it's from my dad's side.

BUT, neither of my parents have it I think, because they have NO symptoms of Celiac at all. I don't think they've been tested though; but still, they're both tall and at normal weight.

WHERE DID MY celiac disease come from???

Thanks,

Jackie

[skoki-mom]

I got tested because my sister was diagnosed last winter. Like your parents, I don't have any symptoms, never have, maybe I never would have become symptomatic, who knows. Our parents have also tested negative, but they both have bowel "issues". In fact, I am the only member of the family that is normal in that department, go figure!!! What I have learned so far is that it seems to be a recessive gene, so both parents must carry it, but a recessive gene is needed from both of them for us to have celiac disease. I read an article that says family members should be tested for antibodies througout the course of their life because the celiac disease could become "active" at any time. I think a lot of family members avoid screening because they just really don't want to know. I admit I have had many a moment when I wish I'd never had that blood test, even though I know it was the "right" thing to do. Sometimes being responsible really sucks, lol. Chances are if your siblings (if you have any), aunts, uncles and cousins were tested, someone else would have it too.

[KaitiUSA]

Some people do not get symptoms with celiac so you can't tell with symptoms. You have to get a full celiac panel to detect it. Allergy tests will not pick it up because it is not an allergy. It is genetic but it could be traced back generations..your parents do not necessarily have to have it but they have the gene for it. If they have the gene then it can be activated at any time so they really should be tested every so often to make sure.

I can tell you now...throughout your families history...someone had it along the way...probably a few people...even if they did not know it.

[jams]

Am I understanding it right that BOTH, mother and father must have the gene? I think mine is from my dad's side. My mom was tested but was negative. I am not sure what they tested either. I am having detailed test results sent to me from my last test. They just said it was "normal". I am not sure what they all test for where we go to the doctor. We go to the same clinic just different doctors.

My dad will never get tested. He loves beer too much and hates the doctor. I have read a lot about celiacs, but this part has always been a little hazy for me.

Thanks to anyone that can help clear this up!!

[skoki-mom]

Try this link! I thought it did a good job of explaining the genetics behind celiac disease.

www.uchicagokidshospital.org/pdf/uch_007936.pdf

[newo ikkin]

I'm not sure where mine came from either only because no one in my family wants to get tested. My mom and 2 of my siblings got bloodwork done but that all come back negative. So unless some others in my family suck it up and get tested I won't know.

[Guest nini]

no one else in my family is willing to get tested... my dad is the only one who was willing to "try" the gluten-free diet and see if it helped him (it did)... I think both of my parents have it, and my sister, and there's and aunt I'm really sure has it, but NO ONE is willing to get tested. I wonder why this is...

[skoki-mom]

no one else in my family is willing to get tested... my dad is the only one who was willing to "try" the gluten-free diet and see if it helped him (it did)...  I think both of my parents have it, and my sister, and there's and aunt I'm really sure has it, but NO ONE is willing to get tested. I wonder why this is...

<{POST_SNAPBACK}>

Because they don't want to know, they don't want to go on the diet. I have often thought I wish I didn't get tested because I'm not *sick*, as in I don't have symptoms, but I do know it is better in the long run for me to know. But, that is why they won't get tested, they are scared it will come back positive.

[bluelotus]

Try this link!  I thought it did a good job of explaining the genetics behind celiac disease. 

www.uchicagokidshospital.org/pdf/uch_007936.pdf

<{POST_SNAPBACK}>

thanks for the great pdf. others were talking about the inheritance of this disease a week or so ago and I tried to explain that most genes, and most diseases, are not inherited in the typical recessive fashion (very different from what they tell you in high school bio.) and that even having a gene for something doesn't mean you will get it. genes don't act/work in solice and instead work together with many others, which is why genetic counseloing is never exact (except for maybe blood type or color blindness).....and then you have to take the environment into account in addition to other genes. all of this together is why things like genetic disease and cancer are so difficult to predict. we have around 30,000 genes, imagine designing that algorithm to predict inheritance.....!!!

[Guest gfinnebraska]

I don't know where mine came from either. My brother doesn't want to "know" ~ he would never switch to a gluten-free diet. Neither one of my parents "seem" to have it. My other relatives all live in Sweden, so no way of knowing! I just pray that I don't pass it on to my sons.

[tarnalberry]

Well, not only do you not need both parents to give you the gene, but having the gene doesn't mean you will definitely get celiac. It has to be triggered. Many more people carry one of the genes without developing celiac disease or gluten intolerance.

[nettiebeads]

I'm the only one in my immediate family and don't know of any aunts, uncles, grands or cuz that have it. But it's probably from my mother's side (100% Swede and as stubborn as they come)

[Guest gfinnebraska]

(100% Swede and as stubborn as they come)

<{POST_SNAPBACK}>

LOL ~ Same here, Nettie! I'm 75% Swede and just about as stubborn (or so my family says...)

[ponita]

Since my dx, I found that I have celiac disease on both my mother and father's side. On my mother's side, my grandmother, aunt and 2 cousins have it, on my father's side it's 2 cousins. No one discussed it until I was dx'd which I think finally put a name to all the symptoms others were having.

Hey, look at this the bright side, I can go to family reunions with 'safe" foods!

Gotta laugh!

Interesting note: my mother's side of family is swedish, fathers side Czech.

Melissa

[luvs2eat]

I'm the only one in my family... altho my brother or sister refuse to be tested. They have, I'm sure, the derm part of celiac and because they can take meds (for eczema, etc) they're not willing to give up their yummy breads.

My daughter was just diagnosed.

[fisharefriendsnotfood]

Thanks everyone for all the great replies!

My sister had the blood test when she was really little, but it came back negative. I thought that meant she doesn't have it; she could have it even if it came back negative???

I asked my dad about it yesterday but he said maybe someone had it, like a great-grandparent or something.

Thank you!!!!!!!!!!

-Jackie

[KaitiUSA]

Thanks everyone for all the great replies!

My sister had the blood test when she was really little, but it came back negative. I thought that meant she doesn't have it; she could have it even if it came back negative???

I asked my dad about it yesterday but he said maybe someone had it, like a great-grandparent or something.

Thank you!!!!!!!!!!

-Jackie

<{POST_SNAPBACK}>

If someone has the gene then it can be triggered at any time in life. So just because you test negative younger does not mean you do not have it now- it just means at that point it was not triggered. If there is people in the family with it, everyone should be tested every 2-5 years(sooner if symptoms appear) to make sure it has not activated. Symptoms doesn't really matter with celiac though...they may have it and not even realize it...or maybe theirs just was not triggered.

[Guest BellyTimber]

Their symptoms are nerve, bone, skin, etc symptoms, even heart.

Just about every part of the body.

Also overweight.

If you include these there will be less people without symptoms of celiac disease and equivalent but the principle still applies, it just hasn't expressed itself in these ways yet.

If you put suitable words in the serahc faciliy you will come up with the list of 200 symptoms someone posted a few months ago

.

[dogear]

Because they don't want to know, they don't want to go on the diet.  I have often thought I wish I didn't get tested because I'm not *sick*, as in I don't have symptoms, but I do know it is better in the long run for me to know.  But, that is why they won't get tested, they are scared it will come back positive.

<{POST_SNAPBACK}>

People can be stubborn. Personally though, I'm glad enough not to have the medical risks associated with celiac. But I would RATHER DIE THAN NOT BE gluten-free. I would rather be tortued the same way people were at Abu Gharib than intentionally cheat on my diet.

If I ever ended up intentionally eating wheat, I would probably feel as bad about myself as a born again Christian would about going into prostitution six months before her wedding.