What Are The Odds?

[ptkds]

Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

[JennyC]

I thought I read that those with a first degree relative with celiac disease have a 20% chance of having the disease. Either way, I don't think anyone would claim to have the genetics totally worked out. What is known is that there are multiple genes involved, and I think they are all recessive. Each of your children has the same likelihood of developing Celiac disease. However, the chance that all of them will have it is pretty small, but nonetheless very possible.

[MySuicidalTurtle]

I don't think there can be definite percentages since it is so hard to diagnose people in the first place. My Mother has Celiacs, I have it, and my Brother does, as well. We are her only children.

[cruelshoes]

I know a family from church that has 5 kids. Mom has it, and all 5 kids have it - confirmed by biopsy.

If I think back to my college statistics class, the chance for each relative of a celiac would have the same risk of having it (is that a combination or a permutation - can't remember). So the chance would not increase or decrease with any subsequent family member diagnosis.

There is also the option of the genetic test for your DH. If he does not possess the genes for celiac, his chance of having it would be much lower.

[ravenwoodglass]

Well..... I am the celiac in my house who did not show up on blood work and I am the most damaged and the first one diagnosed, it only took 40 years with the last 15 being very sick. LOL After blood testing we discovered that both kids and DH were positive. One of the reasons he agreed to test was because since the kids show up on blood tests and he is the natural father of one of them that he might also carry one of the genes. I am glad he was tested he did not have the usual symptoms and was quite surprised when a number of what he thought we not gluten related problems, or stuff he thought was normal like fatigue and gas, cleared up.

[gfpaperdoll]

Celiac is more common that you can ever imagine. Read some of Dr Fine's statistics & there are some of us that think that is even understated.

In my family it has skipped no one, although they all have their heads stuck in the sand & refuse to acknowledge it. & among my friends there are a lot that have it. Just the other day at work I was talking to a lady (54) & she said her daughter was sick (about 18) that she had spells of Diarrhea & was so sick she was in bed, she has had this off & on for 4 years . When I told her about celiac a light bulb jsut went on in her head, her mother & grandmother had the same thing with the stomach, the diarrhea etc & her mother died of stomach cancer. Of couse she also has bouts of unexplained diarrhea & she could never figure out what it was When she told her ex about celiac (the daughter lives with him) he said that he knew about it but did not think that she had it because she did not have diarrhea all the time. what a nerd!!! The mother was a little outraged that he had not mentioned this to her & said what would it hurt to try the diet, or get tested - I gave her the info...

I think that your kids are lucky to find out that they have a problem with gluten, better than some kids where the parent is gluten-free & still feeding the kids gluten, I have no idea how someone could do this when they know how poisonous it is to your body. But the medical community & the celiac community & the general population - heck almost everybody thinks that is perfectly fine to eat gluten until the villi are damaged, that is if you are not dead from cancer or something else first.

I do hope that you have a gluten free house for your kids, it is just so much easier & probably both you & your husband have it. You could get the gene tests from Enterolab.com if you want to know the whole picture.

[amberleigh]

I'm new to "celiac-land" and can hardly remember my biology classes from college, but I think if it were recessive, your husband would have to have it (or at least be a "carrier" for it), right? Can you be a carrier of this disease?

Anyway, does anyone know how much environmental factors play into this? I find it odd that I had no symptoms for 22 years of my life, had one major episode during a time of high stress, lived relatively symptom-free for another 6 years, went through my 2nd pregnancy and now am dx'd with celiac disease.

And neither of my parents have been tested or dx'd with celiac disease...they do not have any symptoms.

[aikiducky]

It's not a simple recessive/dominant thing with celiac genes, you inherit bits and pieces from both parents, and it's possible that neither parent has the complete set and still a child ends up with celiac genes. It's also possible to have the celiac genes but to never get sick if the disease isn't triggered. Celiac can be triggered by things like stress, or pregnancy, or an infection, surgery.

It would be wise to have all first degree relatives tested for the antibodies, symptoms or not. It's possible to have celiac with no symptoms.

Pauliina

[Janeti]

  ptkds said:

Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

I know what you mean. I have 2 children, ages 20 & 22. My son(22) has had symptoms for 4 years now, along with a major personality change. Within the last 2 years has developed DH. At one point I had taken him to the ER, it was all over his neck and chest, and they had no idea what it was. He hates the way he feels, and just this weekend I went to a wonderful website that shows pictures of DH, he hates to think he has celiacs too. He leaves back for college next month, and it's going to be hard, as I am learning about all foods myself. My daughter is constantly tired, and has joint pains. She doesn't even want to listen to me. I know that she has it also. I think the chances of our kids inheriting this gene is a great one.

[gfpaperdoll]

If you have two celiac or gluten intolerance genes (to be politically correct here ) you pass one to each of your children. If you only have one gene you have a 50% chance that each child will get that gene. For people that tests for the genes & do not go thru Enterolab.com where they test for the gluten intolerance genes also, & you think you only have say one DQ8 gene, you might in fact have a DQ8 gene in addition to a DQ1 or a DQ3 etc etc.

If a person has two of the genes then that means that they got one from each parent

[sfm]

  ptkds said:

Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

Did your husband have the genetic testing done? Because that's the way it is passed on, whether he has active celiac or not.

[sfm]

  gfpaperdoll said:

I think that your kids are lucky to find out that they have a problem with gluten, better than some kids where the parent is gluten-free & still feeding the kids gluten, I have no idea how someone could do this when they know how poisonous it is to your body. But the medical community & the celiac community & the general population - heck almost everybody thinks that is perfectly fine to eat gluten until the villi are damaged, that is if you are not dead from cancer or something else first.

I do hope that you have a gluten free house for your kids, it is just so much easier & probably both you & your husband have it. You could get the gene tests from Enterolab.com if you want to know the whole picture.

Please don't judge how parents handle their own gluten intolerance. My children don't eat a lot of gluten - but both have been tested, negative. Gluten may be poison to my body, but I don't see the need to place the same restrictions on them as I have to live by.

I will have them retested regularly, and if it does become necessary, of course I would put them on a gluten free diet.

[kbtoyssni]

It's possible your husband has the celiac gene but doesn't have celiac disease himself. If he was tested via blood test or biopsy that could easily be the case.