How Do We Get Celiac?

[SanteeBay]

I know this may sound like a stupid question, but if we have Celiac disease, does that mean that one or both of our parents either have it or carry the genes for it? And what are the chances of me passing it to my children? I have 6 kids so my chances are probably higher just for the sheer number of how many kids I have...They were tested on Monday so we should know in about a week.Thanks for any information.

Melanie

[Jestgar]

It's a very good question and you're right. It is genetic, but your genes aren't all it takes to develop the disease. There are a lot of theories about what triggers the onset of Celiac, but no one has a definative answer.

If you carry the gene(s), there is a chance that some or all of your children also carry a gene. That doesn't necessarily mean they will develop the disease, but they should be aware of it their whole lives and watch for the symptoms.

[Guhlia]

It was recommended to me by my doctor (take it for what it's worth) to get my child tested every 5 years with no symptoms or at the onset of any symptoms. I have yet to have her tested because my pediatrician was resistant. She is now gluten free and doing much better. If you're worried about your children developing Celiac, you could always have them gene tested so you know which ones are likely to develop Celiac down the road. You could also go gluten free in the house which will essentially make all your children gluten-light. This may (or may not) delay onset.

[jayhawkmom]

I do not know the answer to your questions. But, I will share this with you. My older son, who is almost 9, was tested at 2 and 4.... both negative.

He was tested just last week....and at 8, he tested positive.

So, I do agree that if you have it.... and your children test negative, you might want to repeat it every couple of years.

A "dh" style rash and severe tummy aches prompted us to retest our son and we weren't really all that surprised by the results. Kind of frustrating - but yet.... now we know.

All 3 of my children are either gluten intolerant or Celiac. =(

[tarnalberry]

I know this may sound like a stupid question, but if we have Celiac disease, does that mean that one or both of our parents either have it or carry the genes for it? And what are the chances of me passing it to my children? I have 6 kids so my chances are probably higher just for the sheer number of how many kids I have...They were tested on Monday so we should know in about a week.Thanks for any information.

Melanie

Yes, in theory, at least one parent would carry at least one gene for Celiac, as it genetic. It doesn't mean they have it, of course, just the genetics.

[happygirl]

One way to prevent repeat testing of children is to have them gene tested to start with. This way, you will know which ones are at risk for "true" Celiac (versus non Celiac gluten intolerance, which can have similar symptoms, but does not show up on Celiac bloodwork). About 98% or so of Celiacs have either DQ2 or DQ8, so knowing which of your kids have the genes will save you effort/worry in the long run.

[annacsmom]

My daughter was diagnosed with celiac in August, after many doctors, etc..... We have four children and I started suspecting my 13 yr. old son, since he has had chronic stuffy sinuses his whole life, and the only other symptom was bad gas. We had him tested through enterolab and he has the celiac gene as well as a gluten sensitivity gene. Although he is in good health, except for the above, I have him on a gluten free diet. His malabsorption test came back totally negative, so I guess that means he doesn't have celiac yet. But I don't want him to go through what my daughter went through. I personally have never been tested, but I highly suspect I am the carrier, although I am in very good health. I look at my family history and suspect celiac and so I also am gluten free and sure enough, little nagging health issues that I have ignored have been going away. I consider myself gluten intolerant at this point. We have two other children. They both seem fine, but at least they'll know what to look for if things start happening. I do wonder if keeping my son strictly gluten free is the right thing to do, since he his very healthy. Plus, his sinuses haven't cleared up like I thought they would have.

[TestyTommy]

As I understand it, no one knows why some people get autoimmune diseases. They are definitely genetic, but some people get them and some people don't. One theory is that you inherit the potential to get an autoimmune disease, and then there is some sort of trauma to the immune system that triggers the disease. A lot of us can identify some sort of trigger that preceded our celiac disease.

[sunshinen]

One or both of your parents had the gene. And your kids have at least a 50% chance of inheriting the gene from you. For the disease to actually become active, however, (as mentioned by others) there has to be a trigger (theories are that a virus, trauma, emotional trauma, etc., somehow activates the gene). Chances are, even if your kids have the gene, they may never develop the disease. (Though there doesn't seem to be any realiable statistics to tell us how likely it is that you will develop the disease if you carry the gene. I read somewhere that if you carry the gene, there is a 95% chance of developing the disease at some point in your life. But I cannot find the study and that figure sounds entirely too high considering the amount of the population with the gene verses the amount of the population with the disease).

For the kids that come back negative, I would suggest having the gene test done, and then for those with the gene you can continue to do regular testing every 2-5 years depending on your comfort level. They have shown that the earlier it is diagnosed, the lower one's chance of developing cancer later in life, so the more you test, the better chance of catching it early and preventing severe damage and potentially life-threatening conditions, but also the more time and money you spend on tests when they may never develop the disease.

You may also want to suggest that your siblings, parents, and extended family be tested. 1 out of 133 people have this disease and 97% of them don't know it. And of course, the likelihood of having it goes up significantly when there is a relative with the disease. Better safe than sorry, right!

[Electra]

IN MY OPINION and my opinion only I don't really think they know what the odds are that Celiac will be passed onto your children. I've read literature that says first degree reletives of someone who has Celiac disease have anywhere from 5-30% chance of contracting the disease, but someone here says it's 50% (as far as inheriting the gene) so I'm unsure what the chances are. I don't really think they can even tell you difinitively what the real stats are especially since it's so misdiagnosed.

I have tested postive and I suspect at least 3 of my 4 children have it. My daughter has tested negative on the blood test (which is very common for a 2 yr. old) but she has DH, so we are actively trying to get her diagnosed through the skin biopsy.

I have another child who's vommitted almost daily since birth and he's had practically every test on the planet that all seem to come back negative. He's pale constantly, he gets every freekin flu that goes around (that none of the rest of us seem to get) and he's got asthma, and severe allergies. He had chronic ear infections and tubes in his ears. He got a perferated eardrum and the hole never healed so he had to have a patch inserted to aid it in healing. He tested negative to allergy skin tests so I'm almost positive that he's been battleing Celiac too.

My other son grew up normal, but since the stress of jr. high he has been a completely different child. He has semi-violent outbreaks (not at school FHEW) and frequent migraines, he is very "unmotivated" and hates to do anything, and would sleep almost constantly if you let him. He also has trouble concentrating and can't seem to retain infomation as well as he used to be able to. He's a very bright child but he gets distracted way too easily. He's been tested for ADD and all that and he's in the normal range. I suspect he has Celiac too.

I have one child that I do not think has an issue right now, but I also think my husband may have Celiac because he used to throw up as a kid just like my 5 yr. old and it was so severe (just like our sons) that his parents stopped having him eat almost everthing except plain potato chips and potatoes. YUP he survives on them.

I wonder if my husband and I both have Celiac or I have Celiac and my hubby has the gene then what does that up my childrens chances to?

All 4 of my kids have been tested and we are waiting for the blood test results on 3 of them. My daughter is having other tests because of her DH rash.

If Celiac is still so misdiagnosed then I really don't think anyone can tell us what the real chances are that our children may inherit it from us, but I do think it's higher then the 20 or 30% that I've been reading. AGAIN THAT'S JUST MY OPINION.

Great discussion topic by the way. I like to read up on things like this!!

[par18]

It was recommended to me by my doctor (take it for what it's worth) to get my child tested every 5 years with no symptoms or at the onset of any symptoms. I have yet to have her tested because my pediatrician was resistant. She is now gluten free and doing much better. If you're worried about your children developing Celiac, you could always have them gene tested so you know which ones are likely to develop Celiac down the road. You could also go gluten free in the house which will essentially make all your children gluten-light. This may (or may not) delay onset.

I agree with this type of thinking. If you know the gene exhists somewhere in the family tree then you can either use the diet as a preventive measure or wait to see if someone else ever develops symptoms. At the onset of symptoms you could gene test the individual at that point and/or simply start the diet and see what happens. The diet does "not" effect the gene test.

Tom

[BFreeman]

His malabsorption test came back totally negative, so I guess that means he doesn't have celiac yet. .

How exactly do they test for malabsorption and how do the results look? I'm pretty sure we have a calcium malabsorption issue (because of too many cracked ribs) but what would you look for if it was another mineral, or a vitamin? (My question sounds a little off to my ears but I don't have a scientific mind.

BF

[annacsmom]

How exactly do they test for malabsorption and how do the results look?

We had my son tested through Enterolab and his numbers came below the range of what they consider to be a malabsorption problem. They test the fecal fat: the more fat in the stool, the higher the malabsorption. I believe that if you had a specific mineral malabsorption, like calcium, it might show up in a blood test as a very low level. I know that this is the case with ferritin (iron deficiency) and vitamin b12. My daughter was diagnosed this way (very low ferritin) as well as a flat glucose tolerance test, which suggested she did not absorb any of the glucose in the glucose challenge. Hope this helps.

[Jestgar]

BF, if you're worried about porous bone issues because of lack of calcium you might try to get a DEXA scan to check bone density.