Possiblity A Child May Have celiac disease Or Dh

[bhaas]

I have been trying to find info on this with no luck. I have DH and tested my daughter and she does not have the genetics. How ever I recently had my 5 month son tested and he has the genetics for celiac disease/DH and I was wondering if any one knows the likely hood that he may have celiac disease/DH?

Thanks

[rosetapper23]

This is a difficult question. To have celiac, you must have the genes AND a triggering event. I can only say that if your child has a triggering event, he MAY end up with celiac. However, at his very young age, he probably does not have celiac now. What are the chances? Sorry, that's unknown.

[T.H.]

Don't know if this is what you're looking for, but my understanding is this:

1/3 of the population have the genes for celiac disease, so JUST the genes isn't a huge indicator.

1 in 133 people test positive for it, so that would mean 1 in 133 have the genes 'triggered' in some way (which we don't fully understand yet).

If there is a celiac in the family that is distantly related, like an aunt or cousin, then 1 in 56 of people in that group have the disease triggered.

If there is a celiac in the family that is 1 degree away (parent, another sibling), then 1 in 22 people in that group have the disease triggered.

One big question would be if there are any health problems that made you consider the disease? If that's the case, that plus a positive gene test might be worth checking into further. If it's a positive blood test or endoscopy plus the genes, also worth checking into this. But just the genes, with no celiac disease in the family or symptoms, is probably just worth...awareness, I suppose?

[bhaas]

T.H. my son does not have any problems but he is also not eating he is only nursing. Be had a positive for the genetic test. I do have DH/celiac disease and there are other people in my family who have symptoms but do not want to get test due to them seeing what I go through.

[AzizaRivers]

1. Just for the record, you do not necessary HAVE to have "the genes" to have celiac. Many of us on here are living proof of that. We may have the intestinal biopsy to prove our diagnosis, but not test positive for the few genes that doctors are sure are linked with celiac. In fact, in different parts of the world, different genes are recognized! We have not gotten that down to an exact science yet, and maybe we never will. Also, as stated by someone already, 1/3 people have the most common genes associated with celiac, but that doesn't mean all of them have celiac. But because you have it, that increases the chance that your children will.

2. I cannot believe there are people in your family who don't want to get tested because they are scared of the gluten free diet. They would rather live in ignorance, I suppose, as their bodies continue to attack their tissues and somewhere along the line they are high-risk for many types of cancers? Of course that's assuming they would have it, but still...it's highly irresponsible to not want to know just because you don't want to have to do the treatment. Celiac is serious.

[bhaas]

My father has been in the hospital many times and they do know know what is wrong and they give him medication after medication and still have no answers.

[pricklypear1971]

Your child's risk is dependent upon many things. A half, single, or double copy of the gene...,other health issues, parental Celiac/gluten status....

The best you can do is test him periodically using the Celiac antibody panel, and pay attention to his health - is he thriving, having digestive issues, etc.

I know you want an answer, but all you can do is be

vigilant. Your son is lucky that his parents are aware of the risk, and are watching.

[bhaas]

So if I seem overwhelmed. My wife is scared or where to send our children to school and how their friends are and im scared of how celiac disease or dh may impact their lives as children and how their friends may react. Its hard enough being an adult and understanding, I cant even imagine what being a child would be like.

[pricklypear1971]

Well, all of that is perfectly normal. All you can do is teach your children what they can/can't eat.

I've noticed kids with celiac disease seem to stay compliant because they recognize certain things make them sick - as they grow up they'll test boundaries but that's normal.

The best you can go is stay on top of testing so you can present a strong case to schools, etc. For gluten free accommodations.

I know it feels overwhelming; however you are fortunate to have identified a possible cause for possible symptoms now instead of searching later if they begin to have problems.