Gene Question

[Yenni]

I am not totally clear on how the gene testing works. If you have any of the Celiac or Gluten Intolerance genes do you actually have to have the disease or will you eventually..or how does it work?

I am just reading Dangerous Grains and it almost seem to state that yes, you are/will and no, you might not.

Seems the doctor behind EnteroLab (Dr Fine) seem to think you most likely will get it if you don't already have it.

What is your impression of this?

[happygirl]

I can only speak of the Celiac genes, not the "gluten intolerant" genes.

About 30-40% of the American population has one of the Celiac genes, HLA DQ2 and HLA DQ8 (these genes cover about 98% of Celiac cases).

About 1 in 133 Americans (the latest statistic, from Dr. Alessio Fasano from the Celiac Center at the Univ of Maryland-Baltimore) have Celiac.

So no, just having the gene does not mean you will have Celiac (30-40% versus 1%).

That being said, I can't state anything about non-Celiac gluten intolerance.

[Yenni]

Okay, thanks!

[happygirl]

Jenny,

No problem. I'm fascinated by the gene interplay with all of this. Dr Green talks a lot about the "basics" of celiac disease, including genes, in his book (in my signature). Its a good reference for a ton of stuff. I wish it had been out when I was diagnosed, as it would have cleared up SO many things for me and my learning curve would've been lessened considerably

Laura

[Yenni]

Jenny,

No problem. I'm fascinated by the gene interplay with all of this. Dr Green talks a lot about the "basics" of celiac disease, including genes, in his book (in my signature). Its a good reference for a ton of stuff. I wish it had been out when I was diagnosed, as it would have cleared up SO many things for me and my learning curve would've been lessened considerably

Laura

Yes, I did a search on the book and saved it. Looks good.

Some times I wish I had a proper diagnosis of this though. What isf EnteroLab is wrong...and I never had any anemic problem or weight loss. I dunno, sometimes I feel I don't count when I read about Celiac disease. If you know what I mean.

It is very interesting with the genes. I have seen/read about people with Celiac saying they test their kids with the gene tests to see if they have it and it sounds like if they have the genes for it people expect them to have it too. Made me confused.

[happygirl]

Jenny,

I think the reason that people get their kids gene tested (when they themselves have Celiac and one or both genes) is because they want to know if their kids *could* ever have Celiac. I have the DQ8 gene, and when I have kids one day, I will have them all gene tested. This way, I won't have to keep worrying and testing, re-testing, re-testing (just because you test your kids at age 5, for example, doesn't mean that they won't develop it at age 6, or 7, or 8, or 15, or 20, 50, 90). This way, parents know if their kids have a risk of it versus little risk (considering that the vast majority of Celiacs have DQ2 or 8). It will save on worry and testing for those who never had the gene. For those that have the gene, it would be good to know to be vigilant about periodic testing, ESPECIALLY if there are symptoms.

The same rationale would apply to any first degree relatives (all first degree relatives are recommended to be screened). My sister has been gene tested, and both my parents are going to be gene tested at some point. Dad has tested negative for celiac disease via bloodwork.

I don't think its the case that people "assume" or look for their kids to have celiac disease, but once you become educated about Celiac, its hard not to be proactive and aware....put the education to work. I would much rather know that my kid doesn't have the gene than worry about getting blood tested every year or few years, "wondering" if he has celiac disease "now."

Hope that helps explain some people's rationale....at least what mine is.

Laura

[tarnalberry]

Some genes are triggered at the start, some aren't. The ones that code your eye color kick in after a couple months on their own, the ones that code for celiac need an environmental trigger. Just having them does not mean that you absolutely will get celiac - you need that trigger to cause them to be expressed - but it means you have the potential to develop it.

[Yenni]

Jenny,

I think the reason that people get their kids gene tested (when they themselves have Celiac and one or both genes) is because they want to know if their kids *could* ever have Celiac. I have the DQ8 gene, and when I have kids one day, I will have them all gene tested. This way, I won't have to keep worrying and testing, re-testing, re-testing (just because you test your kids at age 5, for example, doesn't mean that they won't develop it at age 6, or 7, or 8, or 15, or 20, 50, 90). This way, parents know if their kids have a risk of it versus little risk (considering that the vast majority of Celiacs have DQ2 or 8). It will save on worry and testing for those who never had the gene. For those that have the gene, it would be good to know to be vigilant about periodic testing, ESPECIALLY if there are symptoms.

The same rationale would apply to any first degree relatives (all first degree relatives are recommended to be screened). My sister has been gene tested, and both my parents are going to be gene tested at some point. Dad has tested negative for celiac disease via bloodwork.

I don't think its the case that people "assume" or look for their kids to have celiac disease, but once you become educated about Celiac, its hard not to be proactive and aware....put the education to work. I would much rather know that my kid doesn't have the gene than worry about getting blood tested every year or few years, "wondering" if he has celiac disease "now."

Hope that helps explain some people's rationale....at least what mine is.

Laura

Yes, I can see that and I am sure I would do the same if I ever have children. And maybe they will find more genes that are connected to Celiac and gluten intolerance.

I have told my parents and my aunt about this. Dad got mad that I even mentioned it (he is weird), mom is suspecting she might have some troubles but feels they are too small for her to wanna change, my half brother has ADD possebly and has some milder symptoms but doesn't even wanna hear about it being celiac. My aunt had had lots and lots of problems with constipation and some heart burn. She also totally didn't want to have anything to do with Celiac. Her mother, my grandma I am pretty convinced had Celiac. She had lots of trouble with her GI and depression and anxiety. She has surgery I don't know how many times in her stomach, had Stomi for a while, diverticulities, ulcers..She was in and out of hospitals my whole life. Her stomach was constantly BIG.. I dunno. My family do not wanna hear about this at all. Fear maybe, probably ignorance. They live in Sweden, I am from there, and I live in the US. My symptoms has been much worse than theirs. I dunno. I feel I am just telling them to help, but if they do not wanna listen..

Anyways.. Long story.

[Yenni]

Some genes are triggered at the start, some aren't. The ones that code your eye color kick in after a couple months on their own, the ones that code for celiac need an environmental trigger. Just having them does not mean that you absolutely will get celiac - you need that trigger to cause them to be expressed - but it means you have the potential to develop it.

Makes sense. I think I read something about that too.

Something interesting I read too in an article was that Gluten Intolerance and Celiac can express different symptoms in different ages. Some new reserch made in Sweden. I guess they are finally opening their eyes some over there.

They did a test with 7000 children and found out that a scary big amount were gluten intolerant.

[Kamper]

Some genes are triggered at the start, some aren't. The ones that code your eye color kick in after a couple months on their own, the ones that code for celiac need an environmental trigger. Just having them does not mean that you absolutely will get celiac - you need that trigger to cause them to be expressed - but it means you have the potential to develop it.

Does anyone know what kind of things might trigger the gene?

[justanotherday]

I have both DQ2 and DQ8, so both of my sons have one or the other gene for sure, and I don't need to have them genetically tested. They both could develop the disease at some point. I actually think my 18 year old has it already, but he's stubborn and doesn't want to be tested yet because he doesn't think he's ready to be committed to the gluten-free diet. I keep telling him that the diet is absolutely necessary if he has celiac disease, but at 18 kids think they know more than we do... When he started getting molars at two years old, they came in without enamel. He was colicky when he was a baby. He's had stomach issues his whole life. He's tall, but he can't gain weight even if he tries really hard. Wish me luck in convincing him to be tested!