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Genetic Question...

Lizzylulu

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Lizzylulu Newbie
Lizzylulu
Posted

Over a year ago I was diganosed with Celiacs disease followed by my middle child being diganosed not to long after this. I have two other children, one is symptmatic and the other is gluten-free because she was a baby when I was diganosed and she has just always eaten what her sister & I eat. I recently discovered that because I am DQ2 DQ8 thta i will pass on one of these genes to all of my children. Futhermore I discover because my middle child who is DQ2 Homomzygous (she has two DQ2 genes) that it is more than possible she recieved one from myself and one from her father, Which puts all our children at greater risk.

Does anyone have anymore information on this?

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heidi g. Contributor
heidi g.
Posted

I know that people can have the genes for celiac but not have an active case of it. For example: the celiac gene has been passed down in my family for generations. But no one has an active case for like hundreds of years (unless they hid the symptoms and never told anybody) but when something traumatic happened to me it was "triggered" and now i am the only one in my family who has it. That is really all the knowledge i have on it. Hope it somewhat helps.

heidi g. Contributor
heidi g.
Posted

Also, celiac disease is hereditary so most likely all your children have the genes. It doesn't mean their all going to have it though.

Lisa Mentor
Lisa
Posted

Here is some information that you might find has value to your situation:

Open Original Shared Link

cyberprof Enthusiast
cyberprof
Posted

Over a year ago I was diganosed with Celiacs disease followed by my middle child being diganosed not to long after this. I have two other children, one is symptmatic and the other is gluten-free because she was a baby when I was diganosed and she has just always eaten what her sister & I eat. I recently discovered that because I am DQ2 DQ8 thta i will pass on one of these genes to all of my children. Futhermore I discover because my middle child who is DQ2 Homomzygous (she has two DQ2 genes) that it is more than possible she recieved one from myself and one from her father, Which puts all our children at greater risk.

Does anyone have anymore information on this?

OK, as you noted, each person has two chances to have a celiac gene.

This is what we know:

You - DQ2/DQ8

Middle Daughter - DQ2/DQ2

cassP Contributor
cassP
Posted

all great info above!

from my understanding, and what ive learned on here-> DQ2s and DQ8s are the stereotypical Celiac genes (predisposing u, tho u dont have to get it)... but that ALL the DQ genes also make it possible to trigger Celiac. people overseas have been dx with Celiac withOUT having either the 2 or the 8. and that having 2 of the same DQ genes tends to make u more vulnerable to triggering Celiac

researchmomma Contributor
researchmomma
Posted

all great info above!

from my understanding, and what ive learned on here-> DQ2s and DQ8s are the stereotypical Celiac genes (predisposing u, tho u dont have to get it)... but that ALL the DQ genes also make it possible to trigger Celiac. people overseas have been dx with Celiac withOUT having either the 2 or the 8. and that having 2 of the same DQ genes tends to make u more vulnerable to triggering Celiac

People in the US also have been diagnosed without genes. In a study at UC Irvine they have 800 biopsy confirmed Celiacs and 5% do not have the genes. I emailed back and forth with the sub-investigator on the study and she confirmed this.

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cyberprof Enthusiast
cyberprof
Posted

People in the US also have been diagnosed without genes. In a study at UC Irvine they have 800 biopsy confirmed Celiacs and 5% do not have the genes. I emailed back and forth with the sub-investigator on the study and she confirmed this.

Yes, our own Ravenwoodglass is one of those.

It's a moot point for the OP, Lizzy, because she, her kids' dad and her kids all have at least one celiac gene, predisposing them to celiac (but not making celiac a certainty).

cassP Contributor
cassP
Posted

researchmomma- very interesting!! i hope the rest of the medical community catches up with that study

and i THINK Ravenwoodglass is overseas, no???

cyberprof Enthusiast
cyberprof
Posted

researchmomma- very interesting!! i hope the rest of the medical community catches up with that study

and i THINK Ravenwoodglass is overseas, no???

No, I'm pretty sure Raven lives in the US.

Avalon451 Apprentice
Avalon451
Posted

After reading this I got to wondering about our family. As many of you know, DD16 was definitely positive, by blood, plus skin and endo biopsies. The younger two had positive blood tests (we didn't have them biopsied). I had only one faint "possible positive" on the blood test, but lots of symptoms, so the GI did an endo which has just come back negative.

So I'm wondering if both hubby and I have the genes, one or both of them-- or did DD16 just get the full matched set and therefore triggered? And I wonder if my younger two also have the full set? Are they more liable to get the whole range of complications down the line?

So I emailed my PCP and asked if hubby and I could get the gene test. He replied (kind of abruptly, for him, usually he's very accommodating) that he is not even able to order that test, but the GI doc might. and that he doesn't see that it would be of any use except to satisfy curiosity. Ouch. I just want to know if my younger two kids are more or less likely to be very affected with complications. I was going to ask their pediatrician to order the gene test after hubby and I had ours.

I think I will take it up with the pediatric GI doc at Children's Hospital. He'll understand our concerns better, I think.

Roda Rising Star
Roda
Posted

People in the US also have been diagnosed without genes. In a study at UC Irvine they have 800 biopsy confirmed Celiacs and 5% do not have the genes. I emailed back and forth with the sub-investigator on the study and she confirmed this.

I'm diagnosed with blood work and biopsy only. I've never had the genetic test so I have no idea what genes I have. I am curious though. If I was to get it done I want to know if I can get the test without going through my doctor? I don't need them second guessing my diagnosis, if I happen to not have the DQ2 or DQ8. I've been thinking about it for my youngest son. If he has either of those genes then I could cinch his diagnosis for sure.

Skylark Collaborator
Skylark
Posted

So I'm wondering if both hubby and I have the genes, one or both of them-- or did DD16 just get the full matched set and therefore triggered? And I wonder if my younger two also have the full set? Are they more liable to get the whole range of complications down the line?

The incidence of celiac disease is rising in first-world countries, but not in poorer countries with similar genetics. Type 1 diabetes is rising too. The incidence of celiac genes has not changed in the general population, so there is something about our lifestyle that is triggering the autoimmunity.

You are too worried about specific alleles that may confer some risk for celiac but are very, very clearly not the whole story. Celiac runs in families; chances are both you and DH have some genes that permit triggering of celiac disease under the wrong circumstances. Your kids do too, and because of whatever is going on with our lifestyle, the disease triggered in them much earlier than it did in you. Women seem more susceptible so your DH may have the genes but never show issues with gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

researchmomma- very interesting!! i hope the rest of the medical community catches up with that study

and i THINK Ravenwoodglass is overseas, no???

Nope US born and raised. Interestingly my genes are usually genes that are found in the Middle East or Asian population and considered celiac associated genes there...but my parents were German, Dutch (Dad) and Welsh, Irish and English (Mom).

There is still an awful lot to be learned about celiac associated genetics.

cassP Contributor
cassP
Posted

Nope US born and raised. Interestingly my genes are usually genes that are found in the Middle East or Asian population and considered celiac associated genes there...but my parents were German, Dutch (Dad) and Welsh, Irish and English (Mom).

There is still an awful lot to be learned about celiac associated genetics.

is it Mushroom then???? im so out of the loop.... i remember 1 of you regulars was in australia or NZ and i was so surprised... hhhmmm???

  • 4 weeks later...
Lizzylulu Newbie
Lizzylulu
Posted
  • Author

Thank you everyone! We have decided to have gentic testing done on my Husband, that way we know what we could be dealing with. My daughter that is symtamatic has an appt next week at the childrens hospital GI. I hoping to have fatser results then the Ped GI who diagnosed my younger child. As far as the baby goes (she's gonna be 2 in july) we will wait to see what my husbands gentic results are. Thank you again for all the advice :-)

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