19 replies to this topic

[LisaRN]

Hello there

I was just wondering how many people's family members (especially their children) also have celiac as well as themselves? I know its genetic, but I am the only person in my entire family on both sides that has celiac. I am just wondering what my unborn childrens chances of also having celiac.
Thanks

[GFdoc]

Hi lisa- I am positive for celiac disease, but my parents, 3 brothers, 3 kids and some 1 st cousins have all tested negative. I heard somewhere that the risk is about 1 in 10 for a first degree relative to have it (parent, siblings, kids).

[seeking_wholeness]

Lisa,

I am gluten intolerant, as are my two children. My father also shows symptoms, but he won't even consider getting tested because he would have to give up all of his favorite foods. I think my mother should be tested as well, although she does not show classic celiac disease symptoms; it's just a gut feeling I have that she may have it, too.

I also think that my husband is gluten intolerant (and at least his mother, if not both parents, and his deceased maternal grandmother), so that would make it less surprising that both of my children inherited the gene.

[SteveW]

Not sure if I'm allowed in here
But
My family is loaded!
Me-Celiac & Crohns
Mother tests high on blood work for Celiac Sprue-
My Sister has mirror symptoms as me without weight loss-she refuses to get tested so I've given up trying. She'll end up going when shes very ill like me and regretting it.

Fathers side has a history of digestive disorders and I believe his sister has Crohns.

My Uncle(Mothers side) had MS-he passed a few years ago.
My Aunt (Mothers side) Has Parkinson’s

My Father also has GI issue-refuses to get tested.

[joemoe003]

Yeah i dont ne one in my family has celiacs but my mom said that she gets a lil sick after eating pasta so she just doesnt eat it but she isnt gonna go get tested. i dont understand it why im the only one out of my grandparents and cousins and parents and bro. There isnt even a lil sign of it in ne of them. what is the chance that my kids are gonna get it ? (i dont plan on having kids for a while since im only 15)

Joe Moe

[hapi2bgf]

I have celiacs. Biopsy positive. Blood test barely elevated and did not suggest the level of damage the biopsy revealed.
My daughter had an elevated blood test using an older method. The newer blood test method by the Pediatric GI showed her as negative for Celiacs.
My mother has all of the signs, but will not be tested.
My brother has many of the signs, but says he will get tested when he gets insurance. That will be years from now.
My father and bother brother see no reason to be tested since they are healthy.
One cousin (maternal side) has celiacs. I have no idea if any other cousins have been tested.
Paternal side of the family has the autoimmune diseases and other diseases that they say are linked to Celiacs. No one is interested in being tested.

I'm curious why people refuse to get tested for a disease that can cause so many problems when undiagnosed. It's just a blood test! Possibly followed by a biopsy which is not such a big deal. Even when we discuss the numbers and percentages of people affected by celiacs, noone wants to be tested unless it is their last hope.

Best of luck convincing your loved ones.

[gf4life]

My daughter and I have the celiac disease gene (DQ2), and myself and all three of my kids are gluten intolerant. My sons have one gene in common with me and one other one that causes gluten intolerance. I think my husband should be tested, but he refuses. His reasoning is that he doesn't want to give up his favorite foods and he's not as sick as I was. He does have symptoms, as does some members of his family, but they don't really understand about the disease and would only (possibly) take it serious if he tested positive.

As for my family, I am one of 7 kids. My older sister has many symptoms but tested negative on the blood tests. She also has a 14 year old who has seriously stunted grouth and other problems. He also tested negative. She is not pursuing further testing as going gluten-free would not "fit" into her lifestyle right now. I keep at her about it though. My younger siblings are scattered around the US and I have mentioned it to some of them. On brother has a lot of symptoms, but won't get tested. I made sure he knew about it in case his new baby gets sick he can tell the doctor there is a family history and get the baby tested. The others either don't think it is an issue or I have no way of contacting them and they haven't been told yet. It is very frustrating.

My father won't go to the doctor unless he is half dead. So getting him tested doesn't seem possible at this time. He says there is no one on his side that seems to be having the symptoms I had. I honestly believe I got the disease from my mom. She was sick all her life and died at age 44. Not from cancer or anything like that, but from complications following a non-cancerous tumor being removed from her spinal cord. She had a lot of health problems and almost all of them are listed as being related to celiac disease. Her sisters also have similar health problems. I'm not close to my grandmother, so I don't know if she has any health problems and my grandfather died a few years ago. No GI symptoms that I know about, only heart disease for my grandfather.

I just wish that family members would take it more seriously. It is not a disease that should go undiagnosed for too long. I just hope they find out before anything serious happens to any of them.

God bless,
Mariann

[keburns]

I have a gluten intolerance (diagnosed by a blood test, intestinal biopsy was negative). My husband has obvious symptoms of a gluten intolerance and has tested negative for all mainstream blood tests and intestinal biopsy. In desperation, I asked our doctor to test him for IGA deficiency, IGA transglutiminase, and HLA DQ2 & DQ8 (genetic markers for celiac). He tested positive for the HLA DQ2 marker only. I then called Miles-Kimball Laboratory and spoke to a geneticist regarding the genetic markers because our doctor thinks it's just something to look out for. According to the geneticist, if a person has obvious symptoms of gluten intolerance AND tests positive for either of the markers, Miles-Kimball considers that person to have a gluten intolerance. Celiac (intestinal damage) is the end result of an undiagnosed gluten intolerance.

They also sell their kits (just swab your cheeks for cells) to the public. It's $292.00 for the kit and diagnoses (the diagnoses is what really costs, the kits are free), and for each subsequent kit ordered for family testing, the cost is reduced to $260.00.

Hope this helps.

[txceliacmom]

My sister-in-law was diagnosed in the 70's, my daughter didn't get a formal dx but it's obvious that she has it based on improvement on a gluten-free diet and the reaction she has to gluten. My husband has soooo many signs but wants to eat his donuts so I am having a difficult time getting him to test. His mother just broke her ankle this past weekend, has ostoperiosis, R. Arthritis, brusies if you press on her skin and had a blood transfusion due to anemia while in the hospital this past weekend but is in complete denial. My niece had a kidney stone (calcium) at the age of 15 which is very rare but has not been tested.

With the far reaching problems this disease can cause it amazes me that they don't want to test.

[wildones]

My son was first to get celiac disease diagnosis
I was diagnosed w/ celiac disease next
My other son was diagnosed w/ gluten intolerance per blood tests
my husband has been diagnosed with gluten intolerance a few days ago, but hasn't had a biopsy yet.
my daughter is now going totally gluten free also because she has to have at least the genetic propensity for it at least, she has had severe reflux her whole life (7 yrs) but no other obvious symptoms.

My husband's side of the family has many members with familial polyposis (colon cancer gene) that has been linked to the celiac disease gene. One SIL is the only one so far to have been diagnosed. My husband's sisters and parents don't think they need to be tested.
My mom and my maternal and paternal granparents have had MANY of the symptoms, but were never diagnosed.
My aunts also have had varying degrees of symptoms.

My mom has finally conceeded that she should at least get a blood test done after many years of problems. She is really doing it shut me up though . I really hope she gets the right tests (she has Kaiser insurance) and that they are interpreted correctly.

[Alison]

I was diagnosed with celiac disease. My parents have since been gene tested and each possesses a gene that predisposes someone to gluten intolerance (mom has DQ2 and dad has DQ8). They are both gluten-free and feel much better for it -- they are clearly gluten sensitive. I got gene tested also and ended up with both DQ2 and DQ8. According to the geneticist, a person with 2 genes is more likely to develop celiac disease. Also, my child (I am pregnant) has a 100% chance of inheriting one of the genes.