Posted 07 April 2004 - 09:13 PM
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.
Posted 08 April 2004 - 08:32 AM
I have Celiac as well as one of my 2 children, my mother also shows symptoms as well as my grandmother.
Posted 08 April 2004 - 09:03 AM
Posted 08 April 2004 - 09:19 AM
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.
gluten-free since November 1, 2003
Posted 08 April 2004 - 10:54 PM
Posted 10 April 2004 - 02:39 PM
Posted 10 April 2004 - 04:45 PM
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 Parkinsonís
My Father also has GI issue-refuses to get tested.
Posted 19 April 2004 - 12:06 PM
Posted 20 April 2004 - 07:00 PM
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.
Posted 21 April 2004 - 08:36 PM
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.
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Posted 22 April 2004 - 07:22 AM
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.
Posted 22 April 2004 - 10:36 AM
I have also experienced refusals to get tested by family members that show obvious symptoms. I have been tested twice now by the University of Chicago Celiac Research program. They do free testing once a year in October. My daughter so far is the only one in our immediate family with it. Her Paternal Grandfather has Diabetes, degenerative arthritis, ulcers... a paternal cousin is has Down's syndrome and is very thin and has constant constipation...the list goes on. There's an old story that talks about a hound dog laying on a nail. Every few minutes he howls. His owner's neighbor asked the owner, "what's wrong with your dog" Owner: "he's laying on a nail", neighbor: "why doesn't he move?" Owner: "guess it doesn't hurt that bad."
My daughter has been diagnosed since Aug '02 and since then I've been able to help a handful of people pursue the diagnosis by handing out information about it but I run into A LOT of people that just arn't alarmed enough to take action. More than anything though, the resistance is coming from these people's doctors. And It's hard to convince them that their doctors might not have the information they need. One friend has a daughter with all the same symptoms my daughter had: losing weight, foul smelling, watery stools, enlarged belly etc... I gave her some info from the University of Chicago to bring to her doctor. She went in and asked if he'd test for Celiac Disease. He said that it does concern him that her daughter is losing weight (15 months old) but he'd rather test for some other things first, like lactose intolerance...
Anyone out there have any advice on how to side step a doctor's ego when a patient brings their diagnosis to him?
It's an aweful lot to swallow when someone suggests that your doctor may be wrong or uninformed. We place so much trust in them that I almost feel I have to go to medical school in order to get people to listen.
I'm trying not to resign myself to just focusing on my own immediate family, I know I still need to be a voice for Celiacs, raising awareness. I guess those that have ears to hear, will.
Posted 23 April 2004 - 10:15 AM
With the far reaching problems this disease can cause it amazes me that they don't want to test.
Posted 24 April 2004 - 01:25 PM
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.
Posted 20 May 2004 - 04:32 PM
- Diagnosed celiac 2002
- Husband is gluten sensitive
- Daughters are gluten-free and one daughter has severe food allergies
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