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Austin Guy

Celiac And Family Members

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I'm a self-diagnosed Celiac as of 5 weeks ago (don't have insurance and tests are expensive). Changes in mental, emotional and physical health after going gluten free have been absolutely amazing already. I've been glutened a couple of times in the last month and have had a nasty reaction within 30 minutes.

I suspect my 2 daughters are gluten intolerant and that a number of nieces and a nephew are as well, but none of their parents appear to be intolerant. My grandmother is of Scottish descent and I now think my mom was intolerant.

Any experience with extended family being Celiac?

Sorry if this is a repeat thread. I'm fairly new in here and have not explored as much as I will.

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An uncle of mine has celiac, as does a second cousin. I strongly suspect several more relatives do, too. One of my aunts also believes she is celiac. I am absolutely positive my Mom has it, too, but as her bloodwork came back negative she is not interested in further testing. :( She has about 872 symptoms and it is so obvious to me - I am certain her test was a false negative.

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I'm a self-diagnosed Celiac as of 5 weeks ago (don't have insurance and tests are expensive). Changes in mental, emotional and physical health after going gluten free have been absolutely amazing already. I've been glutened a couple of times in the last month and have had a nasty reaction within 30 minutes.

I suspect my 2 daughters are gluten intolerant and that a number of nieces and a nephew are as well, but none of their parents appear to be intolerant. My grandmother is of Scottish descent and I now think my mom was intolerant.

Any experience with extended family being Celiac?

Sorry if this is a repeat thread. I'm fairly new in here and have not explored as much as I will.

I am of Dutch descent. My mother was diagnosed with celiac disease, and I'm pretty sure my maternal grandfather had it, but was never diagnosed.

So far, none of my first degree relatives have been diagnosed with it. I can see "it" in my older brother and a great niece, but have brought it up enough times that I won't mention it again. I don't have any children.

I believe I lost a maternal first cousin and an aunt to undiagnosed celiac disease, but that is speculative.

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In my family, my maternal grandmother's father and all four of his brothers died of intestinal cancer. My maternal grandmother had many symptoms of celiac, but I didn't know anything about it back when she was alive. I do know that I, my mother, one of her brothers, one of her sisters, my son, my daughter, one niece, and one nephew have it. That's pretty extensive!

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Any experience with extended family being Celiac?

My father, brother, and daughter all have it, along with myself. My son's symptoms go away, even though he tested negative. Of the 2nd-3rd cousins we keep in touch with, half of them have stomach problems nearly every day. Another few have had all sorts of physical problems, like tumors and heart issues and such, that their doctors are confused over, telling them that 'you usually only see X in someone years older than you are.'

Whether or not it's celiacs, there definitely seems to be a familial trend toward susceptibility to physical difficulties. :(

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My great grandmother lived a long full life, but she had a lot of stomach problems and had some sort of stomach cancer when she died. After decades of doctors telling her different things with nothing working, she told my mother (who also has stomach issues), "Just eat whatever you want because nothing works."

They never told her to stop eating bread. :( We're pretty sure she had Celiac.

My family through her line all have the same array of Celiac symptoms. I have Celiac. My mother is self-diagnosed. Even if my grandfather did get tested, he's not the type of person who will change his diet. My sister has a disability on the autism spectrum and tested negative for Celiac; I swear she's gluten/casein intolerant (she's told me she thinks she's gluten intolerant, as well), but at this time she doesn't want to do anything about it.

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My grandmother tested positive for celiac, and 4 of her 5 living children (my mother among them). I believe the remaining aunt has it as well, but refuses to admit it. Some of my cousins have chosen gluten-free without testing, as have I. I know what my symptoms mean, so why bother? I also believe my sister and adult children have it, but they don't want to believe it, either. Hopefully they come to their senses before they become extremely ill.

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I was extremely ill and in crippling pain for several years and my family wondered if I was dying, so they know full well what celiac did to me, yet they fail to see they are also in danger. I had genetic testing done for my own confirmation and so I could get my huge family to see that it is likely their many autoimmune diseases (cronh's, MS, diabetes, thyroid, cancer, asthma, psoriasis, rheumatoid arthritis, anemia, etc.) and various gastrointestinal and extra-intestinal symptoms (depression, anxiety, miscarriages, etc) are all related to gluten intolerance. I am certain now that my father died from complications of celiac disease. Of my large extended family (I was unable to have children of my own--multiple miscarriages) I thought my Mom, siblings and cousins and all their descendants would like to know this information. Because I got the gene from both parents, I informed both sides of my family.

Except for my Mom, not one has taken this seriously. One (of over 35 people I sent it to) called to say thanks and that maybe her lifelong anemia and her son's colitis was relevant? I said very well could be--please have yourself --and him- tested! Recently, I learned my cousin's grandson was DXed with celiac and another's child is not growing and the doctor thinks maybe she should be tested as well...slowly, the lights are going on.

I do not know if any of them will adopt the diet unless they are pushed to the wall--meaning, get as sick and out of it as I was. I know not everyone with the gene develops celiac disease, but all those autoimmune diseases?...can't be just a coincidence.

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my father tested negative, as did his mother, but both have clear symptoms.

my mother has not yet made an MD appt. No offspring.

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I consider myself Celiac. I have had symptoms since I was 8 and I went gluten free at the age of 44. I'm 47 now and most of my symptoms have improved. I wish the rest of my family would get tested because I see a lot of celiac symptoms in them especially the diareah.

My mother has had direah most of her life, She had bleeding problems until she had a hysterectomy at the age of 30. She had to have her thyroid removed at that time to. She had to have all her teeth pulled and dentures put in by the age of 29 and so on. She lost a sister to esophageal cancer last year, 4 brothers to colon and stomach cancer, her father to intestinal cancer and 3 of his sisters to different types of cancer. Plus numerous cousins with cancer, diabetes and thyroid problems.

On my father's side.

My father died from colon cancer as well as 3 of his brothers, his mother died from ovarian cancer and her sister died of lung cancer. Their mother, my great grandmother died of lung cancer. Several cousins with diabetes and thyroid problems. I had a cousin who I can remember from when we were kids always having stomach problems, he would get sick anytime he tried to drink beer. He died at the age of 31 from a rare brain stem cancer. I have 4 cousins with Lupus, 3 with thyroid problems. I have a 30 year old cousin with liver cancer 2 cousins who are brothers, 1 has kidney cancer and his brother has pancreatic cancer. 2 cousins with brest cancer. Then there are several cousins on both sides of the family with cleft palattes. They are studying a link between cleft pallets and Celiac.

Family gathering were always interesting because after supper it was a race to see who got to the bathroom first. I can remember my grandmother getting short with me when I was a kid and complaining of my stomach hurting. She told me to get used to it because it ran in the family.

I have managed to talk 2 cousins into going gluten free. One is 55 years old and she has had lupus and seizures since she was 10. She's been gluten free a year now and her lupus for the first time has gone into remission and she hasn't had a seizure in about 3 months. This is a lady who has had at least 1 to 3 seizures every day since the age of 10. When I told her that if she wanted testing she had to go back on gluten she told me where I could stick it, lol. She just knows for sure that if she eats it she'll have a seizure. Then I have another cousin who just started a month ago but so far hasn't seen any results. Keeping my fingers crossed on that one.

Anyway, this is why I stay gluten free because I have been so worried about following in the family footsteps.

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