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How Many Family Members With Celiac?


chrissy

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chrissy Collaborator

how many family members in your family have celiac. my identical twin 14 year old girls have it, and my 10 year old daughter also. as far as we know, no one on either side of dh's or my family have it.

christine


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MySuicidalTurtle Enthusiast

My Mother and Brother both have Celiac Disease, too.

lovegrov Collaborator

My father and an aunt on my mother's side. All other first-degree relatives tested and none have it.

richard

Rusla Enthusiast

The only other person brave enough to have the blood test in my family is my sister and that test is negative. The brothers are too chicken.

2Boys4Me Enthusiast

My youngest son has Celiac. My husband, older son and I have been tested. My Mom was tested. We four are negative. No one else has been tested. I imagine it's because they have no symptoms, and I haven't really reminded them (with the exception of my sister) that Ty didn't have any symptoms either. In fact, other than my Mom & sister, none of our extended family have even asked if it is genetic or hereditary or what.

DonnaD Apprentice

In My family:

Daughter: DX Coeliac

Me: Gluten sensitive - Enterolabs Dx

Father of DX daughter: Alopecia, GI symptoms. blood tests (Ema only I think) Neg (falsly I think)

Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

Sister 2: Younger but same symptom at same age as me and Sis 1. gluten-free for 3 weeks feeling better.

Mother: Thin as a rake, rheumatoid A. Milk intolerant. oestoporosis. won't test.

Father: Motor neuron D. died. had lots of fractures and gastric issues.

Also various aunts and cousins on both sides of my family either really skinny or really overweight with GI problems. We are English/some Irish & french way back.

Carriefaith Enthusiast

My grandmother has celiac disease and I suspect that my aunt also has celiac disease. I think my mom may be gluten intolerant since she has tested negative for celiac disease.


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Canadian Karen Community Regular

I am the only one "officially" diagnosed, but I swear my sister has it also.

I actually finally talked her into going for the bloodtest, and it came back negative. I can't believe the GI didn't want to pursue it further though. She has everything the same as I do except she has the big C instead of the big D.

I believe it is on my mom's side extensively. Both her sisters died of gastro problems and were basically skeletons when they died (also had severe osteoporosis). My grandmother has always had gastro issues.

I have had the girls checked but not the boys yet. Both girls tested negative for celiac but I swear Rhiannon has it.

Karen

luvs2eat Collaborator

I have it and my middle daughter of 3 has it. I'm fairly certain my sister and possibly my brother have it but neither will be tested!!

ianm Apprentice

My dad and brother have the same symptoms that I did but don't seem to interested in changing.

Guest Viola

I have it and our oldest daughter has it. I suspect my mom has it as well, but will likely never be tested.

i canary Rookie

I'm the only dx one. I have some cousins that are sick all the time like me, but they will not get tested. My mother said that her father could only eat milk and cornmeal - everything else made him sick. He died when I was a baby, all his photos make him look like a small walking skelton. All that to say I suspect that he had celiac disease.

Guest Rad

My three sisters have had problems all their lives with dermatitis. Tried to tell them that new research regarding this skin disorder relates it to gluten intolerance. They did want to hear this.

My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Had a great grandmother with osteoporsis. And an aunt that died of colon cancer.

Have a son that's been told he has Irritible Bowel. After reading this Board, recently sent him a letter highly recommending he get tested for C/D.

Dianna

kathy1 Contributor

My mother-in-law was DX a few years ago. My husb and son just DX recently. My husb's 3 siblings were tested with negative results.My brother-in-laws autistic son was tested negative also.

KaitiUSA Enthusiast

I am the only official one diagnosed but we think many people in the family have it. They just won't get tested but alot have the same symptoms I did!!!

Moongirl Community Regular

My mother and I both have it! Sister tested negative for it...

However I think a few of my aunts on my mothers side have it as well.....

Canadian Karen Community Regular
My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Dianna

Dianna,

That is tragic. If only celiac disease was more well known back then......

Hugs.

Karen

2Boys4Me Enthusiast
Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

What do you mean by "hyper floaters"? Do you mean something that looks like transluscent grey amoeba-like thingys that float around your eyes? And when you look quickly in another direction by moving only your eyes, they follow?

Sorry for the weird description, that's the only way I can describe it.

redheadheather Explorer

Let's see... My Grandmother had is as does my mother and my 6 yr old son. DH's Grandmother had it and I suspect his mother has it, but she keeps *forgetting* to be tested. DH will be tested next Tuesday and hopefully DS #2 will be tested after that (he's almost 5). I had a blood test which came out negative as did my sister and her children.

codetalker Contributor

As far as I know, I am the only one with celiac disease. That includes distant relatives as well.

Now that I think about it, maybe I was adopted.

  • 3 weeks later...
Chap Newbie

There seems to be a lot of emphasis on "ethnic groups", such as irish or European descent in regards to Celiac Disease. I'm a bit new at this (three week into my research, and awaiting test results). But from my readings so far, the newer research materials indicate that older studies may be flawed. What I'm getting is that newer research shows that Celiac Disease is an "equal opportunity" disease - no racism involved, so to speak. Personally, I think that a lot of poor people in the U.S. (poor Whites, Hispanics, African Americans, etc.) die without ever knowing that they have the disease, partly due to lack of access to good medical care, and partly due to lack of education in regards to health care. I live in California, and very few doctors take the state medical insurance (Medi-Cal) due to the low reinbursement fees. A surgeon friend of mine performed an operation on a Medi-Cal patient, and after all of his overhead, etc. was paid, he made 85 cents for performing the procedure. True story, even he got a laugh out of it. I've also had dealings with the "low income" clinics who take Medi-Cal (state insurance), and they want those patients in and out, so that they can see as many as possible in the shortest period of time in order to make a profit. Do you think those type of doctors are going to take the time to diagnose such complicated illnesses as Celiac Disease, Lupus, or some of the other rare diseases? Sadly, no. There are some illnesses such as Sickle Cell Anemia that are specific to certain ethic groups, but I don't think Celiac has a preference. Just my opinion so far, after limited research/reading about such immune system disorders as Celiacs and Lupus.

Chap

Firegirl43 Contributor

Far as I know, Just little ol me.

kevsmom Contributor

My brother and I both have it. My late father had an iliostomy for ulcerative colitis over 20 years ago. I wonder if he had been tested for celiac disease, the results would have been positive?

zakismom Newbie

I find it sad that none of my relatives- including my parents-WILL NOT get tested even though they all witnessed how sick I was and how healthy I am now. I'm sure aout half of them have it but, they keep their heads in the sand :(

Kristen2Denise Apprentice

My younger sister is gluten intolerant but wasn't diagnosed with celiac and my older sister was tested and is negative, my mom is negative as well. We don't know about my dad's family since we aren't in touch with any of them.

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      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
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