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Sillyyakdidi

How Many Of Your Children Have Celiac?

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I was just wondering how many of your children have celiac? And do any of you have sisters or brothers who have children with celiac even if they don't have it themselves? I'm sorry if this topic has already been covered, my sister just got engaged and will probably be having children soon, and I'm at the age where in a few years I will be as well. I was wondering if anyone with celiac has had non celiac kids? thanks for your help!!!


Gluten Free since April '04

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This is a hard question. Out of my immediate family parents, 3 brothers, three sisters and my 4 children, only four of them have tested for coeliac and their results came back negative.

So as it is, I am the only one diagnosed with coeliac, whereas there probably could be a couple of other family members who should be gluten free, as it is hereditary, but they just don't want to go there and get tested, namely my brothers and sister.

Three of my sons (all over 16) blood test results, (because I pushed them to get tested) came back negative, that sounds good, but further down the track they possibly could come back with different results. I have not gone into gene testing, but that would be more telling about the possibility of them developing the disease.

Just remember that if you do have children and they do have coeliac their condition is mostly managed by diet, so that is the positive side of it. Well for me it is all positive.

Cathy

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i have 9 children----6 girls, 3 boys. three of my girls have celiac---my 11yr. old, and my 15 yr old identical twin girls. my 17 year old son carries the celiac gene, but does not have celiac disease. the gi has told us that he will need to be tested every year, or sooner if he develops symptoms. we are waiting for gene test results on the rest of the family.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Well my daughter definitely has Celiac, but I suspect that two of my boys also have it. I have one child that I do not think has Celiac. If I am right then 3 out of my 4 children have it.

I suspect that my mom and dad may both have it and my brother had seizures when he was a kid and they never could figure out why so they just diagnosed him with epilepsy and called it good. He stopped his Dilanten years ago and has never had another seizure (which is possible even if you don't have celiac) but I suspect that he may have Celiac too!! He had only two seizures was put on dilantin and never had another, and I've NEVER heard of an epileptic who only had two seizures in their entire life (even when they are medicated). That doesn't mean I'm saying it's not possible I'm just saying I'm skeptical. A lot of things in my family history now all seem to make a whole lot more sense and it's almost like we've found the missing link in the puzzle.

My dad was adopted so we have no idea what's in his medical history, but we do know that my grandfather had numerous intestinal and stomach issues but was never diagnosed with Celiac.

I'm still begging my parents and my brother to get tested, but I'm not sure any of them want to "KNOW" they have it because then they would have to stop eating some of the foods they love, and NO ONE wants to hear that news!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I have three children. My middle child - and only girl - is the Celiac. Though.... my baby is gluten free as well. He's had no testing, but we will do gene testing once he's older.

My oldest child has been tested twice, both absolutely negative. But, due to various reasons... has had the blood testing done again just yesterday. If the results are negative, he'll go for a biopsy - much to my dismay. If his blood tests are positive, he will NOT have a biopsy - and he will be gluten free.

I strongly believe my mother and sister are both gluten intolerant, if not outright Celiac. But, neither will test - and my mother was just DX with Diabetes yesterday, and still will not put any stock in a Celiac diagnosis. They just don't care, and they obviously both love pain, because they live with it day in and out. Needlessly.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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My hubby has celiac disease and has no known relatives with it or even symptoms.

One of our son's has recently been dx (we have 3)

One has had a neg blood test (no symptoms)

One is anaemic and symptomatic and we are waiting on blood results. :unsure:


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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My youngest is the one with the diagnosis, but since researching the disease we learned a lot of the symptoms describe issues our children have had all their lives. The older two didn't have the obvious gastro issues that people think of when they hear celiac and they are actually ahead on the growth chart, bu they used to eat constantly! I know lots of parents say that, but I'm not kidding when I say my kids were always eating something. I allowed the grazing and didn't think much of it because I was always careful to provide healthy things. Now I know they ate like that because their bodies were struggling to get nutrients. Since going gluten free they are down to a normal amount of meals and snacks compared to other kids their age.

Once they went gluten free, it became more obvious. The oldest said her stomach felt much better even though she never mentioned it hurt. Then when we had our first challenge they were both very ill, major tummy pains and in the bathroom for days! Gluten free it is, diagnosis or not!


Mom to 3 girls

DD1-diagnosed by allergist 10/2006

DD4 & DD9-diagnosed by Mom 01/2007

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My daughter has not been diagnosed, but she was definitely reacting adversely to gluten. She is currently gluten free and doing VERY well on the diet. We can definitely tell when she's been glutened, so I'm pretty positive she also has Celiac. I think I read somewhere that the chances of a first degree relative having celiac disease were like 1/20 or something. That's pretty high.


~Angie~

Gluten free since May 2004

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I have 2 children. My son (10.5) was diagnosed in July with Celiac. DD (4) has been tested twice and both times her bloodwork has been negative. She still is having some tummy issues, so the GI is keeping a close eye on her. GI suspects lactose intolerance now.

My Mom was tested and only her Anti-gliadin IgA was slightly elevated (her dr says normal) and she is not gluten-free. My Dad just got tested and is waiting for his results to come in. My sister has not been tested, but definitely could have it.

So, my son & I are really the only 2 known people in our family who have issues with gluten/Celiac.


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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I have two boys. One has celiac. My husband, my older son, my mom and I all had blood tests after Ty was diagnosed and they all came back negative. I do know that I have HLA B-8 which is one of the genes associated with celiac.

I have an identical twin sister who will no doubt get her children and herself tested should any symptoms arise among them. Neither my dad, my brother, nor any of my in-laws were tested. MIL has psoriasis (it's not bad these days), FIL has MS.

My mom had an uncle who died of stomach cancer, and most of his brothers and sisters had diabetes.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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I have 2 children. My son (10.5) was diagnosed in July with Celiac. DD (4) has been tested twice and both times her bloodwork has been negative. She still is having some tummy issues, so the GI is keeping a close eye on her. GI suspects lactose intolerance now.

My Mom was tested and only her Anti-gliadin IgA was slightly elevated (her dr says normal) and she is not gluten-free. My Dad just got tested and is waiting for his results to come in. My sister has not been tested, but definitely could have it.

So, my son & I are really the only 2 known people in our family who have issues with gluten/Celiac.

thanks for all your help


Gluten Free since April '04

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Here is one I am trying to figure out.

1 has ADD( 12years )

1 has POS NOD ( non pervasive deveolmental disorder) (9y)

1 has neg testing on the celiac panel ( took away cereals at 4 months old after vominting )

Sounds like this little piggy went to market... hope fully he went gluten free.

Well I think that with Science its going to get easier to tell .. who has had it who had it and has died and who will have it.

My family seems to have Colon problems. but we cannot connect it to celiac.

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I was just wondering how many of your children have celiac? And do any of you have sisters or brothers who have children with celiac even if they don't have it themselves? I'm sorry if this topic has already been covered, my sister just got engaged and will probably be having children soon, and I'm at the age where in a few years I will be as well. I was wondering if anyone with celiac has had non celiac kids? thanks for your help!!!

both of my daughters have Celiac. Me and my husband are both neg for it. WE do not know who else in our families have it either.


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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My father has Celiac. I carry the gene but do not have it (yet anyway). My oldest son has it but my youngest tested negative for the gene.

Nicole

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Our oldest daughter has it,

our youngest daughter was tested (biopsy only) the specialist said she didn't have Celiac before he did the biopsy, he told her that the blood tests were a waste of his time. I suspect he didn't look very hard during the biopsy (which of course turned out negative) because he already told her that she didn't have it. :rolleyes:

My mother has it ... she's not following the diet, but has many problems.

And I have it. My brother hasn't been tested, and my sister died of a brain hemerrage (sp) before I was diagnosed, so none of us had heard of the disease before that.

I suspect other members of the family (neices, nephews etc.) have it as well, but are not interested in getting tested.


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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I have 5 kids, ages 32-24. One has been tested and was told negative, blood test only. He and 2 others (are diagnosed) and possibly another, have terrible acid reflux. My daughter is corn intolerant and probably gluten intolerant, but not believing it. My sister is a diagnosed celiac for over 5 years now and our father has been gluten free for over 2 yrs now. My dad and I are not diagnosed celiacs, yet there is no doubt in our families minds that we have it.

I have 7 grandchildren, one of which has tooth enamel problems, which is a symptom of celiacs and the youngest grandson (2 months) is having lots of issues right now--could be true for him too--who knows?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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We currently have 4 children. Out of the 4, two have been recently proven to have Celiac. My blood work came back-. My Dh will be doing his bloodwork soon.

We have submitted our other 2 children for genetic testing to see if they are carriers.


Jen

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My step-daughter was diagnosed almost 4 years ago, when she was 6. Her older sister and half-brother were tested when the youngest was diagnosed and they were negative. Through a coincidence, I met a distant cousin of my husband's and she and her five siblings all have Celiac. They have an American Indian background and I have since learned that this group has a higher incidence of Celiac.

1 interesting thing is that my husband's distant cousin grew up on a farm and never ate processed foods until after she married and it is when she married and started eating processed foods, that she began to have problems, went to the doctor, and was diagnosed. Because of her persistence, all her siblings were diagnosed too.

My husband and I plan on having at least 2 children together and we plan to have them tested for Celiac if they show any of the symptoms.

I really am enjoying reading all of these posts; I have learned so much!

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I have 5 kids, ages 32-24. One has been tested and was told negative, blood test only. He and 2 others (are diagnosed) and possibly another, have terrible acid reflux. My daughter is corn intolerant and probably gluten intolerant, but not believing it. My sister is a diagnosed celiac for over 5 years now and our father has been gluten free for over 2 yrs now. My dad and I are not diagnosed celiacs, yet there is no doubt in our families minds that we have it.

I have 7 grandchildren, one of which has tooth enamel problems, which is a symptom of celiacs and the youngest grandson (2 months) is having lots of issues right now--could be true for him too--who knows?

yes the teeth problems is a big sign, i had the WORST time with my teeth as a child, countless cavities, teeth being pulled, chipping, no enamel, and way too much work done, frmo the time i was three! Only years later did my mom find out that i actually was brushing my teeth all those years, it was just the gluten that weakened them! I probably single handeldly put my dentists children through college in dentist bills


Gluten Free since April '04

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Both my son and I had the blood tests and they both came back negative. I know I have gluten intolerance because I went gluten free about a year ago and now feel 100 times better. I tested both of my kids through Enterolab and both their tests came back positive. I don't know if anyone else in my family is gluten intolerant because none of them will get tested. I think DH should also be tested, but he doesn't want to admit he has intestinal problems. It just isn't normal to be in the bathroom 3 times a day for 30 mins each time. It scares me a little since diabetes runs in both sides of his family.

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I had bloodwork done almost three years ago and it was positive. Never had the biopsy, cause I'm a sissy. Doc said, no problem, gluten challenge. So I didn't eat any gluten for months and the challenge was positive, too. When my mom came over here to the US to visit, I did the same thing with her for one month. When she went back to Germany she ate normal and got terrible sick. Her bloodtest was positive, but the biopsy negative. So it's two positive to one negative. She still says, she doesn't have it. I think she does, cause she has a dozen other problems linked to celiac and her doctor is an idiot. She still believes him though and thinks he is terrific, even though he misdiagnosed my tummy problems as a little kid as appendix problems. When asked, why they are on the wrong side he said, that the pain especially with kids sometimes travels to the other side. :blink: Whatever...

One cousin has MS, my mother and my grandmother (on mother's side) already both had terrible problems with the intestines. My moms intestines bursted and she needed surgery, then she had breast cancer. My grandmother had every disease on the planet linked to celiac. She also had stomache and intestine cancer which in her last month was pretty much everywhere in her body. My aunts and cousins on my mother's side all have issues with joint pain and body aches linked to celiac, but everyone ridicules me. I wouldn't be done tomorrow, if I started with their problems. But apparently they all love pain, because nobody listens :P .

Stef


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

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