How Many Parents And Kids Have Celiac?

[shezatrip]

Hi everyone,

I was wondering how many parents and kids BOTH have celiac?

The literature I have read said that there is only 10% or less chance

if a parent has celiac/then a child will have it.

Do think the percentage is really higher? I am seeing quite a few families all diagnosed with it. What is your experience with this?

Also, if you the parent have tested positive..would you automatically put

your child on a gluten free diet even if the child tested negative?

Thx!

[lovegrov]

My father and I both have it. My children both tested negative and neither has shown symptoms. I absolutely would NOT consider for even a second putting a negative, symptomless child on the diet. Why would anybody do that to their child?

richard

[kareng]

My teen boys are negative with no symptoms. They have regular bread and crackers. When we all eat together, it might be gluten-free or gluten-free but the bun.b. But a lot of stuff is gluten-free. BBQ chicken, oven fries, green beans & carrots...gluten-free now and before diagnoses. If we go to PF Changs we all order from the gluten-free menu so we can share.

We have talked to them about watching for problems.

[sa1937]

Both my adult daughter and I have celiac (I was diagnosed in April and she in Aug.) I really think my mother also had it but was never tested for it. Her symptoms were opposite of mine but definitely digestive (she died in 1997).

I've read a prevalence of 1 in 22 first-degree relatives and 1 in 39 second-degree relatives have a chance of developing celiac. Open Original Shared Link Look at the fact sheet for genetic screening...

[shezatrip]

Thanks everyone for your responses :-)

I am a newbie on the forum, in the process of diagnosis...

I have had chronic fatigue, horrible intestinal pain, bloating, fibromyalgia, brain fog, high bilirubin tests and ulcers...

I am getting the at home test biocard this week. will also order another gene test.

My uncle tested positive at 75, and my Dad has positive blood results at

83. (However he is not going to change his diet at this point)

My son, gets ulcers in his mouth, rapid thoughts, a bit of dark circles under his eyes, sometimes pain in his stomach, itchy dermatitis type between some fingers and on his feet. (he is 8) he tested negative.

His problems could be milk..or who knows something else.

The doctor wanted him pulled of dairy due to chronic fluid/allergies in his ears..

(both of us do not have diarrhea)

However he has SMELLY stools!

What should I do in his case? Try dairy free first..see what happens..(and if nothing)then put him back on dairy and try gluten free for a few weeks?

Or should I just get a full on allergy panel? (because it could be corn, etc..)It gets so confusing how to diagnose..Any input appreciated.

Should I get BOTH of us the celiac Gene test?

[tarnalberry]

Hi everyone,

I was wondering how many parents and kids BOTH have celiac?

The literature I have read said that there is only 10% or less chance

if a parent has celiac/then a child will have it.

Do think the percentage is really higher? I am seeing quite a few families all diagnosed with it. What is your experience with this?

Also, if you the parent have tested positive..would you automatically put

your child on a gluten free diet even if the child tested negative?

Thx!

Because it is not genetics alone that determines if someone has celiac disease, no, I would not put my child on a gluten free diet without some other reason than myself needing to be gluten free. Something has to "activate" the gene, as it were, and in MANY people, that never happens. Some variety of symptoms (be it gastointestinal, neurologic, behavioral, nutrient deficiency, etc.) would need to lead me to consider celiac first.

That said, since I need to be gluten free, and my 8 month old has no idea how to properly eat anyway, unless her dad has her somewhere out of the house where there is gluteny stuff, she will eat the same stuff I do - which is gluten free. (Mind you, we don't do specialty gluten free stuff outside of pasta (which we use a handful of times a year) and soy sauce. So it's not like she's eating inferior cereal or cookies - she's eating apples and hummus and bananas and chicken.) When she is able to mind her own crumbs, and if she's showing no symptoms, like my husband, she will have some limited amount of gluteny food here in the house.

[srall]

Thanks everyone for your responses :-)

I am a newbie on the forum, in the process of diagnosis...

I have had chronic fatigue, horrible intestinal pain, bloating, fibromyalgia, brain fog, high bilirubin tests and ulcers...

I am getting the at home test biocard this week. will also order another gene test.

My uncle tested positive at 75, and my Dad has positive blood results at

83. (However he is not going to change his diet at this point)

My son, gets ulcers in his mouth, rapid thoughts, a bit of dark circles under his eyes, sometimes pain in his stomach, itchy dermatitis type between some fingers and on his feet. (he is 8) he tested negative.

His problems could be milk..or who knows something else.

The doctor wanted him pulled of dairy due to chronic fluid/allergies in his ears..

(both of us do not have diarrhea)

However he has SMELLY stools!

What should I do in his case? Try dairy free first..see what happens..(and if nothing)then put him back on dairy and try gluten free for a few weeks?

Or should I just get a full on allergy panel? (because it could be corn, etc..)It gets so confusing how to diagnose..Any input appreciated.

Should I get BOTH of us the celiac Gene test?

My daughter had the same symptoms as your son and then some. She's a new child gluten/dairy and corn free.

My mother, daughter and myself are on a gluten free diet, and not by choice. We were having severe health issues that cleared up when we went gluten free, and in my daughter's and my case also corn and dairy. None of us tested positive to a blood test, but I would definitely call us gluten intolerant at the very least. Oh...my mom is 67, I'm 42 and my daughter is 7.

[shezatrip]

How did you find out you were allergic to corn? Did you do an allergy panel?

My daughter had the same symptoms as your son and then some. She's a new child gluten/dairy and corn free.

My mother, daughter and myself are on a gluten free diet, and not by choice. We were having severe health issues that cleared up when we went gluten free, and in my daughter's and my case also corn and dairy. None of us tested positive to a blood test, but I would definitely call us gluten intolerant at the very least. Oh...my mom is 67, I'm 42 and my daughter is 7.

[shezatrip]

Thx, makes so much sense! It's better to eat whole, nutritious foods than

all the flour, sugar, processed anyway ;-)

Because it is not genetics alone that determines if someone has celiac disease, no, I would not put my child on a gluten free diet without some other reason than myself needing to be gluten free. Something has to "activate" the gene, as it were, and in MANY people, that never happens. Some variety of symptoms (be it gastointestinal, neurologic, behavioral, nutrient deficiency, etc.) would need to lead me to consider celiac first.

That said, since I need to be gluten free, and my 8 month old has no idea how to properly eat anyway, unless her dad has her somewhere out of the house where there is gluteny stuff, she will eat the same stuff I do - which is gluten free. (Mind you, we don't do specialty gluten free stuff outside of pasta (which we use a handful of times a year) and soy sauce. So it's not like she's eating inferior cereal or cookies - she's eating apples and hummus and bananas and chicken.) When she is able to mind her own crumbs, and if she's showing no symptoms, like my husband, she will have some limited amount of gluteny food here in the house.

[beefree11]

Hi everyone,

I was wondering how many parents and kids BOTH have celiac?

The literature I have read said that there is only 10% or less chance

if a parent has celiac/then a child will have it.

Do think the percentage is really higher? I am seeing quite a few families all diagnosed with it. What is your experience with this?

Also, if you the parent have tested positive..would you automatically put

your child on a gluten free diet even if the child tested negative?

Thx!

I read somewhere that the sensitivity as well as celiac runs higher in people of Italian heritage. I left a vmail with my husband a little while ago asking him to please call the gastro for the results of an endo/colonoscopy done in September just to end my wondering (he is Italian - she is gluten intolerant). It may just be something she developed along with her Hashimoto's (she suffers from PCOS, too). Not sure at all.

I had my tests done four years ago and am negative.

ETA: Looking back, I believe my daughter has been suffering for a very long time but we were never aware of gluten intolerance. She saw the doctor when ill, no problems with digestion/elimination at all. It seems she became symptomatic around the time she was found to have nodules on her thyroid. It took another four years to get tested for gluten ( when she returned home) and the rest is history. She also tested to have issues with Wheat GF4, IGG 17.8 (Reference Range LESS THAN 2.0 mcg/ml), CASEIN/COW MILK AGF78,IGG 15.1 (Reference Range LESS THAN 2.0 mcg/mL) and then there is the ALLERGEN (IGG) IMMUNOCAP GLUTEN GLUTEN IGG* 17.8 (Reference range <7.5 mcg/mL) some other higher counts were with maize/corn, egg yolk, soybean, and egg white.

[srall]

How did you find out you were allergic to corn? Did you do an allergy panel?

Nope to the allergy panel. Since I was having so many food issues that resolved with diet (gluten free in March 2010) I recognized a lot of symptoms in my daughter. First we pulled her off lactose. Slight improvement. Then I just pulled her off dairy because I really really really didn't want it to be gluten. She was still struggling. And when I say struggling, I mean my husband and I thought she had cancer. We cut out gluten. She improved greatly. We never re-introduced gluten, because of my issues, but we both tried dairy. Lila, my daughter got a butterfly rash on her face. I crashed with flu like symptoms. Then all was well until Halloween when I let her have gluten free candy. That was really when her body just about fell apart. I don't know if it's because her system was getting clean, but she had the worst D and hives I've seen. Then we took her off corn and one time my husband gave her cotton candy thinking it was just real sugar and of course it was corn syrup and she got the horrible hives again. (And insane behavior)

On Christmas she got some gum from her grandparents and we did let her chew it, and...HIVES again. So figuring her food issues out has been elimination and re-introduction, which seems to be the most conclusive to me since all our other tests are showing "normal" results.

[shezatrip]

wow, sounds like we are all going through the same thing. Trial and error...

I am truly wiped out from having to figure it out. Has been going on for months...

Now, we are just dairy free...will see how that goes and then onto the next!

With me it has been YEARS..many years.

With my 8 year old, it is allergies/ear problems, hard time concentrating (bit of OCD) constipation, and light rash between his fingers or on his feet,

ulcers in mouth.

I have read about dermititis per. in celiacs, however not sure if that is what

it is. He has little white bumps with fluid- can barely see them. Will probably post on the celiac derm board. I should probably just get the celiac gene test..but, they are so expensive. need to save.

Thx again everyone! learning more and more.

Nope to the allergy panel. Since I was having so many food issues that resolved with diet (gluten free in March 2010) I recognized a lot of symptoms in my daughter. First we pulled her off lactose. Slight improvement. Then I just pulled her off dairy because I really really really didn't want it to be gluten. She was still struggling. And when I say struggling, I mean my husband and I thought she had cancer. She improved greatly. We never re-introduced gluten, because of my issues, but we both tried dairy. Lila, my daughter got a butterfly rash on her face. I crashed with flu like symptoms. Then all was well until Halloween when I let her have gluten free candy. That was really when her body just about fell apart. I don't know if it's because her system was getting clean, but she had the worst D and hives I've seen. Then we took her off corn and one time my husband gave her cotton candy thinking it was just real sugar and of course it was corn syrup and she got the horrible hives again. (And insane behavior)

On Christmas she got some gum from her grandparents and we did let her chew it, and...HIVES again. So figuring her food issues out has been elimination and re-introduction, which seems to be the most conclusive to me since all our other tests are showing "normal" results.

[gary'sgirl]

I have Celiac (diagnosed with biopsy) and all three of my children also have it. They were not formally diagnosed, but we found through eliminating gluten and then reintroducing it. They are 5, 3 and 1 years old and we decided to not put them through all the testing because it is easy to get false negatives with young children.

Also, both my parents and one of my three sisters have found out they also have Celiac since my diagnoses. My mother and sister have similar symptoms to me, but my dad seems to get high blood pressure and gain weight, but does not have any of the usual symptoms.

Anyway, from where I sit, it seems as though the percentage of family members that also get Celiac is higher than they say, but we may just be the extreme exception.

[Roda]

I have celiac as does my youngest son who is 6. My oldest son is almost 10 and is not gluten free he has had three screenings for it and all negative and is not exibiting any symptoms at this point. My youngest has been screened twice, two years apart. First time after my diagnosis and was negative and showing no symptoms. I had him retested two months ago because I was suspecting something was wrong (having symptoms) and he was positive. I put him straight on the diet and opted out of the endo/biopsy.

[beebs]

high bilirubin tests and ulcers...

Is high bilirubin a symptom? Mine is through the roof as well as elevated liver enzyme but my dr thought it was probably gilberts syndrome- don't know why - I have never shown any other symptoms of gilberts....

Sorry for the hijack

[shezatrip]

wow..a lot of family members! At least everyone can journey together down

the healthy road, right?

As far as bilirubin, Yes..I have read that it is high in those with Celiac.

Many who go gluten free come down.

I haven't heard of Gilberts synrome..will have to look that up.

[beebs]

wow..a lot of family members! At least everyone can journey together down

the healthy road, right?

As far as bilirubin, Yes..I have read that it is high in those with Celiac.

Many who go gluten free come down.

I haven't heard of Gilberts synrome..will have to look that up.

I am shocked about the bilirubin - mine is through the roof. The plot thickens!

Gilberts is kind of like a non syndrome - it doesn't do anything bad and I kind of get the feeling it might be like IBS - ie that tell you that you have it when they don't actually know what is going on.

[shezatrip]

LOL! That's how I feel..."The plot thickens and another piece of the puzzle

is added" There HAS to be an easier way, don't ya think? :-)

I am shocked about the bilirubin - mine is through the roof. The plot thickens!

Gilberts is kind of like a non syndrome - it doesn't do anything bad and I kind of get the feeling it might be like IBS - ie that tell you that you have it when they don't actually know what is going on.

[T.H.]

My father, brother, daughter, and myself are all positive. My 7 year old son was negative, but he was small for his age, had problems with dairy, hard time concentrating, ulcers in his mouth....sounds familiar, yeah?

We took him off of gluten along with the rest of us, and he improved a little, but not entirely. However, I was having trouble too, so this is what I did:

1. Dropped all 8 allergens from the kids diets, plus gluten.

2. Kept a food journal noting what we ate, what the reactions were and what the state of the body was - physical and emotional.

3. Slowly added back in foods - a small dose one day to see if any reaction, and then they got to pig out on it the next day if the first day was okay.

This helped us a lot, actually. It has now been a year. His mood improved, his melon belly went away, his ulcers disappeared. He had these odd little sort-of pimples on the back of his arms that went away. We challenged my son with gluten a month or so ago - mood problems, bloating, lots of gas. So he's off of gluten now. Curiously, we discovered that when he had been off of gluten for a few months, it turned out that his problems with dairy pretty much stopped. It had been the gluten making him lactose intolerant for years. Who knew?

I suspect there may still be a few food issues with my kids, and have consulted an allergist on this. His opinion was the following: if a person is not having hives, then scratch tests and blood tests for allergies don't tend to be all that reliable. A food journal and a controlled diet for a short period do just as good a job, if not better, in determining what foods are problematic. And they tend to catch intolerances, as well, where allergy tests can't.

Good luck with your own search for answers.

And in response to another comment in this discussion:

I absolutely would NOT consider for even a second putting a negative, symptomless child on the diet. Why would anybody do that to their child?

I must admit, I was really surprised to hear this opinion. Why would I put my child on the diet? I'd do it so my child NEVER has to go through the decades of bodily damage I went through. I'd like my child to never worry about miscarriage because she's asymptomatic, or growth deficiencies, or emotional problems, or physical disability - because the medical field and testing is lagging behind in terms of being able to tell who is reacting to wheat, and who is being damaged.

There are dozens upon dozens of people here who have experienced it, myself included. So I suppose my answer to this question is: If I have my child go through a slightly more difficult, but healthy, diet and I'm wrong, she gets to expand her diet later as research and information catches up to reality. If I don't have her go on the diet and I'm wrong, then it's likely she'll have some permanent problems that may haunt her the rest of her life - like I did.

Since we have a disease where there is still a lot of unknowns, and I know it's prevalent in my family, I'd much rather err on the side of caution.

[tarnalberry]

I must admit, I was really surprised to hear this opinion. Why would I put my child on the diet? I'd do it so my child NEVER has to go through the decades of bodily damage I went through. I'd like my child to never worry about miscarriage because she's asymptomatic, or growth deficiencies, or emotional problems, or physical disability - because the medical field and testing is lagging behind in terms of being able to tell who is reacting to wheat, and who is being damaged.

There are dozens upon dozens of people here who have experienced it, myself included. So I suppose my answer to this question is: If I have my child go through a slightly more difficult, but healthy, diet and I'm wrong, she gets to expand her diet later as research and information catches up to reality. If I don't have her go on the diet and I'm wrong, then it's likely she'll have some permanent problems that may haunt her the rest of her life - like I did.

Since we have a disease where there is still a lot of unknowns, and I know it's prevalent in my family, I'd much rather err on the side of caution.

I don't know of any studies that have looked into it, but there's a difference than an adult testing positive while being asymptomatic, and a person NEVER showing ANY symptoms their whole life. If a third of the population has the genes, but only 1% of the population has celiac disease, that's a whole lot of opportunity cost (doing the diet) for a very low chance of having the disease.

Of course, everyone has to find their own "solution" on this one, and if it works for your family, then that's really all that matters.

[beebs]

To answer the question.

My mother is diagnosed. Her dad was diagnosed with bowel cancer at 48 after a whole life of "sickly tummy episodes". My two children are showing symtpoms. I am waiting for the results of an endo for one and the other has an endo scheduled for two weeks time.

I have tested neg and don't have the two most common genes. I have all kinds of crazy issues and have both a rheumy and GI that I see. And neither can tell me what is going on. So I have just gone gluten free because at this point I have nothing to lose!

[eatmeat4good]

What if your child happens to have Silent Celiac? I won't give gluten to any child ever. My sister's kids get gluten free cookies at auntie's house.

[luvs2eat]

I was diagnosed in my late 40s... the ONLY person in my immediate and extended Irish family. Middle daughter (Irish and Jewish ancestry) was diagnosed about 4 years later by endoscopy. Youngest daughter was diagnosed about 3 years later by endo and oldest daughter was diagnosed by bloodwork last year. Youngest daughter is having the worst time w/ it... many, many food intolerances.

[weluvgators]

We went gluten free for our second, most obvious child that was never able to tolerate gluten orally. She had systemic, permanent damage from gluten exposure through my breast milk in her first 14 months of life (tooth staining, decay, and improper formation). After going gluten free for her, we came to realize that her older sister and myself have serious gluten issues. We are all genetically at high risk for celiac, but my primary symptoms of gluten exposure were NOT intestinal. And my symptoms seem consistent with my family history that indicates that I am probably at higher risk for development of neurological and cognitive issues from gluten. Of course, it would take years to "prove" this, and I am unwilling to do so now that I have experienced gluten freedom!

When I contacted the University of Chicago, they indicated that it was not uncommon to see it in the family as we were describing. However, we continue to seek experienced care, as many of our leading indicators are "allergic" in nature - sinus, respiratory, blood pressure fluctuations, and cutaneous manifestations. And we have plenty of the "celiac" genetics.

We fully embraced a gluten free home from the beginning for all family members, and none of us were able to get a "positive" for celiac diagnosis (thank goodness for small favors from a health and life insurance perspective, I think). We have yet to fully trial gluten for our youngest child, but I already know how badly CC affects him. Fortunately for us, we are all symptomatic enough that we don't have to have hard discussions right now about "some" of us getting gluten.

[tarnalberry]

What if your child happens to have Silent Celiac? I won't give gluten to any child ever. My sister's kids get gluten free cookies at auntie's house.

The point is that silent celiac in children is rare. (This is different than for adults.)

Lots of things have potentially very bad consequences, but are low risk, so we do them. What if you end up in a car accident and your child dies? We still drive. What if your gas line leaks and you die from the fumes? We still use gas appliances. What if you give salmonella poisoning to your toddler when feeding them chicken? We still do it. All these things are low - but not zero - risk, and we have (generally) decided that the low risk is worth the benefit. That tradeoff evaluation, of course, needs to be made for each person on their own.