Passing Celiac On To Children

[tarnalberry]

I agree with Richard and Tiffany, that this doc is right on the mark. About the genetics, you do NOT get your parents genes copy for copy. Think about this; I have green eyes. My mom had blue eyes, my dad brown. My sister has blue eyes. My Paternal-grandmother had blue, and grandfather had brown. My maternal grandfather had brown and my maternal grandmother had GREEN! Not my mom, or my dad.

Eye color is more complicated. Green, being recessive, is usually 'hidden' by brown eyes. Blue is also recessive, but with a different allele than green. Most likely, your dad has a brown allele and either a blue or green, your sister has blue and green alleles, and the blue is predominate over green, and you either got two greens, or your green is predominate over blue. Environmental factors play a role in the extent of expression of genes - including eye color expression - and it's not as simple as "how much vit X is in your diet" in many cases.

sorry, wasn't trying to offend. was only trying to present my experience...

I am well aware of those being the most current studies, however, I am within my rights to find fault with the methodology of the studies and think that since my real life experience seriously contrasts with the current studies, that maybe just maybe I don't have to agree with the current studies.

While I accept that your experience wasn't to be one of the ones who didn't get celiac though following the suggestions to reduce risk (you may still have reduced your risk - lower risk doesn't mean no risk), I'm curious what methodology issues you have with the studies. (I'm actually truely curious, not looking to 'start a fight'. I was an applied physics major because I liked doing research, and the intricacies of putting together a well-designed study is particularly fascinating, and I'm curious what I have overlooked regarding the methodology of the studies in question.)

[tiffjake]

Eye color is more complicated. Green, being recessive, is usually 'hidden' by brown eyes. Blue is also recessive, but with a different allele than green. Most likely, your dad has a brown allele and either a blue or green, your sister has blue and green alleles, and the blue is predominate over green, and you either got two greens, or your green is predominate over blue. Environmental factors play a role in the extent of expression of genes - including eye color expression - and it's not as simple as "how much vit X is in your diet" in many cases.

I guess that's my whole point. Just because YOU have a gene does not mean that your child will have that gene AND develop the trait that it represents.

[TCA]

Just wanted to jump in on the breastfeeding bandwagon. Percentages aside, I breast fed my son until he was 20 mos and still going on my daughter at 13 mos. Both have celiac. The biggest issues I see with formula is that neither of them could/can tolerate any of them at all. I would highly recommend breastfeeding for that reason. If your child does fall into that 5% it might be crucial that you breastfeed. Just my opinion! Glad you have a dr. you like and trust!

[2kids4me]

This is an interesting thread, I would like to add my experience if I may.

My children's GI doctor is a board member for the Canadain Celiac asscoiation. His research on celiac in first degree relatives has been published in medical articles.

I have diabetes /hypothyroidism/pernicious anemia. Daughter is Asperger/hypothyroid/celiac. Son is diabetic/celiac.

Both children were breastfed exclusively with solids introduced at 10 months (banana was first then veges, then cereals)

I am not a genteticist nor a doctor. Due to a muscle condition that had to be investigated - genetic studies were done on my daughter and I had the opportunity to discuss genetics in general with them.

There was no family history on either side of immune mediated disease. I was diagnosed type 1 diabetic at age 25, and was the first in the family to have such a problem. The endocrinologist said the chances of any of our children developing diabetes were minimal - about 5% or less.

We produce many eggs in a lifetime and men produce millions of sperm. EACH one contains different mix of genetic information. Dominant genes / reccessive genes each in their own configuration.

I was told that if one person is diagnosed celiac, then all first degree relatives should be screened (we were). In our case - I am not celiac, my husband is not celiac yet we managed to produce 2 children who are...

It is apparent that there is a dominant factor from me that was expressed in both children - a flaw that was activated by some trigger. It triggered a different combination in the children than the disease combo I have.

I believe he quoted the same risk (5 - 10 %) as stated in the first post - for a celiac parent to have a child that goes on to develop celiac. Where the confusion may be - is that the risk of a sibling having celiac is much higher - about 50 %. SO if you have a baby and he/she is "celiac free", then the risk of a sibling to that baby having celiac remains at the 5% mark. If one of the children develops celiac, then all siblings should be tested because the odds have just gone way up..... since the gene has now expressed itself in the next generation. I would think it would be wise to screen children in families where one parent has celiac. Just as it is wise to screen/watch children at increased risk for diabetes (predisposed by genetics).

Life is roll of the dice - your children may or may not develop celiac. Other things can happen too.

We obviously fell into the 5% category but many other families are in the 95% and wouldn't be reading/posting here.

My interpretation of the comment about things going well if the disease is well controlled was aimed at the health of mom if she got pregnant. As in - no increased risk of pregnancy complications for a celiac mother. I could be wrong.

Any of these threads are worthwhile - it provokes thought and discussion and sometimes controversy. That's good

I am just a mom, this post is only an opinion. Research and percentages have to be looked at closely - you will find different numbers for the risk of a parent giving birth to a celiac and the risk of a sibling having it if another is diagnosed. Hope this makes sense. I am up late after son went sleepwalking and I had to tuck him back in. Get this - sleepwalking has a genetic component too..

[mmaccartney]

I guess that's my whole point. Just because YOU have a gene does not mean that your child will have that gene AND develop the trait that it represents.

And that was exactly my point :-).

If you have one celiac gene and on non celiac gene, you child will get one of those, a 50/50 chance. The other "pair" to that gene will come from your partner.

If you have two celiac genes, your child will get one of those 2, a 100% chance. Again, the other "pair" to that gene will come from your partner.

As I mentioned previously,

Note that having the genes does not indicate active celiac. It can remain inactive until triggered.

Once one is predisposed to Celiac by inheriting the genetics from their parents, they may or may not "get" active celiac. Perhaps that was the % chance your Doctor was referring to...

Here is the result of my genetic testing from Enterolab, which supports what I am saying:

Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

Note how Dr. Fine indicates that when "you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you."

Note also how Dr. Fine indicates that "Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene."

[jaimek]

That's funny because I have Celiac but neither of my parents carry any of the genes that you are referring to. My brother and parents all had a blood test and endoscopy and they showed up with absolutely nothing.

[mmaccartney]

That's funny because I have Celiac but neither of my parents carry any of the genes that you are referring to. My brother and parents all had a blood test and endoscopy and they showed up with absolutely nothing.

One can have a/the gene(s) and not have active celiac resulting in a negative celiac panel, and negative endoscopy.

Did your 1st degree relatives have genetic testing done as well?

[jaimek]

Yes, they were all tested for the gene as well.

[mommida]

The doctor's e-mail was right on track with recent research.

As far as baby's first foods, what foods and what age to introduce the food, that advice changes. My children were about three and half years apart and the advice was very different. The first child it was supposed to be introduced to the mixture of added rice cereal to formula or breastmilk at 5 months and for the second child was 7 months. During that time they also introduced a formula with added rice cereal, as a lot of mother's had been adding rice cereal to their infants cereal from the time the younger than 5 months.

I had a great book on breast feeding, it said breast milk had destroyed cancer cells in lab test studies. (Unfortunately I loaned it to a new mother and haven't seen it since - and I can't even remember the title.) There are so many differences from breastfeeding and bottle or formula feeding. The way an infant's tongue moves during feeding from the breast or bottle- can make a difference in the shape of the mouth and how straight the teeth are. The change in compostion of beastmilk for the age of the baby. The change in the amount of fat in the breastmilk at every feeding (foremilk and hindmilk), the higher fat concentration in the hindmilk is said to trigger the full feeling in the infant and may lead to less obesity problems as an adult. The "facts" of these studies only lead me to more questions.

I think we can all agree, we want more research.

As a personal note... My Celiac child was introduced solids at the proper window and breastfed until 12 months. All the current studies say I did every thing right. BUT, It is frustrating to see a statistic that was supposed to be low (5% or less) that my child has to pay for 100% playing out every day for the rest of my child's life.

L.

[Guest nini]

while ONE study indicates environmental factors like breastfeeding and timing of introduction of gluten, other studies indicate it's PURELY genetic... studies are flawed because of bias in initial assumptions... I'm going on personal experience thanks...

[luvs2eat]

All of us kids were allergic to eggs when we were babies. I'd read that early introduction of solids was related to allergies, so I didn't start my kids on solids till they were 6 months old... before that, nothing but boob juice.

Even then... no eggs or meat or citrus till at least a year. I made ALL my own baby food.

I was the only one my mom nursed... the only one w/ Celiac.

I think it's all a crap shoot. Breastfeeding is a good thing. Just enjoy your baby and hope celiac doesn't show up!

[tarnalberry]

Yes, they were all tested for the gene as well.

The current genes tested for only cover most celiac cases. At least 2% of cases cannot be explained by the currently identified genes.

while ONE study indicates environmental factors like breastfeeding and timing of introduction of gluten, other studies indicate it's PURELY genetic... studies are flawed because of bias in initial assumptions... I'm going on personal experience thanks...

Initial assumptions should hold no bearing if a study is properly designed. That's why I asked about the methodology issues you had with the study. (Many properly designed studies find the opposite of the initial assumption.) Maybe it's my training, but one/two/three data points simply isn't enough for me to make a conclusion on a whole disease process. (I understand it's your preferrence for your family, though, and respect your choice. :-) )

[mmaccartney]

The current genes tested for only cover most celiac cases. At least 2% of cases cannot be explained by the currently identified genes.

But what doesn't make sense to me is that Jamiek has a Celiac gene, but neither of her parents do. Any thoughts on that one? How could one have a gene that their parents don't have???

[VydorScope]

But what doesn't make sense to me is that Jamiek has a Celiac gene, but neither of her parents do. Any thoughts on that one? How could one have a gene that their parents don't have???

Either the test or the sample was flawed. You can not get genes your biological parents do not have.

[Fiddle-Faddle]

Nini, what do you think the odds are that, had you NOT breastfed your daughter, she might have developed full-blown autism (and remember the high percentages of autistics who have gluten and casein intolerances)? I haven't done any research to see if anyone has studied breastfeeding and autism, but every mom that I've met who had a severely autistic child (and I've met many) gave her baby formula, not breastmilk. No, that's not a scientific study--but I don't believe it's a fluke, either.

[VydorScope]

Nini, what do you think the odds are that, had you NOT breastfed your daughter, she might have developed full-blown autism (and remember the high percentages of autistics who have gluten and casein intolerances)? I haven't done any research to see if anyone has studied breastfeeding and autism, but every mom that I've met who had a severely autistic child (and I've met many) gave her baby formula, not breastmilk. No, that's not a scientific study--but I don't believe it's a fluke, either.

For ANY medical condtion, and I realy belive its ANY but thats impossible to prove, you chances are BETTER of not getting it if your breast feed. Durration of that feeding is up to question, but everyone seems to agree to at least 6 monhts, if not a year.

One peditration we listned to siad it this way "If you breast feed your childern, I wont get to see you all that much"

There are zillions of forumla choices, and old wives tales of herbal drinks or whatever, but in the end, the best diet for you baby (assuming healthy mother) is breast milk. That is what they were designed to eat, and thats what Moms were designed to make.

[tarnalberry]

Perhaps we can 'make everyone happy', by saying that, if you choose to not introduce any solids for the first year, in the case where the mother doesn't have celiac disease (but she or the father is a carrier), she is gluten free until some point between 6 and 9 months, at which point she introduces wheat into her diet, which will get gluten into the breast milk.

Of course, add this to the complications of finances, free time, social lives, being sick, work, and everything else, and it even more makes me not want to have kids. :-P

[mommida]

But what doesn't make sense to me is that Jamiek has a Celiac gene, but neither of her parents do. Any thoughts on that one? How could one have a gene that their parents don't have???

My daughter has both DQ2 and DQ8, and my test was supposedly negative for the genes. The testing was done by Prometheus Labs. When the results were questioned the response was "every test has a 30% error rate, could still be an undetectable gene, and genes mutate". I tend to think the tests aren't that accurate, because this test was supposed to be 98% accurate.

L.

[mmaccartney]

Wow, I thought genetic testing was much more reliable then that!

Just goes to show you that medical science isn't quite where we want it to be.

Both my children have dq2 gene, however neither are celiac or gluten intolerant at this point in time.

Both were breastfeed exclusiviely, not a drop of formula! We introduced solid foods at 6 months with both of them. Our first developed food allergies (see sig below) that took us and the docs about 4 months to figure out. Lucky for all of us we knew not to give him any nuts in the first year! With our second we still introduced food at 6 months, but only after we had him allergy tested. He was positive for his food allergies even before we introduced solid food.

Neither has ever eaten eggs. The older one did eat some milk containing products for about 4 months. The older one is a vegetarian (by choice) and the other eats meat.

So, they got food allergies, some of which runs in the family. They got the celiac gene, but haven't had active intolerance of gluten et.

As far as I know we did everything right. From reading all the expierences I thought I throw ours out there too.

And for the record, breastmilk is best for children!!

[Guest nini]

Nini, what do you think the odds are that, had you NOT breastfed your daughter, she might have developed full-blown autism (and remember the high percentages of autistics who have gluten and casein intolerances)? I haven't done any research to see if anyone has studied breastfeeding and autism, but every mom that I've met who had a severely autistic child (and I've met many) gave her baby formula, not breastmilk. No, that's not a scientific study--but I don't believe it's a fluke, either.

well, I never gave that much thought... I didn't really think that she didn't develop full blown autism because I breastfed her... I assumed that the symptoms she DID have were because of the undiagnosed Celiac/gluten intolerance... I breastfed, not because of any studies that said it prevented this or that, but because I wanted to.

[Fiddle-Faddle]

I'm just wondering whether the genetic "pre-wiring" for autism is linked or even identical to the gentetic "pre-wiring" for celiac. The stomach pains, joint pain, and brain fog you guys describe--imagine a toddler with DQ2 and DQ8 (breastfed until introduction of solid foods, including gluten) having to deal with severe stomach pains, joint pain, and brain fog while they are in their most formative stages of learning. Now imagine an infant, having to deal with the same thing, but without the known and unknown benefits of breastmilk--and the added insult to the immune system of either casein or soy since birth.

Now add 26 vaccines, many of which until VERY recently contained mercury (and some still do!), which crosses the blood-brain barrier. The immune system is overwhelmed, and a known neurotoxin is present in numbers exceeding the FDA limit for full-grown adults.

How could this NOT be a recipe for autism?

[Guest nini]

I'm just wondering whether the genetic "pre-wiring" for autism is linked or even identical to the gentetic "pre-wiring" for celiac. The stomach pains, joint pain, and brain fog you guys describe--imagine a toddler with DQ2 and DQ8 (breastfed until introduction of solid foods, including gluten) having to deal with severe stomach pains, joint pain, and brain fog while they are in their most formative stages of learning. Now imagine an infant, having to deal with the same thing, but without the known and unknown benefits of breastmilk--and the added insult to the immune system of either casein or soy since birth.

Now add 26 vaccines, many of which until VERY recently contained mercury (and some still do!), which crosses the blood-brain barrier. The immune system is overwhelmed, and a known neurotoxin is present in numbers exceeding the FDA limit for full-grown adults.

How could this NOT be a recipe for autism?

you make a very good point... how indeed!

[gfp]

Whoa guys! His advice comes on the heals of the most recent research on the subject! Go take a look at the studies before second guessing their results. :-) They could be flawed studies, but in these three cases (chance of first degree relative *developing celiac disease*, breastfeeding reducing the risk of developing celiac disease, and introducing wheat after 6 months *and before 9 months*), they're actually fairly good studies. (pubmed has the abstracts on these studies, if you want to look them up.)

Ooops.. exactly what I was going to say....

And the fact someone is breastfed and develops celaic has no relevance whatsover... noone is saying breasfeeding precludes celiac simpy that it reduces the chance of developing it.

Either the test or the sample was flawed. You can not get genes your biological parents do not have.

You can its is natural mutation. You either believe in genes or not, if you do then mutation of genes is an everyday occurence which is scientificaly proven.

However you also make a good point about natural parents.

Research shows that in random samples 1:25 children are not fathered by the presumed father (in biassed samples of people requesting DNA sampling the figure is as high as 1:7). Figures were from the UK and US.

The trigger for the random sampling was actually based on studies and diagnosis of hereditory diseases and the number of mothers who refused to have genetic testing done which both puzzled researchers and skewed the results. This is therefore on of the sources of error in testing.

Perhaps we can 'make everyone happy', by saying that, if you choose to not introduce any solids for the first year, in the case where the mother doesn't have celiac disease (but she or the father is a carrier), she is gluten free until some point between 6 and 9 months, at which point she introduces wheat into her diet, which will get gluten into the breast milk.

Sounds logical but I think the breastfeeding preventing a trigger actualy is based on the IgG being transferred via breastmilk and the IgA being transferred via the umbilical prior to birth although we obviously read the same pubmed article and it did not specifically state this.

[tarnalberry]

Sounds logical but I think the breastfeeding preventing a trigger actualy is based on the IgG being transferred via breastmilk and the IgA being transferred via the umbilical prior to birth although we obviously read the same pubmed article and it did not specifically state this.

In the 'compromise case', I wasn't referring to the breast feeding reducing the chance of developing celiac disease, but the introduction of gluten in the child's diet between the ages of 6 months and 9 months reducing celiac disease.

[VydorScope]

You can its is natural mutation. You either believe in genes or not, if you do then mutation of genes is an everyday occurence which is scientificaly proven.

Thats an awfull silly way to put it. One does not "believe" in genes, they are as real as this keybaord I am typing on. One could argue the nature vs nuture for influnce, but the genes are real phyiscal thing. Unless of course you want to get in to the realm of pure phliosphy, where its impossible to prove that you even exist... but I perfer to deal with the real world.

"Natural" mutation can happen, but its not an every day thing, and even if it was the chances of the extremly specific mutatin that would be be need to create the extreamly spefic genes to create celiac disease (and still have a survible amout of good genes) is not exactly somthing that would happen "every day", extremely rare would be more alone the right lines. With out looking up numbers I would be surprised to if it happened see more then once in the genral population in a given century, and would not be surprised to see that it has in fact never never happened.