Celiacs In Families

[monkeypuss]

hey dunno if this is the right part of these forums to ask this, but i wondered if anyone could tell me what are the chances of a celiac mother having a daughter who had it? or does it usually skip a generation?

I ask for 2 reasons, 1,because my nan had it, its looking like I do too and i'm wondering about the chances of my mum having it, shes not had any big issues but she gets IBS alot and i'm wondering..also if i ever have kids would they be really likely to get it, if it turns out i do?

[Lisa]

The latest number that I have heard was 20% likelihood to pass on to children. I don't know whether that is the heredity gene or the disease itself.

[celiac-mommy]

Genetics is very difficult!

Explaination for me--I don't have it but both my children do! No one on either side of our families had/has Celiac... (I do believe my dh is the culprit and is in denial)

[ptkds]

I have 4 dd's. 3 of them have Celiac. I think the scientists say it is a 10% chance, but I think (along w/ many others) that the number is actually higher. My mom has it, too. We think my grandpa (her dad) had it, but he has already passed away, so we can't test him.

[pixiegirl]

Both my daughter and I have celiac. I honestly believe my mom has it but her blood test came back negative and thats good enough for her, she desperately wants to eat bread, she says she can't live without it.

Susan

[dadoffiveboys]

Well in my family of five boys (one I can't tell yet).. my wife does NOT have it.. I HAVE it.. and my four older boys ALL HAVE IT. (I'm betting my fifth will have it but he's only 6 months old now). That means (if I do the math right) that 100% have it. I believe it is probably is 10% for having celiac if your family members are gluten intolerant.. but I think the numbers run near 30% if you are gluten intolerant. If you are like me, and BOTH of your parents are gluten intolerant and you are unlucky.. then it's 100% (I do believe I have two genes for this - some type of gene it only takes ONE of to have a reaction.) My DH though is NOT on the knees/elbows/buttocks and is not a classic representation. My wife doesn't have it but she does have immediate relatives that do and have related issues (she is carrying a gene for it I bet).

The reaction though is a different severity in my children. Of my 4 children:

1 -> 25% FAILURE to thrive - very severe form with classic presentation of DH (maybe even true celiac) - must be Gluten-free Casein-free - 4 YR OLD

1 -> 25% no Failure to thrive but ADHD from gluten - has classic presentation of DH rash - buttocks/knees/elbows - must be Gluten-free Casein-free - 7 1/2 YR OLD

1 -> 25% constipation only (but very young still and kept gluten-free most of his life ) VERY mild form - must be Gluten-free Casein-free - 2 1/2 YR OLD

1 -> 25% lack of energy (lethargy) and asthma from gluten - must be gluten-free (dairy seems to not affect him) - 6 YR OLD

I must be Gluten-free Casein-free and am very sensitive - lethargy, Asthma, minor DH rash (not classical), back pain, GERD. My children have a good mix of all my symptoms (except the back pain).

[Juliet]

At the Celiac conference in May Dr. Michelle Pietzak gave some very interesting information on the genetics of Celiac Disease which she and her colleagues will soon be publishing. It has to do with how the actual Celiac gene is made up and not just the "gene" itself and how this make up determines your risk.

As she explains it, there are two "arms" that make up the Celiac gene (DQ2 in particular, but also DQ8). She then compared these arms to twins, saying there are two types: identical and fraternal. If they are "fraternal" in nature, you are at a higher risk than the rest of the population, probably closer to that 10% mark that they throw out there about Celiac Disease running in families. But if they are "identical", than the risk goes up dramatically higher, something much closer to 30% or more. The other thing she said is that these "arms" that make up the gene can be handed down by either one parent or both. So, what may happen is both parents have the Celiac gene, but maybe they both have the "fraternal" type and haven't actually gotten sick. They then give a portion of their genes to their child so that the child has the identical type. Their child will then be at much higher risk than either of the parents. Now, please bare in mind, this is from memory so please don't quote me on exactly how this works; my memory's not what it used to be since I had kids I also got the impression that in her opinion, if you got the identical pair, you actually will almost certainly get it.

The lab she worked with that can identify this pairing is Prometheus. I don't know if this testing is available to everyone yet or just the test subjects. But I do think this explanation helps with why you see it in families only once in awhile and in others it seems like everyone has it. In my very uneducated opinion, too, I think it may also help explain why some people are sicker much faster than others. My son, for example, with hindsight being 20/20, exhibited signs from the day he was born practically and was literally starving to death before he got diagnosed. Whereas other people we know didn't get sick until much, much older.

[veggienft]

[veggienft]

http://i293.photobucket.com/albums/mm44/ve...t/Genetics2.webp

If anybody wants to tell me how to make the above jpg image appear, I'm all ears ........so to speak. So view it, click it, or paste it to your address bar.

It's a geometric representation of trait inheritance. Row 3 and column B, in light grey, are duplicates of other iterations so that parents have the same trait proportions as children.

Assume we're tracking the trait represented by a "1".

Recessive traits require two of the recessive genes in order for an offspring to express the trait. Dominant traits require only one of the genes to express the trait. Let's say the "1" gene represents the trait, and that it is mixed evenly through a population. If the trait is recessive, each offspring with two "1" genes expresses the trait. In this example 16 out of 64 offspring, or 25% of the population express the trait.

If the trait is dominant each offspring with at least one "1" gene expresses the trait. In this example 48 out of 64 people, or 75% of the population, express the trait.

Using the current count, roughly 92% of people with celiac disease have it because they have HLA-DQ2 leukocytes. The gene which produces DQ2 antibodies is recessive for the trait of intestinal celiac. In an evenly divided population, 25% would be prone to intestinal celiac disease.

But here's the rub. The HLA-DQ2 leukocyte has an additional function. It also produces non-celiac autoimmune disease. The gene which produces DQ2 is dominant for the trait of autoimmune disease. In an evenly divided population, 75% would be prone to autoimmune disease, including the 25% who are also prone to intestinal celiac.

Autoimmune diseases include multiple sclerosis, diabetes, schizophrenia, ALS, arthritis, antiphospholipid syndrome, autism, Adison's disease, macular degeneration.....

This non-celiac autoimmune expression is genetically classified as a half-dose gene effect. Half-dose and full-dose HLA-DQ2 leukocytes are actually different. The full-dose (celiac+autoimmune disease) leukocyte is commonly called HLA-DQ2.5, and the half-dose (autoimmune disease only) leukocyte is commonly called HLA-DQ2.2.

Using currently identifiable celiac genotypes, scientists estimate that roughly 1% of the American population have active intestinal celiac disease. But rougnly 1/3 of the population carries at least one celiac gene.That means 33% of the population can acquire celiac-related autoimmune disease. Roughly 1/3 of that 33%, or 11% of the population can acquire intestinal celiac disease ........at some time in their lives .......using currently identifiable celiac genotypes.

I am not a physician. Feel free to correct any errors.

[psawyer]

If anybody wants to tell me how to make the above jpg image appear, I'm all ears ........so to speak. So view it, click it, or paste it to your address bar.

The implementation of this forum does not allow embedded images in posts. You can post as many links as you want using the Open Original Shared LinkOpen Original Shared LinkOpen Original Shared Link

[mammajamma]

I can only speak for myself... but my mom has it, I have it, and I'm pretty sure my daughter has it too (I have 2 kids, my son tested negative with the blood and doesn't present any symptoms). My daughter's blood test was "inconclusive" and her upper endoscopy was negative... however, she has a whole list of symptoms. She's having the capsule endoscopy in a few days but I am pretty sure I'll have her go basically gluten-free no matter what the results. Then if she "cheats" and has something at a birthday party (she's only 9), that will be the "diagnosis" I need and then we'll be stricter. Good luck to you...

[AliB]

I am 99% certain my Mum had it - she was Type 1 Diabetic, anaemic all her life and had me followed by a stillborn followed by 10 miscarriages. I suspect it was inherited through her Mum (died of bone and breast cancer).

I am 90% convinced I have it (just waiting for a second set of tests to come back and to have a gene panel done), I am insulin-dependent diabetic, had weight problems and fatigue all my life and IBS for several years, plus yeast- based bacterial issues, leaky gut, etc.

Not sure if my husband does, but he has definite gluten issues and Arthritis and Fibromyalgia, and is better off it (he had quite a bit of gluten last week after nearly 3 months off it and his Fibro and brain fog and irritability came back with a vengeance!).

I believe my daughter has it (depression and anxiety, borderline bipolar, abdominal colic, etc.). Her eldest son (7) is just in the process of being tested for it (stomach and bowel issues) and I am convinced his younger brother also (5) should be (only in the 25th percentile for weight and height and has learning delay).

I suspect my son may also be Celiac or extremely gluten intolerant (ADD, sleep apnoea, brain fog).

Need I say more. Every 'expert' I read suggests a different ratio. In my 'expert' opinion I believe this to be far, far more common than anyone realises. I had read that 37% of the American population carries the genes, although 'they may not develop the disease'. Yeah, right. Fortune-tellers every one of them.

As our family clearly testifies, there are no hard-and-fast symptoms for the disease, and every family member can present totally differently to each other. The fact that they may not appear to have the disease at the moment does not negate the fact that they may carry the genes and go on to display the symptoms at a later date.

If anyone in your family has it, then it would be prudent to be tested. Unfortunately the tests are not definitive and can, and regularly do, register as false negatives. The biopsy is only looking for intestinal damage, but it is well-documented that there are many undiagnosed Celiacs out there who do not present with gut damage or intestinal issues at all.

If your Grandmother has it and you do then the chances of your Mum being clear is extremely remote. The IBS, like mine, would be a strong indicator. It wouldn't hurt her to be tested, but don't assume if the test is negative that she doesn't have it! Better to be safe on a gluten-free diet than risk being exposed to ailments far worse than Celiac Disease.

Gluten is a huge problem for a huge percentage of the population. What man has done to it is a big factor in the problem. It is far more complex now and harder for us to cope with. This is not a 'disease' in the strictest sense of the word. It is just a part of the food chain that a large percentage of the population would be better off without. What it does do is mean that those susceptible who are exposed to it on a regular basis run the risk of developing 'real' distressing, disabling and even death-dealing diseases. Following a 100% avoidance diet can protect us from that risk.

[taweavmo3]

As she explains it, there are two "arms" that make up the Celiac gene (DQ2 in particular, but also DQ8). She then compared these arms to twins, saying there are two types: identical and fraternal. If they are "fraternal" in nature, you are at a higher risk than the rest of the population, probably closer to that 10% mark that they throw out there about Celiac Disease running in families. But if they are "identical", than the risk goes up dramatically higher, something much closer to 30% or more. The other thing she said is that these "arms" that make up the gene can be handed down by either one parent or both. So, what may happen is both parents have the Celiac gene, but maybe they both have the "fraternal" type and haven't actually gotten sick. They then give a portion of their genes to their child so that the child has the identical type. Their child will then be at much higher risk than either of the parents. Now, please bare in mind, this is from memory so please don't quote me on exactly how this works; my memory's not what it used to be since I had kids I also got the impression that in her opinion, if you got the identical pair, you actually will almost certainly get it.

This, and the post from Veggienfit definately explains what happened in my family. Now I'm really itching to get us all gene tested (I had to read the genetics post several times, lol, my genetics professor would not be happy with me, but it has been 10 years!) to see what we have. I have not been tested, but now that I've been gluten-free for a year, I strongly react. Here's how genetics have played out in my four kids:

DD1: Dx'd at age 3 after FTT for nearly 2 years. She was really sick.

DS1: Healthy until he presented with Psoriasis at age 3, now he reacts with GI sx's to gluten (and casein)

DS2: Healthy, mild speech delay, only reacts with hyperactivity to gluten/casein

DD2: Reflux as an infant (I was not 100% gluten-free then and was bf) but now Gluten-free Casein-free for all eternity, lol.

My husband has mild symptoms when he eats gluten after being gluten-free for a bit. So our poor kids probably didn't stand a chance! I love this stuff, it's all so interesting. Just goes to show that you never really know how things are going to play out in your children, but I would at least have them gluten free until they pass all major milestones. Those early years are very hard to make up, my dd is still in speech therapy after 3 years.

[taweavmo3]

OH, and forgot to add....all four of my kids never tolerated breast milk!!! Of course, looking back now, they were all reacting to gluten. But at the time it made me feel incredibly guilty, b/c all of the books say that breastmilk is always tolerated by babies. Once I put them on formula, they thrived. So I do believe they all have different degrees of gluten intolerance and Celiac.

Okay, now I'm done. You probably didn't want all this info in response to your question, lol!!!

[peepsmama]

Hi!

I just wanted to pop in here. I have a ds age 5 1/2 who was recently dxd with celiac based on his symptoms (both neuro and gastro) from infancy, a total turnaround at age 4 with the intro of a gluten-free diet and a recent genetic test. We have a 3 yr old and almost two year old as well. The genetic screen showed that dxd son had one celiac gene and one gluten intolerance gene and the report said that he received one from me and one from my husband. We are in the process of genetically screening dh and middle son. My question is, does this mean all our kids will be gluten intolerant? Your post alarms me. We have been doing the diet for the whole family. I am doing great on it and so is ds age 5. Middle boy has been eating occasional gluten and recently had a lot at a couple of back to back parties (the only time he gets it). He developed an ear infection within four days of initial gluten-fest and two days after last known ingestion (while at my parents). Middle boy has never had gastro issues and we always thought he was fine.

I really think there is a strong correlation there--

[munkee41182]

Here's my family....

Gma has it

Aunt has it (although self diagnosed after her daughter was diagnosed)

Cousin has it

I have it (and was tested due to heartburn/constipation and family history)

And there is another cousin who is being tested for it.

This is all on my father's side of the family...Just have you mom checked out to see if she has it. Can't hurt and just have her doc keep it in his/her notes incase there are any issues with her health in the future.