Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Are The Odds?

ptkds

By ptkds
in Coping with Celiac Disease

Recommended Posts

ptkds Community Regular
ptkds
Posted

Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


JennyC Enthusiast
JennyC
Posted

I thought I read that those with a first degree relative with celiac disease have a 20% chance of having the disease. Either way, I don't think anyone would claim to have the genetics totally worked out. What is known is that there are multiple genes involved, and I think they are all recessive. Each of your children has the same likelihood of developing Celiac disease. However, the chance that all of them will have it is pretty small, but nonetheless very possible.

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

I don't think there can be definite percentages since it is so hard to diagnose people in the first place. My Mother has Celiacs, I have it, and my Brother does, as well. We are her only children.

cruelshoes Enthusiast
cruelshoes
Posted

I know a family from church that has 5 kids. Mom has it, and all 5 kids have it - confirmed by biopsy.

If I think back to my college statistics class, the chance for each relative of a celiac would have the same risk of having it (is that a combination or a permutation - can't remember). So the chance would not increase or decrease with any subsequent family member diagnosis.

There is also the option of the genetic test for your DH. If he does not possess the genes for celiac, his chance of having it would be much lower.

ravenwoodglass Mentor
ravenwoodglass
Posted

Well..... I am the celiac in my house who did not show up on blood work and I am the most damaged and the first one diagnosed, it only took 40 years with the last 15 being very sick. LOL After blood testing we discovered that both kids and DH were positive. One of the reasons he agreed to test was because since the kids show up on blood tests and he is the natural father of one of them that he might also carry one of the genes. I am glad he was tested he did not have the usual symptoms and was quite surprised when a number of what he thought we not gluten related problems, or stuff he thought was normal like fatigue and gas, cleared up.

gfpaperdoll Rookie
gfpaperdoll
Posted

Celiac is more common that you can ever imagine. Read some of Dr Fine's statistics & there are some of us that think that is even understated.

In my family it has skipped no one, although they all have their heads stuck in the sand & refuse to acknowledge it. & among my friends there are a lot that have it. Just the other day at work I was talking to a lady (54) & she said her daughter was sick (about 18) that she had spells of Diarrhea & was so sick she was in bed, she has had this off & on for 4 years . When I told her about celiac a light bulb jsut went on in her head, her mother & grandmother had the same thing with the stomach, the diarrhea etc & her mother died of stomach cancer. Of couse she also has bouts of unexplained diarrhea & she could never figure out what it was <_< When she told her ex about celiac (the daughter lives with him) he said that he knew about it but did not think that she had it because she did not have diarrhea all the time. what a nerd!!! The mother was a little outraged that he had not mentioned this to her & said what would it hurt to try the diet, or get tested - I gave her the info...

I think that your kids are lucky to find out that they have a problem with gluten, better than some kids where the parent is gluten-free & still feeding the kids gluten, I have no idea how someone could do this when they know how poisonous it is to your body. But the medical community & the celiac community & the general population - heck almost everybody thinks that is perfectly fine to eat gluten until the villi are damaged, that is if you are not dead from cancer or something else first.

I do hope that you have a gluten free house for your kids, it is just so much easier & probably both you & your husband have it. You could get the gene tests from Enterolab.com if you want to know the whole picture.

amberleigh Contributor
amberleigh
Posted

I'm new to "celiac-land" and can hardly remember my biology classes from college, but I think if it were recessive, your husband would have to have it (or at least be a "carrier" for it), right? Can you be a carrier of this disease?

Anyway, does anyone know how much environmental factors play into this? I find it odd that I had no symptoms for 22 years of my life, had one major episode during a time of high stress, lived relatively symptom-free for another 6 years, went through my 2nd pregnancy and now am dx'd with celiac disease.

And neither of my parents have been tested or dx'd with celiac disease...they do not have any symptoms.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

It's not a simple recessive/dominant thing with celiac genes, you inherit bits and pieces from both parents, and it's possible that neither parent has the complete set and still a child ends up with celiac genes. It's also possible to have the celiac genes but to never get sick if the disease isn't triggered. Celiac can be triggered by things like stress, or pregnancy, or an infection, surgery.

It would be wise to have all first degree relatives tested for the antibodies, symptoms or not. It's possible to have celiac with no symptoms.

Pauliina

Janeti Apprentice
Janeti
Posted
Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

I know what you mean. I have 2 children, ages 20 & 22. My son(22) has had symptoms for 4 years now, along with a major personality change. Within the last 2 years has developed DH. At one point I had taken him to the ER, it was all over his neck and chest, and they had no idea what it was. He hates the way he feels, and just this weekend I went to a wonderful website that shows pictures of DH, he hates to think he has celiacs too. He leaves back for college next month, and it's going to be hard, as I am learning about all foods myself. My daughter is constantly tired, and has joint pains. She doesn't even want to listen to me. I know that she has it also. I think the chances of our kids inheriting this gene is a great one.

gfpaperdoll Rookie
gfpaperdoll
Posted

If you have two celiac or gluten intolerance genes (to be politically correct here :D ) you pass one to each of your children. If you only have one gene you have a 50% chance that each child will get that gene. For people that tests for the genes & do not go thru Enterolab.com where they test for the gluten intolerance genes also, & you think you only have say one DQ8 gene, you might in fact have a DQ8 gene in addition to a DQ1 or a DQ3 etc etc.

If a person has two of the genes then that means that they got one from each parent

sfm Apprentice
sfm
Posted
Since my youngest dd was diagnosed w/ celiac disease, dh and I have been thinking alot about this. What are the odds that 3 of our 4 kids has celiac disease? I read that it was like a 10% chance of 1 child having it, so how did 3 of my kids get it, and at such an early age?? My dh was tested, but it was negative. Although sometimes I wonder if the tests were wrong. But he has a hard time doing the gluten-free diet because of work. So he really can't do a trial diet to see how he feels.

I was just wondering because I really think he had celiac disease, but I can't convince him of it!!

Thanks!

ptkds

Did your husband have the genetic testing done? Because that's the way it is passed on, whether he has active celiac or not.

sfm Apprentice
sfm
Posted
I think that your kids are lucky to find out that they have a problem with gluten, better than some kids where the parent is gluten-free & still feeding the kids gluten, I have no idea how someone could do this when they know how poisonous it is to your body. But the medical community & the celiac community & the general population - heck almost everybody thinks that is perfectly fine to eat gluten until the villi are damaged, that is if you are not dead from cancer or something else first.

I do hope that you have a gluten free house for your kids, it is just so much easier & probably both you & your husband have it. You could get the gene tests from Enterolab.com if you want to know the whole picture.

Please don't judge how parents handle their own gluten intolerance. My children don't eat a lot of gluten - but both have been tested, negative. Gluten may be poison to my body, but I don't see the need to place the same restrictions on them as I have to live by.

I will have them retested regularly, and if it does become necessary, of course I would put them on a gluten free diet.

kbtoyssni Contributor
kbtoyssni
Posted

It's possible your husband has the celiac gene but doesn't have celiac disease himself. If he was tested via blood test or biopsy that could easily be the case.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    4. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
    5. Jmartes71
      - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      Gluten tester

      By Jmartes71 · Posted

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.