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

How Many Of Your Children Have Celiac?


Sillyyakdidi

Recommended Posts

Sillyyakdidi Apprentice

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!!!


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

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

chrissy Collaborator

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.

Electra Enthusiast

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!!

jayhawkmom Enthusiast

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.

nikki-uk Enthusiast

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:

FeedIndy Contributor

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!


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

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.

wolfie Enthusiast

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.

2Boys4Me Enthusiast

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.

Sillyyakdidi Apprentice
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

zachsmom Enthusiast

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.

Nikki2003 Contributor
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.

Nic Collaborator

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

Viola 1 Rookie

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.

darlindeb25 Collaborator

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?

jen2be2 Explorer

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.

jenshizzle Newbie

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!

Sillyyakdidi Apprentice
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

Sillyyakdidi Apprentice

sorry i acidentally posted twice

prinsessa Contributor

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.

stef-the-kicking-cuty Enthusiast

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

Archived

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

  • 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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.