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 Family Members With Celiac?


chrissy

Recommended Posts

chrissy Collaborator

how many family members in your family have celiac. my identical twin 14 year old girls have it, and my 10 year old daughter also. as far as we know, no one on either side of dh's or my family have it.

christine


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

My Mother and Brother both have Celiac Disease, too.

lovegrov Collaborator

My father and an aunt on my mother's side. All other first-degree relatives tested and none have it.

richard

Rusla Enthusiast

The only other person brave enough to have the blood test in my family is my sister and that test is negative. The brothers are too chicken.

2Boys4Me Enthusiast

My youngest son has Celiac. My husband, older son and I have been tested. My Mom was tested. We four are negative. No one else has been tested. I imagine it's because they have no symptoms, and I haven't really reminded them (with the exception of my sister) that Ty didn't have any symptoms either. In fact, other than my Mom & sister, none of our extended family have even asked if it is genetic or hereditary or what.

DonnaD Apprentice

In My family:

Daughter: DX Coeliac

Me: Gluten sensitive - Enterolabs Dx

Father of DX daughter: Alopecia, GI symptoms. blood tests (Ema only I think) Neg (falsly I think)

Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

Sister 2: Younger but same symptom at same age as me and Sis 1. gluten-free for 3 weeks feeling better.

Mother: Thin as a rake, rheumatoid A. Milk intolerant. oestoporosis. won't test.

Father: Motor neuron D. died. had lots of fractures and gastric issues.

Also various aunts and cousins on both sides of my family either really skinny or really overweight with GI problems. We are English/some Irish & french way back.

Carriefaith Enthusiast

My grandmother has celiac disease and I suspect that my aunt also has celiac disease. I think my mom may be gluten intolerant since she has tested negative for celiac disease.


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

I am the only one "officially" diagnosed, but I swear my sister has it also.

I actually finally talked her into going for the bloodtest, and it came back negative. I can't believe the GI didn't want to pursue it further though. She has everything the same as I do except she has the big C instead of the big D.

I believe it is on my mom's side extensively. Both her sisters died of gastro problems and were basically skeletons when they died (also had severe osteoporosis). My grandmother has always had gastro issues.

I have had the girls checked but not the boys yet. Both girls tested negative for celiac but I swear Rhiannon has it.

Karen

luvs2eat Collaborator

I have it and my middle daughter of 3 has it. I'm fairly certain my sister and possibly my brother have it but neither will be tested!!

ianm Apprentice

My dad and brother have the same symptoms that I did but don't seem to interested in changing.

Guest Viola

I have it and our oldest daughter has it. I suspect my mom has it as well, but will likely never be tested.

i canary Rookie

I'm the only dx one. I have some cousins that are sick all the time like me, but they will not get tested. My mother said that her father could only eat milk and cornmeal - everything else made him sick. He died when I was a baby, all his photos make him look like a small walking skelton. All that to say I suspect that he had celiac disease.

Guest Rad

My three sisters have had problems all their lives with dermatitis. Tried to tell them that new research regarding this skin disorder relates it to gluten intolerance. They did want to hear this.

My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Had a great grandmother with osteoporsis. And an aunt that died of colon cancer.

Have a son that's been told he has Irritible Bowel. After reading this Board, recently sent him a letter highly recommending he get tested for C/D.

Dianna

kathy1 Contributor

My mother-in-law was DX a few years ago. My husb and son just DX recently. My husb's 3 siblings were tested with negative results.My brother-in-laws autistic son was tested negative also.

KaitiUSA Enthusiast

I am the only official one diagnosed but we think many people in the family have it. They just won't get tested but alot have the same symptoms I did!!!

Moongirl Community Regular

My mother and I both have it! Sister tested negative for it...

However I think a few of my aunts on my mothers side have it as well.....

Canadian Karen Community Regular
My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Dianna

Dianna,

That is tragic. If only celiac disease was more well known back then......

Hugs.

Karen

2Boys4Me Enthusiast
Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

What do you mean by "hyper floaters"? Do you mean something that looks like transluscent grey amoeba-like thingys that float around your eyes? And when you look quickly in another direction by moving only your eyes, they follow?

Sorry for the weird description, that's the only way I can describe it.

redheadheather Explorer

Let's see... My Grandmother had is as does my mother and my 6 yr old son. DH's Grandmother had it and I suspect his mother has it, but she keeps *forgetting* to be tested. DH will be tested next Tuesday and hopefully DS #2 will be tested after that (he's almost 5). I had a blood test which came out negative as did my sister and her children.

codetalker Contributor

As far as I know, I am the only one with celiac disease. That includes distant relatives as well.

Now that I think about it, maybe I was adopted.

  • 3 weeks later...
Chap Newbie

There seems to be a lot of emphasis on "ethnic groups", such as irish or European descent in regards to Celiac Disease. I'm a bit new at this (three week into my research, and awaiting test results). But from my readings so far, the newer research materials indicate that older studies may be flawed. What I'm getting is that newer research shows that Celiac Disease is an "equal opportunity" disease - no racism involved, so to speak. Personally, I think that a lot of poor people in the U.S. (poor Whites, Hispanics, African Americans, etc.) die without ever knowing that they have the disease, partly due to lack of access to good medical care, and partly due to lack of education in regards to health care. I live in California, and very few doctors take the state medical insurance (Medi-Cal) due to the low reinbursement fees. A surgeon friend of mine performed an operation on a Medi-Cal patient, and after all of his overhead, etc. was paid, he made 85 cents for performing the procedure. True story, even he got a laugh out of it. I've also had dealings with the "low income" clinics who take Medi-Cal (state insurance), and they want those patients in and out, so that they can see as many as possible in the shortest period of time in order to make a profit. Do you think those type of doctors are going to take the time to diagnose such complicated illnesses as Celiac Disease, Lupus, or some of the other rare diseases? Sadly, no. There are some illnesses such as Sickle Cell Anemia that are specific to certain ethic groups, but I don't think Celiac has a preference. Just my opinion so far, after limited research/reading about such immune system disorders as Celiacs and Lupus.

Chap

Firegirl43 Contributor

Far as I know, Just little ol me.

kevsmom Contributor

My brother and I both have it. My late father had an iliostomy for ulcerative colitis over 20 years ago. I wonder if he had been tested for celiac disease, the results would have been positive?

zakismom Newbie

I find it sad that none of my relatives- including my parents-WILL NOT get tested even though they all witnessed how sick I was and how healthy I am now. I'm sure aout half of them have it but, they keep their heads in the sand :(

Kristen2Denise Apprentice

My younger sister is gluten intolerant but wasn't diagnosed with celiac and my older sister was tested and is negative, my mom is negative as well. We don't know about my dad's family since we aren't in touch with any of them.

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
      5

      Son's legs shaking

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

  • 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
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • 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!
×
×
  • 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.