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

Can You Be A Celiac With No Family History?

emcmaster

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted

Well yes and no. You had to get the genes from your biologial parents but you could be the first person to manifest the disease.

jerseyangel Proficient
jerseyangel
Posted

To add to what Vincent said, there could be family members in the past who had it, but attributed the symptoms to something else. I believe that's the case in my family. While I am the first diagnosed Celiac, there are stomach problems and autoimmune diseases on my mom's side.

Guest nini
Guest nini
Posted

Since Celiac has mistakenly been believed to be extremely rare, and is just now getting the recognition that it needs, many people went their entire lives undiagnosed... maybe had subtle symptoms or attributed their symptoms to something else entirely... So while you are the first in your family to be diagnosed (as am I) the likelihood that someone else had it is almost a sure bet. In my family they always made comments that "oh you just have the family stomach" they just accept that the symptoms are normal in the family and therefore don't even look for an answer. But I do not believe that it just started with me.

Rikki Tikki Explorer
Rikki Tikki
Posted

Just to add to that I believe with better awareness more people will be diagnosed with the disease. I was diagnosed about 3 years ago, my mom and brother just recently

mamatide Enthusiast
mamatide
Posted
My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

Well, my DD (just turned 5) is Celiac and the more I read about it (the first I ever even heard of Celiac Disease was February/March of this year), the more I think I have it (and have most of my life). The more my Mother reads about it, the more SHE think she has it (and had it all her life). And the more she reads about it the more she thinks HER mother (now deceased) had it...

so what's been routinely written off as a bad stomach may actually have more substantial consequences than we thought.

I've booked myself an appt with my GP for next week to get tested, and my Mother's doing the same.

Interestingly, my MIL says that she and her mother were always notorious for their loud stomachs.

So I'd say there probably is/was something in your family history... just never diagnosed.

JMO

tarnalberry Community Regular
tarnalberry
Posted

1. 30% of the population has at least one gene, but only 1% of the population has active celiac disease, so it's totally possible for it to be genetically in your family tree, but no one to have actually had it in memory, even if diagnosis was perfect.

2. only 3% or so of celiacs are diagnosed, so there's a good chance that someone else in the family may have it but be undiagnosed.

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted
My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

My hubbie was dx with celiac disease nearly 2 years ago.No-one else in his family has it.

Not one of his 5 siblings has any symptoms,and no-one with even an auto-immune disease!! :blink:

Maybe it skipped a couple of generations before it singled out my hubbie :unsure:

prinsessa Contributor
prinsessa
Posted

No one in my family has ever been diagnosed as having Celiac or gluten intolerance, but quite a few people have had "stomach problems" their whole lives. My mom gets bloated after eating too much bread and has occational "IBS symptoms". And she said her mom had stomach problems her whole life. So I'm sure people in my family had it, they just never knew.

emcmaster Collaborator
emcmaster
Posted
  • Author

Thanks everyone!

debmidge Rising Star
debmidge
Posted

The issue isn't that no one else has celiac in the family, but that you have it and there's a greater possibility for your family now to develop it themselves (believe it's 1 in 22 chance for family members). My husband so far is only one with celiac, but I am sure his father (deceased) had it unknowingly and his younger sister has it (is in denial about symptoms).

drannesimmons Newbie
drannesimmons
Posted
The issue isn't that no one else has celiac in the family, but that you have it and there's a greater possibility for your family now to develop it themselves (believe it's 1 in 22 chance for family members). My husband so far is only one with celiac, but I am sure his father (deceased) had it unknowingly and his younger sister has it (is in denial about symptoms).

I believe the current statistics say that 1 in 10 immediate family members are likely to have celiac too. This is the statistic I keep encountering but I believe it is for all diagnosed celiacs in recent years. I would be interested in the statistical breakdown of the likelihood of immediate relatives by ethnicity. Celiac sprue is much more common in people of Celtic heritage.

tarnalberry Community Regular
tarnalberry
Posted
I believe the current statistics say that 1 in 10 immediate family members are likely to have celiac too. This is the statistic I keep encountering but I believe it is for all diagnosed celiacs in recent years. I would be interested in the statistical breakdown of the likelihood of immediate relatives by ethnicity. Celiac sprue is much more common in people of Celtic heritage.

I have not seen the 1 in 10 number in a peer reviewed, published study, but I have seen the 1 in 22 number for first degree relatives in such a study. Do you have a reference for the 1 in 10 number?

chrissy Collaborator
chrissy
Posted

the stats that i have seen said 1 in 10 of first degree relatives and 1 in 30 of second degree relatives----but i can't tell you where i read it.

lightningfoot speakin words Contributor
lightningfoot speakin words
Posted

I am the only one in my fam. with celiac too! everyone got tested, even my grandparents. aunts, uncles, everyone and I am still the only one! I wonder how I got it. :lol: Kinda random but hey, i thought maybe, just maybe it would help to know that you arent the only one.

floridanative Community Regular
floridanative
Posted

I think way more people have it than even the best Celiac docs think and in ten years it won't be a big deal to eat out and buy gluten-free food because so many people will have it. Then we'll have better gluten-free food available and lower prices. And then we'll all be whining that we are that special anymore because it will seem like everyone has it! LOL!

  • 9 years later...
SLLRunner Enthusiast
SLLRunner
Posted
On 6/8/2006 at 4:54 PM, floridanative said:

I think way more people have it than even the best Celiac docs think and in ten years it won't be a big deal to eat out and buy gluten-free food because so many people will have it. Then we'll have better gluten-free food available and lower prices. And then we'll all be whining that we are that special anymore because it will seem like everyone has it! LOL!

This is a really old discussion, but his particular post jumped out at me since it was written in 2006.  And, here it is 10 years later, and this man with one post hit the nail on the head. 

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    3. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    4. Lkg5
      - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

      Thank’s for addressing the issue of mushrooms. I was under the impression that only wild mushrooms were gluten-free. Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative. In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken. Major mistake!
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      my IGG is 815 IGA 203 but tTG-Iga is <0.4!!!!!!!!!!!!! oh my god- 13 days of agony and the test is negative? I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has I am...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.