• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
emcmaster

Can You Be A Celiac With No Family History?

Rate this topic

Recommended Posts

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?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Guest nini

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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:

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Thanks everyone!

Share this post


Link to post
Share on other sites


Ads by Google:


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).

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites
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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
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. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,930
    • Total Posts
      943,576
  • Member Statistics

    • Total Members
      67,219
    • Most Online
      3,093

    Newest Member
    Bentleyep
    Joined
  • Popular Now

  • Topics

  • Posts

    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • Holy cow! You people are all angels! I have been suffering unbearably with these hot, itchy, and painful bumps on my scalp for a year now. Two doctors had no idea what it was, so I was sent to see a "dermatologist." To my utter shock, he told me I WAS DIRTY! HE TOLD ME TO WASH MY HAIR EVERY DAY with a shampoo called Nizoral, that it would take the itch away. He also prescribed a Vaseline based salve with a steroid in it. Guess what? It did nothing nor did the shampoo, and the more I washed my hair, the worse it gets. It's like torture, and I just can't stop scratching holes into my scalp. Then they scab over, then itch again. I was almost ready to shave my head, until I found this forum. I knew nothing about celiac disease, sensitivity to gluten... I knew nothing. Just so happened that my daughter found a paper talking about celiac during her visit to her GI yesterday. She brought it home for me, and demanded that I read it!  WHAM- a light come on, and I said to her... That IS what I have. I am going to my GP tomorrow to demand that I be tested for ciliac. I am rather terrified, as I am already a type 1 diabetic and have been on insulin for 52 years! I was blaming my diabetes the whole time. I have had a lower left leg amputation, and the last thing I need is to start getting this ungodly rash on my stump!!! Thank you everyone for all of the useful information you have provided in this blog. Maybe I'm not going to die after all! 😉
    • The University of Chicago recommends re-testing 3 to six months after going gluten free and then annually.  Most GIs wisely wait because although you can theoretically heal that fast, it takes TIME to master the gluten free diet.  It can take up to a year or longer for antibodies to come down.  As someone who has more than one autoimmune issue like myself (and only a DGP IgA that has ever been elevated), I think that impacts healing  and how quickly antibodies come down.   My recent endoscopy (5 years post diagnosis) revealed a healed small intestine, yet my DGP IgA was still at 80 (which was over 200 last April when I was somehow exposed to gluten).   Hang in there!  Wait six more months to get retested.  Look for other signs of healing (like anemia resolving, improve gut issues).  
    • Sounds great, one of my dreams is to open a grain free/gluten free food truck.......stone and mortar places would not do well here, but a mobile one able to cater....LOL dream I know, fundraiser has flopped and been running for a year. Hell I had the quotes up, the whole sale contracts setup, the business model and plan. I even tried to get loans, and business partners.....all flopped.
  • Upcoming Events