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 Do You Know How Long You'Ve Had It?


dube

Recommended Posts

dube Contributor

I'm new to the site and will be going to the doctor this week to discuss my problems. How does a person know how long they have had celiac disease? Are people born with it? Or does certain things make it develope?

I have had problems as a young adult and was told it was IBS...nothing severe. The past several years, more issues have come up and I eventually had my gallbladder out since it was full of stones. I thought maybe that was my issue, now I'm not so sure....I know some people have bowel problems especially after gallbladder surgery, so maybe I'm looking too much into this.


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



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

You most certainly can be born with it, I'm not too sure about developing it later in life though. I think it's more of just a question of how long it takes your body to start responding with some noticeable symptoms. Personally I exhibited symptoms of it at least as far back as grade 4ish.

lizard00 Enthusiast

Yes, you can be diagnosed at a very young age, as in a year or sometimes less, but it can also be developed later in life. My doctor and I believe that I developed it after my son was born, as the stress of pregnancy was the trigger for me.

Surgeries, illnesses, anything that is stressful and traumatic can be the trigger and cause celiac to develop at any point.

Roda Rising Star

If I think about it I probably had subtle symptoms of celiac at least as far back as when I was diagnosed with the hashimotos in 2000. The symptoms that started me going to the doctor was when my youngest son was 14 months old (he is 5 now). He had so many food issues when he was a baby that I eliminated so much from my diet to keep him well. After I started reintroducing stuff is when I started my major symptoms. The pregnancy probably triggered it into really flaring up. However I was a very constipated child up until around 5. As a teenager an in my 20's, I had a tendency for constipation and bloating off and on and just would eat more fiber.

Bobbijo6681 Apprentice

I believe that my "trigger" was having my apendix removed. 6 weeks after that surgery I had my gallbladder removed, but am now thinking that maybe my gallbladder was fine and it was the Celiac causing all of my GI issues. Before having my gallbladder out I had chronic D and severe nausea and pain, however the D never went away after the gallbladder came out but the nausea and pain subsided. The only reason they took out my gallbladder was because on the fuction test it showed that it only functioned at like 12% which was about half of what they consider "normal" and they could find no other reason for my problems. That was almost 4 years ago. I was only diagnosed Celiac about 2 months ago. I had the chronic D everyday for all those years, and thought that it was normal after having my gallbladder out, and NO ONE ever told me that it wasn't supposed to be that way. Everytime I would see a dr about anything they always ask about V or D and I would always say "yep had D since gallbladder came out" and they never questioned it more than that. UNTIL I went in because I had a terrible cold and my family dr wasn't in so I saw another DR in her practice. He was not worried about the cold at all, but was very concerned about the D....I remember thinking "Really after almost 4 years someone is finally worried about it"

Sorry to be so long winded, but just thought I would share my gallbladder issue/Story.

Good Luck and I hope the diet helps!!!

StacyA Enthusiast

You most certainly can be born with it, I'm not too sure about developing it later in life though. I think it's more of just a question of how long it takes your body to start responding with some noticeable symptoms. Personally I exhibited symptoms of it at least as far back as grade 4ish.

Current thought is that celiac disease can be present from childhood or triggered later in life - more commonly in a person's 30s or 40s - from an infection, surgery, childbirth, etc.

There are other diseases that are inherited but often don't manifest until later in life, such as Multiple Sclerosis and schizophrenia.

My celiac's didn't manifest until I was 40. I had MSG sensitivity before then, but my MSG sensitivity is much worse now.

momxyz Contributor

I dont have an official diagnosis, "just" a response to the diet. I think the onset of menopause was the trigger for me... and would be curious if others have had this same experience.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

It can be triggered at any time - before/during birth, in infancy, childhood, adolescence, adulthood.

There is no good way to know how long you've had it - just go gluten free so the immune reaction doesn't continue. (You can certainly take a good guess, looking for stressors (including physical ones) that preceded symptoms, but there's no guarantee.)

nutralady2001 Newbie

I'm positive I have had it from childhood, undiagnosed then mis-diagnosed as "mucous colitis" and "IBS "............yeah right !

kayo Explorer

Just like any other autoimmune illness (arthritis, type 1 diabetes, etc.) you'd have the genetic markers from birth. Often there's a triggering event that kicks the illness 'on'. Some folks can have the genes but never develop the disease or any symptoms. Women tend to have more triggering events than men: menstruation, childbirth, menopause. Hence the numbers of autoimmune illness is greater for women than men.

Now you will see on this site that there are two classic genes associated with celiac, often referred to as 2 and 8, recognized in the US. I don't have either gene but I have RA and Sjogrens. The presence of one autoimmune illness increases the chances of developing another. They tend to cluster in families. Other people in my family have RA and type 1 diabetes. There's a good chance they could have celiac as well.

There has been some research that identifies other genes to celiac but so far I haven't found which genes those are, just that they have been discovered.

Mskedi Newbie

I think I've had mild symptoms my whole life (gut-aches after eating, anemia, and insomnia).

In the last six years I started having noticeable GI problems, but it was such a gradual development, I just chalked it up to getting older (I feel kind of stupid about that now). Then when I started working on my MS while teaching full time, everything got so out of control I couldn't function. I believe that the stress I put on myself was my trigger, but, to be honest, I'm glad that happened, because if it hadn't I'd still have these gradually worsening symptoms that I'd be brushing off.

Now I feel better than I have... ever. I've never gotten such solid sleep, and I can't remember a time when eating wasn't followed by at least some mild pain. I feel so good now, in fact, that it's hard to believe just how crappy I felt before. It's a good thing I keep a diary!

nutralady2001 Newbie

I'm positive I have had it since I was a child and misdiagnosed until I was around 58 as first "mucous colitis" then "IBS".

Brookesmom Newbie

I believe mine expressed itself (noticeably, anyways) after my last pregnancy and the birth, being a c-section surgery, and moving out of state when he was just turning one year old, while the whole family had the flu. My thyroid and adrenals crashed pretty hard too. yikes. That was 3 years ago.

summerteeth Enthusiast

I'm positive I have had it from childhood, undiagnosed then mis-diagnosed as "mucous colitis" and "IBS "............yeah right !

Same here... I heard "IBS" constantly, but I finally saw a doctor who thought a bit outside of the box.

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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
×
×
  • 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.