Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!!!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

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.)

Link to comment
Share on other sites
nutralady2001 Newbie

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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".

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
×
×
  • Create New...