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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.