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

Still Living In Fear


jasonD2

Recommended Posts

jasonD2 Experienced

I've taken all the necessary steps to change my diet & lifestyle but I still fear that all of my digestion issues & food sensitivities will lead to an autoimmune disease or something worse. Just to recap:

- Contracted Giardia in 02; was on a 5 month course of antibiotics prior

- Developed severe/permanent lactose/dairy intolerance

- Tested neg for celiac in 02 (blood)

- Developed IBS and food sensitivities (02-present)

- Tested slightly positive for stool anti-gliadin in 07, and tested positive for 1 of 2 celiac genes

- Gut was slightly leaky in 07 & had mild overgrowth, mild candida and colonic inflammation

- Tested severely allergic to eggs, dairy, soy, mustard, ginger

- cut out all allergic foods and avoid gluten & dairy & soy & eggs

- take probiotics, anti candida formula and Biogest enzymes

Im really not sure what else I can do. im sure im still eating foods that im sensitive to, but I refuse to have a bland boring diet. if i cut out anything else i will loose a great deal of weight...im already underweight as it is. however, as i said im also very worried about developing an autoimmune disease. id appreciate feedback


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Hi Jason,

Celiac disease is the only autoimmune disorder where the cause is KNOWN. Pretty crazy, huh? In fact, there are lots of disorders that are only labeled as being "autoimmune" because they go into remission when you take steroids. Food might play a role... some people (like Dr. Fasano) think celiac disease is the root cause of autoimmune disorders in general. BUT... that still doesn't tell you why two people can eat exactly the same thing, yet one person starts making auto-antibodies in response to gluten and the other person does not. Avoid the foods that make you feel bad, but IMO... and I know this is easier said than done... you have to let the rest go. Researchers have lots of ideas about how autoimmune disorders get started... food, viruses, bacteria, leaky gut, microchimerism... but they're still just ideas. Doctors are only just beginning to understand how to prevent, diagnose, and treat autoimmune disorders.

Chronic illness sucks... but it CAN get easier to live with. I know how hard it is to feel like you have no control over your own body :( Have you tried things to cope like counseling or writing in a journal?

jasonD2 Experienced

Thanks for the kind words. Haven't tried counseling...for me the best therapy is to just live my life, work hard and do the things i enjoy and not think about all that other crap :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,569
    • Most Online (within 30 mins)
      7,748

    lizz Z
    Newest Member
    lizz Z
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.