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

Should I Still Be Sick After 2 Years ?


rlemmon

Recommended Posts

rlemmon Apprentice

Hi. I was (sort of) diagnosed with celiac two years ago. I delt with one doc for eleven months. By that time i was in some much pain and misery all i could think about was jumping off of a building. The second doc said he was 99% sure it was celiac. I stopped eating gluten that day.

Things slowly got better since then. I slowly began to fell better and regained my sanity. The thing is I still get sick 75 % of the time after I eat. Its not nearly as bad as it was before but it still hurts and I'm sick of it. :(

I have tried eating smaller portions and different things but it doesn't help. I can't begin to tell you how intrusive this is with day to day living. I am thinking that since it took a year to get diagnosed I may have done irreparable damage to my intestines. Any help would be greatly appreciated.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Have you tried the elimination diet?

Eliminate all foods except a few (rice, chicken, apple/pear and a veggie). After 3 weeks reintroduce one thing a week and make sure to keep a food journal to note any possible reactions. They can take anywhere from a few hours to couple days.

I don't really have any ideas but I invite you over to the OMG thread. It's turned into a thread for those that haven't had symptoms resolved going gluten free.

CarlaB Enthusiast

A rotation diet is a good idea. If it's a food sensitivity causing your ongoing problems, you will pick it up.

For some of us, gluten intolerance is only once piece of the puzzle. Gluten makes me sick, and I'm doing a lot better off it, yet I'm still sick. I'm in the process of finding out what else is wrong. In some cases, a person has celiac, they get off gluten and get better. In other cases, there are other problems that go along with it.

As Andrea has said, we talk a lot about related issues on the OMG thread. DON'T try to read the whole thread!!! :o Just jump in and introduce yourself. Some of us are being tested for Lyme Disease, some for Eos, some are having heavy metal toxicity ... you can get ideas of other avenues to research.

marciab Enthusiast

I would still be 100 % sick if I had not gone on the elimination diet too. I react to soy, dairy, corn and eggs. And anything fried.

It takes time to heal, but if you are still having symptoms, chances are you are sensitive to one of the other foods listed above and won't feel better until those are gone.

In order to fully take advantage of the elimination diet, you have to get your digestive system to calm down so that you can really tell what food is upsetting it.

Papaya, mango and pineapples contain natural digestive enzymes and are a good thing to add right away.

I still have problems from time to time, but I am also adding in new foods regularly now.

Hope this helps ... marcia

Lisa Mentor

I would suggest that you keep a food diary. Just get a notebook with loose leaf paper and write down every thing that you eat. Document how you feel after eating the things that you wrote down and the time of reaction. There may be a pattern here that you may not be aware of.

I hope that you feel better soon and feel always free to ask here.

eleep Enthusiast

Edit: I just reread your post and I think my suggestion is off-track!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.