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:
    Support Our Content
    eNewsletter
    Donate

Am I Alone


Danijela

Recommended Posts

Danijela Contributor

I haven't yet been diagnosed with celiac disease however I am going in for screening

I was just wondering if anyone has experienced sudden feelings of terror and anxiety in relation to celiac disease

and if so can you give me any advice on how you handled it and how to cope with it.

Thanks

Danijela


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



Celiac.com Sponsor (A8-M):



Guest Viola

Welcome to the board Danijela.

I'm pretty sure that no one is alone with this disease. It takes on so many different faces.

I actually pretty much locked myself up for a few years before I was finally diagnosed. Just a fear of going out, a fear that someone was going to talk me into eating and getting sick. Always a fear of where the bathrooms were located.

I don't think that last one really goes away :(

Anxiety is very common amoung Celiacs on gluten, as is low self esteem, brain fog (not thinking straight), anger, frustration and not standing up for ones self. It usually goes away with a gluten free diet, but pops back again if you accidently get into gluten. Some I believe are treated with various meds. I use my dog as my anti-depressant and confidant.

Rachel--24 Collaborator

I had fear and anxiety while waiting for my test results although it may not be the same fears your experiencing. I wasn't afraid of the gluten free diet at all...I feared my results would be negative and that I'd still be sick with no answers. I'm happy thats not the way it went. I prayed alot and I think it payed off. :)

PreOptMegs Explorer

I was definately anxious to figure out what was giong on . I play college basketball at the University of Missouri St. Louis, so being healthy is a priority just to make it through the long and very exhaustive season. I didn't know how I would handle it if it would slow me down athletically. I found that the more I read and learned about the disease and what you can and can't eat really helped me relax and enjoy life again.

KaitiUSA Enthusiast

Fear and anxiety are common symptoms with celiac. I had anxiety alot...that was one of my worst symptoms.

Carriefaith Enthusiast
I was just wondering if anyone has experienced sudden feelings of terror and anxiety in relation to celiac disease and if so can you give me any advice on how you handled it and how to cope with it.
Anxiety is common. I find that hardly any medications help me with my symptoms (except gravel for nausea) so I either wait it out or try and think of something else. Some things that may help, maybe try going for a walk/bike ride, have a relaxing bath/shower, eat comfort food, watch a movie, listen to your favorite music, ect.
julie5914 Contributor

I have been gluten free 3 months and still have the anxiety, low self-esteem, and often fear of silly things. I am espcially pushy and anxious about test results. That is a GOOD thing though - be proactive in your health care. Otherwise you will never find out and resolve what is going on. Wish I could tell you it goes away fast (and maybe I am not being strict enough). I do think it will go away with time though. My digestive troubles were gone immediately - I don't even think about it. And that alone is worth the tough diet.


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



Celiac.com Sponsor (A8-M):



Danijela Contributor

Thank-you all for your responses. The support I have found on this site is amazing.

Thanks

:D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,109
    • Most Online (within 30 mins)
      7,748

    Betsyhoff
    Newest Member
    Betsyhoff
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your frustration is completely understandable—after 13 years of strict gluten-free living and mostly normal antibody levels, it’s disheartening to still see biopsy evidence of lingering damage, especially without clear guidance from your GI. The subtle improvements (like "focal" vs. "patchy" changes) might suggest some healing, but the persistent villous blunting and lymphocytosis raise valid concerns about ongoing low-level inflammation, cross-contamination, or even refractory celiac disease (though your normal antibodies make this less likely). It’s especially frustrating when your symptoms (nausea, pain) are dismissed with generic advice, and communication feels like a game of telephone with nurses. Switching to a more engaged GI is a great step—someone who’ll actually discuss your biopsy results, explore potential hidden gluten exposures (e.g., medications, shared kitchens), and investigate other culprits (like SIBO, motility issues, or food intolerances that often overlap with celiac). Hang in there—you’re advocating for yourself the right way, and your dedication deserves answers, not canned responses. Hope the new GI provides the clarity you need!
    • Pablohoyasaxa
      Thanks for the post on Vitamin D.  I have been living in south Florida and have been taking moderately higher doses of vit D. I am considering the Mushroom supplements and exporing Real Mushrooms, the brand. Not sure. If you have any thought, please share. I am curious about all things homeopathic. 
    • trents
      About 9% of celiacs react to the protein in oats (avenin) like they do gluten. The dairy protein casein is also known to damage small bowel villi like gluten does in some celiacs. In addition to that, many manufactured gluten-free food products contain difficult to digest polysaccharides like xanthan gum that are famous for causing digestive distress.
    • Pablohoyasaxa
      Your  post is excellent. Thank you!! I have been trying to keep my diet "truly gluten free," but as you know, it's a  sneaky allergy, especially if you have a heightened sensitivity. So ironically, and sadly, no medical person told me to stay away from "gluten free oats.".  To my own fault, my lack of awareness led to years of eating  massive bowls of gluten-free oatmeal, sometimes twice a day. Awful right?  I am sure this added to the recovery time. I think I have been super vigilant for the last 12 months, but I wonder. I  haven't gone to a restaurant in a long time. My wife is frustrated with my social situation but truthfully I need to get this condition over with. Thanks again.
    • Pablohoyasaxa
      Thank you so much for the caring reply. It really helps to be getting feed back on this. Thank you Celiac.com!  The skin lesions are in the last stage. Some are larger and take more time but much better. I look at photographs from 2 years ago and I shudder.  The stomach issues prevail,  although incrementally improved, even after a stay at MayoClinic this past year. Thank you again  
×
×
  • Create New...