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

Really Bad


gluten free overseas

Recommended Posts

gluten free overseas Apprentice

I think I was glutened really badly. I bought some buckwheat flour--the same flour I've bought in the past. It looked different, but I bought it anyway. I made bread and pancakes with it and am in really bad shape now.

I get immobilizing anxiety, I feel like I'm losing my mind. Along with vomiting and pain in my back too. I'm so discouraged. After about 5 hours, I'm able to breathe enough to sit in a chair and watch TV or check email.

I'm having flashbacks of being in the hospital and being in so much pain and the doctor saying he couldn't do anything else. I thought I was dying back then. I know I'm not dying now, but it feels like it.


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

I'm so very sorry you were "poisoned." Gluten seems to act like poison with so many of us with celiac. I wish there were something I could say to make you feel better....but I know that you just have to get through the worst of it before that can happen.

I fully understand what you're going through...and I hope you start feeling better soon.

Keep thinking, "Better times ahead...."

eatmeat4good Enthusiast

God, I hate that feeling of going downhill when you know you have been glutened. I wish I only had the gastrointestinal problems, but I have full on neurological problems...anxiety and despair set in and it seems it will never go away. It is horrifying. I know what you are going through. Sorry you have to go through it. I was lost completely when Dr.'s said they couldn't help....so I know the despair of that feeling too. Hopefully this will pass quickly and you will be ok soon. At least we do know these episodes are temporary in spite of how horrifying they can be. hang in there.

gluten free overseas Apprentice

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

AVR1962 Collaborator

Try to be patient with yourself. I do understand exactly what you are saying. I get so depressed when I get glutened. My speach and balance are affected and I too feel like I am losing my mind and do crazy dumb things like leaving on burners and buying food for a planned meal twice. I sometimes wonder if I am ever going to figure it out but then when I get to feeling better I realize I have just got to be careful. Part of it is learning what works and what doesn't and forgiving ourselves for our mistakes and moving on.

Juliebove Rising Star

Sorry to hear that. Gluten isn't an issue for me. But I do have an egg allergy. A couple of weeks ago I stupidly ate a bite of the gluten-free bread on my daughter's sandwich, totally forgetting that the wrapper listed egg in the ingredients. And then I paid for it. It happens.

ravenwoodglass Mentor

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

Unless these are regular glutened symptoms for you it would be a good idea to visit the doctor or even the ER. We tend to forget that not all symptoms are gluten related and you could have something else going on. The not being able to open your eyes and sagging has me a bit concerned. Do give us an update on how you are doing.


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



Celiac.com Sponsor (A8-M):



gluten free overseas Apprentice

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

ravenwoodglass Mentor

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

Glad to hear you are doing better. That picture is of my little Pooh Bear when he was a couple years old. I have got to try again to get a picture of Maggie, she is a Blue Merle Dapple Doxie and adorable also. I have trouble resizing pics and the ones I have taken so far are too big. Thats my task for today.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,236
    • Most Online (within 30 mins)
      7,748

    Elaine Brostrom
    Newest Member
    Elaine Brostrom
    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

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...