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

WORSE after going gluten free?


1398-Days

Recommended Posts

1398-Days Contributor

I have a gluten intolerance, and I went gluten free in September last year. At first everything was great, and then a month or two later I really started to realize how sensitive I was. Even the SMALLEST amount of gluten will make make me sick and it takes a week to fully bounce back. I live with my parents who both eat gluten so it's been very difficult to avoid getting sick, and also teaching them to be careful about cross contamination. By November I was getting sick like twice a month at least. The worst one yet (i think the first time i got sick from more than just cross contamination) was almost a month and a half ago and I'm still recovering. BUT, it's not the physical symptoms like feeling sick, etc., that has been bothering me the most for the past few months. It's anxiety. The funny thing is, my social anxiety has gotten a lot better since I stopped eating gluten but then I've developed this whole other anxiety. I'm just so scared that I'm going to get sick. I've been a LOT more careful with food and have only been eating what I make myself, and haven't gotten sick since last time. But the past month has been hell with my anxiety. I've been having panic attacks (which is a first for me) and am almost scared to go in public because I'm scared that I'll start to feel sick. I sometimes skip meals because I'm so worried.. even if it's just fruit or something! And I can't eat before I go in public.. I have to be hungry, otherwise I'll feel anxious. That last one has been going on for a few months, but only in the past month have I actually had a panic attack because of it. I went to the store just the other night, and ended up having a panic attack! I'm just SO frustrated and tired of this. How do I deal with this?! Part of me also wonders if it could be another food intolerance.. Since going gluten free I've discovered that red 40 makes me VERY anxious, and stevia makes me sick as well. Why not another thing, right? I guess I'm ranting a bit.. I've had a difficult few months.. especially the last month! I thought being gluten free would make me feel better, not make me scared to leave my house.. Help!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

You are a minor and I do not think you can do this alone.  You need to get your parent's involved.   If they are not willing to help you, you need to find a trusted adult (school counselor, clergyman,  doctor, social services -- someone who can get you medical help.

I think your parents probably do not believe that you have a celiac disease or a gluten sensitivity. You may have to consider a gluten challenge (maybe do it in the summer) and get a referral to a GI for celiac testing.  T

Please get some help.  We can offer sympathy and advice, but really you need more.

 

 

 

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,219
    • Most Online (within 30 mins)
      7,748

    Cmat
    Newest Member
    Cmat
    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

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.