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

First-time Glutened - 8 Mths gluten-free - Help/advice?


tiffj

Recommended Posts

tiffj Newbie

Hi all - i'm brand new here but have been diagnosed celiac disease and have been strictly gluten-free for about 8 mths now. I have been extremely careful right from the get-go & have found family & friends to be very supportive & accomodating when cooking for me etc.

Unfortunately 2 nights ago i went to friend's house for dinner & she used a Worcesteshire sauce that she thought was safe but actually contains malt vinegar & wheat.

This is the first time since i started eating gluten-free that i have been 'glutened'. I started feeling really nauseous about 4-5 hours after eating & before long was vomiting & had a temperature, breaking into a severe cold sweat. I haven't been well now for 2 days & have suffered a mix of C & D, as well as extreme fatigue, the constant nausea, pounding headache, dizziness, a real "out-of-it" feeling (that from reading some posts on here i think is the "brain-fog" you all refer to perhaps?) , quite emotional (perhaps even a bit depressed?)and an anxiety that i'm not sure is a physical reaction or a more emotional one given that this is the first time this has occurred since i went gluten-free & it has me a little freaked.

I'm still feeling really awful & am even more concerned now since i've already had to take 2 days off work & can't see myself feeling well enough to go tomorrow either (i'm in Australia and it's just after 1am now as i post). While everyone at my work is aware i have celiac disease, i'm worried they're not going to understand this reaction to accidentally ingesting some gluten & that they may think i'm exaggerating my symptoms - i had no idea it would be this bad myself?! Once i realised what had happened i expected the sypmtoms to go away within 24 hrs or so... As it was late at night when symptoms started & i was a bit worried i went to the hospital where the doctor gave me some tablets to help woth cramps & some to help with nausea but other than that they couldn't do much.

Can anyone offer any advice, or help please???


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



Celiac.com Sponsor (A8-M):



kenlove Rising Star

In my almost 2 years of being gluten-free, it's happened a few times. When it does it just deepens my resolve to be more vigilant in being gluten-free and not taking chances. At friends it's always very difficult no matter how hard they try. They just need to understand

the fine points or you have to get together with them when it does not involve food. Sometimes cross contamination can happen even from pots and pans etc or compounded by flour in the air -- thats the worse for me. I can't walk into a kitchen where flour has been used in the past few days.

Hope your feeling better soon

Ken

Hi all - i'm brand new here but have been diagnosed celiac disease and have been strictly gluten-free for about 8 mths now. I have been extremely careful right from the get-go & have found family & friends to be very supportive & accomodating when cooking for me etc.

Unfortunately 2 nights ago i went to friend's house for dinner & she used a Worcesteshire sauce that she thought was safe but actually contains malt vinegar & wheat.

This is the first time since i started eating gluten-free that i have been 'glutened'. I started feeling really nauseous about 4-5 hours after eating & before long was vomiting & had a temperature, breaking into a severe cold sweat. I haven't been well now for 2 days & have suffered a mix of C & D, as well as extreme fatigue, the constant nausea, pounding headache, dizziness, a real "out-of-it" feeling (that from reading some posts on here i think is the "brain-fog" you all refer to perhaps?) , quite emotional (perhaps even a bit depressed?)and an anxiety that i'm not sure is a physical reaction or a more emotional one given that this is the first time this has occurred since i went gluten-free & it has me a little freaked.

I'm still feeling really awful & am even more concerned now since i've already had to take 2 days off work & can't see myself feeling well enough to go tomorrow either (i'm in Australia and it's just after 1am now as i post). While everyone at my work is aware i have celiac disease, i'm worried they're not going to understand this reaction to accidentally ingesting some gluten & that they may think i'm exaggerating my symptoms - i had no idea it would be this bad myself?! Once i realised what had happened i expected the sypmtoms to go away within 24 hrs or so... As it was late at night when symptoms started & i was a bit worried i went to the hospital where the doctor gave me some tablets to help woth cramps & some to help with nausea but other than that they couldn't do much.

Can anyone offer any advice, or help please???

JerryK Community Regular

Interesting to read your symptoms, because they so mirror mine. Although not formally diagnosed Celiac, the symptoms I am very familiar with ;) About three days is what it takes for me to start feeling better after a glutening.... I've been doing my best to stay gluten-free for quite some time now, and it's always a shock when I eat something I shouldn't have and the symptoms return. You will feel better soon :)

kitten37 Newbie

I'm so sorry you have to be in that terrible place :(

As far as work is concerned education is the key to solving misunderstandings. Educate your employer/coworkers as this is probably foreign to them. Inform them of what celiac does to the body and how after being gluten free the symptoms and reactions are worsened. Explain to them the steps you have taken to manage the disease. I think once they see how much it takes to avoid the sneaky gluten they may be able to come to understand it.

I hope you feel better soon :)

MDRB Explorer
Hi all - i'm brand new here but have been diagnosed celiac disease and have been strictly gluten-free for about 8 mths now. I have been extremely careful right from the get-go & have found family & friends to be very supportive & accomodating when cooking for me etc.

Unfortunately 2 nights ago i went to friend's house for dinner & she used a Worcesteshire sauce that she thought was safe but actually contains malt vinegar & wheat.

This is the first time since i started eating gluten-free that i have been 'glutened'. I started feeling really nauseous about 4-5 hours after eating & before long was vomiting & had a temperature, breaking into a severe cold sweat. I haven't been well now for 2 days & have suffered a mix of C & D, as well as extreme fatigue, the constant nausea, pounding headache, dizziness, a real "out-of-it" feeling (that from reading some posts on here i think is the "brain-fog" you all refer to perhaps?) , quite emotional (perhaps even a bit depressed?)and an anxiety that i'm not sure is a physical reaction or a more emotional one given that this is the first time this has occurred since i went gluten-free & it has me a little freaked.

I'm still feeling really awful & am even more concerned now since i've already had to take 2 days off work & can't see myself feeling well enough to go tomorrow either (i'm in Australia and it's just after 1am now as i post). While everyone at my work is aware i have celiac disease, i'm worried they're not going to understand this reaction to accidentally ingesting some gluten & that they may think i'm exaggerating my symptoms - i had no idea it would be this bad myself?! Once i realised what had happened i expected the sypmtoms to go away within 24 hrs or so... As it was late at night when symptoms started & i was a bit worried i went to the hospital where the doctor gave me some tablets to help woth cramps & some to help with nausea but other than that they couldn't do much.

Can anyone offer any advice, or help please???

Hi!

I'm in Australia too!

I recently missed out on two really important exams at uni because I got 'glutened', so I feel your pain!

I had a medical certificate for the day before the exam, but the lecturer didn't believe that I could still be sick from eating: in her words 'a tiny little bit of wheat'. Grrrrrr

I find that I am usually sick for at least a week when I get glutened.

Good luck, I hope yours doesn't last that long.

tiffj Newbie

thanks to everyone for the replies!

i didn't feel a LOT better for prob about 5 days or so, it's now 1 week since i was glutened & i feel almost back to normal - i had NO idea it would be that severe a reaction?!

Certainly reiterates to me how vigilant i need to be.... thankfully work have been very understanding, i even found out that one of my bosses did some research into Celiac Disease to get a better understanding of what i was going through!

Anyway, just wanted to thank everyone for your thoughts & well-wishes... was kinda freaked out since it was the first time...i'm hoping it's the last for a long time!

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
      133,217
    • Most Online (within 30 mins)
      7,748

    jan ohlson
    Newest Member
    jan ohlson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.