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

By tiffj
in Coping with Celiac Disease

Recommended Posts

tiffj Newbie
tiffj
Posted

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
kenlove
Posted

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
JerryK
Posted

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
kitten37
Posted

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
MDRB
Posted
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
tiffj
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,141
    • Most Online (within 30 mins)
      7,748
    smkatin
    Newest Member
    smkatin
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.