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

Advice On Feeling So Sick


Kathleen Smith

Recommended Posts

Kathleen Smith Contributor

Hi Everyone, I havent been on in awhile. I am diagnosed and gluten free just over two years. The fisrt year was rough as it is with most, learning hidden gluten, not feeling great and then accepting you may be one of the ones that can only eat whole foods. I am lucky to have a super great nutritionist who assists me with supplements (all gluten free and everything free). I went to her about 9 months ago b/c with all the doctors and all the tests (even the Celiac Center at Columbia University in NYC) I was still feeling nausous most days. It was then when I stopped all processed gluten free foods. I cut out soy, rice and corn. I was steadily eating fruit, veggies, greek yogurt, lean protein and liking it. Occassionally, I would buy the gluten-free crackers or hummus on a holiday or corn chips and salsa for parties and sometimes I tolerated it fine, sometimes not. But that was not often I did that.

So I was cruising along finally feeling better. That lasted about 8-9 months. Now just last Sunday I am nausous (bad), have the brain fog, so super tired....like a full body systemic reaction. It stinks. It makes you re-question everything.

was I glutened?

I did start thyroid meds, levothyroxine and it has cornstarch in it. I know its not gluten but maybe it just being a grain I my body is confusing it for gluten?

Any info or words of wisdom. Even being knwowledgeable of celiac, sometimes it hard to believe how aweful you can feel. And why so long? If I was glutened shouldnt it be getting better by now? Is this the autoimmune part and my body is just freaking out?

Thank you for listening,hope you are all feeling well.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

When I get glutened and I stop eating the thing that is glutening me, I start to improve after 24 hours. My celiac son keeps getting worse for 24 hours and then starts to improve. It seems to differ and that can be really confusing.

Corn is often contaminated by wheat. I bought a bucket of corn and I go through it and remove the wheat berries before I wash and eat it. Your corn starch may have been made with a corn sample like that. It sounds like you are sensitive to very low levels of gluten since you had to stop eating processed foods to feel healthy.

I am also sensitive to very low levels and I eat very little in the way of anything processed.

It might be your thyroid meds. Have you heard of a compounding pharmacy? You can explain your extreme gluten sensitivity to them and they can make your meds up from scratch being sure not to include any possibly contaminated items. They also need to clean their equipment well before making up your order.

I hope that helps.

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. - knitty kitty replied to pilber309's topic in Related Issues & Disorders
      17

      Burning Sensation in the small intestine

    2. - trents replied to pilber309's topic in Related Issues & Disorders
      17

      Burning Sensation in the small intestine

    3. - Jojer commented on Scott Adams's article in Winter 2026 Issue
      7

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

    4. - pilber309 replied to pilber309's topic in Related Issues & Disorders
      17

      Burning Sensation in the small intestine

    5. - cristiana replied to pilber309's topic in Related Issues & Disorders
      17

      Burning Sensation in the small intestine

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

    • Total Members
      132,892
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Thanks, @trents, lactose intolerance is different than a reaction to casein.  Consuming casein could be causing that continuing antibody reaction causing localized inflammation.  Still worth trying a diet without it. Since you mentioned your father passing, you may want to add Benfotiamine.  Benfotiamine is a form of thiamine Vitamin B 1 that has been shown to improve intestinal health.  Tryptophan is helpful, too.  Tryptophan is derived from Niacin Vitamin B 3, and helps repair the intestinal tract.  Tryptophan works well with the amino acid Theanine.  So all three help immensely.   We need additional thiamine when we're emotionally stressed, physically ill and exercise a lot  or do physical labor.  The brain uses the most thiamine of any organ, twenty percent of intake!   What's your fruity probiotic?
    • trents
      @pilber309, as knittykitty pointed out, lactose intolerance is not the only issue with dairy in celiac community. Lactose intolerance has to do with the sugar component of dairy, lactose. However, some celiacs react to a protein fraction in dairy, namely, casein, like they do gluten.
    • pilber309
      Stop eating oats as it did give me irritation.The only diffrent thing i have been consuming are a new probitics which seem to have a fruit ive never heard of as a prebiotic
    • cristiana
      It could well be a new intolerance developing.  Does your diet incorporate pure oats i.e. those safe for coeliac consumption?  I find I can only tolerate a certain amount, same goes for dairy in fact, then I start to get gastric symptoms.   Or have you started consuming a new type of gluten-free bread, or more gluten-free bread than normal, that might contain oats?  I remember reading a post on this forum from a woman who had started to eat a lot of loaves made with oat flour and her coeliac symptoms kicked off again.  I am sure you know this, but some coeliacs cannot tolerate pure oats.
    • pilber309
      I eat a lot of dairy but its intermittent is this burning so I would assume it would happen all the time. Plus I have been tested for lactose intolerance  etc and I am fine and the other symptoms of that I don't get. As a aside  my dad died last month after a long illness so I wonder if the stress of that might be a influence as a bodily reaction to stress.
×
×
  • 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.