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

Being Glutened / Changes In Reaction?


India

Recommended Posts

India Contributor

I've followed the recent thread about reduced gluten reactions/recovery. I certainly don't think I've recovered, but I'd like to ask if you guys have experience of gluten reactions changing or decreasing over time?

I've only been properly glutened once (18 months ago) and my symptoms included GI problems and muddling my words, usually nouns.

Recently, I've been forgetting things, making mistakes and muddling my words constantly (nouns, grammar, pronunciation... it's horribly embarrassing). I've had a stupidly stressful couple of months (new city, new job and more) and my doctor says it's just stress.

However, although my home is gluten free, I recently spent three weeks staying with relatives, plus since moving I've been around gluten much more, though I try to be super-careful. I've had a lot of C lately but no the other GI symptoms I'd expect.

So - could small traces of gluten be responsible for these problems? Has my reaction to gluten lessened? I'm kind of answering my own questions as I write this but I'd appreciate your opinions.


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

I recently had this experience too. I was glutened at a restaurant, and had C vs almost immediate D like I always had before. But I still had the neuro reaction. I cannot go up or down a flight of stairs for about a week after ingesting gluten. It's too scary because my balance and control are all off, and my feet seem independent of my brain. I take the elevators. (I'm in office buildings multiple times daily with my job.)

I could still show up for work though, and last year I would have had to call in sick. Even though I didn't sleep as well as usual, I didn't get insomnia.

My symptoms have definitely changed. I have a new one too, eczema. :P I hate eczema!

India Contributor

Poor you, your reactions sounds horrible :/

I don't know if I'm being glutened or not... going gluten-free made me feel wrectched so I've been so scrupulous about avoiding gluten that I have no idea how sensitive I am. But I've spent much more time than usual cooking in gluten kitchens and sitting in pubs (I'm British!) with beer stained tables and wonder if this is the effect of being regularly exposed to small amounts. I'm having a couple of weeks of staying home and being extra careful, to see how that goes.

T.H. Community Regular

So - could small traces of gluten be responsible for these problems? Has my reaction to gluten lessened?

I definitely noticed a change in my symptoms as this has gone along (I'm only about 2 years into the diet, at this point). Trace gluten seems to have an effect similar to what you experience, mentally. My memory gets a little worse, forgetting words and things like that more frequently.

I kind of wondered what it was, too, until I ended up getting a BIG gluten hit and my neurological reactions were SO much worse. I hadn't realized it at the time, but apparently my words were slurring so much people would have thought I was drunk, I had no balance, I couldn't understand what people were saying very well, couldn't figure out the right words to say for it to mean what I wanted it to. It was awful. And at the tail end of recovering from that, my symptoms got down low enough to match what had been my 'low level cc' symptoms.

so at least on my part, my reactions didn't lessen, I just became more sensitive to low level cc. <_< Hoping your body went the opposite and you just react less now! :-)

Skylark Collaborator

Your reactions and sensitivity can definitely shift around. I never know what "grab bag" of symptoms I'm going to get from gluten. Sometimes it's horrible D, other times I just feel unwell; I've also had no reaction other than anxiety a couple days later. The amount that sets me off has also varied considerably over the past six years I've been gluten-free.

heidi g. Contributor

I have had stomach problems from anxiety/stress since i was 16. I believe it can make the symptoms worse. But stomach problems can also give you anxiety too. Also, at any restaurants, there are high risks of cc. You could touch the tables and maybe of stuck your fingers in your mouth while eating. I don't even go out to eat anymore. I don't trust anybody's cooking except my own.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SusanJ replied to Jillian83's topic in Coping with Celiac Disease
      5

      Celiac and dermatitis herpetiformis has taken Me from Me

    2. - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

    4. - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

    5. - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,981
    • Most Online (within 30 mins)
      7,748

    Cathal Brugha
    Newest Member
    Cathal Brugha
    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

    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
×
×
  • 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.