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

Glutenings Worse After Going gluten-free?

foodiegurl

Recommended Posts

foodiegurl Collaborator
foodiegurl
Posted

I am newly diagnosed, and have not yet gone fully gluten-free. Pretty much, and then after my daughter's bday next week, I will do it fully. I don't question the need to do it, I know it has to be done. But my question is this....after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten.

Right now, I don't really have any symptoms...some gas and constipation, which I have always had, but I assume it is from celiac now. So, when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? Is it going to actually make me feel worse? Am I setting myself up to have a huge immune reaction?

My sister discovered she was allergic to wheat a year ago. Before that she had no symptoms. Now, when she does come in contact with it, on accident, she feels horrible for hours.

This really scares me. Especially since now, I am don't feel like that :(

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted
I am newly diagnosed, and have not yet gone fully gluten-free. Pretty much, and then after my daughter's bday next week, I will do it fully. I don't question the need to do it, I know it has to be done. But my question is this....after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten.

Right now, I don't really have any symptoms...some gas and constipation, which I have always had, but I assume it is from celiac now. So, when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? Is it going to actually make me feel worse? Am I setting myself up to have a huge immune reaction?

My sister discovered she was allergic to wheat a year ago. Before that she had no symptoms. Now, when she does come in contact with it, on accident, she feels horrible for hours.

This really scares me. Especially since now, I am don't feel like that :(

Hello and welcome!

Good for you that you realize the need to go gluten free! You'll see that things get easier as time goes by.

It is a fact that when you go gluten free then you become very sensitive to gluten. But take it as a good thing. You will always be sure that you are / or aren't glutened. Otherwise, you would still get gluten from hidden sources - and you would still damage yourself without knowing it. Especially in the beginning it is very common to get cross contamination or get hidden gluten.

So take it as a wise way that your body has in order to warn you!

Meline

sbj Rookie
sbj
Posted
after reading so much on here, one huge fear I have is, that I will feel worse after I go gluten-free when I come in contact with gluten . . . when I am completely gluten-free, and I accidentally come in contact or have CC, am I going to have a massive reaction, even though I have never had one before? . . . This really scares me. Especially since now, I am don't feel like that :(

I think someone once posted a study here that showed that for some people your reactions to gluten do become more violent after you go gluten free. Several others here have said the same thing. However, I can relate my personal experience which is different. I never had any symptoms before diagnosis, and I still have no symptoms after going gluten free for several months (I made a boo-boo and had some chili cheese Fritos but suffered no ill effects). BTW, after my diagnosis my gastro demanded that I go gluten free immediately and would not permit me to wait for even one day.

luvs2eat Collaborator
luvs2eat
Posted

About a year after going gluten-free, I scarfed down a huge hunk of homemade bread I'd made and missed so terribly. NOTHING HAPPENED. I had these awesome dreams of "planning" a cheat... maybe once a month... and was making a list of all the foods I might have! I didn't do the once a month cheat... and now I wouldn't knowingly put gluten in my mouth for all the $$ in the world. THAT'S how sensitve I became.

Jestgar Rising Star
Jestgar
Posted

My reactions are immediate, but quite mild. Not everyone's reactions get worse.

Archived

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

Go to topic listing

  • 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. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    2. knitty kitty
      - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    3. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
    4. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Guinness, can you drink it?

      This article may be helpful:
    5. Kirita
      - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748
    Dorfor
    Newest Member
    Dorfor
    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

    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
×
×
  • 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.