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

Had Some Gluten, But Feel Fine?


Jennifer2

Recommended Posts

Jennifer2 Explorer

Hi everyone

I was diagnosed 2 years ago, and have been gluten-free since.

I went out with a friend yesterday and we went to get dessert. I ordered a Hot fudge sundae and told the waitress I have celiac, she checked the gluten-free menu and yes the hot fudge sundae is on the menu.

When she brought it out, it had a brownie on the bottom of it. I said "I can't eat this", she said "it's on the gluten free menu", I said "this is a gluten free brownie", she said "its on the gluten free menu", I asked again, "this is a gluten free brownie" she said "yes, it's on the gluten free menu".

Then the waitress walked away and I had 2 bites of sundae with brownie, when the manager came rushing over. Yep, not gluten free. (The waitress had checked on the hot fudge sundae, which is gluten free, but accidentally pushed the button for brownie sunday, not gluten free). They brought me the real hot fudge sundae (gluten free) and comped us both the desserts, plus my friend's little boy got to have the brownie one.

So, I expected to feel sick or something but felt fine the rest of the day, and feel fine today. In one way I'm glad. It makes accidental glutenings easier if I don't get sick (especially when we were 2 hours away from home!) On the other hand, I've always counted on getting sick if I was accidentally glutened-sort of a warning signal. I've always been proud that I'm really carefull and never got sick, but now I'm concerned that maybe I have had glutenings and just didn't know it.

Do most of you have symptoms, or are there folks that don't feel anything?

I know I still need to be very careful, I won't use not getting sick as an excuse to cheat.

Jennifer


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

That sounds lucky for you!

Maybe for you it will be more a cumulative effect. If you have a bit today and a bit tommorow, then maybe it will be enough to get you. Maybe you just got lucky and it slid thru when your immune system was busy with something else. Who knows?

ravenwoodglass Mentor

You may be lucky and have limited effects. There was a time when doctors thought celiac was outgrown but we now realize it isn't. It can take a while for symptoms to show up once someone goes back to eating gluten, not that I think that is what you are going to do.

It is also possible that you will have a delayed reaction. It takes about 3 days for gut symptoms to show up in me.

Do be just as careful as you have been previously and I will cross my fingers for you that you either will not have a reaction or that it will be mild.

love2travel Mentor

I was gluten-free for several months before going back on it for my gluten challenge. During my challenge I pigged out on all kinds of delicious gluten-filled things and never got sick in the three months I was on it. Following my positive diagnosis for celiac disease I was accidentally glutened by hidden gluten a couple of months ago and nothing. No symptoms at all. Many people say that once off gluten for a longer period of time, when glutened they feel it more acutely. I have been off gluten almost exactly three months now again and feel exactly the same. No differences at all.

Believe me, I am thrilled I do not get sick from it BUT it can be tricky as I do not know whether I get glutened or not. I am extremely cautious with every single morsel that goes into my mouth and with everything that I touch.

So, I am technically a silent celiac which means I do not exhibit symptoms of getting sick. I do, however, have other worrisome issues such as three miscarriages and chronic insomnia that I attribute to celiac.

It is amazing how gluten affects us all in such different ways!

IrishHeart Veteran

I'd say you dodged a major bullet (hooray!) (boo! on the careless waitress <_< )

If I get accidentally glutened now (I'm over 5 months gluten-free) I have a reaction about an hour later--like I have narcolepsy :blink: --absolutely pass out exhausted and cannot keep my eyes open. Like I have been drugged.

This is strange, considering one of my major celiac symptoms (before going gluten-free) was raging INSOMNIA! :o

Lisa Mentor

That sounds lucky for you!

Maybe for you it will be more a cumulative effect. If you have a bit today and a bit tommorow, then maybe it will be enough to get you. Maybe you just got lucky and it slid thru when your immune system was busy with something else. Who knows?

I react cumulatively. But have been gluten free for six years. Everyone is different.

Skylark Collaborator

I have REALLY variable reactions. My doctor says people's level of gluten sensitivity can really change, either with more or less sensitivity.

I got the wrong crackers at Trader Joes, ate one, and thought "waitaminute... that tastes like wheat". I checked the label, and sure enough I had just eaten an entire whole wheat cracker. :blink: I had no reaction at all. Not even anxiety. I was shocked.

In contrast, I've gotten totally sick with D for six hours from potato skins CC'd in a shared fryer they didn't tell me about until I had eaten two pieces. I've also gotten sick eating grapes and cheese on a buffet, even though the cheese was separate from the dish of crackers and I checked my piece for crumbs.


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



Celiac.com Sponsor (A8-M):



Niebr Collaborator

That is very lucky indeed. I still get symptoms, which are not bad, (nausea, aches, eye twitching, and overall malaise) but i get knocked down for a week I just don't feel like doing anything, and I'm extremely moody when glutened).

im only about 5 months in, so i have clue if anything could have changed, but im not willing to attempt,

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    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

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.