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

Ate Gluten Just To See!


LoriG

Recommended Posts

LoriG Contributor

Ok, I've been gluten-free 7-1/2 months, but haven't gotten better. My main complaint is chronic fatigue. I also have Hashimoto's. So I decided to try some gluten because I really don't have an obvious symptom when I eat it. Last night we went to Pizza Hut and I ate pizza/breadsticks. I was expecting something awful to happen, but honestly no reaction!! After avoiding it for this long, something is wrong! I am meticulous about where it is in my food, don't eat at restaurants, careful in the kitchen..... I am so paranoid that I must be getting it in, but cannot figure this out at all. Why wouldn't I feel terrible from eating all of that? I was diagnosed by enterolab. Maybe they mixed me up with someone else? How can I continue this process when this happened? Any thoughts?


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

JNBunnie1 Community Regular
After being gluten-free for 2 1/2 years, I have a very delayed reaction from gluten. The D and stomach cramps don't usually hit me for 24 to 48 hours after being exposed to gluten. So, your reaction might still come. Some get reactions nearly a week after the fact.

If you haven't had a reaction within a week, you can be sure you didn't react. Also, some people have to consistently eat gluten for a few days to a couple of weeks before it catches up with them and they get sick. Everybody is different. Just because you haven't reacted doesn't mean that you didn't do intestinal damage by eating the pizza.

Ditto. For me it's 48 to 72 hours.

AliB Enthusiast

The fact that you haven't really recovered after going gluten-free may suggest that some other food or foods could also be preventing your recovery. Those who are gluten-intolerant often also have problems with other things like dairy, corn, soy, etc. If the other foods are preventing recovery and still making you feel ill they could also be masking any reaction from the gluten. Because there is no noticeable improvement, you can't assume that your problem is not gluten.

There is also the possibility that you are getting a continuous 'supply' of hidden gluten without being aware of it, which would also restrict recovery. The stuff is so insidiously ingratiated into so many seemingly innocuous products that it is very difficult to avoid it at times.

You might get a better response by doing an elimination diet. Eating simply will help your body start to heal. It can take a while but is worth the effort. Try and restrict your diet to plain unprocessed and unadulterated meat, fish and poultry, fresh fruit and vegetables, some tolerated nuts and a little honey if you want something sweet.

It's annoying when you have gone through all this and don't seem to be getting anywhere, but there is likely to be a reason behind it somewhere!

kbtoyssni Contributor

It could also be that you get very mild reactions. I also had mostly chronic fatigue and joint/muscle pain as symptoms. My joints have been really painful recently, and I finally discovered I was eating some packaged Indian food with CC issues. It took a few weeks of eating the stuff for my joints to get really bad. But that doesn't mean it wasn't doing damage! It seems like non-GI symptoms take longer to show up.

Annaem Enthusiast

I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

LoriG Contributor
I get a reaction several days after. Your symptoms don't have to be stomach related it may manifest in another way. My mom gets joint problems and heat to her feet. Also i dont know if 7 1/2 months is enough time to completely heal. Some people take longer than that, depending on age and how long youve had it. I wouldn't judge my body's response based on 7 1/2 months. I'd say give it another 4 months.

Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)


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



Celiac.com Sponsor (A8-M):



MELINE Enthusiast
Thank you all for your responses. I did have a long talk with both my ND and nutritionist about this and why I didn't seem to react at all and neither one of them were surprised at all. They said based on how much damage I still have and because I have the chronic fatigue. I was just disappointed because I am paranoid I'm getting gluten in even though I'm so careful and now I truly won't know because I don't have an immediate reaction. I guess I'll keep plugging along like everyone else :)

hello LoriG

Just want to say that for me too the reaction can take up to 2 days and has to be more than one gluten accident to realy feel it......

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. - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    2. - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    3. - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

    4. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    5. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

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

    • Total Members
      133,446
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.