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

Do You Find You Are More Sensitive The Longer You Are Luten Free?


HaileyRay812

Recommended Posts

HaileyRay812 Rookie

I am curious if any of you have noticed you have more symptoms the longer you stay gluten free? The longest I have gone so far is 2 weeks and then when I got back on gluten, I instantly was so itchy and lethargic! I also would feel like I was getting hives. Most of my symptoms in the past have been gi and sinus infections. The longer I am off gluten, will I react stronger and stronger to it as it completely leaves my system?


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



Celiac.com Sponsor (A8-M):



Austin Guy Contributor

I've only been off gluten for 90 days, but getting accidentally glutened now makes me feel much worse than it did when I ate it regularly. So for me, it seems that I am more sensitie now.

starrytrekchic Apprentice

It made me feel much worse for about a year, then things started getting significantly better.

RacerX35 Rookie

I have been gluten free for just over a year now and believe that I have become more sensitive. I can't even eat a pepperoni off the top of a pizza anymore. I did last time and had a minor siezure in bed and I believe that it was from the pepperoni.

Later,

Ray

stephharjo Rookie

I am more sensitive as well. 1 1/2 weeks I was gluten free and accidentally ate tacos where the seasoning had wheat in it and I was sick for two days.

GottaSki Mentor

We have several celiacs in my family and we all become more and more sensitive as time went on. One of my teen aged sons will occasionally (one item once every few months at school or social activity) ingest gluten on purpose, each time he became sicker and for longer. I think he's gone about 4 months without a slip now and he says he's done with tempting it.

SpiralArrow Rookie

I've definitely experienced this recently. Before I realized it could be gluten that was bothering me, I had problems like severe insomnia, constipation, bloating, constant brain fog and lightheadedness, higher anxiety, etc. These things are bad, but after having doctors tell me there was nothing wrong I was beginning to just accept this as something to expect every day. Everything was getting worse at a slow pace.

I went gluten free for 3 or 4 weeks, and now my reactions are terrible. I've spent almost a week now recovering from a stupid experiment that involved eating a muffin. I was bed-ridden with stomach cramps that prevented me from walking, terrible nausea, constipation, bloating, and I was on the verge of having panic attacks on my worst day. I felt like I was dying! The week was comparable to how ill I felt when I got swine flu, and that was no fun at all.

For some people, I think once your body knows what it's like to be free of a substance that is causing it damage, it REALLY lets you know if you're under attack again. :lol: Whereas before if you're eating daily doses of gluten there is no real time for your body to swing from recovering to being newly damaged again. If that makes any sense.


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

Hi,

I think you'll find variation on this board, as always; however, I will say that when I was a couple of years in to being gluten free my reactions were off the charts and now, as I'm into my 6th year, they may be a tad less dramatic. That said, I am supremely sensitive to the evil gluten and, frankly, am afraid of it for the way it makes me feel.

Most veterans of this board, however, I suspect might gently advise you that there is a LOOOOooonnnng learning curve with gluten sensitivity and, typically, (again, with caveats...), it can certainly take up to a year or more gluten free to rout out other suspect sensitivities and isolate your true gluten response. Sorry if that sounds alarming and heinously arduous but... there it is. Some are lucky and find they have no other intolerances and can simply eliminate obvious gluten and be just swell. Sadly for many of us, that is just not the case and the detective work can take more time than we'd like!

Good luck and good health to you!

lisa

mushroom Proficient

I am fortunate or (un)fortunate in that gluten is the mildest reaction of my sensitivities. Pure gluten (as in medications, which is often how I end up with it) causes mostly nausea and wanting to puke. But putting tomato with it as in pizza is a killer

cyberprof Enthusiast

I don't know if I'm "more" sensitive, I just recognize it better. About three days after diagnosis, I ate some boeuf bourguignon (a la Julia Child) that I had cooked and frozen half the recipe before diagnosis: The recipe has about 4 pounds of beef and 1/4 cup of wheat flour, meaning I ate about 1/10 of the recipe, which is about a 1/4 tablespoon of wheat. So I had been gluten-light about three days -- meaning I didn't eat anything knowingly but wasn't an expert yet on gluten-free -- and boy did I notice that boeuf bourguignon had wheat! But it's about the same level of reaction that I had last week after a dinner out, when I got an unknown quantity of gluten.

Skylark Collaborator

I got more sensitive after a few years gluten-free.

PainfulSpaghetti Newbie

I have a theory as to why this happens. A Gluten sensitivity / allergy, is an autoimmune disorder, and when we eat Gluten our bodies attack themselves. When we are eating it on a daily basis, a vicious cycle occurs, and the body is constantly fighting off the gluten attack. When you stop eating Gluten and then introduce it to the system again, your body is fighting at full force. Therefore the symptoms are far worse. Even a Tablespoon of soy sauce causes me to become itchy, and bloated and headachy and just plain ill. Think of it this way, when you are eating gluten on a regular basis, your body is sick, and after awhile it becomes almost accepted that you are. When you stop eating gluten all of the damage slowly starts to get better. But if you introduce it again, much like throwing a drop of gasoline on a fire that is almost out, your body "flares up".

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
      133,442
    • Most Online (within 30 mins)
      7,748

    Peggy Vorell
    Newest Member
    Peggy Vorell
    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.