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

So Confused....

danikali

Recommended Posts

danikali Enthusiast
danikali
Posted

Hi, it's me again, I know, for the third time today! Anyway, I was wondering, I am almost positive that I got glutened by CC of a few balance bars. When I was undiagnosed, and on what I thought a gluten free diet(I was constantly getting sick still and not knowing why- then I learned about cross contamination and hidden gluten), I would get sick about once a month, so bad that I would have a sore throat, ALL OVER body aches, sweats, and a nerve pain on the top of my head, kind of like a flu but the symptoms were ALWAYS the same and very predictable. The GI symptoms that I had before ever trying going gluten free were constant, and everyday. So anyway, now I am having that sickness again (sore throat, ALL OVER body aches, sweats, and a nerve pain on the top of my head) but no GI symptoms. My stomach feels fine, not bloated, no gas, and no "D" or "C." But this all started after eating the contaminated balance bars.........so I'm wondering if anyone could tell me why everything BUT the GI symptoms have come back.....if it were just a case of cross contamination, wouldn't I just feel it in my gut? My GI tract still seems to be on it's road to recovery, but I haven't felt all these other symptoms since when I was doing the gluten challenge about 3 months ago! I've been 'glutened' in these past 3 months, but not so severely and it was only GI issues. Why all of a sudden is my body giving me such a serious all over immune problem again, but no GI pains? I'm so confused! What makes our bodies chose which symptoms and signals to give off? This is really bad.

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

Celiac.com Sponsor (A8-M):


danikali Enthusiast
danikali
Posted
  • Author

Okay, if anyone is confused about my topic, does anybody know this answer: Can you get varied symptoms when you are glutened. For example:

Glutened once: GI troubles

Second time glutened: No GI, but tired and cranky

Third time: Knee pains and gas, nothing else

Fourth time: Muscle aches, all over body, throat ache nothing else

Fifth time: just GI, nothing else

Okay, so do you guys understand? I'm sorry to be a little pushy, but I'm scared it's not something else because this is really bad. I'm 21 and feel like I'm 90 years old right now. Does anyone else experienece different symptoms with different gluten experiences? I'm so desparate!

jerseyangel Proficient
jerseyangel
Posted

Dani--I hate for you to be this afraid--I know that when I get a gluten reaction, it has always included some GI symptoms. I have had other symptoms that do vary. Last month, I had a terrible time and had muscle aches (especially in my legs), brain fog & wavy sight, anxiety, nausea as well as D. I can only speak for myself, but each reaction is a bit different. I almost always get easily irritated (cranky). Because you ate several of the Balance Bars, maybe the reaction (the same as what you used to get on gluten) is worse because of the number of exposures. Like, instead of getting a little CC, this time it was more of a repeated exposure. Is it possible that you're catching a cold at the same time? Hope some of this helps :)

key Contributor
key
Posted

Dani,

I can't explain what is going on for you, but I too feel that depending on the amount of gluten I get the symptoms for me seem to vary. I got gluttened on Saturday. My first symptom is always having alot of burping(weird I know), but I don't do this any other time. Then that evening my belly was bloated and I had heart burn. THen the next morning I had horrible tummy pains in my lower abdomen and I have the crankiness and fatigue. My legs also ached. Then the next day I ended up going to the bathroom way more then normal. We'll see this time ,but it seems that I will end up with "C" after a few days and then that will last a week or two. Usually I get nauseated, but this past time, the worst for me was the stomach pains and heartburn. I don't know, it is crazy. I feel like I can't tell what happens to me each time. I can have severe nausea sometimes.

I did get a sore throat one time and no one else was sick. I also had a fever. Anyway, the reason I thought it may have been gluten was that my stomach hurt like I had had gluten. Also, No one else got sick and I was around a bunch of people. I was getting alot of gluten by accident around that time though and think maybe my immune system was down.

Sorry I am not much help. Just trying to give you some sort of answers, by sharing my own experiences. THere have been many!! LOL!

Monica

danikali Enthusiast
danikali
Posted
  • Author

Thanks to both of you! Well, I know that I don't have a cold or anything because it just doesn't feel like one. It's the way I used to get A LOT when I was eating gluten a lot. But thanks for telling me that's it's a little bit different everytime for you guys too. I was doing so well for so long too! I haven't had this long of a streak before with feeling really really good! It was like 3 whole weeks! That's amazing for me:) But I guess I have to wait this out again and realize that I can't eat anything that says produced on the same lines as gluten. Also, it always happens around getting my 'monthly friend.' Have you noticed that? It's like, I'm extra hungry and craving things more, and that's what gets me in trouble!

Jen H Contributor
Jen H
Posted

Hey Danikali,

That's a really good question. Can your body have varying symptoms after being glutened? I'm not sure. Some of my symptoms have been different each time, but I"m not sure if that's typical for everyone.

CMCM Rising Star
CMCM
Posted
Hi, it's me again, I know, for the third time today! Anyway, I was wondering, I am almost positive that I got glutened by CC of a few balance bars. When I was undiagnosed, and on what I thought a gluten free diet(I was constantly getting sick still and not knowing why- then I learned about cross contamination and hidden gluten), I would get sick about once a month, so bad that I would have a sore throat, ALL OVER body aches, sweats, and a nerve pain on the top of my head, kind of like a flu but the symptoms were ALWAYS the same and very predictable. The GI symptoms that I had before ever trying going gluten free were constant, and everyday. So anyway, now I am having that sickness again (sore throat, ALL OVER body aches, sweats, and a nerve pain on the top of my head) but no GI symptoms. My stomach feels fine, not bloated, no gas, and no "D" or "C." But this all started after eating the contaminated balance bars.........so I'm wondering if anyone could tell me why everything BUT the GI symptoms have come back.....if it were just a case of cross contamination, wouldn't I just feel it in my gut? My GI tract still seems to be on it's road to recovery, but I haven't felt all these other symptoms since when I was doing the gluten challenge about 3 months ago! I've been 'glutened' in these past 3 months, but not so severely and it was only GI issues. Why all of a sudden is my body giving me such a serious all over immune problem again, but no GI pains? I'm so confused! What makes our bodies chose which symptoms and signals to give off? This is really bad.

My symptoms are all over the map and there is no consistency at all. I can get terrible GI one time, nausea another, terrible muscle aches, and so on. My reactions are also affected by casein, and often the casein reaction is worse than for gluten. Casein for me causes terrible GI problems, D, and sometimes muscle aches. The gluten is less well defined. And I think for me, the severity is governed by the amount of exposure...if I get several things in a short time, all the weird stuff happens. My asthma comes back, too. These things are why this is all so difficult to figure out!

:(:(

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

Celiac.com Sponsor (A8-M):


key Contributor
key
Posted

Carole,

That is exactly the way I would describe how I am after getting gluten. I usually do have GI symptoms ,but sometimes I just feel exhausted and don't want to do anything and I can't concentrate. I haven't figured out anything with casein yet. I am finding out I am feeling better off of dairy. I haven't completely eliminated it, but I cut back. Haven't had any cheese, just a small amount of milk in my coffee. I may get stricter and research more stuff if I don't continue feeling better. I was feeling awesome, but I think I got set back by being gluttened one week and then again the next.

Monica

danikali Enthusiast
danikali
Posted
  • Author

Okay, thanks guys! Good to know I"m not crazy! I'm actually feeling better today. The muscle pains were sooo bad yesterday! I've also noticed that the pains go away within a day or two and before I was gluten free, it would last no less than a week, it was horrible. I would get one little leg cramp and knew it would get worse and worse for about a week and then subside for another couple days after that. Thank God it's not like THAT anymore! :blink:

jerseyangel Proficient
jerseyangel
Posted

Glad to hear you're feeling better today, Dani--I was worried about ya :)

danikali Enthusiast
danikali
Posted
  • Author
Glad to hear you're feeling better today, Dani--I was worried about ya :)

Thank you Patti! That's so sweet!

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. Rejoicephd
      - 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)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

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

      Great Value Veggies cannot be trusted.

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

      Reverse Osmosis (RO) Water

      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...
    5. Known1
      - 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

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

  • Member Statistics

    • Total Members
      133,443
    • Most Online (within 30 mins)
      7,748
    Squirrel75
    Newest Member
    Squirrel75
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      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
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      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
      Reverse Osmosis (RO) Water

      By Known1 · Posted

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

      By Known1 · Posted

      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
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      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.