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

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

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

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

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

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

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
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

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

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

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

danikali Enthusiast
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.

  • 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. - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

    2. - MicG posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

    3. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      how long does it take for the genetic blood test for celiac to come back?

    4. - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    5. - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

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

    • Total Members
      133,655
    • Most Online (within 30 mins)
      7,748

    Murdy3
    Newest Member
    Murdy3
    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

    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
×
×
  • 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.