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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,563
    • Most Online (within 30 mins)
      7,748
    Bob Madden
    Newest Member
    Bob Madden
    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

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.