Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Need Some Advice

beth01

Recommended Posts

beth01 Enthusiast
beth01
Posted

I was glutened about 10 days ago.  The only thing that has stuck around for symptoms is the brain fog, it won't lift. Two days ago I tried eating raw carrots for the first time since my diagnosis, I had about a handful of the mini's.  I felt fine for about 5 hours and then I felt awful, stomach pain, the big D, nausea and  a headache - all from carrots. I didn't have any other new foods, and the foods that I had that day I have had before and not had a problem with them. My stomach was so sore yesterday I couldn't eat anything.

 

Now today I have the worst headache, my body hurts from head to toe - I can hardly walk. I don't even know how to explain the pain, it's more of a bone ache than anything. My only joints that hurt are my hips and that is new too, any joint pain I had before was more my upper body.  I have never felt this way before, it's totally new. I also had the vaginal itching come back full force, vaginal bleeding TMI sorry. I can't take anything more than Tylenol, allergic to everything but fentanyl.

 

I don't have much experience with glutenings it's only been two months since my diagnosis but the few that I have had I am sick within hours.  I know people have said that their symptoms of a glutening can change and get worse after you have been off gluten for a while.

 

I have a gluten free house, the only thing I haven't done is change my pots/pans/dishes. They were all relatively new, we just washed them well.  Anything scratched is gone.

 

I am just at a loss, I didn't eat anything yesterday, only had water ( out of a water bottle so I know the damn cats didn't lick it), and my pills( all of them called 800 numbers and asked the company if they were safe).

 

Has this happened to anyone else?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I was glutened about 10 days ago.  The only thing that has stuck around for symptoms is the brain fog, it won't lift. Two days ago I tried eating raw carrots for the first time since my diagnosis, I had about a handful of the mini's.  I felt fine for about 5 hours and then I felt awful, stomach pain, the big D, nausea and  a headache - all from carrots. I didn't have any other new foods, and the foods that I had that day I have had before and not had a problem with them. My stomach was so sore yesterday I couldn't eat anything.

 

Now today I have the worst headache, my body hurts from head to toe - I can hardly walk. I don't even know how to explain the pain, it's more of a bone ache than anything. My only joints that hurt are my hips and that is new too, any joint pain I had before was more my upper body.  I have never felt this way before, it's totally new. I also had the vaginal itching come back full force, vaginal bleeding TMI sorry. I can't take anything more than Tylenol, allergic to everything but fentanyl.

 

I don't have much experience with glutenings it's only been two months since my diagnosis but the few that I have had I am sick within hours.  I know people have said that their symptoms of a glutening can change and get worse after you have been off gluten for a while.

 

I have a gluten free house, the only thing I haven't done is change my pots/pans/dishes. They were all relatively new, we just washed them well.  Anything scratched is gone.

 

I am just at a loss, I didn't eat anything yesterday, only had water ( out of a water bottle so I know the damn cats didn't lick it), and my pills( all of them called 800 numbers and asked the company if they were safe).

 

Has this happened to anyone else?

Did you say on another thread that you had some other illnesses? Maybe this is from them?

beth01 Enthusiast
beth01
Posted
  • Author

I was thinking the same thing, but I have never felt this way before.  If I didn't have two kids here right now and could drive, I would be on my way to the hospital. I just don't want to go and have them tell me I'm and idiot and somehow glutened myself.

kareng Grand Master
kareng
Posted

I was thinking the same thing, but I have never felt this way before.  If I didn't have two kids here right now and could drive, I would be on my way to the hospital. I just don't want to go and have them tell me I'm and idiot and somehow glutened myself.

This doesn't sound like a glutening from 10 days ago. Maybe you have caught something? If you feel like you should go to the hospital, you can call 911.

beth01 Enthusiast
beth01
Posted
  • Author

Today I don't have any nausea, no vomiting, no D, just the unbelievable pain. I am actually hungry. I didn't think it was a glutening either.  I am trying not to freak my kids out too much but they know momma doesn't feel right.  I had to go take a bath so I could cry. 

 

Thanks for the reply's Karen.

notme Experienced
notme
Posted

hormones will mess you up, every time.........  or, i can't eat those pre-peeled carrots (even cooked) maybe they rinse them in something :( i dunno, just my experience.  sometimes it's not a 'glutening' vs 'something i can't eat right now' - it takes a minute to know the difference.  i know the first year i was gluten-free i was always second guessing where i got glutened right around my period time (headache, general 'goo' guts, fatigue) but give it time and you'll know what's gluten and what's mother nature.  i hope you feel better :)

beth01 Enthusiast
beth01
Posted
  • Author

I somehow managed to make it through the night.  Not sure how, the pain was everywhere and traveling but it seems more like nerve pain that anything. And some of my bones ache.  One minute my back would hurt, then my foot, then my arm, my neck, my chest, my legs, then the fun of everywhere all at once.  It kind of came in cycles.  I called the clinic this morning to see if I could be seen by a staff doctor and not a resident but they didn't have any openings but I actually got in with my doctor tomorrow afternoon.  I just have to make it that long.  The nurse did stress to me that if I am in that much pain to go to the ER.  I told her I was concerned that when I go they treat me like a drug seeker and she told me if that happened to make a complaint.  She said she was going to put a note in my chart that I am not a drug seeker but have multiple health issues that cause me pain.

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

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,985
    • Most Online (within 30 mins)
      7,748
    Sparks889395
    Newest Member
    Sparks889395
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...