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

Symptom I haven't seen anywhere.


Jrscott1970

Recommended Posts

Jrscott1970 Rookie

I work on the road, and after talking to doc about symptoms, he ordered tests for Celiac to coincide with blood checkup on my Type 2 that were already scheduled for the 22nd. 

So I've been doing some research on Celiac and find that many of my symptoms match. I went on a gluten free diet for the last 2 weeks and some have gotten better, but there is a nagging symptom, and the most disturbing one, that won't go away. I can't find anyone talking about this one. I thought maybe someone here has experienced it as well.

This all started in January when I woke up, within 30 minutes I was vomiting, severe diarrhea, light/foggy headed, unsteady on feet, muscles twitching, lower legs and forearms went cold, and I passed out for 3-4 seconds. Friend rushed me to hospital, and it happened again there, where they thought it was a 3-4 second seizure. 

This continues to happen, albeit in a lessor capacity. I haven't had a pass out/seizure incident, but the signs that lead to it still happen. It comes on quick, and lasts for about 2-3 hours, and afterward I'm extremely fatigued. The only thing I think is helping stop it is, tons of water. It seems I'm dehydrating very fast, but this could just be me over analyzing. If anyone has a clue to this, or has experienced it, I would love to hear from you. 

Thanks 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Did you already have the celiac testing?  This is important because all celiac testing requires you to be on a regular full gluten diet.  In as little as two weeks, some people can reduce antibodies.  Then they get a negative on the celiac disease antibodies blood tests.  Diagnostic limboland! Please get back on gluten if you want an accurate result.  

Symptoms?  There are over 200 of them and the list is growing.  Problem is they can be same (overlap)  as illnesses like cancer or other autoimmune, for instance.  The only way to know is to get tested.  

Jrscott1970 Rookie
1 hour ago, Jrscott1970 said:

I work on the road, and after talking to doc about symptoms, he ordered tests for Celiac to coincide with blood checkup on my Type 2 that were already scheduled for the 22nd. 

So I've been doing some research on Celiac and find that many of my symptoms match. I went on a gluten free diet for the last 2 weeks and some have gotten better, but there is a nagging symptom, and the most disturbing one, that won't go away. I can't find anyone talking about this one. I thought maybe someone here has experienced it as well.

This all started in January when I woke up, within 30 minutes I was vomiting, severe diarrhea, light/foggy headed, unsteady on feet, muscles twitching, lower legs and forearms went cold, and I passed out for 3-4 seconds. Friend rushed me to hospital, and it happened again there, where they thought it was a 3-4 second seizure. 

This continues to happen, albeit in a lessor capacity. I haven't had a pass out/seizure incident, but the signs that lead to it still happen. It comes on quick, and lasts for about 2-3 hours, and afterward I'm extremely fatigued. The only thing I think is helping stop it is, tons of water. It seems I'm dehydrating very fast, but this could just be me over analyzing. If anyone has a clue to this, or has experienced it, I would love to hear from you. 

Thanks 

Yeah, I just learned I need to stay on gluten. I plan on getting back on today. I'll be tested on the 22nd. I was just looking to see if anyone else ever experienced this symptom. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,504
    • Most Online (within 30 mins)
      7,748

    Madlyn47
    Newest Member
    Madlyn47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
    • Whyz
      I’m only half way to being diagnosed I’ve started eating gluten free food because normal food makes me feel ill. is this ok
×
×
  • Create New...