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

Severe brain fog


Kurasz

Recommended Posts

Kurasz Contributor

Thanks. I will tell her not do go gluten free yet


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran
1 hour ago, Kurasz said:

Thanks. I will tell her not do go gluten free yet

We know she needs that official dx. And here's the thing..... if she goes gluten free & then tries to go back to gluten for an endoscopy she's likely to have a MUCH harder time. We tend to react far stronger to gluten after we've been off of it. Many people have thought they could go off it & then go back on it because the wait time for an endoscopy was a while but they just screw themselves up by doing that. Some find they get so very sick that they can not stay on it for even 2 weeks in order to be able to get the endoscopy. So please tell her not to make that mistake. It's better to suffer through eating gluten until an endoscopy than to go gluten-free & then go back to eating gluten. 

I know it sucks but that's the best way to do it.

Kurasz Contributor

She is going to wait. Thanks again for the good advice.

Kurasz Contributor

I talked to a lot of relatives today. Turns out i have a few cousins with leaky gut and or celiacs on my dads, dads side and on his moms side almost the entire family has chrones disease. I also have a cousin that has hashimotos disease. One of my cousins died of pancreatic cancer last year and an uncle died of it 25 years ago. Sounds like i have some really bad genetics.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,984
    • Most Online (within 30 mins)
      7,748

    henrygreen
    Newest Member
    henrygreen
    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
      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
      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
      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
      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
      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...