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

Non-Celiac Gluten Sensitivity/intolerance

Noles Girl

Recommended Posts

Noles Girl Newbie
Noles Girl
Posted

Hello everyone,

I was diagnosed today with Non-Celiac Gluten Sensitivity. I've had issues for 8+ years, and its great to finally put a name to what I have been going through. For years doctors' labelled me as having IBS, but then my headaches (migraines and tension) started occurring on a weekly basis, I was extremely exhausted that it interfered with my day, and I started losing my memory. I've always had an excellent memory, and I'm only 32 so I knew that I shouldn't be having memory loss this soon. About 3 months ago, I switched to a new doctor and she ran some blood tests and found out that I had a Vitamin B12 deficiency and that I was positive for one of the markers on the Celiac panel. My doctor had me try a gluten-free diet for a month and almost all my symptoms had either lessened or went away. I was sent to a GI doctor to confirm if I had Celiac, so I had to go back on a gluten diet for 6 weeks before my endoscopy and small intestine biopsy. It was miserable because all the abdominal pain, bloating, gas, headaches, and fatigue returned. I found out today that my biopsy returned normal with no damage to the small intestine, so my GI doctor has labelled me with NCGS since my body cannot tolerate gluten. I have been told by both my primary doctor and my GI doctor to live a gluten-free lifestyle. It's nice to know that eventually I will start feeling normal again and enjoy eating.

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

Celiac.com Sponsor (A8-M):


kwylee Apprentice
kwylee
Posted

Welcome! You're in the right place. I've gleaned an abundance of information and support on this forum, more than any other outlet. There are so many people here who truly care.

I'm diagnosed the same as you, non-celiac but with a world of trouble ingesting gluten, for me mostly neurological. Shortly after removing gluten from my diet, I also stopped eating dairy and soy, and that seemed to make everything click for me, that, and watching the cross contamination issues. But one thing I know from reading these posts, EVERYONE IS DIFFERENT. That being said, there is always someone here who knows exactly what you're going through, so put your questions out there and see what works best for you.

You're in great company!

Archived

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

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


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...