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

Afraid to do gluten challenge…

Dianasolvei
 Share
Go to solution Solved by Scott Adams,

Recommended Posts

Dianasolvei Rookie
Dianasolvei
Posted

There is a very strong possibility that my lifelong IBS and gluten sensitivity might actually be celiac, and my doctors have wanted me to do a gluten challenge. I got glutened and very sick, and now I have been off, gluten for one month and starting to feel a little better. I do much better on a gluten-free diet and every time I am exposed to gluten I end up getting sick and have a trip to the ER for severe constipation, kidney pain, microhematuria, and other things. This time my liver got involved….elevated liver enzymes. They’ve never tested me for celiac in hospital and I’m always really out of it so I can’t ask for the things I need. My brain just sort of goes off-line also with very foggy thinking. I’ve had it with my main stream doctors, and went to a Naturopathic Doctor who did extensive testing and found that I had nutritional deficiencies. B12, etc. None of my regular doctors ever did that testing. I’m really pissed off. They sort of ruined my life. I really don’t want to do a gluten challenge because I’m starting to feel better and it’s going to take me over a year to heal maybe longer. I have the DQ8 gene. Is there any other way to get diagnosed properly besides a gluten challenge?

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

Celiac.com Sponsor (A8-M):


  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

Unfortunately it's the only way that is currently used by doctors. I've heard of research on other ways, but nothing that is available at this point. 

Since it's very clear that your issues are caused by gluten, why is a formal diagnosis so important?  It seems like you already have your answer, and your genetic test results indicate that you could have celiac disease.

 

 

Dianasolvei Rookie
Dianasolvei
Posted
  • Author

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

knitty kitty Grand Master
knitty kitty
Posted

@Dianasolvei,

You could go ahead and get an endoscopy now WITHOUT a gluten challenge.  Have lots of samples taken.  This way you would get a baseline with which to compare future endoscopies to check for healing and if other problems arise.  

Some people who have really severe reactions and nutritional deficiencies may have flattened or absent villi, a very strong indication of Celiac Disease.  It can take several months to a year for the villi to grow back.  Still, the sooner it's biopsied, the better.

People with gluten ataxia have antibodies against gluten that attack our nervous system.  Blood tests for celiac disease check for tTg 2 antibodies.   tTg6 antibodies are tested for in Gluten Ataxia.   

https://pubmed.ncbi.nlm.nih.gov/23576621/

And...

https://www.sth.nhs.uk/news/news?action=view&newsID=1264

Scott Adams Grand Master
Scott Adams
Posted
3 hours ago, Dianasolvei said:

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

One thing to consider, once it's on your chart you can't take it off, and you may pay higher private health and/or life premiums for life.

Dianasolvei Rookie
Dianasolvei
Posted
  • Author

Oh wow! I never thought of that.

Scott Adams Grand Master
Scott Adams
Posted

Yes, when I had to get a new life insurance policy last year I was only able to do so by paying premiums that are closer to someone who is 10 years older than me. 

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

Celiac.com Sponsor (A8-M):


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


  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748
    Cara Evans
    Newest Member
    Cara Evans
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      This is an older article, but may be helpful.  
    • gfmom06
      Celiac getting dentures

      By gfmom06 · Posted

      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
    • Beverage
      Is this celiac?

      By Beverage · Posted

      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
×
×
  • 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.