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

Negative Scope


Marmee

Recommended Posts

Marmee Rookie

I had my endoscope yesterday and it came back normal. I had been off gluten for seven years and went back on it for 5 weeks so I could have the scope done. 
They did find a medium-sized hernia, LA Grade C reflux , esophageal stenosis (the doctor dilated my esophagus)   
I was not given any instructions on what to do…keep eating gluten or stop. My doctor was really upset that I had not taken the PPI that he prescribed me weeks before. I go back to him in 6 months. I’m thinking about going to another GI doctor that will actually listen to me. I posted my previous blood results in this thread. 
Should I ask for a genetic test and/or request blood test because the others were years ago? 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Marmee, how much gluten were you eating? There has been a lot of debate about how much daily gluten should be eaten. From the so-called "experts" we see everything from 1/2 should of wheat bread to three or more slices daily should be eaten for a minimum of six weeks in order for the gluten challenge to yield valid results.

If I were you, I would seek a genetic test because my feeling is the more info you have the better is the conclusion that will be reached. And I don't blame you for wanting to get another doc who will listen to you. The one you have needs to learn to respect the patient's medical decisions in something as questionable as PPI therapy.

A blood test would also be smart but you must keep eating gluten for it to be valid.

knitty kitty Grand Master

@Marmee,

I'm so sorry you're going through this.  

If someone who has Celiac Disease has been off gluten for long periods of time, an autoimmune reaction to gluten may take months of gluten consumption to be triggered again.  The immune cells that "remember" gluten only live for about two years.  Of course you're not going to have blatant damage after a few weeks.  New immune cells must recognize gluten as a pathogen which can take months.  

I think it's horrible that Celiacs are told to hurt themselves until it's blatantly apparent in order to get a diagnosis.  

If you've still got the rash or bumps on your face, have you considered having that biopsied for Dermatitis Herpetiformis (definite Celiac diagnosis).  

Get the genetic test for Celiac genes!  

And get checked for nutritional deficiencies which can occur on the gluten free diet.  

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test

    2. - ShariW replied to ShariW's topic in Coping with Celiac Disease
      2

      Not All Corn Grits are Safe

    3. - knitty kitty replied to ShariW's topic in Coping with Celiac Disease
      2

      Not All Corn Grits are Safe

    4. - trents replied to TerryinCO's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      New Guy Here...

    5. - knitty kitty replied to Itchyperson's topic in Dermatitis Herpetiformis
      31

      Cycle of dermatitis herpetiformis


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,242
    • Most Online (within 30 mins)
      7,748

    Linda Santa
    Newest Member
    Linda Santa
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Whyz, You're in the "hurry up and wait"  part of diagnosis.  The anxiety can be hard to deal with.  Do you have a hobby?  I like knitting.  Watching suspense movies (Alfred Hitchcock movies are a favorite) helps focus that anxiety which gets resolved by the end of the movie, a temporary relief, but helpful. I have a small hernia, which won't get any attention, too.  Not to worry.  Mine hasn't been an issue for years.  Don't worry.  You'll be fine.  The tribe here understands.  Sending {{{hugs}}}
    • ShariW
      I don't react to corn in general. I think it was cross-contact in manufacturing that got me. But if I do find that I have problems with gluten-free grits, I will see corn elimination in my diet will solve the issues.
    • knitty kitty
      @ShariW, Some of us react to corn the same as we react to gluten because maize and gluten share some similar segments which trigger the Celiac autoimmune response.   Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/#:~:text=The current treatment for celiac disease,%2C a maize-free diet. And... The Prevalence of Anti-Zein Antibodies: A Comparative Study between Celiac Disease and Irritable Bowel Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC7922782/#:~:text=Another important conclusion was derived,IgA antibody test [38].   This is one reason I suggest a Paleo diet, the Autoimmune Protocol diet (designed by Dr. Sarah Ballantyne, a Celiac herself).  The AIP diet cuts out all grains and pseudo grains for several months so the body will be less likely to trigger on proteins similar to gluten.  Following the low histamine version of the AIP diet is very helpful in reducing histamine which lowers inflammation and promotes healing.
    • trents
      I have concern as well about the long term use of any PPI. I understand it was given to you to address the GERD but PPIs were never intended to be long term solutions. Yet, docs prescribe them like candy and never monitor for the ongoing need. They just leave people on them indefinitely which has long term negative health consequences from raising gut PH such as osteoporosis and other nutrient deficiency related problems. Raising gut PH (lower acidity) inhibits digestion and the assimilation of nutrients. I was on a PPI for years and weaned myself off of it in about a year. It was not easy because you get rebound, typically, that is. I used TUMS as a bridge.
    • knitty kitty
      Have you tried Niacin?  The form of niacin that causes flushing, nicotinic acid (not the same as nicotine in cigarettes) helps clear the tTg 3 IgA deposits out of the skin which causes the dermatitis herpetiformis blisters.  (tTg 2 IgA is what blood tests for Celiac Disease measure).  Niacin really helps heal and improve skin health.  Niacin along with Benfotiamine (a form of thiamine that promotes intestinal healing), Vitamin C, Vitamin A, and a B Complex supplement really works.  Don't take over 500 mg total per day of flushing Niacin.  Small doses throughout the day, like with meals or snacks, helps immensely.   Vaccinations for Covid and other diseases like the flu or RSV can cause a drop in Thiamine.  Niacin cannot function without Thiamine.  Replacing vitamins that we aren't able to absorb properly due to the malabsorption of Celiac is essential for healing.  
×
×
  • Create New...