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

By Marmee
in Related Issues & Disorders

 Share

Recommended Posts

Marmee Rookie
Marmee
Posted

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
trents
Posted

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
knitty kitty
Posted

@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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Bebygirl01's topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    2. Bebygirl01
      - Bebygirl01 posted a topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    3. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than ...
    4. knitty kitty
      - knitty kitty replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1. Thiamine is needed in the immune response and production of antibodies. Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease. Thiamine can be destroyed by sulfide...
    5. knitty kitty
      - knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Increasing symptoms after going gluten free

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,006
    • Most Online (within 30 mins)
      7,748
    anjie patterson
    Newest Member
    anjie patterson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
×
×
  • Create New...