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

EDG Question and reputable gene test

KarenAgnes
 Share

Recommended Posts

KarenAgnes Rookie
KarenAgnes
Posted

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted
3 hours ago, KarenAgnes said:

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

You are correct.  Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.

KarenAgnes Rookie
KarenAgnes
Posted
  • Author
5 minutes ago, RMJ said:

You are correct.  Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.

Thank you for your reply. I have dedicated years gaining knowledge since I was originally diagnosed and I appreciate the feedback! I agree, need another GI!

Scott Adams Grand Master
Scott Adams
Posted

For some reason many doctors don't seem to know that celiac disease, in most cases, goes into "remission" when on a gluten-free diet, because the offending gliadin has is no longer present, so the runaway autoimmune reaction ceases. Getting retested for celiac disease, whether a blood test or an endoscopy, would require a gluten challenge, where you'd need to eat gluten daily again for 6-8 weeks (blood tests), or 2 weeks (biopsy). 

KarenAgnes Rookie
KarenAgnes
Posted
  • Author
19 hours ago, Scott Adams said:

For some reason many doctors don't seem to know that celiac disease, in most cases, goes into "remission" when on a gluten-free diet, because the offending gliadin has is no longer present, so the runaway autoimmune reaction ceases. Getting retested for celiac disease, whether a blood test or an endoscopy, would require a gluten challenge, where you'd need to eat gluten daily again for 6-8 weeks (blood tests), or 2 weeks (biopsy). 

Thank you for your reply!

Sharib Apprentice
Sharib
Posted
On 5/18/2022 at 10:46 AM, KarenAgnes said:

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

Hi Karen,

What did the doctor base your Celiac diagnosis on back in 2002?  As far as I know, gluten should be eaten prior to an EGD with biopsies of the small intestine.  There is no standardized amount of gluten and/or servings per day or a set duration we must eat the gluten prior to the biopsies.  I asked a few docs and looked it up.  I ate gluten daily for 2 months right up to my EDG at the end of 2020.  The genetic labs are HLA-DQ2 & HLA-DQ8.  Your doctor can order this panel.  I have one that is positive.  Many people have a positive gene and do not have Celiac.  It means you have a predisposition to Celiac, but may not develop Celiac.  Since my biopsies show the characteristic villous blunting,  IEL’s-intraepithelial lymphocytes and crypts with a positive gene & GI symptoms, it was diagnosed as Celiac.  To note, my Celiac labs were negative.  This can happen.  
 

I hope you get to the bottom of this quickly.  I hope you don’t have Celiac.  
 

Take Care!

Shari

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
      129,758
    • Most Online (within 30 mins)
      7,748
    DA.W
    Newest Member
    DA.W
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Still unsure.....

      By Wheatwacked · Posted

      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
    • RMJ
      Any bad experience with King Arthur Gluten-free bread flour

      By RMJ · Posted

      Not all of King Arthur’s gluten free flours and baking mixes are certified gluten free. This bread flour is not. 
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      Bump up your thiamine dose!  You can take more if you don't feel anything after the first one.  Must needs getting to that 500mg. We need more thiamine when we're fighting an infection.  Zinc will help fight infections, too, as well as Vitamin C. They all work together. Hope you feel better!
×
×
  • Create New...