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

Biopsy Results


kunger

Recommended Posts

kunger Rookie

I recently had a an upper endoscopy for celiacs and got the results back today. The doctor took 16 biopsies and said my esophagus and stomach were red and irritated. From the 16 biopsies the results came back unremarkable. I have acid reflux and I may have eosinophilic esophagitis. I tested negative for celiacs in the biopsy and blood work. I do however have the genetic marker for celiacs and my mom has celiacs. Has anyone else had this happen and what did you do? I have been told by some that I should go gluten-free and also get a food allergy test. 

TIA

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

(I am going to pretend that you are my kid.)

"Whew!  I am so happy that they did not find celiac disease damage.   What a relief!  I am bummed that we still did not find the root cause of your issues.  I know that you are not crazy and you are not feeling well. There must be a reason why your celiac blood test was positive.     I am still going to suggest continued celiac testing in the future, because you can still develop it at any time in your life.  Maybe celiac disease is just starting, who knows? What I would recommend (as your mother who has celiac disease) is to trial a gluten-free diet for three to six months.  See how you feel.  It will not hurt you as long as you eat a varied diet full of fruit, veggies, fats and proteins.   Based on your symptoms, maybe you need a pill camera to fully check things out?  Your cousin Angela was diagnosed with Crohn's this way and we were all sure she had celiac disease.   We'll check out allergies too since many of your cousins all have epi pens (nuts, exercised induced asthma, insect stings) and insure you are not developing any other autoimmine disorders.   We just need to keep advocating for your health.  Hugs!"

cyclinglady Grand Master
10 hours ago, kunger said:

I recently had a an upper endoscopy for celiacs and got the results back today. The doctor took 16 biopsies and said my esophagus and stomach were red and irritated. From the 16 biopsies the results came back unremarkable. I have acid reflux and I may have eosinophilic esophagitis. I tested negative for celiacs in the biopsy and blood work. I do however have the genetic marker for celiacs and my mom has celiacs. Has anyone else had this happen and what did you do? I have been told by some that I should go gluten-free and also get a food allergy test. 

TIA

 

You stated in previous posts that your celiac blood test was positive.  Just a typo in this post?  

Chemist89 Rookie

As cyclinglady suggested, keep your celiac panel checked. If your biopsy is negative, maybe it's gluten sensitivity, which has no test yet: it's a disease of exclusion.

A famous Italian gastroenterologist explained that, at the moment, there are no specific markers for gluten sensitivity and the only immunologic alteration you COULD possibly find is the positivity to first generation antigladin ab (AGA class of IgG, rarely IgA), which result positive in the 40-50% of patients with this sensitivity. On the genetic level 50% of the cases are positive to HLA-DQ2 and/or DQ8, this goes up to 99% with celiac disease and however the 30% of the entire population is positive.

(hope my translation is understandable!)

 

Cyclinglady may I ask you: Angela had any skin symptoms? What test do you need to insure you are not developing an autoimmune disorder?

 

 

cyclinglady Grand Master
9 minutes ago, Chemist89 said:

As cyclinglady suggested, keep your celiac panel checked. If your biopsy is negative, maybe it's gluten sensitivity, which has no test yet: it's a disease of exclusion.

A famous Italian gastroenterologist explained that, at the moment, there are no specific markers for gluten sensitivity and the only immunologic alteration you COULD possibly find is the positivity to first generation antigladin ab (AGA class of IgG, rarely IgA), which result positive in the 40-50% of patients with this sensitivity. On the genetic level 50% of the cases are positive to HLA-DQ2 and/or DQ8, this goes up to 99% with celiac disease and however the 30% of the entire population is positive.

(hope my translation is understandable!)

 

Cyclinglady may I ask you: Angela had any skin symptoms? What test do you need to insure you are not developing an autoimmune disorder?

 

 

Angela had only abdominal pain every few months or so.  Painful enough to go to the ER (nothing found) many, many times.  Her trigger seemed to be fun events like traveling.  Wierd, huh?  She did not exhibit any of the typical Crohn's symptoms at all (kind of like me having celiac disease with no gut issues when i was diagnosed).  The damage was pretty severe and was found at the end of her small intestine before going into the colon.  A spot that an endoscopy or colonoscopy could not reach.  Her GI was shocked that she did not have daily pain.  

Here is a link that is good about explaining AI testing.

Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      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
      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
      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
      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
      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...