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

Totally Confused


Twister2

Recommended Posts

Twister2 Contributor

Hi all. I am now officially confused about my condition. I tested positive for Gliadin Antibodies in October and I just recently had the Endoscopy which turned out to be negative. My GI told me that there was no evidence of Celiac disease on the Endo. I am now totally confused because I am sick as a dog EVERY time I eat anything with gluten in it. My mother and two of my sisters are antibody and Endoscopy positive for Celiacs. All of them are terribly ill. I have the same symptoms, such as severe bloating, muscle and stomach pain, skin itching, mouth sores, severe fatigue, numbness and tingling in my hands and feet and sometimes I have coordination problems in my hands also. I am just wondering if I actually have Celiacs now after the negative biopsy. Anyone have any thoughts????


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



Celiac.com Sponsor (A8-M):



Tasha2004 Contributor

I'm on this track now, except only one Gliadin test is elevated and I dont feel anything different if I eat gluten.

In your case, I would just do it.

If you need a firm confirmation you can go to a private lab and have the stool tests.

They told me one elevated gliadin blood test indicates Celiac may develop, but not necessarily.

However, if you are already sick from the gluten what do you have to lose?

I think the private lab tests are a better bet, but they are too pricey for myself at this time.

Guest jhmom

A negative biopsy means NOTHING! If you have positive blood work you should be gluten-free! Some people can have positive blood test and negative biopsies and vice versa. If you need a dx then a stool panel test from www.enterolab.com is what I would do, it is accurate and more sensitve than blood.

If you do not need a dx from a doctor then try the gluten free diet for a couple of months and if your health improves, you need no further testing!

I hope you begin to feel better soon! :D

lovegrov Collaborator

Go gluten-free and see what happens.

richard

  • 3 weeks later...
Kate107 Newbie

I've had two negative blood tests - the first one was following a mostly gluten-free diet, so I had to have a second one after a six week gluten loaded diet. After the second test, I cleared out the gluten regardless of the test, because I was just so sick of feeling lousy. After a few days, I figured "Oh, what the heck - this must be all in my head," and I snacked heavily on cereal one evening. Now two days later, I'm queasy, gassy, I was first constipated and then had explosive, gassy diarrhea. According to the doctor's office, there was no change in my blood test results. What's going on??? I want to see the test results for myself - if the numbers are any higher, even if they're still within the normal range, does that mean anything? And why, during the six weeks of gluten challenge, did some of my symptoms settle down?

darlindeb25 Collaborator

you can be gluten intolerant and not have full blown celiacs yet, but if you remain eating the gluten, in time you will be full blown and it takes even longer to feel better--go gluten-free and feel good--forget the test--deb

tom Contributor

Twister ! Go gluten-free !

Kate ! The blood test has a horrible rate of false negatives. But i'd never imagined a celiac could have symptoms "settle down" during a gluten challenge. Tho now that i think of it, I used to (several years ago) be able to have some gluten w/out getting symptomatic tho i would have the common symptoms w/ a greater amount of gluten.

So there WAS, for me, a time where a gluten-challenge could proceed very differently, depending on the amount of gluten involved. How much gluten were u ingesting for the challenge ?


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,592
    • Most Online (within 30 mins)
      7,748

    Vic Allen
    Newest Member
    Vic Allen
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • amantelchi
      I'd like to clarify: Is the pain you describe in the area just below your chest constant, or does it only appear when you start moving?
    • Jmartes71
      Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.
    • knitty kitty
      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • Flash1970
      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.