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

Defeated...


pewpewlasers

Recommended Posts

pewpewlasers Rookie

I went to the doc last week to ask for celiac tests and what the doc's opinion was.

She said my symptoms sound like celiac-sprue and ordered blood work and an ultrasound of my abdomen. I'm paying everything out of pocket for this so I decided to wait on the ultrasound until my blood work came back.

They call me a couple days later saying I have mono and to drink plenty of fluids and get rest.

Mono?

I asked to be tested for Celiac, which they didn't. So that was a waste of $350.

The doctor was left a note to call me back, which she still hasn't done.

I have another appointment next week with the same doctor and I don't know if I should even see her again.

Where would they think to test for mono when I told them I've been having syptoms for years and for the past 14 months I've had the worst fatigue of my life and have been getting migranes and other terrible symptoms after I eat.

I'm not a doctor but I don't think that if I am sick from mono and have been on a gluten free diet for a couple weeks, have been feeling better, and accidentally ate something with gluten in it and suddenly got sick, had a migrane, felt nauseous, and couldn't get out of bed the next day.

Should I go to another doctor or just go to my next appointment and tell them to stop wasting my money and test me for celiac?

I want to know what it wrong with me.

I am tired of seeing doctors for years who try to bandaid things.

She offered me medicine for my migranes and said they would make me sleepy....

ummmm HELLOOOOOO!!!! I don't need to be anymore tired then I already am. I already feel like a zombie half the time and half the reason I know I'm still alive most of the time is because my head is throbbing even after popping tylenol all day.

Sigh...

I am so frustrated.

I would say screw it all and stay on my gluten free diet and stop getting frustrated with doctors but I want to rule out Crohn's and other things because it all runs in my family. I am 24 years old and would like to catch it now and make myself healthy NOW. I've seen the problems Celiac has caused after years and years of being left untreated in my Mother and I don't want those problems.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Sorry you are having such a hard time with Doctors.

You ALWAYS have options nowadays.

I use either diectlabs.com or healthcheckusa for my labs.

You can also get genetic tests through Enterolab or Kimball.

YOU DO NOT NEED A DOCTOR FOR THESE.

Or you can just stay gluten-free and live your life. BUT if you want answers, you can get tests on your own so you dont waste anymore of your money.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,274
    • Most Online (within 30 mins)
      7,748

    pgibson417
    Newest Member
    pgibson417
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
    • RMJ
      It is more likely code for “we think there really was a good response to the treatment, but it was small or in a small percent of subjects so it would take a large clinical trial to try to prove it.”
×
×
  • Create New...