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

Need Experiences/opinions

momof2sn

Recommended Posts

momof2sn Apprentice
momof2sn
Posted

Hello All,

Everyone here has always been such a great help so I have some more questions.

My daughter is the only celiac in the family. My hubby carries the HLA-DQ8 gene, but has a negative panel test. My son who is NOT celiac had an endoscopy for EE. The esophagus was better, but the intestine had red bumps all over. She said it could be possible celiac. Well, he had a negative panel a couple of months ago. ( he was suppose to have the celiac genetic test and our lab messed up AGAIN!) She did a biopsy of the area. He has no vomitting, diarrhea or constipation. She also wants to do an endoscopy on my hubby now. He has no symptoms either and as I said a negative panel. He does have alot of mucous production during eating and has to blow his nose often. Sometimes that is followed up by sneezing. The doctor said this could be his only symptom. Any thoughts?? Can someone have celiac with no symptoms and a negative panel. Can the doc tell if is celiac with a biopsy??

I appreciate any help!!

momof2sn

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted
Hello All,

Can someone have celiac with no symptoms and a negative panel.

Yes. What blood tests were done?

Silent Celiac is now believed to be MORE common than "classic" (i.e., symptomatic) Celiac. Presence or absence of symptoms, unfortunately, can't rule in/rule out Celiac alone.

Can the doc tell if is celiac with a biopsy??

Usually. The purpose of the biopsy is to rule in/rule out Celiac. It is recommended that multiple biopsies (4-6+) are taken from multiple locations to increase the accuracy rate, as Celiac can be a patchy disease.

momof2sn Apprentice
momof2sn
Posted
  • Author
Yes. What blood tests were done?

Silent Celiac is now believed to be MORE common than "classic" (i.e., symptomatic) Celiac. Presence or absence of symptoms, unfortunately, can't rule in/rule out Celiac alone.

Usually. The purpose of the biopsy is to rule in/rule out Celiac. It is recommended that multiple biopsies (4-6+) are taken from multiple locations to increase the accuracy rate, as Celiac can be a patchy disease.

The celiac genetic testing was done. His pulmonoligist and allergist ordered nearly every food and enviromental blood test as well as immune definicy. I think the GI also does a nutrition test. They took 9 tubes out of the poor guy....they couldn't do it while he was under either. The GI doc mentioned she may have to check his panel every 6 months for awhile. I am concerned about the biopsy because, my daughter the silly, her biopsy was negative!!! Her intestine was visually inflammed and no red bumps like my sons.

momof2sn

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      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
      Disregarded

      By Scott Adams · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      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...