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

Celiac?


JASON

Recommended Posts

JASON Rookie

I have one sister who has celiac and I do. My other sister has been tested through lab work and came back normal. She has bloating, rash once in a while, constipation, headache, muscle ache, pains under the rib cage on right side, itchy shins, lumps on her head(like cysts); she also gets hot hands and feet sometimes. She has had her gall bladder removed. She has done the gluten challenge and felt a lot better. If the Drs. said she is fine; is she really fine even with our family history? Does anybody know what else this could be? How much could stress be involved in this?


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

There was an article in USA Today that even mentioned the false negative rate of the blood test. She could still have it. If she feels better off gluten and has a family history of it, I'd just call myself a celiac and go gluten-free. It's actually better than being diagnosed and having trouble with insurance down the line.

Nantzie Collaborator

I agree. She should go gluten-free. I had negative blood and biopsy and my GI symptoms and neuro issues (I had a hard time walking), and other various symptoms went away after going gluten-free. If celiac runs in the family, she should give the diet a real try because sometimes odd things are related to gluten, and everyone has different symptoms. I had IBS and body pain symptoms which went away after being strictly gluten-free (including avoiding cross contamination), also headaches, insomnia, anxiety/depression/irritability and fatigue. I'm also very sensitive to cross contamination.

My feeling is that anyone who thinks they may have a gluten-related issue, celiac or not, should just try being gluten-free for a while. You never know how it effects you until you try.

Nancy

tarnalberry Community Regular

she has one negative, and one positive - the diet test IS A VALID TEST! she could ignore what her body is telling her and feel crappy, or she could avoid gluten and feel better. :P but yes, false negatives do happen, particularly 'false inconclusives' or tests that are read far too conservatively and don't actually say negative, but the doctors read them that way. has she gotten the actual results, or just the interpretation that was 'negative'?

Guest nini

I agree she needs to be gluten-free. She's had a positive test, positive dietary response. That is THE most valid diagnostic test in my humble opinion. There is too high a rate of false negative test results and with genetic predisposition (you and other sister) and positive dietary response, that is more than enough to call it celiac and go gluten-free and start getting better. The tests are not perfect. Despite what the Medical profession continues to claim.

KaitiUSA Enthusiast

Yea, she should be gluten free. The body is the best test for celiac and she sounds like a celiac.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,881
    • Most Online (within 30 mins)
      7,748

    John Hagan
    Newest Member
    John Hagan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • emily 1
      Very helpful. Oh yes, I am quite fastidious about not falling off the diet. It's just that the list of things I must add to the restrictions seems to grow.   
    • Barcino
      I know this post is old but was wondering if you ever resolved this. My son is in the same situation. Villi healed but gastritis / duodenitis remain and calprotectin elevated. Now testing for crohns which I am freaking out about. 
    • trents
      I did a little research and one kind of aphthous ulcer (aka, canker sore) is the Herpetiform canker sore. It is well-known that celiac disease can cause a skin rash known as herpetiformis dermatitis. I can't help but wonder if there is a connection. Celiac disease is also listed in this article as a cause for canker sores: https://www.mayoclinic.org/diseases-conditions/canker-sore/symptoms-causes/syc-20370615 Are you observing a strict gluten free diet? You might also look into reducing iodine consumption as that is known to help with herpetiformis dermatitis. Perhaps it will help with your canker sores as well. 
    • knitty kitty
      Do you wear an M-95 mask left over from the pandemic when you handle flour? Do you eat out in restaurants? Do you take vitamins?  
    • knitty kitty
      These articles are helpful.
×
×
  • Create New...