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

Is it worth getting tested?

Tbetteridge

Recommended Posts

Tbetteridge Newbie
Tbetteridge
Posted

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

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

Celiac.com Sponsor (A8-M):


Fundog Enthusiast
Fundog
Posted

I feel your pain.  Literally, I do.  It all comes down to us each as individuals.  I get "The Rash" and after both blood test and the skin biopsy came out negative, the next step would have been endoscopy.  But I have been fantasizing about a wall "mural" made of sandpaper for 16 years, and had already given myself cellulitis.  Could I stand to go back to eating gluten for three months?  Unthinkable!  So all I know is, gluten makes me want to skin myself alive.  And I'm not alone.  There are several on here who are undiagnosed or self diagnosed.  Good luck in whatever you decide. :)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I'm thinking it won't change my lifestyle, I already avoid gluten like the plague. Two of my children are gluten intolerant as well as have other food allergies. So I know what to look for. For me it came on within the last 6 months. My whole house is now gluten-free, even my husband is on board as he sees how much more pain this causes me. (It doesn't cause my children nearly the pain/symptoms that I get, which is why I think I have celiac vs an intolerance). 

cyclinglady Grand Master
cyclinglady
Posted

Only you can decide if it is worth getting an official diagnosis.  

I can tell you that I am officially diagnosed (3 years).   Just a lucky catch during my GI consult for a routine colonoscopy (Yep, am over 50).  Anemia was my only known symptom.  No tummy issues.  My hubby went gluten-free 15 years ago when my allergist and his GP suggested going gluten free.  It worked.  The first year was a struggle of doubt and cheating on the diet though.  He would be the first to tell you that I have had it easier from family, friends , and medical regarding support.  Will he do a gluten challenge?  No.  He is thankful for my diagnosis.  Now, our daughter gets tested every few years and her doctor does not hesitate to check.  celiac disease is genetic.  It can be symptom free. It can cause unknown damage (I have had fractures from osteoporosis.)  Accommodations from schools (even university dorms), is necessary and a diagnosis paves the way.  

Again, it is a individualized decision.  I wish you well.  

cstark Enthusiast
cstark
Posted
12 hours ago, Tbetteridge said:

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

I am right with you.  I had the blood test and found the intolerance.  However, if I do go for the biopsy (don't think I will), I would have to be on gluten and that sends my body completely out of whack.  I don't have "the rash" of GI issues, but I do experience the neurological side of consuming gluten.  Not fun by any sort of the imagination!

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

cstark Enthusiast
cstark
Posted
18 minutes ago, Tbetteridge said:

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

When you go off gluten and then accidentally get cross-contaminants, your body will go into hyper drive to get the poison out of system because it was starting to get used to operating without the gluten.  It stinks during the reaction time, yes, but hang in there. :) 

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

Celiac.com Sponsor (A8-M):


mama.liz07 Apprentice
mama.liz07
Posted

I'm essentially in the same situation you are, except my blood test came back negative.  I don't think I need the definitive diagnosis to eat like I have celiac (i.e. be really careful and not cheat).  I have two family members with celiac (one with a negative blood test too) and when I went off gluten I felt better than I've felt in years...and then when I ate gluten recently I felt awful again (still do).  My body does not like gluten and I likely have the gene for celiac disease.  I could even get tested for the gene which wouldn't require going back on gluten.  Positive gene, body hates gluten...that'd be enough for me.  But, if you need a more definitive, standard diagnosis I guess you do what you have to do.  Every situation is different.   Hope you feel better soon!  :-)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I have had dna gene testing done, for other reasons and I have both genetic markers for celiac!

cashs mom Rookie
cashs mom
Posted

I went gluten free a year ago to see if it helped with some of the issues I'd been having.  It did help with some, not so much with others.  But overall, I think I'm doing much better without gluten.  It's a personal decision but I've decided not to go back on gluten to have the blood tests done.  There is no cure or treatment other than what I am doing now so I don't see the point of putting myself and my husband thru the misery of going back on gluten just to get a diagnoses.  But as I said, its a personal decision.

Archived

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

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


  • Member Statistics

    • Total Members
      132,203
    • Most Online (within 30 mins)
      7,748
    Sarahmegan
    Newest Member
    Sarahmegan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.