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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is it worth getting tested?


Tbetteridge

Recommended Posts

Tbetteridge Newbie

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):
Smith & Truslow
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
GliadinX


Fundog Enthusiast

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

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

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
  On 7/13/2016 at 12:29 AM, 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. 

Expand Quote  

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

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
  On 7/13/2016 at 5:16 PM, 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!

Expand Quote  

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):
Authentic Foods
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
Lakefront Brewery


mama.liz07 Apprentice

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

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

cashs mom Rookie

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.


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,025
    • Most Online (within 30 mins)
      7,748

    kdking61
    Newest Member
    kdking61
    Joined

  • Celiac.com Sponsor (A20):
    Holidaily Brewing Co.


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Daura Damm



  • Upcoming Events

  • Posts

    • KimMS
      Thanks for sharing that site! Do you know if that site has any information about manufacturing/possible cross contact on it? I can't find it. When I have called manufacturers, most of them say they can't guarantee no cross contact in manufacturing (except Lannett, Mylan and possible Amneal, which aren't available near me).
    • Diana Swales
      After years of living with Celiac Disease, learning through every bump and breakthrough, and guiding others through the gluten-free maze — I've officially qualified as a **Nutrition Coach** with Precision Nutrition. Now I’m ready to take this journey deeper… but I need your help. To complete my final certification hours, I’m offering **a limited number of FREE spots** (yes, completely free!) to work with me over the next few weeks. I’m looking for **5 people** who: Are newly diagnosed with Celiac Disease or gluten-intolerant Feel overwhelmed, confused, or frustrated with food Want support from someone who truly understands Are ready to build confidence and calm in their daily eating We’ll...
    • Dora77
      Hi everyone, I have celiac disease and I’m asymptomatic, which makes things more stressful because I don’t know when I’ve been glutened. That’s why I try to be really careful with cross-contamination. For almost a year, I’ve been having yellow/orange floating stools consistently. I’m not sure if it’s related to gluten exposure or something else going on. I’ve been trying to identify any possible mistakes in my routine. Today, I made myself some gluten-free bread with cheese. Normally, I’m very careful: I use one hand to handle the cheese packaging (which could be contaminated, since it’s from the supermarket and was probably sitting on a checkout belt that had flour residue)...
    • Mswena
      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill...
    • Mswena
      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
×
×
  • Create New...