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

Negative Test - Need Some Advice

beanbird

Recommended Posts

beanbird Rookie
beanbird
Posted

Hi Everyone,

I'd be really grateful if anyone could give me some advice on what to do.

I went gluten-free for 2 months (I felt AMAZING!), then started a gluten challenge, I managed to get 3.5 weeks in before I decided I couldn't face anymore, and got tested. Although my digestive symptoms weren't quite as bad as they had been before I went gluten-free, I had a whole host of other symptoms I couldn't cope with, (continuous stabbing pains, itchy skin, achy joints, and feeling depressed).

I got my results back yesterday, negative, and I am gutted. Although I know it was unlikely I would get a positive, I had hoped some how it would be. I knew I had to keep on eating gluten until I got my results, I have a docs apt in 3 days now, and I know they would retest me when I have done the full 6 weeks (I'm not at 4.5 weeks eating gluten), but I'm not sure if it is worth it. I feel like just going gluten-free, after all getting a positive result sounds like hardwork!

So what would everyone do? Just go gluten-free now? or wait another 1.5 weeks, get another test done?

I was looking at the EnteroLab website, and wondering if I should find a UK equivalent (I am in England) and try that route of testing.

I am just so drained from all this gluten, I am so depressed and I have no fight left in me. :(

Thanks for listening.

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

Gluten intolerance is much bigger than just celiac disease. Just because you didn't test positive for celiac, does not mean you are not gluten intolerant. Scientists have, so far, only been able to create testing for celiac, they do not have a test specific to gluten intolerance yet. Did you have gene testing done? There are many genes specific to gluten intolerance.

If you want to have Enterolab testing done, then go for it...many people feel better once they have this testing done, it gives them answers that simple celiac testing doesn't give. I did not have the money to be tested 9 years ago when I went gluten free. I did have gene testing done last year, and I have double DQ1 genes, which are gluten intolerant genes.

If gluten free makes you feel amazing, then truthfully, that should be your answer.

ang1e0251 Contributor
ang1e0251
Posted

I haven't been tested because I don't think I could take a challenge long enough for it. I was gluten-free about 6 months when I was financially able to be tested. I don't care about the test, I'm just glad I feel like a normal person again.

Archived

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

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

  • Member Statistics

    • Total Members
      133,431
    • Most Online (within 30 mins)
      7,748
    Dave162
    Newest Member
    Dave162
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      just a few days off of that drug and my digestive system is finally getting back to normal stopping the gluten challenge was not enough to get back to normal, I was still horribly constipated with what seemed like a paralyzed digestive track- nothing was moving! but now, with a few mag citrate capsules that I had to order online and stopping the chlorthalidone, things are getting back to my usual "working well" digestion   so it's clear that the symptoms I had during the gluten challenge were compounded by the new med that was started the same day (I feel like the Dr really should have known better than to do those two things at the same time, add a new drug and start a new diet protocol... but I'm just the patient, what do I  know, right?)   I am going to do another 24 hr urine in a few weeks to see if lowering the dose of vit D gets my urine calcium down to a more tolerable level. that's the plan.  hope it works.  
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Keep it up.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oh geez!! i made a whole long detailed post and it didn't save it   I give up grrrrrrrrrrr  
×
×
  • 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.