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

Do I Not Have Celiac Disease?


jimbob2225

Recommended Posts

jimbob2225 Newbie

Hi, hope you can help me...

Basically I'm and 18 year old male and I think I have coeliac disease, because I match a number of the symptoms....however, in July I did a self test for the condition (Open Original Shared Link) , and it was negative. Does this mean I don't have it?

Thanks for your time! :)


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



Celiac.com Sponsor (A8-M):



twe0708 Community Regular
Hi, hope you can help me...

Basically I'm and 18 year old male and I think I have coeliac disease, because I match a number of the symptoms....however, in July I did a self test for the condition (Open Original Shared Link) , and it was negative. Does this mean I don't have it?

Thanks for your time! :)

A self test? Why not just get a blood test so you know for sure? Or just go on a gluten free diet and if you feel better, even if you have the blood test and it tells you your not, then stick with gluten free.

JillianLindsay Enthusiast

Hi Jim and welcome,

No test is 100% conclusive for celiac disease. Even the same test done at your DRs office can still show a false negative. The best way to diagnose celiac disease is through an endoscopy (a camera down your throat into your stomach/small bowel). You have to continue eating gluten in order for these tests to be accurate.

Others just choose to go gluten-free to see if it helps. Some feel better very quicly and for others it can take 6 months or up to a year, everyone heals at a different rate. Some need more evidence before taking on a high-maintenance diet, and others are just happy to feel better!

My advice would be to see your family DR first about your symptoms and let a professional make an attempt to diagnose you, but that's easy for me to say because I live in Canada, land of free health care :)

What are your symptoms? If you care to share them here, perhaps people on this forum can be of assistance.

Good luck!

Jillian

Hi, hope you can help me...

Basically I'm and 18 year old male and I think I have coeliac disease, because I match a number of the symptoms....however, in July I did a self test for the condition (Open Original Shared Link) , and it was negative. Does this mean I don't have it?

Thanks for your time! :)

jimbob2225 Newbie
A self test? Why not just get a blood test so you know for sure? Or just go on a gluten free diet and if you feel better, even if you have the blood test and it tells you your not, then stick with gluten free.

it was a blood test....but would one with the doctor's be more accurate? And I heard you should get diagnosed first before cutting out gluten?

thanks :rolleyes:

JillianLindsay Enthusiast
it was a blood test....but would one with the doctor's be more accurate?

Probably, if only because your DR and the technicians would know how to do it properly, however it still can show a false negative.

And I heard you should get diagnosed first before cutting out gluten?

IF you need a diagnosis, then yes, you should continue eating gluten! If you want to test out the gluten-free diet without going through the medical testing, then you can do a trial and see if you feel better. Some aren't able to "rest" until they have an answer, so this isn't a good option if you want an official diagnosis. In that case, a healthcare professional needs to give you one.

modiddly16 Enthusiast

I had a diagnosis but that's only because Celiac Disease wasn't as commonly know about as it is now. If going on a gluten free diet helps you feel better and be symptom free, I wouldn't need a doctor's diagnosis to feel healthy!! If making changes to your lifestyle helps, then I say go for it!

jimbob2225 Newbie
Hi Jim and welcome,

No test is 100% conclusive for celiac disease. Even the same test done at your DRs office can still show a false negative. The best way to diagnose celiac disease is through an endoscopy (a camera down your throat into your stomach/small bowel). You have to continue eating gluten in order for these tests to be accurate.

Others just choose to go gluten-free to see if it helps. Some feel better very quicly and for others it can take 6 months or up to a year, everyone heals at a different rate. Some need more evidence before taking on a high-maintenance diet, and others are just happy to feel better!

My advice would be to see your family DR first about your symptoms and let a professional make an attempt to diagnose you, but that's easy for me to say because I live in Canada, land of free health care :)

What are your symptoms? If you care to share them here, perhaps people on this forum can be of assistance.

Good luck!

Jillian

Thanks for the reply. I'm actually in England so healthcare is not a problem. However, I'm a bit reluctant to go, basically because I went like 10 times to the doctors a few years ago, and their best diagnosis was chronic fatigue (rubbish in my opinion!).

Well the main problem was fatigue that started around 5 years ago - I took a bit of time of school then. However, other problems include

-sickness in the morning occassionally, that I can only just stomach breakfast!

-small heart tremours or something

-mild diziness

-the normal bowel problems - diarrhea, gas, bloated, small stomach cramps etc

-leg ache (especially when younger)

- occassional headaches

-myopia (although this may just be a unrelated problem)

-...and maybe a few more I can't remember.

also, the doctor said I had low iron, and tried to put me on lots of iron which didn't help!

that's more or less it I think

Thanks so much for your help :lol:


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



Celiac.com Sponsor (A8-M):



Dagwood Newbie
I had a diagnosis but that's only because Celiac Disease wasn't as commonly know about as it is now. If going on a gluten free diet helps you feel better and be symptom free, I wouldn't need a doctor's diagnosis to feel healthy!! If making changes to your lifestyle helps, then I say go for it!

I know that gluten free makes me feel much better but have decided to get endoscope and colonoscopy just to make sure everything is ok. I will continue to be gluten free regardless of diagnosis.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.