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
jimbob2225
Posted

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
twe0708
Posted
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
JillianLindsay
Posted

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
jimbob2225
Posted
  • Author
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
JillianLindsay
Posted
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
modiddly16
Posted

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
jimbob2225
Posted
  • Author
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
Dagwood
Posted
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.

Go to topic listing

  • 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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    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

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.