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

Anyone?

tuffnikki

Recommended Posts

tuffnikki Newbie
tuffnikki
Posted

Hi! I'm new here. I've been having lots of problems and suspecting celiac for a while now.

When I tell people my symptoms they look at me strangely.

I was wondering if any of you could relate?

sometimes when i eat certain foods, my stomach will bloat up and ache and it will go through my back and sometimes up my back a little bit. I get really nausiated and sometimes it makes me throw up. The only thing that i have found that will help it is sometimes a heating pad. I've went to the ER once because i was hurting and i wanted to know what was wrong...they didn't do any testing just told me it was a stomach flu. But it happens frequently sometimes happening in "season" so to speak.

I'm not sure if this is related but my immune system is awful. I get everything that comes around and have a hard time gaining weight. I'm only 23 and weigh 89 pounds. I eat all the time just can't gain weight. Does this sound familiar to anyone?

Thanks for the help!

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

Celiac.com Sponsor (A8-M):


GeoffCJ Enthusiast
GeoffCJ
Posted
Hi! I'm new here. I've been having lots of problems and suspecting celiac for a while now.

When I tell people my symptoms they look at me strangely.

I was wondering if any of you could relate?

sometimes when i eat certain foods, my stomach will bloat up and ache and it will go through my back and sometimes up my back a little bit. I get really nausiated and sometimes it makes me throw up. The only thing that i have found that will help it is sometimes a heating pad. I've went to the ER once because i was hurting and i wanted to know what was wrong...they didn't do any testing just told me it was a stomach flu. But it happens frequently sometimes happening in "season" so to speak.

I'm not sure if this is related but my immune system is awful. I get everything that comes around and have a hard time gaining weight. I'm only 23 and weigh 89 pounds. I eat all the time just can't gain weight. Does this sound familiar to anyone?

Thanks for the help!

Sounds like it could be a suspect. I went through a lot of testing to try and figure things out, but you can very simply try a gluten free diet for a few weeks. If you feel better, then you know you are on the right track. Some people stop there. I personally wanted to know as precisely as I could what was wrong with me, so I did blood testing, and endoscopy, and Enterolab testing. Expensive and a pain, but I appreciated, after years of false diagnosis, a diagnosis that I felt relatively certain would be accurate.

Good luck!

Geoff

lonewolf Collaborator
lonewolf
Posted

Welcome!

You certainly sound like you could have a problem with gluten. Ask your doctor to run the Celiac Panel (blood test) for you. Make sure he runs the whole panel - all 5 tests. Hopefully someone will come on here and tell you the exact names of all 5 tests, I'm not sure I'd get it right. Anyway, I'd start with that. After the test, you can either wait to get a biopsy or just try the gluten free diet. Some people need a firm diagnosis, while others are convinced by positive results from the diet. There's always the chance that you could have gluten intolerance without Celiac Disease, which still requires a gluten-free diet, but won't show positive in any traditional test.

jerseyangel Proficient
jerseyangel
Posted

Here are the tests in the Celiac Panel--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Just make sure not to cut down on gluten before the test, if you decide to have it. You need to be eating gluten--if not you will skew the results :)

Best of luck to you.

CMCM Rising Star
CMCM
Posted

Here are the necessary blood tests...I copied this from Danna Korn's www.glutenfreedom.net site.

Blood: The blood test for celiac disease is looking for the following :

AGA (antigliadin) IgA

AGA (antigliadin) IgG

EMA (antiendomysial)

tTG (anti-tissue transglutaminase)

Total serum IgA

Genetics testing - DQ2, DQ8

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. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people...
    2. ainsleydale1700
      - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Thank you, that is helpful!
    3. Scott Adams
      - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    5. ainsleydale1700
      - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer. The doctor said I don't have Celiac genes. I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748
    LexiBusch
    Newest Member
    LexiBusch
    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

    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.