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

Advice For Upcoming Dr. Appt.


Maggie Simpson

Recommended Posts

Maggie Simpson Newbie

Hi. I am new to this site and just learning about Celiac. I have never been diagnosed but after learning more about it, it sounds more and more like what I have. I am scheduled to see my doctor next week and want to be prepared with what I need to request in terms of testing so that I can hopefully find out what is wrong with me.

I have a history of digestive problems for the past 10 years. I have seen tons of doctors, had ultrasounds for my gallbladder because from time to time I experience pain in my abdomen, kind of high up under my ribs, to the right side. The scans always come back fine. I've been put on Protonix several times and nothing seems to really make the problem go away. I am definitely lactose intolerant and that issue seems to have gotten worse within the past couple of years. Since last Spring I've been experiencing problems every time I eat. I get bloated and have a hard time digesting my food. I get a very gassy tummy to the point of it being painful and then diarreah. (This is when I am eating non-dairy food). I am also experiencing extremely itchy skin (no rash) but VERY itchy, sometimes with small hives. I have also recently developed food allergies and have to carry and epi pen with me at all times. I can no longer eat fish, certain types of nuts and some fruits. Also noticed that after eating certain cereals or wheat crackers it made me feel very ill with lots of tummy issues. I'm tired of not feeling good :-(

Please reply if you have experienced similar problems or have any advice. I'm afraid my doctor will not be so willing to test me unless I have more information or am more prepared on what to ask.

Thanks!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
Hi. I am new to this site and just learning about Celiac. I have never been diagnosed but after learning more about it, it sounds more and more like what I have. I am scheduled to see my doctor next week and want to be prepared with what I need to request in terms of testing so that I can hopefully find out what is wrong with me.

I have a history of digestive problems for the past 10 years. I have seen tons of doctors, had ultrasounds for my gallbladder because from time to time I experience pain in my abdomen, kind of high up under my ribs, to the right side. The scans always come back fine. I've been put on Protonix several times and nothing seems to really make the problem go away. I am definitely lactose intolerant and that issue seems to have gotten worse within the past couple of years. Since last Spring I've been experiencing problems every time I eat. I get bloated and have a hard time digesting my food. I get a very gassy tummy to the point of it being painful and then diarreah. (This is when I am eating non-dairy food). I am also experiencing extremely itchy skin (no rash) but VERY itchy, sometimes with small hives. I have also recently developed food allergies and have to carry and epi pen with me at all times. I can no longer eat fish, certain types of nuts and some fruits. Also noticed that after eating certain cereals or wheat crackers it made me feel very ill with lots of tummy issues. I'm tired of not feeling good :-(

Please reply if you have experienced similar problems or have any advice. I'm afraid my doctor will not be so willing to test me unless I have more information or am more prepared on what to ask.

Thanks!

Hello Maggie and welcome!

Here are the test that you doctor will need to request:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

As you may know, Celiac is not all that rare as thought several years ago. One in every 133 people have Celiac and many more go undiagnosed.

The site index here if full of information that you can present to your doctor. Remember that you are the paying customer and if you would like these test run, ask/demand that it be done.

Hope this is helpful.

Maggie Simpson Newbie

Thank you for your reply. This is really helpful as I ended up having a scheduling conflict so my appointment has been moved to tomorrow morning! Thank you again!

Hello Maggie and welcome!

Here are the test that you doctor will need to request:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

As you may know, Celiac is not all that rare as thought several years ago. One in every 133 people have Celiac and many more go undiagnosed.

The site index here if full of information that you can present to your doctor. Remember that you are the paying customer and if you would like these test run, ask/demand that it be done.

Hope this is helpful.

Maggie Simpson Newbie

Went to the doctor this morning. I think I must be at the end of my rope with this as I have never been so emotional when trying to discuss my symptoms. I was in tears when trying to explain how horrible I am feeling.

I requested the blood test panel that you recommended. She ordered that plus tests for thyroid, food allergies and is also checking my vitamin levels (especially B12). I should have an answer back in a week. In the meantime, I asked about starting a gluten-free diet. She said I could, but suggested that I wait for the results. I purposely ate cereal and wheat crackers yesterday knowing that I would be taking the test today. Of course, my tummy bothered me bad and later on in the evening I got the itchy skin again, and also had small bumps around my elbows and on the back of my legs right above my knees.

Lisa Mentor

Maggie, the blood panel is not 100% accurate, but the other support tests that you doctor ordered may indicate that something is "cooking".

If you can handle gluten another week, try to tough it out until your results return. Your doctor may want further celiac testing (endoscopy/biopsy) or the result may lead you in another direction.

Either way, spend some time here learning all you can and feel free to ask any questions you may have.

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. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      EMA Result

    2. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      EMA Result

    3. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Have I got coeliac disease

    4. - mike101020 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      EMA Result

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

    • Total Members
      133,161
    • Most Online (within 30 mins)
      7,748

    Cynthia Louise Kennedy
    Newest Member
    Cynthia Louise Kennedy
    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

    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
    • trents
      Welcome to the celiac.com community, @mike101020! First, what was the reference range for the ttg-iga blood test? Can't tell much from the raw score you gave because different labs use different reference ranges. Second, there are some non celiac medical conditions, some medications and even some non-gluten food proteins that can cause elevated celiac blood antibodies in some individuals. The most likely explanation is celiac disease but it is not quite a slam dunk. The endoscopy/biopsy is considered the gold standard for celiac disease diagnosis and serves as confirmation of elevated blood antibody levels from the blood testing.
    • Wheatwacked
      Vitamin D status in the UK is even worse than the US.  vitamin D is essential for fighting bone loss and dental health and resistance to infection.  Mental health and depression can also be affected by vitamin D deficiency.  Perhaps low D is the reason that some suffer from multiple autoimmune diseases.  In studies, low D is a factor in almost all of the autoimmune diseases that it has been studied in. Even while searching for your diagnosis, testing your 25(OH)D status and improving it my help your general wellness. Vitamin D Deficiency Affects 60% in Britain: How to Fix It?    
    • mike101020
      Hi, I recently was informed by my doctor that I had scored 9.8 on my ttgl blood test and a follow up EMA test was positive.   I am no waiting for a biopsy but have read online that if your EMA is positive then that pretty much confirms celiac. However is this actually true because if it it is what is the point of the biopsy?   Thanks for any help 
    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
×
×
  • 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.