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. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - Theresa2407 replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    3. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    4. - Scott Adams replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    5. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748

    Joanne Ham
    Newest Member
    Joanne Ham
    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

    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
×
×
  • 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.