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 JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

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

    • Total Members
      133,141
    • Most Online (within 30 mins)
      7,748

    islaPorty
    Newest Member
    islaPorty
    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
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.