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. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results

    2. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    3. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    4. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      3

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    jscal6
    Newest Member
    jscal6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • 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.