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

I Had My Doctor's Appointment!

jester

Recommended Posts

jester Rookie
jester
Posted

And I LOVE my new doctor's office. The whole office was very nice and super professional.

The doctor I met with listened and asked questions and let me go through my list, asking about correlations and if I had noticed X or anything, treating me like I had a brain. It was lovely. I mentioned wanting to be tested for celiac and he said absolutely; said he was glad I mentioned the rash because that's not uncommon with celiac; he consulted one of the other doctors in the practice who I then met and he asked me some follow up questions and they both prodded my tummy.

They said together that it sounds like there's definitely signs of malabsorption. He started out with thyroid tests and an anti-gliadan panel, I THINK it's the full set of tests but that's how it was listed on my lab sheet. I'm somewhat surprised he didn't toss in iron and vitamin levels but as he put it, we're just getting started and he'll call as soon as he has results and with any luck we might even have a diagnosis before my appointment with the GI on 10/27.

SUCH a difference in attitudes. Being open to possibilities and not just writing me a prescription for symptoms? Holy cow! A real doctor!

So now I wait. When he calls I will ask what exactly my results are, not just pos or neg, and share them, and that way too I can confirm that the full panel was run - like I said, I think so, it did say panel. I didn't check explicitly at the lab because there was nothing they could have done if it wasn't the full set, so if it's not I can talk to the doctor himself when he calls.

I appreciate that as soon as he heard that my mom has thyroid problems he didn't just dismiss other options. My old doctor would have.

(That said, it's highly likely I do have a problem with my thyroid, but it wouldn't account for everything the way celiac would.)

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

Celiac.com Sponsor (A8-M):


jester Rookie
jester
Posted
  • Author

Oh! Also as soon as I mentioned I'd been on prescription antacids for a year and finally stopped taking them because they weren't working, he asked if I just had heartburn or also reflux and when I said reflux he said we're probably going to want to scope to check how the lining of your stomach and throat are holding up.

I was first diagnosed with GERD and given those antacids in... 2007? 2008? And this is the first time anything like that's even been mentioned. Stoopid old doctor. Why did I put up with him so long?

And I wanted to add I've been dutifully charting for a week now, food, how I'm feeling and bowel movements.

Here's something.

I only had a bit of gluten Tues/Wed and by Thurs morning wasn't feeling so horrible. But since I knew I'd probably get my lab done today I figured let's see what happens if I make sure to eat lots of gluten all day Thursday. So I did.

After my appointment I went to brunch with a friend, had a muffin, came home and had to lie down. I took an hour and a half nap and felt like I had last week (before my D stage on Tues), back to completely bloated and going to vomit and heartburn and everything. I had a lot of cheese, though, so I'm going to see about cutting dairy completely (NOOOO! I love cheese), too?

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad to hear the appointment went well. If you have been gluten light please let the doctor know as that will cause a false negative on the testing. I would call and ask if they want you to go back on gluten until the testing is finished. Dropping or limiting dairy might be a good idea if it is causing you distress but please don't drop gluten until your testing is done.

jester Rookie
jester
Posted
  • Author

I was only gluten-lite for maybe thirty-six hours or so, inadvertently. I can assure you I've been devouring gluten like crazy otherwise.

ravenwoodglass Mentor
ravenwoodglass
Posted

I was only gluten-lite for maybe thirty-six hours or so, inadvertently. I can assure you I've been devouring gluten like crazy otherwise.

That's good. There are so many false negatives that 'devouring gluten like crazy' may make you feel like crud but it will give a better chance at an accurate test. I hope your done with testing soon so you can get started on a strict trial and hopefully feel better.

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. heart390
      - heart390 replied to heart390's topic in Introduce Yourself / Share Stuff
      6

      Why now?

      THANKS again!!!
    2. trents
      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
      6

      Why now?

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    3. heart390
      - heart390 replied to heart390's topic in Introduce Yourself / Share Stuff
      6

      Why now?

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago. The gluten will be my 4th autoimmune disease. Thanks so much for all your input!!!
    4. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Confused about HLA-DQ Celiac gene test result

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me...
    5. trents
      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
      6

      Why now?

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,437
    • Most Online (within 30 mins)
      7,748
    Thomasine
    Newest Member
    Thomasine
    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

    • heart390
      Why now?

      By heart390 · Posted

      THANKS again!!!
    • trents
      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
×
×
  • 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.