Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

How To Bring It Up With Doctor?

ne-mom

Recommended Posts

ne-mom Newbie
ne-mom
Posted

Hi everyone, I've been lurking on this board for a couple of months now and have found it very informative. A bit of background: for years I have had intermittent spells of nausea, mostly noticeable upon waking. More recently, however, I began randomly having pain in the upper center of my stomach. I would go months without this happening, but a couple of months back it lasted for 3 days and I was miserable. This got me to the doctor who thought it sounded like gallstones (that's what I suspected too) so she sent me for an ultrasound. Well, that turned up nothing. Everything looked fine, no stones, no irritation anywhere in my abdominal region. For the past month or so, though, things have really taken a turn for the worse. I will get instantly bloated after eating, I look like I did when I was pregnant. I get really nauseated and feel a general dull pain all over my stomach. It happened a few nights ago and I'm still not feeling back to normal. It almost feels like I have obstruction somewhere. The only thing that seems to help is drinking really hot tea. Oh, this last episode actually brought on a round of diarrhea, but that really did nothing to relieve the discomfort.

OK, all of this to say, that while I'm not certain, I suspect Celiac. When I think back to the times I've had these episodes, it's been after eating things like seitan, cous-cous, beer or whatever. I will say that eating these things does not necessarily cause it, though. I can go days eating whatever and feeling just fine. So I'm seeing my doctor again tomorrow and am really afraid she's going to give me the IBS diagnosis. I don't know why, but I just feel like this isn't IBS, but something else. So how do I argue my case, so to speak? It's my understanding that most doctors don't just come right out and suggest testing for Celiac disease. Should I just tell her upfront I want to be checked for that? Should I try just changing my diet and going back later if I see any results? This probably seems like a dumb question, but I'm very non-confrontational and also somewhat distrusting of doctors so this isn't a great scenario for me to be in. Thanks for your advice.

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

Celiac.com Sponsor (A8-M):


lynnelise Apprentice
lynnelise
Posted

I would just come out and say that you've been researching your symptoms and that you'd like to be tested for celiac disease. Be aware that the blood tests may not be accurate and sometime even the EGD isn't. If you get a negative result I'd try the gluten-free diet anyhow. My blood tested negative but 90% of my symptoms have cleared up on the diet...especially my stomach symptoms. I'd say 99% of the GI related symptoms have cleared up. It's really amazing.

ne-mom Newbie
ne-mom
Posted
  • Author

Well, as it turns out I got very lucky at the doctor. As soon as I described what had been going on she said it sounded like it could be Celiac disease. She had me do the blood work in the lab today and is scheduling an endoscopy for me. I feel so relieved that I wasn't given the run around and she didn't brush me off. It feels very strange to be looking forward to a medical procedure, so to speak, but I just desperately want to find out what is wrong.

nixie-nox Newbie
nixie-nox
Posted

Well, as it turns out I got very lucky at the doctor. As soon as I described what had been going on she said it sounded like it could be Celiac disease. She had me do the blood work in the lab today and is scheduling an endoscopy for me. I feel so relieved that I wasn't given the run around and she didn't brush me off. It feels very strange to be looking forward to a medical procedure, so to speak, but I just desperately want to find out what is wrong.

I am glad to hear that your dr was open to it. Mine surprised me with it. I get random stomache pain.

Funny you mention the morning. Mine seems to be worse in the morning. But I was pregnant, lol.

Some mornings were so bad I would be curled up in the fetal position, like I had been kicked in the gut.

I always thought it was my meds.

As soon as I got up the nerve to bring it up to the doc(last time got me a barium enema, which I am still horrified from) he instantly brought up celiac.

Doctors are becoming more aware of it. it used to be little known. I did a celiac awareness walk. The only reaon I knew about it is because my step grandmother has it.

But the news is getting out, and you hear more about it. My mum said it is common enough in Italy that most restaurants have gluten free items on their menus.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,131
    • Most Online (within 30 mins)
      7,748
    Itsabit
    Newest Member
    Itsabit
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Does High DGP IGA Typically Mean Celiac?

      By trents · Posted

      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Does High DGP IGA Typically Mean Celiac?

      By Skg414228 · Posted

      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Less than 10 parts per billion issues

      By Scott Adams · Posted

      Yes, these articles may be helpful:    
    • trents
      Does High DGP IGA Typically Mean Celiac?

      By trents · Posted

      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Does High DGP IGA Typically Mean Celiac?

      By Skg414228 · Posted

      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
×
×
  • Create New...