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

Gi Doctor Info - What To Expect

Michelle L

By Michelle L
in Doctors

Recommended Posts

Michelle L Apprentice
Michelle L
Posted

I've been gluten free for about four months now....somewhat self-diagnosed because other doctors wouldn't listen.

But, I have still have continual trouble gaining weight and a lot of bowel movements, so I am going to a GI doctor in 2 weeks. So I'm not going in to ask or figure out if I have celiacs...because I know for sure I am atleast gluten intolerant via my nutritionist and myself...and I cant go back to eating regular foods to get my intestines checked.

What should I expect the first appt. going in? For those who started the gluten free diet themselves, and then went and got checked by a GI / doctor...what happened? Did they do any tests on you to make sure everything was going okay / or to see if you had any deficiencies? Did they prescribe you anything or send you to another doctor?

Just wondering what to expect...hopefully this doc will realize gluten is a real problem...

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Well, perhaps I should turn the question around and ask you, what do you expect of this doctor? What are you consulting him for? What is it that you wish him to do for you.

As you stated upfront, you are not looking for a diagnosis because you have already determined what is causiing your problems. Do you want him to verify the diagnosis? Do you want him to suggest additional testing that should be done? You are really going to be in control of this appointment depending on what it is you are seeking from the doctor. I do think you should be clear on this in your own mind going on, because that will determine what course the consultation takes. You can't just walk in and say, Hi. :rolleyes:

Presumably you would be looking for testing for any possible nutritional deficiencies, you would probably like a DEXA scan to check on your bones (he may want to delay this until he says your Vit. D levels). and you probably want your thyroid function tested because gluten can screw this up. Depending on your doctor's level of expertise in celiac, you can expect just about anything. Many doctors do not like patients diagnosing themselves, many do not believe in gluten intolerance vs. celiac disease, many of them barely know the symptoms of celiac. So you should take with you a list of the common celiac symptoms and highlight those which you had. You should explain your continuing problems not yet alleviated by the diet,. You could ask him if he has any suggestions to offer for your future care. You could ask him if he has someone (dietician / nutritionist) to refer you to for help with your diet and to make sure you are getting the right nutrition.

But you do have to get it clear in your own mind why you are going to see him :)

mark5767 Newbie
mark5767
Posted
Just wondering what to expect...hopefully this doc will realize gluten is a real problem...

That might take some time and testing. Two tests my doctor recommended right away were a CT scan and an upper endoscopy. Both of these are expensive, time consuming and a little intimidating. But if you are experiencing serious symptoms like I was I would not hesitate to have these done. The CT scan was not so bad and I'm guessing it did rule out a few things like massive tumors in my gut.

Since I was feeling pretty good after the CT scan I delayed scheduling the endoscopy since that sounded pretty harsh. But soon I was suffering to the point I scheduled the procedure as soon as possible. It was quite unpleasant, but totally necessary. The doctor was able to clearly see the damage to my small intestine and even made me look at the pictures. Yuck.

So while I might have a bunch of questions I'm seeking answers to regarding healing, diet, etc, my doctor was able to state with "100% certainty" that I had celiac disease and gluten was causing severe damage to my gut.

Michelle L Apprentice
Michelle L
Posted
  • Author

That might take some time and testing. Two tests my doctor recommended right away were a CT scan and an upper endoscopy. Both of these are expensive, time consuming and a little intimidating. But if you are experiencing serious symptoms like I was I would not hesitate to have these done. The CT scan was not so bad and I'm guessing it did rule out a few things like massive tumors in my gut.

Since I was feeling pretty good after the CT scan I delayed scheduling the endoscopy since that sounded pretty harsh. But soon I was suffering to the point I scheduled the procedure as soon as possible. It was quite unpleasant, but totally necessary. The doctor was able to clearly see the damage to my small intestine and even made me look at the pictures. Yuck.

So while I might have a bunch of questions I'm seeking answers to regarding healing, diet, etc, my doctor was able to state with "100% certainty" that I had celiac disease and gluten was causing severe damage to my gut.

Since ive already been gluten free for four months...do you think they would still want an endoscopy? I know some healing has probably taken place...but do you think a doctor would recommend that to see how my intestines are healing?

mark5767 Newbie
mark5767
Posted

The endoscopy recommendation I think will depend on your symptoms. If you are experiencing chronic, serious issues that likely could be a result of something wrong in your stomach and/or small intestine then it's probably worth doing the procedure. They are able to view the condition of the tissue and also take biopsies so it's pretty good information.

That said it's not a procedure to take lightly, there are risks with it and it's not fun at all. In my case, I was in enough pain that I knew something was seriously not right and I needed to figure out what the heck was going on, so that kind of made the decision for me.

BabsV Enthusiast
BabsV
Posted

Since ive already been gluten free for four months...do you think they would still want an endoscopy? I know some healing has probably taken place...but do you think a doctor would recommend that to see how my intestines are healing?

They may want to go in and check and see if there is anything else wrong...ulcers, gastritis, H. pylori, etc. That might relieve any worry that is it something other than gluten related since you seem to feel that is the main issue.

I've been scoped 3 times. While not the most pleasant experience it really wasn't that bad. As long as you are sedated it is no big deal. I always felt worse from the after-effects of the sedation than the procedure itself.

Archived

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

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


  • Member Statistics

    • Total Members
      130,783
    • Most Online (within 30 mins)
      7,748
    Lorraine M
    Newest Member
    Lorraine M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Waterdance
      Diagnosed gluten allergy but not Celiac

      By Waterdance · Posted

      Hi and thanks for this place to ask questions. I have been diagnosed with a gluten and milk allergy but so far I have no Celiac diagnosis and honestly I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease. I've come here because I'm having problems and you all would be knowledgeable about gluten free diets.   An allergist diagnosed me with a gluten and milk allergy about 15 years ago but she said "if you eat a lot of it, don't worry about it." This haunted me because I did not eat a lot of it but it was in my diet. Going 100% gluten free was daunting so I struggled with lowering my intake and observing results when adding it back. Due to aging, I think, the problem is worse now. I know ingesting gluten almost immediately causes a hemorrhoid flare up. It's very painful and I have severe chronic issues with it and even one surgery which did not solve much and the problem came back with vengeance. I know from my own experiments that I can build a tolerance to gluten in my diet but overall if I want to avoid chronic pain and discomfort I should just eliminate it entirely.   When it comes to my diet, I found not only gluten to be problematic but all grains! This is terrifying to me. Keeping a grain free diet was difficult and left me hungry all the time.   My question for you all is do you have any tips to help me live on a grain free diet sustainably long term? And Do any of you know of or heard of hemorrhoids, constipation and diarrhea being main symptoms to gluten intolerance?
    • Resada
      Work friends & food

      By Resada · Posted

      Yeah, that one is always hard, especially since life seems to revolve around food. That happened to me 2 weeks ago with hibachi and with Hungarian hot dogs. I used to be more picky, but now I would love to try all the things if I could. On the bright side, my husband is absolutely wonderful with it, and his mom often brings a few certified gluten-free things to family get-togethers just for me (and tries to make sure main dishes are safe too). Having the people closest to you be supportive can make a huge difference. 
    • trents
      Work friends & food

      By trents · Posted

      I hear you. My extended family is very good about factoring in my celiac disease safety needs when making family celebration meal plans but sometimes it breaks down in the spur of the moment decisions to "Oh, let's go out and get some teriyaki" or the like. Especially when my brother in law comes into town 'cause he's pretty particular about what he likes to eat. So, sometimes I just say, "You guys go ahead without me. I'll find some leftovers." But, still, I admit to feeling a little left out at such times and a little like a 5th wheel.
    • Resada
      Work friends & food

      By Resada · Posted

      Same, and I appreciate your comments. I just needed to get it off my chest. Sometimes, even when its a genuine mistake, it can feel all too hurtful and I didn't want to go back to work tomorrow still in my feelings. 
    • trents
      Work friends & food

      By trents · Posted

      Yes, probably slipped his mind. Grace is in order here is my thought.
×
×
  • Create New...