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Gi Doctor Info - What To Expect
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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...

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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 :)

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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.

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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?

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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.

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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.

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    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
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