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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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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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