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Endoscopy On Wednesday, Doctor Doesn't Think Celiac

strangedays

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strangedays Newbie
strangedays
Posted

Hello,

After a long process, I've finally been referred from my doctor to a GI for an endoscopy this coming Wednesday. I had my consultation today, however, and found out my doctor didn't forward most of my info over so that all the GI knew about me and my symptoms were brief notes from referring doc and what info I could cram into the brief consultation:

He knew I had an h pylori infection in August that was treated with "h-PAC" medication. I told him I've been having abdominal pains, switch between D and constipation, light headedness, and weight gain without a change in diet.

Because I couldn't link the pain I was experiencing to a certain food, he interpreted my symptoms as not having to do with celiac.

When I asked him what he thought was wrong, he said maybe nothing or maybe an ulcer. I really don't think it's either! He also said he might take a biopsy.

I'm worried that after all this waiting, my GI may not really be informed on celiac, and my chance to get a proper dx will be wasted.

When getting an endoscopy done, would there be any visible signs/damage that could point to celiac? Anything that would support the dx? Also, in Ontario, if I asked him to take the biopsy for celiac testing, would he agree? Should I bring a complete list of symptoms with me to show him the day of?

I'm 22 and still learning how to advocate for and take care of myself, so any advice/personal experiences would be greatly appreciated.

-

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iloathegluten Newbie
iloathegluten
Posted

Some of the damage to the instestines may be visible, but a microscopic analysis of the biopsy would be necessary for a diagnosis.

 

Did he check your blood work at all? Or is he ruling out Celiac based off symptoms alone? I would maybe ask for a blood test. Bloodwork usually isn't too expensive, so I should hope he would at least order that on request... If not Celiac Disease, your symptoms could fit many other conditions too. That's the tricky thing with GI stuff. The symptoms often overlap. Definitely keep pursuing answers if your symptoms persist. If he doesn't listen or writes it off as IBS, I would seek a different doctor if at all possible. I've found in my experience with some doctors, once he or she makes up their mind about what you have, they don't change it easily.

 

I can totally sympathize with weight gain. One of the unfortunate things about experiencing involuntary weight gain is that many people assume you're secretely overeating or otherwise lying about your diet habits. I experienced weight gain as one of my primary symptoms a good deal of my life while eating 1,200 calories max a day, and when I started dropping weight like mad with no changes to my diet, my doctors told me they were proud of me and seemed happy I finally took an interest in getting my obesity under control. I ALWAYS had the desire, and I NEVER overate (I was in abdominal pain half the time...), so this was very insulting to me, but there is unfortunately such a stigma with excess weight that can blind even doctors to underlying issues. It's too easy for them to attribute the poor health to weight gain and not look into deeper causes. I regret not being more proactive for myself. Definitely make it clear you haven't made any changes to your diet. Even keep a food diary log to prove it if you can.

 

And as I said, if the doctor quits listening, find a new one. I've had to change mine a few times in order to get somewhere in finding answers for myself!

SkyBlue4 Apprentice
SkyBlue4
Posted

I don't know if I would go through with the endoscopy if I didn't trust the doctor to properly evaluate me. Damage may or may not be visible to the naked eye and biopsies are an important part of the evaluation process. 

 

Did you have a positive Celiac panel? Perhaps you could call the referring doctor who ordered those labs and have them fax over the results to the GI doctor TODAY. I would also pick up a copy of the labs and bring it along tomorrow to the endoscopy.

 

Good luck with everything! 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hello,

After a long process, I've finally been referred from my doctor to a GI for an endoscopy this coming Wednesday. I had my consultation today, however, and found out my doctor didn't forward most of my info over so that all the GI knew about me and my symptoms were brief notes from referring doc and what info I could cram into the brief consultation:

He knew I had an h pylori infection in August that was treated with "h-PAC" medication. I told him I've been having abdominal pains, switch between D and constipation, light headedness, and weight gain without a change in diet.

Because I couldn't link the pain I was experiencing to a certain food, he interpreted my symptoms as not having to do with celiac.

When I asked him what he thought was wrong, he said maybe nothing or maybe an ulcer. I really don't think it's either! He also said he might take a biopsy.

I'm worried that after all this waiting, my GI may not really be informed on celiac, and my chance to get a proper dx will be wasted.

When getting an endoscopy done, would there be any visible signs/damage that could point to celiac? Anything that would support the dx? Also, in Ontario, if I asked him to take the biopsy for celiac testing, would he agree? Should I bring a complete list of symptoms with me to show him the day of?

I'm 22 and still learning how to advocate for and take care of myself, so any advice/personal experiences would be greatly appreciated.

-

 

I generally dislike and distrust doctors, but look at it from his point of view.  He hasn't been given all of the information, so as far as he knows you actually don't have Celiac - you may have something else going on.  I think it's actually a good sign that he'll be on the lookout for other problems and NOT just looking for Celiac.  You want to know what's wrong.  If it's Celiac, it's Celiac.  If it's something else, at least you'll know.

 

As far as visible damage, it probably varies from one person to the next, but I know for me there were visible signs of inflamation.  And my Celiac was caught early and was not yet that severe.  The doctor took several biopsies from various areas just to confirm and to make sure there wasn't something else going on in there, but she showed me the pictures.  Instead of being smooth, the lining of my intestine looked like gently rolling hills.

w8in4dave Community Regular
w8in4dave
Posted

I know what you mean when it comes to Drs. My Dr. Wanted to dismiss all my problems also. But I pushed it and talked him into the Celiac panel. Hmmm it was positive!! Everything I have learned I have learned here. I would really talk to your Dr. there is a problem and dismissing it as nothing is not making it go away! Don't let them dismiss it!! If there is anything I have learned it is not to let the Dr. tell me there is nothing wrong! You wouldn't go to the Dr. If there was nothing wrong!! Talk to the GI Dr. Also, tell him all your problems he might look a lil harder or maby do a biopsy.  

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