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Might Skip The Biopsy... Thoughts?


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Posted 02 December 2012 - 06:19 PM

Okay, so if you missed my story earlier, I have a long list of typical celiac symptoms, including depression, severe cramps, constipation, bloating, major constant gas, etc. (See "Should I Re-Test", same thread, for the whole story). I have weight gain instead of loss, but my stomach is firm to the touch as if constantly bloated. Blood tests came up negative (still waiting on my copy in the mail), so I went to a GI last week.

I am about to just give up on doctors entirely. I sat there for over an hour explaining all my symptoms to the nurse, then again to the PA. Then the doctor walks in and the first thing he says is "I'm not really going to look at your other symptoms, just the GI symptoms." He then tells me he's 95% sure I am not celiac and diagnosis me with IBS. He does not want to do any more testing, just meds and diet changes.

Shouldn't all symptoms be considered when making a diagnosis??

I insisted on the biopsy, but his office has not called me back yet to schedule it, and now I'm thinking I should just save my money (out of vacation and sick time for work already too) and just see a dietician and make the change to gluten-free. I haven't started the diet yet because I have an allergy test scheduled for the 19th. My boyfriend says I should get the biospy only after the allergy test, to see if I come up as allergic or sensitive to gluten, but to me it seems like a moot point.

Any thoughts on if I should proceed with medical testing or just trust my instincts on this?
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Posted 02 December 2012 - 07:48 PM

Well that is what one could call a wasted hour :P Anyone can pull the old IBS diagnosis out of a hat blindfold!! But there's not a soul here on this board who would do that to you. He was basically telling you he just was not interested.

Yes, of course all symptoms should be considered, but they very seldom are. Often you are rationed to the number of symptoms you can talk about in 15 minutes or less (and this includes the physical examination and the writing of prescriptions for conditions you do not have because he has not spent enough time finding out what you do have. We have our charming HMO's and time and efficiency study experts and bottom line people to thank for that.

It is certainly possible to have positive biopsy and negative blood, but more common to find both of them negative as in non-celiac gluten intolerance, for which the only test is to try the diet and see if it resolves the symptoms. If it does, BINGO! If it doesn't, time for further exploration. That's my take on it unless there is a compelling reason for an official diagnosis of something.
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 02 December 2012 - 10:24 PM

With an idiot GI doctor like yours, I wouldn't bother with a biopsy. He probably doesn't know how many biopsies to take, where to take them from, and how to read the pathology afterwards. Besides, he's convinced you don't have celiac....so surely he'll find a way to match the test findings to his already lame diagnosis.

I'd simply switch to a gluten-free diet if I were you. You're a lot smarter than the doctor--go with your guts on this one.
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Posted 03 December 2012 - 06:47 AM

I agree with Rosetapper. I also had a negative blood test and no biopsy done, and my GI doc said he "presumes I do not have celiac, but am just sensitive to gluten". Anyway the treatment is the same... I do go through periods where I wish I knew for sure since intolerance does not necessarily damage the villi, but celiac does and I don't want to predispose myself to cancer. (in other words I would be a little more strict with the gluten-free diet if I knew for sure).
Oh well. I'm not about the gluten myself for 2 months just to get a biopsy done that may or may not be conclusive...
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Posted 03 December 2012 - 07:54 AM

If you are comfortable going gluten-free without a celiac diagnosis, i say go for it. I have half a dozen friends who are gluten-free due to non-celiac gluten intolerance and to treat other autoimmune problems. They don't have a specific, doctor given diagnosis either but they sure do feel better now.

On the other hand, if you need a diagnosis for insurance or financial reasons, you might want to do the biopsy. The biopsy might also be helpful to determine if something else is the cause of your symptoms (which are the same as mine except for the gas).

I would do the biopsy as soon as you can if you decide that is the route to go. The longer you wait, the more discomfort you have to endure while eating gluten. I don't think you need to be eating gluten for sensitivity testing, but 'm not sure of that.

It's a very personal decision. I wish you the best in what ever you decide.
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Posted 03 December 2012 - 08:32 AM

Thank you everyone!! I think an allergy test should be sufficient, then I'll be going on to the gluten-free diet. Bought a cookbook for gluten-free comfort foods this weekend, so I'm ready! :) Thank you all for your advice. I am glad to be here!
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