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ysali

Experiences with diagnosis

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About a year and a half ago I started having stomach issues which finally culminated in me going to see a GI doctor this past October. 

After a round of testing there is still no clear diagnosis aside from 'unexplainable' inflammation in the small intestine and high inflammation markers in blood work. Endoscopy came back fine, colonoscopy came back fine, capsule endoscopy came back fine. Fast forward to three days ago when I received a letter from my GI saying that the blood work also came back positive for celiac disease so another endoscopy was going to be scheduled so she could biopsy more areas. 

As far as symptoms go, there's a full list ranging from stomach problems to sleep problems. I've lost just about 50 pounds since Feb 2016 without actively trying to lose weight. Then there's the back and forth between insomnia and excessive fatigue.  Lactose intolerance, anxiety, depression, irritability, joint pain, migraines, dizziness, foggy memory, occasional fevers and waking up in the middle of the night sweating. Chronic diarrhea, gas, bloating, upset stomach. It's a lot. 

My next endoscopy is tomorrow and I'm just hoping they finally find something so I can actively start trying to remove gluten from my diet and put an end to this laundry list of symptoms. I guess I'm just a little unsure as to why she's just now  telling me of the positive blood work and was wondering if anyone has had a similar experience before diagnosis - positive blood work, negative biopsies. 

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Hi ysali,

Yes, members have posted before about having both negative biopsies and positive bloodwork/antibodies.

Celiac is not an easy disease to diagnose sometimes.  The small intestine is about the size of a tennis court in surface area.  So it's possible a biopsy could miss a bad patch and hit a good patch of gut lining.  Our guts are constantly trying to heal from normal wear and tear damage from digesting food.  If they weren't we'd all be in real bad shape real quick.

Your symptoms sound real familiar to me.  Celiac damages the lining of the small intestine which impairs our ability to absorb nutrients.  Malasborption of nutrients and resulting deficiencies are bad for our bodies in many ways.

Do stick with eating gluten until your testing is completed.  It's important to keep eating gluten for accurate test results.  The endoscopy should include 4 to 6 biopsy samples for microscopic review.

Welcome to the forum! :)

 

 

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Test in October and a letter in January? Sounds like either the results or the letter got tucked under some papers or the doc had a real long holiday vacation.  Good that they are getting you in quickly. Since you had positive blood work and are having the endo done tomorrow you should be able to go ahead and go gluten free after the procedure if the doc doesn't want any further celiac testing. Hopefully you will get an apology from that doctor for your positive blood taking so long to be acknowledged and addressed.

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6 hours ago, frieze said:

i am a cynic, i think the doc just wanted to collect on another scope.

Make that 2 cynics.  ;)  If the blood work is strongly positive, then you have Celiac.  With that very specific list of "in your face" Celiac symptoms, have the second biopsy if you want but I would go strictly gluten-free for life after that is done.  Best of luck to you!

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The second EGD definitely made me a little uneasy but at this point I just want to find out what is going on so I agreed. Biopsies came back all fine according to the phone call I received today but she put me on a six week gluten free diet immediately following the procedure to see how I felt. Now I just have to wait for my small intestine CT and the follow up appointment I guess.  

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