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Hello-My Story Of My Long Journey To A Possible Diagnosis

sandrad

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sandrad Newbie
sandrad
Posted

Hello, my name is sandra and im from canada.

I appologize in advance because this may be a little long ;p also for any typos as im typing on my cell phone

ive been sick for several years. I quit smoking in 2005 and within a year i gained a lot of weight and started getting sick. I had diarrhea everyday several times a day(it was pretty much water). When i moved back to sk i started having lower right ab pain so my dr sent me to the er to get it checked out. They did ct scan that only showed swollen lymph nodes. The surgeon i saw there set up a colonoscopy and barium follow thru to check for crohns and colitis(both run in the family). Nothing showed up so i was referred to a gyno who thought i might have endometriosis(which was confirmed in surgery this past spring) i went off birth control and started having multiple symptoms-memory, speech problems, vertigo, nausea...during all this time i was diagnosed with multiple problems(posterior fossa meningioma, empty sella syndrome, lichen sclerosis-bit nothing to explain symptoms. I went back on birth control and most the symptoms ive had went away.

It was thought i had ms, intracranial hypertension, lupus, etc. I was tested for it all. Including the blood test for celiac. It all came back negative. I was fine for a few months.

In january 2010 i couldnt sleep on night...thought i was having a heart attack(i should say at the time i was 310 lbs and i was27). They told me i had acid relux and sent me home. I kept getting sicker so saw my gp she gave be some buscopan and pantaloc and said if i dont feel better in a cpl hours to go back to the er. I ended up going back and was admitted with a very high wbc but with no known cause. I spent two days in the hospital and was discharged with a script for two strong antibiotics(while i was there they checked my gallbladder which didnt show any stones). We were convinced it was my gallbladder. Had a hida scan that showed only 35% function but according to the surgeon it wasnt causing my pain. I should now say i was having fairly pale yellow diarrhea. He set up an endoscopy. At the end of that test he referred me to a gastroenterologist and i never saw the surgeon again. A month after the test i moved to ontario so i never got the results.

Since moving to ontario it took a few montha to see the surgeon who decided i needed to have my gallbladder removed which i did in jan and ive still been sick. I thought the yellow bm's would stop but theyre just as bad. I still have and somewhat worse stomach pains. We phoned the hospital in regina where my endoscopy was done to see if we could get the results they told us to get our drs office to send a request for it. So i saw my nurse practitioner who requested the results which she got two weeks ago tho its just the drs report and it said possible celiac but we need the biopsy results to confirm which we cant get a hold of. So im not starting the diet until we find out for sure just in case i have to have another endoscopy.

This all makes sense. I think the yellow bm's is from me not being able to absorb anything. Ive been extremely fatigued since i started getting really sick last year...its even been worse since my gb removal. Ive had so many people, even family who have told me its all in my head including my brother who has crohns.

Im not looking forward to the diet cuz i loveee gluten products but i know i need to and actually want to start asap. Since last year ive lost 40+ lbs(mainly cuz i couldnt eat without getting sick so was living on chicken and rice-chicken was breaded so thats possibly why i didnt start feeling better). Im hoping to lose a lot more weight once i go on the diet. I always thought it was a symptom as i was always skinny before.

Anyway thats my story. Im hoping to get my dx within the next few weeks. I will be suprised if it isnt celiac.

So sorry this was so long but it was neccessary to explain ;p. I hope to get to know some people in this community and might need some help a long the way.

Thanks

sandra

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. You do sound like you could be one of us. After you get your test results you should try the diet for at least a couple of months no matter what the results since false negatives are not uncommon. Ask any questions you need to while you are waiting to start the diet. I hope your feeling better soon.

MsCurious Enthusiast
MsCurious
Posted

Welcome to the board. You do sound like you could be one of us. After you get your test results you should try the diet for at least a couple of months no matter what the results since false negatives are not uncommon. Ask any questions you need to while you are waiting to start the diet. I hope your feeling better soon.

Just remember, you need to keep eating gluten until all of your celiac testing is complete. Good luck!

etta694 Explorer
etta694
Posted

Hello, my name is sandra and im from canada.

Me too.

Im not looking forward to the diet cuz i loveee gluten products but i know i need to and actually want to start asap.

After starting to bake gluten free I have fallen in love with the gluten free cooking.. because I feel good and mostly because it tastes fantastic. Given.. the bought stuff is never as good and there are always recipe failures but that is true of gluten food as well. When you begin the adventure of cooking gluten free you might even enjoy it more than the gluten food..! (I mean - almond flour just HAS to have a great taste.)

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