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At a loss... Celiac disease?!?

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Old 05-08-2011, 03:10 PM   #1
Join Date: Nov 2010
Location: Bella Vista, Ar
Posts: 6
bellavee HB User
At a loss... Celiac disease?!?

Hello everyone. I am a 24 year old female. I had my first child at the beginning of September 2010, and since then I have been experiencing a collection of odd and seemingly unrelated symptoms. These include:

Diarrhea on a regular basis
Upper left abdominal pain almost constantly that can be felt in back too
Upper right abdominal pain that comes and goes daily
Gas, flatulence, and belching
A few bouts of chest pain
Tingling in arms and legs, hands and feet
Yellowish- tan stool
Frequent passing of stool (at least 3 times daily even when not diarrhea)
Extreme hunger
Acid reflux/ almost constant heartburn

I went to the er twice six months ago, once they said anxiety, once they said hernia.

Saw my internist several times. List of tests:

CBC's w/ differential- high WBC count, then back to normal
Lipase/amylase test-normal
Full metabolic panel- normal
Thyroid testing-normal
Urinalysis- few bacteria found, and a few wbc's
Abdominal ultrasound- slightly enlarged spleen (13 cm)
ct scan abdomen and pelvis- slightly enlarged spleen (13 cm) and distended gallbladder (no stones or sludge seen)
EKG- normal

Internist wants me to have a hida scan (for gallbladder functioning) but
insurance will not pay for it, so I have been putting it off. Plus, I just don't feel like my gallbladder is the issue.

Based on my symptoms, is celiac disease an option, in your opinion? I'm considering requesting a consult with a gastro, and would like opinions. I am miserable and have been dealing with this for 8 months. I am on paxil for the anxiety, which helps, and prilosec for the reflux (which helps with reflux, but i still have almost constant heartburn)

All replies are very appreciated... I'm scared and at my wits end!

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Old 11-03-2011, 02:18 PM   #2
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Location: Los Olivos, CA, USA
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Correctusage HB User
Unhappy Re: At a loss... Celiac disease?!?

Wow.. I can totally relate to what you're saying. I've been ill with a mysterious diarrhea/orange tan yellow stools/multiple BMs per day, fatigue, RAVENOUS hunger, awful anxiety, etc etc for 2 years now with no diagnosis. I've had all the tests to no avail, I'm perfectly healthy... except that my body quit working after I had the flu a couple years ago.

So, while I can't give you any clear answers since the docs NEVER suspect gluten problems with me, I can say that I have tried a gluten free diet twice in my life. The first time was for a month and it didn't help. I was living on packaged gluten free foods, which I'm sure were part of the problem. I can't have many preservatives/additives. The second time I tried going gluten free, it lasted a month and I felt better. I wasn't having the "Oh god I think I need the bathroom right now!!" feelings and my stool did firm up a bit., though was still orange/yellow/tan. I gave up, though, because out of the blue, not having eaten anything with gluten, I had a horrible horrible all day long bout of extreme D. Since the GF diet was tricky, I just quit after that day, totally depressed over it.

My docs won't test me for gallbladder issues (despite my grandpa and my mom having theirs removed at 28 and 30 years old) because they don't feel this is related since there's no pain there. Reluctantly, my Gastro doc prescribed Cholestyramine and it does make stools formed, but it doesn't help with the stomach upset and gurgling and 'loose' feelings that plague me constantly.

So yesterday I began my 3rd GF trial, just to see. I feel better today, but maybe that's cause I didn't take the sucrose filled Cholestyramine today. Who knows. Probably a fluke. I'm very bummed about my life right now. I hate having the bowels of a 90 year old at 29.

The only pain I've ever had with this is behind the lower end of my left rib cage, just a slight gnawing little pain. The doc was not concerned and the pain only appeared for a few days once.

One thing that helped me is taking a digestive enzyme that includes Betaine HCL. You may want to try that, as it helped with my bowel movements and stomach grumbling and groaning while using them, and also with energy levels. I would still be on them but I'm trying out this dumb Cholestyramine, praying it works since I have a big event on Sunday... Oh joy. I probably won't eat much two days leading up so my body is empty. Honestly, I'm petrified. Bummer.

Old 11-19-2011, 12:50 PM   #3
Join Date: Feb 2007
Location: Urbana, Il., USA
Posts: 66
Graywren HB User
Re: At a loss... Celiac disease?!?

I've had celiac disease for 16 years that I know of. and I've been to a lot of support group meetings. There is a simple blood test for celiac disease that would put your mind at ease, one way or the other. I wouldn't go on the gluten free diet unless I'd had that test and knew for sure I had celiac disease. The gluten free diet works miracles for those who have the disease, but it's expensive and a lot of trouble. In other words get the blood test and quit wondering. Your doctor would have to order it, but with all those symptoms he/she probably would.

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