So upset and frustrated

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Regular Member

Date Joined Dec 2006
Total Posts : 28
   Posted 2/14/2007 3:59 PM (GMT -7)   
First, my bloodwork for Celiac Disease came back and they can't figure out whats up with it. One part is saying it's abnormal, the other part, saying normal. This is what the nurse told me, the doctor wasn't in to read it - she was going to try to have another doctor in the practice read it, but they ended up calling saying they closed the office due to the blizzard we're having. More waiting. So frustrating.
Meanwhile, DH and I decided to go out snowshoing, we get about a mile away, and guess who starts having severe stomach pain and *has* to pooop! It's near white out conditions, and slow moving snowshoing (we were having fun believe it or not). I had to sprint home. :( I just made it.
I can't eat anything because i'll be in the bathroom in 15 minutes. I am so upset and frustrated. I want answers and to feel better!!!

Veteran Member

Date Joined Apr 2005
Total Posts : 3269
   Posted 2/14/2007 4:27 PM (GMT -7)   
Gosh, what a nightmare you had to deal with in the snow. I guess just be thankful you didn't poop your pants. That would have put brown icing on the cake. Have you thought about preventative measures when you have an outing planned? When I go somewhere I know I won't be able to get away to the bathroom, I take Immodium before heading out. It could be a good way for you to feel relaxed about things.
As for the Celiac's... Have you only had a blood test? Did it go through Prometheus Labs (prometheus is a credible lab for testing Celiac's)? It is my understanding that the only way to be accurate is to take a biopsy of the small bowel, done by EGD (upper GI scope).

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Regular Member

Date Joined Dec 2006
Total Posts : 28
   Posted 2/14/2007 4:40 PM (GMT -7)   
I really never thought of preventitive measures as silly as that may sound. All this is so new (6-8 months of all this going on) definately a lifestyle change.

Actually my GI doctor did things a little backwards. I had an EGD and colonoscopy first. They were pretty convienced I had Crohns. They weren't even thinking celiac. During the EGD, they took a piece of my duodenum, and that biopsy came back inflammed and consistant with celiac. Therefore they did the bloodwork.

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 2/14/2007 5:50 PM (GMT -7)   
Even if there are conflicting test results, you should definitely go on a gluten-free diet (meticulously!) for at least two weeks; this should aid you in finding the answer, since it's the only "cure" for celiac disease.

Veteran Member

Date Joined Dec 2006
Total Posts : 649
   Posted 2/14/2007 7:26 PM (GMT -7)   
Glad you made it home in time! I play in the handbell choir at church, and guess who was late to church on Sunday because she had to.... change clothes right before walking out the door? :-) Sarita makes a good point: why not go gluten-free for a while and see how you do? Might help, and it can't hurt you. There's a little anagram rhyme that might help you remember what not to eat: WBRO is the way to go. Meaning: Wheat, Barley, Rye and Oats.
Living in the Republic of Texas minus a gallbladder, appendix, uterus, and 18" of colon; but living with my wonderful husband, 2 dogs, 1 cockatiel, and 2 gold fish. 

Veteran Member

Date Joined Jun 2005
Total Posts : 2976
   Posted 2/15/2007 9:05 AM (GMT -7)   
The other gals are right on about cutting out the gluten if there's cause to suspect it. Those blood tests aren't really accurate, so you can get a false negative. Also, some people don't have a true allergy, which is all that will show up on those tests, but their guts won't handle the gluen all the same. Just like my guts won't handle apple juice anymore, but I have no reason to think I suddenly became allergic to it. In the end, it doesn't really matter what the tests say, so long as you can find something that makes you better!

Regular Member

Date Joined May 2006
Total Posts : 105
   Posted 2/16/2007 5:50 PM (GMT -7)   
Hi JustK- it's me again.  Just had to write to express sympathy.  In the beginning of my experience, I was out of my mind.  I was frustrated and sad.  I was paralyzed when it came to leaving the apt.  I mean, I did go to work because I had no choice there.  I sort of just made myself get into a routine when it came to work.  There also is a single bathroom right across from my office, lucky me! I'm a psychiatric social worker and I work on an inpatient unit so I had to fake it real good- but honestly, I felt as a mess as they did. But everyday was a struggle.  Be proactive with your treatment and 7Lil is right- take immodium as a preventative measure. I do this also and it seems to work well and I have less anxiety overall.  Take care of yourself in every sense of the word.  Physically and emotionally.  I have to give you kudos for the snowshoeing. Funny you mention that, I was absolutely determined to try snowshoeing this year (I finally returned to exercise these past few months as I used to be afraid to move too much) and we have had no snow.  I live in MA and snow usually isn't a problem.  And for God's sake, you only need 6 inches to do it!  We have had a total of 4.5. This had been a cold but snowless winter.  Keep having lots of fun- it's good for the soul.  Take care. 
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