I began suffering from the explosive watery D in June, following an unrelated surgery. They thought it was related to the surgery so told me to tough it out. 2 rounds of Flagyl later without relief they did a colonoscopy. Diagnosis LC. Taking Asacol 2 pills 3x a day plus she just added prednisone 30 mg for a week then 20 and so on. I feel so afraid and depressed about this. It's not really something you can explain to other people.
She gave me an order for the celiac blood test but told me to keep eating gluten so the test would be accurate if she decided to tell me to go to the lab for it. I live in a medical Mecca-Houston tx. Does anyone know a good dr who understands is disease??
Newly dx with LC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Beth,
Welcome to the board. It's not impossible that the onset of your symptoms might have been related to the surgery, though that's not a common way for MC to begin. You're right about not being able to discuss this disease with most people. The fact of the matter is, no one understands this disease, unless they have it, and they have to live with it on a daily basis.
Don't be surprised if the results of the celiac blood test are negative, because those tests will only detect fully-developed celiac disease. They virtually never detect the type of gluten-sensitivity that we have with MC. Only the stool tests offered by Enterolab, in Dallas, are sensitive enough to detect the early stages of celiac disease or gluten-sensitivity.
We've recently started a list of doctors found by members here to be way ahead of their peers at understanding and treating this disease. The list is still very short, but there is a gastroenterologist and a GP in Houston on the list. This link will take you to the list:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. It's not impossible that the onset of your symptoms might have been related to the surgery, though that's not a common way for MC to begin. You're right about not being able to discuss this disease with most people. The fact of the matter is, no one understands this disease, unless they have it, and they have to live with it on a daily basis.
Don't be surprised if the results of the celiac blood test are negative, because those tests will only detect fully-developed celiac disease. They virtually never detect the type of gluten-sensitivity that we have with MC. Only the stool tests offered by Enterolab, in Dallas, are sensitive enough to detect the early stages of celiac disease or gluten-sensitivity.
We've recently started a list of doctors found by members here to be way ahead of their peers at understanding and treating this disease. The list is still very short, but there is a gastroenterologist and a GP in Houston on the list. This link will take you to the list:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi, there is a list of doctors here, with whom other members have had a positive experience: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420 (and you're in luck, more than one in your area!).
In my opinion, continuing to eat gluten in order to prove to some doctor down the road you have celiac disease is... well, if gluten is making you sick, then who cares what you're able to prove to a doctor, and when? Many of us do not technically have celiac disease, but are made quite ill when we eat gluten.
For me, dropping gluten and dairy made a big difference, reasonably soon, and I was quite sick. You might also consider testing on your own, through Enterolab, to confirm whether you have antibodies to gluten, dairy, and they also offer tests for other foods (there's a whole topic area here about this). As you may know, celiac disease is believed to be greatly underdiagnosed, and so it's possible to have celiac and be quite sick, and not manage to "pass" the tests used to diagnose it.
I'm truly sorry you needed to find your way here, but can tell you that this is a truly great place to find out more about LC and various diet and treatment options. I hope you're feeling much better soon, with whatever combo of medication and diet changes will be right for you. (I've done the "Flagyl without relief" program myself, and my heart really goes out to you for speedy recovery.)
All my best,
Sara
In my opinion, continuing to eat gluten in order to prove to some doctor down the road you have celiac disease is... well, if gluten is making you sick, then who cares what you're able to prove to a doctor, and when? Many of us do not technically have celiac disease, but are made quite ill when we eat gluten.
For me, dropping gluten and dairy made a big difference, reasonably soon, and I was quite sick. You might also consider testing on your own, through Enterolab, to confirm whether you have antibodies to gluten, dairy, and they also offer tests for other foods (there's a whole topic area here about this). As you may know, celiac disease is believed to be greatly underdiagnosed, and so it's possible to have celiac and be quite sick, and not manage to "pass" the tests used to diagnose it.
I'm truly sorry you needed to find your way here, but can tell you that this is a truly great place to find out more about LC and various diet and treatment options. I hope you're feeling much better soon, with whatever combo of medication and diet changes will be right for you. (I've done the "Flagyl without relief" program myself, and my heart really goes out to you for speedy recovery.)
All my best,
Sara
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Bethahlschlager
- Posts: 2
- Joined: Sun Aug 28, 2011 7:58 pm
TY SO MUCH FOR THE REFERRAL TO DR PETER SCHWARTZ!!
He's wonderful - he knows so much about LC and he was so kind. He spent over 30 minutes with me and he's got me moved to Endocort and off the steroids and he was just more than I could have hoped for. Thank you so much for sending his information my way - he's wonderful!