Hi everyone- I have only posted here a few times. I was diagnosed back in the spring with CC. At the time, I suffered horribly with D, but only for a few months. However, I have had a long history of C, and was diagnosed in my youth with IBS. I was very lucky to go to a NP in a local practice in Co Springs who listened to my symptoms and immediately suspected either MC or Celiac. I had a colonoscopy/EGD done and was diagnosed with CC. Since then, my D subsided on it's own. Now I am back to having issues with C most of the time. I have had three serious bouts in my life with gastritis, also. I am only in my 40s, am a runner, am thin, eat a pretty healthy diet. Right now I am feeling constantly hungry, weak, shaky, etc., and I am not sure if this is a blood sugar issue or if it is the start of another run in with gastritis. I am so frustrated. I had not seriously considered going gluten free previously, BUT my niece (my sister's daughter) was just diagnosed with celiac disease at the age of 9. Suddenly I am seeing that there must a genetic link between the Celiac and the MC in my family. My sister has always been told she has IBS/lactose intolerence. Anyway, the NP I originally saw is in the same practice with Dr. Lewey, so I recently scheduled an appointment to see him. Unfortunately, my appointment is not until towards the end of January, but I figure he will be worth the wait.
I know a couple of people here have seen Dr. Lewey. Does anyone know if he recommends the genetic testing? I know he recommends the enterolab testing. Frankly, I cannot afford to do a full panel of testing, but I could probably afford at least some of it. I just think there must be something in my diet that is causing me to feel as miserable as I feel and I have no idea what it is.
update- celiac in family and going to see Dr. Lewey
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colorunner
- Posts: 8
- Joined: Mon Apr 25, 2011 5:05 pm
- Location: Colorado
Colorunner, "pretty healthy diet" means different things to different people. If you have MC, even without a celiac relative, you're looking at very good odds that you're gluten sensitive. Like you, I had my symptoms subside for a while, before I knew about the gluten connection, but when they came back, they were drastically worse.
If you haven't done a gluten-free experiment, you might save yourself a lot of woe by starting one. It has to be strict - not "low gluten" but NO gluten, to make a difference in your body's immune response (just like "a little" flu virus can make you plenty sick... only this is more like "a little bit of cholera"). Unlike the less-sensitive blood tests, your Enterolab results, should you choose to do them, will continue to show gluten sensitivity for a very long time after you drop gluten from the diet.
The Enterolab gene tests alone is about $150, as I recall, so less expensive than the full panel of food-sensitivity tests.
Most of us are also sensitive to the protein in dairy (and not only to lactose, the sugar component of many dairy products).
Again, this was hard for me to wrap my mind around as a "whole grain" kind of eater... a diet full of healthy foods that make you sick is actually not a healthy diet... for me, that means eating more animal products now, which was hard to accept, but I feel so much better, it's hard to argue with the results.
The single biggest difference most of us feel comes from eliminating gluten, though many of us have to eliminate dairy, and sometimes soy, to get as much relief as we need to feel as though we're "winning" (and some have more sensitivities as well).
Hope this helps,
Sara
If you haven't done a gluten-free experiment, you might save yourself a lot of woe by starting one. It has to be strict - not "low gluten" but NO gluten, to make a difference in your body's immune response (just like "a little" flu virus can make you plenty sick... only this is more like "a little bit of cholera"). Unlike the less-sensitive blood tests, your Enterolab results, should you choose to do them, will continue to show gluten sensitivity for a very long time after you drop gluten from the diet.
The Enterolab gene tests alone is about $150, as I recall, so less expensive than the full panel of food-sensitivity tests.
Most of us are also sensitive to the protein in dairy (and not only to lactose, the sugar component of many dairy products).
Again, this was hard for me to wrap my mind around as a "whole grain" kind of eater... a diet full of healthy foods that make you sick is actually not a healthy diet... for me, that means eating more animal products now, which was hard to accept, but I feel so much better, it's hard to argue with the results.
The single biggest difference most of us feel comes from eliminating gluten, though many of us have to eliminate dairy, and sometimes soy, to get as much relief as we need to feel as though we're "winning" (and some have more sensitivities as well).
Hope this helps,
Sara
You're right, of course - it's definitely something in your diet. The Enterolab tests can remove any doubt about the most likely suspects.colorunner wrote:I just think there must be something in my diet that is causing me to feel as miserable as I feel and I have no idea what it is.
You've picked the GI doc who is arguably the best in the world, for treating MC.
Good luck with this,
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.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
No food is worth feeling the way you feel right now! You'll probably be surprised at the difference it makes if you eliminate the gluten (and anyway, what do you have to lose?). Some people take weeks to notice a difference, but for me it was a matter of days. I lost symptoms I didn't even know I had (I'd been tired and irritable for so long, I thought it was normal). And if your sister is lactose-intolerant, you might want to quit dairy for awhile too.
Hope you get some answers and get to feeling better soon!
Hope you get some answers and get to feeling better soon!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder