Thanks ever so much to those suggestions of pure cold coconut water and my wonderful protein full, gluten free diet at the beach.
Blood levels are about back in range, B12 monthly, potassium horse pills when the big D occurs, and stay on my 4-5000 of D3 daily.
Can stand up straight and am thankful everyday to the faithful experienced of this forum.
On to Gastro visit - He does not think my diet had anything to do with me feeling better (!?) (LC diagnosed after lost 25 lbs in 4 wks). Been on my wonderful Entocort for 8 weeks and he wants me drop from 9 to 3mg in a day. This is second day of my trying 6mg and pain and D returning. I thought I read on med forum about weaning off Ento - cannot find it. Dr. warns me of "unknown long term use of Entocort." At 69 what is long term?
Advise please, or link to page where it is located. Next trip in 2 weeks.
Lindy Lou
PS to Tex - your signature quote keeps my mouth shut in the Dr office - I thank you. (understand in this post Katrina small town Medicare provides no GI choice)
Newbie returns from beach standing up, but Entocort ? again
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How did you feel when you were on the full dose? Were you "norman"? After two months on 9 mg., you should be able to drop down to 6 mg., but if you can not, you are probably still eating something you are reacting to. Time to put on the detective hat again. What are your meals like? Maybe we can make some suggestions.
I was on Entocort 6 months total. 1month at 9mg., 2 months at6mg., 2 months at 3 mg. and the last month I spent SLOWLY weaning off of it. It takes a while to wens down and off successfully. We have found that most of the time, if you get off of it too soon, relapse is likely. On the other hand, it's not a cure and is only masking the fact that you are reacting to something you are still eating.
Leah
I was on Entocort 6 months total. 1month at 9mg., 2 months at6mg., 2 months at 3 mg. and the last month I spent SLOWLY weaning off of it. It takes a while to wens down and off successfully. We have found that most of the time, if you get off of it too soon, relapse is likely. On the other hand, it's not a cure and is only masking the fact that you are reacting to something you are still eating.
Leah
For the past almost 4 weeks I have had grilled organic, chemical free lean chicken, beef, pork, some shrimp. I am doing ok with potatoes, but not rice. I drink water and some coconut water, and can tolerate morning coffee. I have been trying Van's gluten free cereal made from a blend of quinoa, amaranth, oat and sugar with the smallest sprinkle of "rice dream" to wet it. Because of Trigeminal nerve in my mouth - if it is on fire at night, rather than meds I suck on a frozen lime juice bar. And not one other thing has passed my lips. All has been going well
When I have had to wean other meds prior, I had to go very slowly - ex. 3 tabs 1 day 2 tabs next day and keep alternating for about 5 days till I made it to 2 tabs every day. Did you go from 3 to 2 immediately?
When I have had to wean other meds prior, I had to go very slowly - ex. 3 tabs 1 day 2 tabs next day and keep alternating for about 5 days till I made it to 2 tabs every day. Did you go from 3 to 2 immediately?
Lindy Lou,
If I were in your situation, I would avoid Van's products and try Corn Chex, or Rice Chex, or one of the other gluten-free Chex cereals, if I wanted cereal for breakfast. Many of us here (in fact most of us, including me) are sensitive to oats, despite claims by celiac doctors that oats certified to be gluten-free are safe. They're not safe — most of us react to oats, because the avenin in oats is very similar to the gluten in wheat.
Also, unfortunately there's a problem with cross-contamination in some brands of quinoa. Here's a link to an old discussion about the problem. The link in my post in that old thread no longer works (because the article is apparently no longer hosted on the Internet), but you can still read the quote from the article in my post.
If You've Ever Reacted To Quinoa, This May Be Why
And to compound the problem with that cereal product, some of us apparently cannot tolerate amaranth.
I hear you about the problems trying to find a GI doc who has the foggiest idea how to properly treat MC. Most of them don't understand food sensitivities at all, and they don't understand how to use the medications that they prescribe to treat MC, so that they will be most effective.
But they're all we have, so we have to humor them, and try to make the most of whatever they have to offer. 
Tex
If I were in your situation, I would avoid Van's products and try Corn Chex, or Rice Chex, or one of the other gluten-free Chex cereals, if I wanted cereal for breakfast. Many of us here (in fact most of us, including me) are sensitive to oats, despite claims by celiac doctors that oats certified to be gluten-free are safe. They're not safe — most of us react to oats, because the avenin in oats is very similar to the gluten in wheat.
Also, unfortunately there's a problem with cross-contamination in some brands of quinoa. Here's a link to an old discussion about the problem. The link in my post in that old thread no longer works (because the article is apparently no longer hosted on the Internet), but you can still read the quote from the article in my post.
If You've Ever Reacted To Quinoa, This May Be Why
And to compound the problem with that cereal product, some of us apparently cannot tolerate amaranth.
I hear you about the problems trying to find a GI doc who has the foggiest idea how to properly treat MC. Most of them don't understand food sensitivities at all, and they don't understand how to use the medications that they prescribe to treat MC, so that they will be most effective.
But they're all we have, so we have to humor them, and try to make the most of whatever they have to offer. 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.