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Tex? Gabes? Anyone! Tell me what to do next!?!
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Mon Jan 01, 2018 7:45 pm    Post subject: Reply with quote

The Enterolab results were within the last 6 months, don't remember exactly when.

I had blood drawn and checked on December 2 for various things:

Vitamin D: 49.7 in range
B12: 1636.0 WAY off the charts (high)
Magnesium 2.2 in range

Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Mon Jan 01, 2018 7:48 pm    Post subject: Reply with quote

In case you're wondering why my avatar disappeared I thought it was only fair to update it with a more recent photo (the old avatar was 12 years old) but try as I might, it won't accept a new photo from PhotoBucket.



Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31007
User's local time:
2018 Jan 21 - 8:03 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Jan 01, 2018 8:12 pm    Post subject: Reply with quote

Then you should be fine with eggs.

Tex

PS If you'll attach a jpg image to an email and send it to me I'll be more than happy to convert it into an avatar and upload it for you. But I can't use a photobucket image, unfortunately. My email address is available by clicking the email button at the bottom of this post.
_________________
cowboy

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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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 2074
User's local time:
2018 Jan 21 - 8:03 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Mon Jan 01, 2018 8:25 pm    Post subject: Reply with quote

Hi Sue,

Since I've been on the forum I think we've had had two members from the northeast do ok on Imuran (an anti TNF). The last member who posted about using anti TNF drugs is in palliative care (hospice) due to something she picked up after long term use on the anti TNF drugs. It is sad as I think she is in her early 30's with a couple of kids. I can't remember her name or I'd post the link to her story.

I had a rough flare last summer of 2017. I was in denial for about 8 weeks but after I got serious....ate mostly protein and ditched ALL supplements WD went to one manageable time in morning. One manageable time in morning was a vast improvement. I was doing pretty well after 6 months on a very narrow diet. I ate a very narrow diet for about 14 months. I'm now able to eat a pretty broad diet but no gluten and no dairy. I'm able to tolerate small salads, small apples, small mandarin oranges and still a lot of overcooked vegetables and protein.

Do you have a copy of TEx's book? See link in the upper right hand corner.

Brandy
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Mon Jan 01, 2018 8:40 pm    Post subject: Reply with quote

brandy wrote:
Hi Sue,

Since I've been on the forum I think we've had had two members from the northeast do ok on Imuran (an anti TNF). The last member who posted about using anti TNF drugs is in palliative care (hospice) due to something she picked up after long term use on the anti TNF drugs. It is sad as I think she is in her early 30's with a couple of kids. I can't remember her name or I'd post the link to her story.

I had a rough flare last summer of 2017. I was in denial for about 8 weeks but after I got serious....ate mostly protein and ditched ALL supplements WD went to one manageable time in morning. One manageable time in morning was a vast improvement. I was doing pretty well after 6 months on a very narrow diet. I ate a very narrow diet for about 14 months. I'm now able to eat a pretty broad diet but no gluten and no dairy. I'm able to tolerate small salads, small apples, small mandarin oranges and still a lot of overcooked vegetables and protein.

Do you have a copy of TEx's book? See link in the upper right hand corner.

Brandy


Oh, Brandy - how sad! Sad and scary, but devastatingly sad. The one thing I always say about our horrible disease is that at least it isn't deadly or terminal, but I guess it can be under the right (or wrong) circumstances. Hearing that really confirms that I should try to stay off of the 6MP.

I have had Tex's book for years but am sad to admit I haven't opened it in a long time. Perhaps it's time to re-read it.
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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pieroaj
Little Blue Penguin
Little Blue Penguin


Joined: 21 Mar 2017
Posts: 39
User's local time:
2018 Jan 21 - 9:03 PM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Tue Jan 02, 2018 8:02 pm    Post subject: Reply with quote

Not to jump in here, as I am relatively new here, diagnosed in March 2017. But since you asked about Uceris vs. low dose of budesonide, I thought I would respond. I was first put on Uceris. It worked well, then so well I developed pretty severe constipation. Actually, while traveling, I also developed severe cramping and had to visit an ER - so not fun. This was before I did the Enterolab testing. I ended up changing GIs, not due to the Uceris, but wanted someone who would work with me on management of MC. I am now on 3mg of budesonide, every other day. I started with one a day, but have found that every other day works well with me. I am still working on diet. Changing my diet has been hard for me, definitely a 2 step forward 1 step back, but I am still working on it.

I know that each person is different, and may not respond like this. Just thought I would share my experience.

Angela
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Tue Jan 02, 2018 8:05 pm    Post subject: Reply with quote

pieroaj wrote:
Not to jump in here, as I am relatively new here, diagnosed in March 2017. But since you asked about Uceris vs. low dose of budesonide, I thought I would respond. I was first put on Uceris. It worked well, then so well I developed pretty severe constipation. Actually, while traveling, I also developed severe cramping and had to visit an ER - so not fun. This was before I did the Enterolab testing. I ended up changing GIs, not due to the Uceris, but wanted someone who would work with me on management of MC. I am now on 3mg of budesonide, every other day. I started with one a day, but have found that every other day works well with me. I am still working on diet. Changing my diet has been hard for me, definitely a 2 step forward 1 step back, but I am still working on it.

I know that each person is different, and may not respond like this. Just thought I would share my experience.

Angela


Thank you for sharing! Budesonide works great for me, but I hate the side affects and the way it affects my thyroid levels so was wondering if Uceris would solve that issue. I'm trying very hard to control this with diet and not take ANY drugs for this..... hopefully you, too, will be able to take control of it with what you eat (and don't eat).

Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31007
User's local time:
2018 Jan 21 - 8:03 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Jan 02, 2018 9:41 pm    Post subject: Reply with quote

Angela,

I assume that you probably realize now that you have to reduce the dose (start skipping days) when you start feeling constipation symptoms. But probably what you are doing now is even better after getting the MC under control with Uceris, when it's time to start tapering the dose, switching to regular budesonide makes it easier to regulate the smaller doses. And the smaller amounts should have much less systemic effect than a full dose would have had.

Tex
_________________
cowboy

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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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5169
User's local time:
2018 Jan 21 - 9:03 PM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Tue Jan 02, 2018 10:11 pm    Post subject: Reply with quote

Hi Sue, old buddy!

Have you tried cholestyramine? It gave me my life back and enables me to eat dairy, fiber, and many foods I couldn't eat before. I didn't discover it until about 2 or so years ago. It is VERRRY safe, non-absorbed, and cheap. If you haven't tried it and would like to, feel free to PM me for further details.

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Wed Jan 03, 2018 10:37 am    Post subject: Reply with quote

Polly wrote:
Hi Sue, old buddy!

Have you tried cholestyramine? It gave me my life back and enables me to eat dairy, fiber, and many foods I couldn't eat before. I didn't discover it until about 2 or so years ago. It is VERRRY safe, non-absorbed, and cheap. If you haven't tried it and would like to, feel free to PM me for further details.

Polly


Polly!!!!! big big hug Happy New Year!!! My face always lights up when I see YOUR smiling face on a post!

No, I have NOT tried that and I'm not sure why, but perhaps it's time. I think I always assumed it was for people who had cholesterol issues or gallbladder issues. But I am now going to go do some reading on it and it makes perfect sense to try it.... sure beats calling in the big gun drugs!

Yes, please PM me more information if you're willing to share.
So nice to see you!!!!
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5169
User's local time:
2018 Jan 21 - 9:03 PM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Thu Jan 04, 2018 9:05 am    Post subject: Reply with quote

Hi Sue,

I just responded to your PM! Good luck!

Hugs,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:03 PM



Location: Connecticut

PostPosted: Fri Jan 05, 2018 1:43 pm    Post subject: Reply with quote

Update: I wrote to my GI doc through the patient portal yesterday and just heard that he has called in a script for Cholestyramine. I specified Sandoz brand but he said he has no way of knowing what manufacturer my pharmacy uses for generic so he ordered me non-generic. I'll pick it up tonight and give it a try - scared of side affects but better to try on a weekend than during the work week.

Polly, sent you a PM a few days ago... don't even remember what I asked, though. Confused
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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