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Starting Over Dealing with MC But Knowing What I Know Now

 
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DJ
Gentoo Penguin
Gentoo Penguin


Joined: 01 Oct 2013

Posts: 472
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, eggs, soy, kidney beans (and most other legumes), nuts, especially almonds and peanuts, tapioca, xanthan gum, and chicken
Location: Upstate NY

PostPosted: Sat Jan 04, 2014 9:04 am    Post subject: Starting Over Dealing with MC But Knowing What I Know Now Reply with quote

I am now over 7 months post-diagnosis and 7 months on Entocort. With a very careful, restricted diet, I am fairly stable. I still experience exhaustion much easier than in the past.

Early on when I was having awful D, my doctor recommended that I eat only meat. Eating only meat really slowed the frightening watery diarrhea. Soon after I began the meat diet I also began Entocort.

If I could turn back time, yet have my current knowledge base, I think I would have tried a very restricted diet alone before beginning Entocort. Having the sudden improvement with the meat diet is indication that slow introduction of the most benign foods might have worked without Entocort.

There is one problem with the hindsight story. It doesn't clearly express the time it takes to understand not only what is most easily tolerated but also the complexity of avoiding offenders.

If you are thinking of a trial of controlling MC without Entocort, here are a few thoughts:
    Order the book on the right hand side of your screen on the main page of this site: "Microscopic Colitis".
    Eliminate all gluten, dairy, soy, nuts, NSAIDs (such as aspirin and ibuprofen) and PPIs (such as omeprazole) in the beginning plus avoid things you know have upset you in the past and don't make exceptions and eat just a little! Eliminate completely!
    Focus extremely heavily on meat .....beef, bacon, turkey, ham, other types of pork, fish, chicken --but be careful to read labels. Some hams and turkeys and cold cut forms of ham, turkey, chicken and beef contain soy or gluten. Canned tuna almost always contains soy.
    Slowly add a little rice, quinoa, sweet potato, coconut milk (sold in the dairy case), and gluten-free Rice Chex and Corn Chex to your diet but don't over do it. Corn taco shells are nice with meat in them but read the label. Not all corn shells are free from the things you are avoiding.
    If you add the above foods and your stools become loose/watery again, cut back and focus more heavily on meat.
    Find some multivitamins, calcium, magnesium, and vitamin D that are free of the things you are avoiding - gluten, dairy, soy, and nuts.
    If you are still having diarrhea, eliminate eggs.
    Become a member of this group and ask questions. It's free and amazingly helpful.
The members will guide you on adding further foods.
In my opinion, if you have tried moving forward without Entocort for a period of time and continue to have watery D, it might be best to take the medication. As we all know, going too long with watery D and weakness fogs the brain and makes it difficult to move forward.

Welcome and Good Luck!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


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: Sat Jan 04, 2014 12:29 pm    Post subject: Reply with quote

That's such a well-thought-out (and yet concise) post that I feel that it should be a sticky.

Thanks.

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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ldubois7
Rockhopper Penguin
Rockhopper Penguin


Joined: 19 Feb 2013

Posts: 1254
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, dairy, eggs, soy
Location: Pennsylvania

PostPosted: Sat Jan 04, 2014 12:56 pm    Post subject: Reply with quote

Fantastic summary! Well said! Thank you!
_________________
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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Fiona
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 13 Jul 2013

Posts: 81
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein
Location: Austin, TX

PostPosted: Sat Jan 04, 2014 4:49 pm    Post subject: Reply with quote

All very good advice. The only thing I'd add is to stay away from Pepto if you can. I was very impatient to stop the watery D and really wanted to avoid Entocort if possible, so I started on the Pepto protocol (eight tablets a day for eight weeks) right away and had to quit six weeks in. It definitely put a stop to the D, but it also gave me a raging case of tinnitus that lasted for several months. It still isn't gone completely, but at least now has faded enough so as to be bearable. It really was a living nightmare for a time there, and--just my opinion, of course--not worth the risk. If I had to do it all again, I would just exercise patience and trust that eliminating my sensitivities would take care of the problem. I'm sure Pepto is fine occasionally and in low doses, but I'll never take it again.

Might also add (or agree with, rather) the 100% rule on elimination of your sensitivities. I don't understand the concept of "cheating" when it comes to your health, and I cringe every time I read about someone who cheats and then doesn't understand why they're still sick. Of course mistakes are going to happen, and they've certainly happened to me, but this thing is really an all-or-nothing proposition. I'm one of the people who healed very quickly--part of that was surely luck and part of it was figuring out (thanks to this forum) the problem sooner rather than later, but it was also due to my immediate acceptance of the facts of the situation. If you keep eating what's making you ill, you're going to stay ill. It's that simple. Granted, my only sensitivities are gluten and casein, but it was--and still is--a huge adjustment to eliminate both of these things from my diet 100%, especially as someone who takes cooking and eating very seriously. Probably too seriously. The upside, however, is that I feel like I have a brand-new digestive system, and I wouldn't trade that for having any or even all of my old favorite foods back.

Fiona
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DJ
Gentoo Penguin
Gentoo Penguin


Joined: 01 Oct 2013

Posts: 472
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, eggs, soy, kidney beans (and most other legumes), nuts, especially almonds and peanuts, tapioca, xanthan gum, and chicken
Location: Upstate NY

PostPosted: Sat Jan 04, 2014 8:16 pm    Post subject: Reply with quote

tex wrote:
That's such a well-thought-out (and yet concise) post that I feel that it should be a sticky.

Thanks.

Tex


Tex, Thanks for your kind words. You had this under Stickies and it kicked out when I did an edit. Oops!
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sunny
Rockhopper Penguin
Rockhopper Penguin


Joined: 17 Jan 2008

Posts: 683
User's local time:
2017 Oct 22 - 12:22 AM



Location: Washington

PostPosted: Mon Jan 06, 2014 11:15 pm    Post subject: Reply with quote

DJ, great post! And so true. It truly works to eliminate problematic foods & stick to meats....it's been working for me. Now I am trying some new things like rutabaga fries, 1/2 handful of salad, sweet taters, turnip fries, Bubbies sauerkraut in avocado halves, cashew butter, and Kamut cakes ( like rice cakes.) since there are so many foods I should avoid, I'm looking for unusual replacements....like pecan butter & cashew butter for almond butter, cashew meal to replace almond flour. thanks for this thoughtful post...you echoed what Tex and so many others here have promoted so many times.
Sunny
_________________
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


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 07, 2014 12:09 am    Post subject: Reply with quote

Sunny,

Please be aware that Kamut is a variety of ancient wheat. While it has a much lower gluten content than modern wheat, it is definitely not gluten-free. The same applies to spelt, which is another ancient variety that's low in gluten, but definitely not gluten-free.

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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sunny
Rockhopper Penguin
Rockhopper Penguin


Joined: 17 Jan 2008

Posts: 683
User's local time:
2017 Oct 22 - 12:22 AM



Location: Washington

PostPosted: Thu Jan 09, 2014 8:49 pm    Post subject: Reply with quote

Nooooooooo! Kamut is ancient wheat? (Insert bad word here...) I saw it on a GF list...thanx, Tex! U got my back! Sigh...
Cloudy....uh...Sunny
_________________
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
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DJ
Gentoo Penguin
Gentoo Penguin


Joined: 01 Oct 2013

Posts: 472
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, eggs, soy, kidney beans (and most other legumes), nuts, especially almonds and peanuts, tapioca, xanthan gum, and chicken
Location: Upstate NY

PostPosted: Sat Jan 11, 2014 5:15 am    Post subject: Reply with quote

sunny wrote:
Nooooooooo! Kamut is ancient wheat? (Insert bad word here...) I saw it on a GF list...thanx, Tex! U got my back! Sigh...
Cloudy....uh...Sunny


This is a great example of why this board is sooooo helpful! I'm happy that you mentioned kamut, Sunny and that Tex was there for you. I used to buy kamut flour and pasta before I understood that gluten is a core part of my health problem. It is a nice, ancient form of wheat for someone, but not for us or others with gluten problems.
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jcml12
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 24 Apr 2015

Posts: 33
User's local time:
2017 Oct 22 - 12:22 AM


Food Intolerances : gluten, dairy, soy, casein, grains, gums, sugar, corn
Location: PORTLAND, OR

PostPosted: Fri Apr 24, 2015 3:55 pm    Post subject: COCONUT MILK Reply with quote

In regards to Coconut Milk and for that matter any of the milk alternatives they all contain GUM'S. For me and many with MC these GUMS are nasty. You can purchase Light Coconut Milk in a can at Trader Joes and it is just Coconut Milk and Water. You also can make your own as well as Almond Milk etc. With me at least it has been best to stay away from these things totally and when I have tried something with gums boy I have known it even on Budesonide.

Thanks,
Jan
_________________
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
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Nsol

Canada

Joined: 19 Nov 2014

Posts: 6
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, eggs, soy, nuts

PostPosted: Wed Jul 15, 2015 9:22 am    Post subject: nuts Reply with quote

Am starting over again and am wondering about cashew butter? I know you say to avoid nuts, which I do already, but what about the butters?Thanks for the help,
Natalie
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


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: Wed Jul 15, 2015 9:31 am    Post subject: Reply with quote

Hi Natalie,

Nut butters are definitely easier to digest than the nuts themselves. Soaking nuts overnight in water can also make them easier to digest. Some of us are sensitive to certain nuts, and some of us have problems with the fiber content of nuts. And anyone sensitive to soy will almost surely be sensitive to most legumes, including peanuts. All nuts and nut butters gave me a serious bellyache for years, even after I recovered. However now (11 years into remission) I can tolerate both nuts and nut butters (provided that I don't overdo it).

There's a good chance that you may be able to tolerate cashew butter, but of course your body has the final say-so.

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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Nsol

Canada

Joined: 19 Nov 2014

Posts: 6
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, eggs, soy, nuts

PostPosted: Wed Jul 15, 2015 10:03 am    Post subject: Reply with quote

Thank you as always!
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mjbonsais
Adélie Penguin
Adélie Penguin


Joined: 28 May 2005

Posts: 118
User's local time:
2017 Oct 22 - 4:22 AM


Food Intolerances : gluten, milk, egg, yeast

PostPosted: Sun Nov 22, 2015 4:34 pm    Post subject: On my Charistmas list Reply with quote

I asked Santa for the combination package of These books. He told me with my complacency with my known intolerances he'd have to ask his queen Mrs.Klaus- the boss at the North Pole. Please no coal I will promise diligence!
_________________
I Am Someone Special
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