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Survey On Response To Treatment For MC
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What type of treatment are you using, and how effective is it?
I'm not using any treatment, and I'm not having any significant symptoms.
3%
 3%  [ 3 ]
I'm carefully following the GF diet, and I'm in remission.
6%
 6%  [ 6 ]
I'm carefully following the GF diet, and my symptoms are improved, but I'm not in remission.
6%
 6%  [ 6 ]
I'm carefully following the GF diet, but I'm not seeing any improvement.
0%
 0%  [ 0 ]
I'm carefully avoiding gluten, and dairy, and I'm in remission.
3%
 3%  [ 3 ]
I'm carefully avoiding gluten, and dairy, and my symptoms are improved, but I'm not in remission.
7%
 7%  [ 7 ]
I'm carefully avoiding gluten, and dairy, but I'm not seeing any improvement.
1%
 1%  [ 1 ]
I'm carefully avoiding gluten, dairy, and soy, and I'm in remission.
2%
 2%  [ 2 ]
I'm carefully avoiding gluten, dairy, and soy, and my symptoms are improved, but I'm not in remission.
7%
 7%  [ 7 ]
I'm carefully avoiding gluten, dairy, and soy, but I'm not seeing any improvement.
0%
 0%  [ 0 ]
I'm carefully avoiding gluten, dairy, soy, and other proteins, and I'm in remission.
1%
 1%  [ 1 ]
I'm carefully avoiding gluten, dairy, soy, and other proteins, and my symptoms are improved, but I'm not in remission.
8%
 8%  [ 8 ]
I'm carefully avoiding gluten, dairy, soy, and other proteins, but I'm not seeing any improvement.
0%
 0%  [ 0 ]
I'm taking Entocort, with no diet changes, and I'm in remission.
4%
 4%  [ 4 ]
I'm taking Entocort, with no diet changes, and my symptoms are improved, but I'm not in remission.
3%
 3%  [ 3 ]
I'm taking Entocort, with no diet changes, but I'm not seeing any improvement.
0%
 0%  [ 0 ]
I'm avoiding a few foods, and taking Entocort, and I'm in remission.
2%
 2%  [ 2 ]
I'm avoiding a few foods, and taking Entocort, and my symptoms are improved, but I'm not in remission.
4%
 4%  [ 4 ]
I'm avoiding a few foods, and taking Entocort, but I'm not seeing any improvement.
0%
 0%  [ 0 ]
I'm avoiding many types of food, and taking Entocort, and I'm in remission.
3%
 3%  [ 3 ]
I'm avoiding many types of food, and taking Entocort, and my symptoms are improved, but I'm not in remission.
11%
 11%  [ 11 ]
I'm avoiding many types of food, and taking Entocort, but I'm not seeing any improvement.
5%
 5%  [ 5 ]
I'm taking some other medication for MC, and I'm in remission.
1%
 1%  [ 1 ]
I'm taking some other medication for MC, and my symptoms are improved, but I'm not in remission.
7%
 7%  [ 7 ]
I'm taking some other medication for MC, but I'm not seeing any improvement.
2%
 2%  [ 2 ]
I'm following some other type of diet, and I'm in remission.
0%
 0%  [ 0 ]
I'm following some other type of diet, and my symptoms are improved, but I'm not in remission.
5%
 5%  [ 5 ]
I'm following some other type of diet, but I'm not seeing any improvement.
1%
 1%  [ 1 ]
I have mast cell involvement, so the above choices do not fit my situation.
1%
 1%  [ 1 ]
I have UC, and diet changes definitely seem to help.
0%
 0%  [ 0 ]
I have UC, but diet changes do not seem to help.
0%
 0%  [ 0 ]
I have Crohn's, and diet changes definitely seem to help.
0%
 0%  [ 0 ]
I have Crohn's, but diet changes do not seem to help.
0%
 0%  [ 0 ]
Total Votes : 93

Author Message
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 4:59 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: Thu Oct 29, 2009 1:23 pm    Post subject: Survey On Response To Treatment For MC Reply with quote

Hi All,

At Dee's request, I've set up a survey to try to tabulate the effectiveness, (or lack thereof), of the treatments that we use to control, (or try to control), our MC symptoms.

Please respond by selecting the choice that most closely fits your situation. Please read through all the choices, before making your selection, because once your selection is submitted, it cannot be changed.

In order to reduce the number of choices needed for this survey, lets just assume that most of us avoid certain foods, that are not true intolerances, (that is, they do not actually trigger an autoimmune reaction), but they still "irritate" our gut, and/or cause D, including foods that contain a lot of fiber, sugar, artificial sweeteners, sugar alcohols, or whatever, so please ignore those items when picking your response to the survey. IOW, let's only be concerned with the proteins that are known to actually cause autoimmune type reactions. That means that the selections that refer to other proteins, apply to certain other known food intolerances, such as yeast, eggs, corn, etc.

When making selections, if you are following a diet, (and regardless of whether or not you are also taking Entocort, or some other medication to treat MC), consider that sooner or later, all of us accidentally eat something that we shouldn't, and have a reaction, but remission refers to the condition where we are generally symptom-free, so long as our diet is not somehow "compromised". Those who eat out a lot, are naturally more likely to have more dietary "insults" than those of us who almost always eat at home.

If none of these selections fit your situation, please post an explanation, if you don't mind sharing the information.

Please be aware that a high percentage of responders will be "works in progress", who are working toward remission, but still have a way to go, and most members who have achieved remission in the past, no longer visit the board, so the results will obviously be skewed, by the absence of so many voters who are in remission, (but will not respond to this poll), and many voters who have not yet had sufficient time to achieve remission. Even so, the results should be interesting, and should provide some insight into how we're doing, as a group.

Many thanks for your help,
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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MaggieRedwings
King Penguin
King Penguin


Joined: 31 May 2005

Posts: 3865
User's local time:
2017 Sep 26 - 5:59 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania

PostPosted: Thu Oct 29, 2009 2:29 pm    Post subject: Reply with quote

Great Poll Tex and great idea Dee!

No gluten, soy, dairy and some other proteins - eggs, beans, etc. Still not in remission after all these years.

Love, Maggie
_________________
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Tessa
Rockhopper Penguin
Rockhopper Penguin


Joined: 26 May 2005

Posts: 775
User's local time:
2017 Sep 26 - 11:59 AM


Food Intolerances : Gluten & casein
Location: Málaga, Spain (Costa del Sol)

PostPosted: Sun Nov 01, 2009 1:36 pm    Post subject: Reply with quote

I´ve voted for:
I'm carefully avoiding gluten, and dairy, and I'm in remission.

Wonder what the survey will show.

Great idea
Love
Tessa
_________________
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Melon,Pineapple, Avocado, Strawberry & Oranges: anaphylactic reaction.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
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Camryn'sMommy
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 21 Aug 2008

Posts: 87
User's local time:
2017 Sep 26 - 5:59 AM


Food Intolerances : Gluten
Location: Langhorne, PA, USA

PostPosted: Tue Dec 08, 2009 2:20 pm    Post subject: Reply with quote

I answered for Camryn, of course. She is eating gluten free and is in remission. She also avoids chocolate and citrus, but there wasn't an option for that :)

She is interested in meeting other kids who eat gluten free. Any ideas on how to find Celiac play dates? I figure I'm not going to find another MC child that lives near us. I've only found 2 in the country that are near Camryn's age (3 1/2).

I'm sorry to hear about Sally everyone, it sounds like she was a great lady.

~Laura
_________________
Mommy to Camryn - 8 years old - dx'd with LC 8/08
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JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4276
User's local time:
2017 Sep 26 - 4:59 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Tue Dec 08, 2009 7:44 pm    Post subject: Reply with quote

Hi, Laura, it's good to hear about Camryn. Not good to hear about chocolate. Mad crying I haven't been able to eat it either...not even the Enjoy Life, everything free kind.

At one time, Tex said I might be able to eat it again. Another time, he said he hoped he knew what he was talking about when he said that. Shocked I'm hoping anyhow.

Were you able to communicate with the Iowa Mom? She wouldn't even stick around here to read a little bit. We could have helped her poor daughter more than the "enlightened" doctors. We tried.
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4276
User's local time:
2017 Sep 26 - 4:59 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Tue Dec 08, 2009 7:49 pm    Post subject: Laura Reply with quote

http://74.125.47.132/search?q=cache:dm7HAoGd100...ct=clnk&gl=us
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 4:59 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 Dec 09, 2009 1:18 am    Post subject: Reply with quote

Hi Laura,

Thanks for voting in the survey, and it's great to see that Camryn is continuing to do well on her diet.

I agree that checking out some local celiac support groups is probably the best way to locate kids following the GF diet. You might luck out and be able to find some who live reasonably close to you. The list that Joan posted a link to, appears to offer a lot of good leads.

Good luck in your search,
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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grannyh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 29 May 2005

Posts: 1011
User's local time:
2017 Sep 26 - 6:59 AM




PostPosted: Sat Dec 12, 2009 1:21 pm    Post subject: Reply with quote

I am wondering if the dosage of entocort might count for different results. I took 3 pills a day for a couple of years. I now take only one a day.. unless I have gotten into some food that causes problems. Then two pills a day for a few days fixes me up:)
grannyh
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 4:59 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 Dec 12, 2009 3:22 pm    Post subject: Reply with quote

Hi GrannyH,

Indeed the dosage does make a difference. I wanted to add that to the poll, but there were so many options already, that I decided not to make it any more detailed than it already was. Probably, there are a few members who could achieve remission initially, much faster, if they were taking 18 mg of Entocort EC per day, at the start, rather than 9 mg, but doctors are reluctant to prescribe that much, because most of them don't understand the difference between Entocort EC and Prednisone, so they stick to recommended label limits when writing prescriptions.

Thanks for pointing that out.

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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artteacher
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Joined: 24 Aug 2005

Posts: 725
User's local time:
2017 Sep 26 - 6:59 AM




PostPosted: Sat Jan 02, 2010 1:20 pm    Post subject: . Reply with quote

Hi Tex and everyone,

I voted - "a special diet, improved, but not in remission". I just thought I'd clarify, and say that my diet is dairy, & grain free, and low sulfite/corn products. (Corn is the base material that a lot vitamins, preservatives and dyes are made of. The sufites (which are used to break down the corn into pulp) stay with those products as they are applied to foods like potatoes, flaked coconut, or marachino cherries.

Marsha
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kate_ce1995
Rockhopper Penguin
Rockhopper Penguin


Joined: 25 May 2005

Posts: 1321
User's local time:
2017 Sep 26 - 5:59 AM



Location: Vermont

PostPosted: Sun Jan 17, 2010 7:36 am    Post subject: Reply with quote

Well,

Others beat me to the punch for play-dates for Camryn...local (or near but not so local) celiac support groups seems to be the way to go. Perhaps networking through the doctor's offices might be helpful...maybe through the nearest Children's hospital. Obviously they won't tell you who else has celiac, but if you leave your name and contact with permission to provide it to newly diagnosed celiac moms (and dads) you might find some others.

As for the poll, I guess I'm too late to select an option, but it's stll a work in progress for me. I've been dairy, and gluten free since January 2009 (gluten free since 2003 or 2006 depending on how you want to look at strictness to diet). Was doing fine when in July 2008 my symptoms came back with a vengance (and in January 2009 had another doc tell me that I wasn't sick but that what I was experiencing was a nuisance. Anywho, the longer I was dairyfree, I started to be able to see that soy may indeed be a cluprit. I can't really say I've managed to become completely soy free, but I'm finally getting some normal looking poop...still skinnier than normal but improving in appearance. At Christmas, given the lack of completely "free" food, I eneded up eating a LOT of dandy candy which is pure butter and sugar. And I didn't react!

I am now successfully eating gluten and soy free and tolerating dairy. I'm still getting into soy to some degree (as I get more careful about reading labels) and the main symptom there for me is extreme gassiness (to the point of pretty painful, and pressure on my back so back issues will flare up). And for what it's worth, soy oil and soy lecithin bother me (aren't they supposed to be protein free?)

Katy
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 4:59 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: Sun Jan 17, 2010 9:30 am    Post subject: Reply with quote

Katy,

It's never too late to add your vote to any poll, if you haven't yet cast a vote.

Yep, according to the experts, soy oil should contain no protein, but almost everyone here who is sensitive to soy, reacts to even tiny amounts of soy oil, (and soy lecithin).

It's good to see that you're doing well, and able to tolerate dairy now. The same thing happened to me - after I was in remission for a while, I found that I was able to tolerate diary products again.

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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Memory
Little Blue Penguin
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Joined: 17 Aug 2010

Posts: 34
User's local time:
2017 Sep 26 - 5:59 AM



Location: Kentucky

PostPosted: Tue Aug 17, 2010 2:38 pm    Post subject: Reply with quote

I'm avoiding a few foods, and taking Entocort, and my symptoms are improved, but I'm not in remission.
bunnyjump
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TooManyHats
Rockhopper Penguin
Rockhopper Penguin


Joined: 14 Jan 2011

Posts: 550
User's local time:
2017 Sep 26 - 6:59 AM


Food Intolerances : Gluten Soy Dairy Spices including cinnamon, cloves, and ginger
Location: New Jersey

PostPosted: Sun Jan 16, 2011 10:48 pm    Post subject: Reply with quote

I voted for avoiding gluten, dairy, and soy and seeing improvement, but not in remission. While I don't currently have D, I can just tell my system is "tentative". I'm not sure how to explain that, it's kind of a technical term Wink. But I must admit that I'm feeling much better and without medication, which makes me happy.
_________________
Arlene

Progress, not perfection. devilangel
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 4:59 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: Mon Jan 17, 2011 9:44 am    Post subject: Reply with quote

We seem to be doing pretty well, all in all. As of this date, 25% of us are in remission, and another 49% are improved, (though not in remission). Since most people are likely to respond to this poll early on, (rather than after they have fine-tuned their treatment program and allowed time for healing), hopefully, many in the "improved" category eventually achieve remission, (but, of course, one can only vote once in this poll).

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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