Survey On Response To Treatment For MC

[tex]

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

[MaggieRedwings]

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

[Tessa]

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

[Camryn'sMommy]

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

[JLH]

Hi, Laura, it's good to hear about Camryn. Not good to hear about chocolate. 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. 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.

[JLH]

http://74.125.47.132/search?q=cache:dm7 ... clnk&gl=us

[tex]

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

[grannyh]

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

[tex]

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

[artteacher]

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

[kate_ce1995]

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

[tex]

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

[Memory]

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

[TooManyHats]

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 . But I must admit that I'm feeling much better and without medication, which makes me happy.

[tex]

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