diet

judie moore · Post by **judie moore** » Mon Sep 06, 2010 7:14 am

Am new to this page and not sure what to do. Have had MC for 3 yrs and not sure what kind of diet to be on. Recently quit smoking and gained 20 lbs.

hoosier1 · Post by **hoosier1** » Mon Sep 06, 2010 7:22 am

Hi Judy,

I am new too and asking the same questions as you.

I just started Entocort, but, I plan for today to be the first day of the rest of my life. In other words, I am starting a GF and DF diet (even though my biopsy came back negative for celiac sensitivity). I have always been an inconsistent eater, and now I have the warning message to get my life in order. I also travel a lot and that worries me with this condition. So I need to continue to find a way to manage that, even if I need to use Lomotil or the like as needed.

So I welcome you to join me in changing your diet starting today. Looks like a tough, but not impossible, thing to do. I am also starting to keep a food journal to record my reactions to what I eat. I am hoping to see sustained results through all of this.

Rich

Post by **tex** » Mon Sep 06, 2010 8:12 am

Hi Judie,

Welcome to our internet family. Well, if you're talking about a diet to control your MC, most of us have to avoid gluten and casein, and about half of us have to also avoid soy, and all it's derivatives. A few of us are also sensitive to proteins such as eggs, yeast, corn, carrageenan, etc.

If you're looking for a diet to lose weight, the low-carb diet, (Atkins), is probably as good as any, and since a low-carb diet is usually beneficial for MC, these diets can be combined, in order to accomplish both goals. Most of us feel better anyway, if we cut out all grains, (which gets us to the paleo diet, which is more comprehensive, and arguably healthier, than the Atkins diet).

As Rich suggested, this is a good day to use as the beginning of the rest of your life. Congratulations on stopping smoking. Hopefully, some diet changes will accomplish both goals, controlling your MC symptoms, and getting your weight back to where you want it. If you are currently using a corticosteroid to control your MC symptoms, that is probably contributing to your weight gains. Many of us here control our MC symptoms by diet alone, in order to avoid that problem.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

P. S. Rich, I responded to your post, in the "Treatment Discussions" forum, so your welcome message from me is there.

JLH · Post by **JLH** » Mon Sep 06, 2010 8:19 am

Judie and Rich: we're glad you found us.
This is the best place in the world for information and support for MC. Read as much as you can here starting with the information for newbies. Also, there is great information at www.enterolab.com

Polly, our member who is a doctor, has a great post which I will find for you.

Judie, I am Joan from Facebook.......

JLH · Post by **JLH** » Mon Sep 06, 2010 8:22 am

http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

judie moore · Post by **judie moore** » Mon Sep 06, 2010 9:44 am

Tks for the responses to my first post. I have found over the last 3 yrs, by trial and error what I can eat and what I can't eat. My sudden weight gain is probably because I quit smoking and started eating more! I was on the GF diet when I first got sick but the test was negative but it took me over 2 yrs to be able to eat bread. I am not drinking as much soymilk either just enough so I can have cereal. I really think I just need to cut down on my servings.....food tastes really good now though!My Dr. has told me I can have cheese; ice cream if I take Lactaid a half hour/hour ahead of time. Yeah right!!!!! When I want ice cream, I want it THEN not later!!We had a new grocery store open in a town close by and I may go over and see if they carry gluten free foods and I might try that diet again. I am back to my weight of 4 yrs ago....I had weighed the same for many years, give or take 5 lbs.
Good luck with your diet Rich. It isn't easy, especially if you travel and eat out alot. It takes awhile to get use to not being able to eat certain foods, the hardest part was cooking normally for the rest of the family and not being able to taste it first. lol
Thank you Tex for welcoming me to this site. I'm writing too much, time to get off the computer.

Post by **tex** » Mon Sep 06, 2010 11:38 am

My experience with Gluten was that as long as I was eating it, I never could tell that it made me sick, instead, it seemed that virtually everything else made me sick. After I cut gluten out of my diet, though, and allowed the damage that it had caused to my gut, to heal, for a couple of years, I was eventually able to reintroduce most foods back into my diet, (except for gluten, of course).

Ice cream is probably my biggest weakness, too, (because I am one of the lucky few here who are not also casein sensitive), and it's arguably one of the best ways in the world, to gain weight.

Incidentally, except for a few members who also have fully-developed celiac disease, virtually all of us here who are gluten sensitive, test negative to the classic celiac blood tests that you referred to, and yet most of us with this disease are just as sensitive to gluten, as the average celiac. In fact, many of us are even more sensitive to gluten than a typical celiac. Those blood tests are worthless, until celiac disease is fully developed. The stool tests that most of us use, (offered by Enterolab, in Dallas, TX), are much, much more sensitive, and they will detect antibodies to gluten at least 2 or 3 years sooner than the blood tests are capable of detecting celiac disease. For those of us with MC, who do not have one of the common celiac genes, though, we will never test positive to the blood tests, no matter how sensitive to gluten we might be. We have to use the stool tests to verify our gluten sensitivity, (or do it by trial and error).

Tex

ant · Post by **ant** » Mon Sep 06, 2010 12:57 pm

Welcome Judie,

Welcome Rich,

I (the guy from Hong Kong) am being lazy welcoming you in the same post, but you both joining at the same time tells us something as to how fast MC is going mainstream!!!

I am sure you will be reading lots of info from this wonderful site. Ask questions, however "gross" - we have all been there and done that

No worries.

Also doctors are still "exploring" the causes and treatments of this disease, so we learn from each other. I have learned and been guided by the people here. Without PP I dread to think what state I would be in today.

Again welcome and all the best in your journey to better health, Ant

Gabes-Apg · Post by **Gabes-Apg** » Mon Sep 06, 2010 7:44 pm

Gday from Australia Judie

Good luck with your diet Rich. It isn't easy, especially if you travel and eat out alot. It takes awhile to get use to not being able to eat certain foods

it can be hard work, but it is well worth it. through alot of trial and error type situations various members have come up handy things like for eating out - cards to hand to the waitress to pass to the chef (which can be translated into multiple languages)

and travel diary type posts with learnings from travel.

i was diagnosed in Dec 09, in June this year i braved a trip to France for work purposes. The transit alone was over 30 hours each way, with the right preparations this trip went ok.

as ant said - feel free to ask questions

take care and talk soon

Linda in BC · Post by **Linda in BC** » Wed Sep 08, 2010 9:04 am

Welcome from Canada, Judy!

It sounds like you have been left to your own devices to manage this disease for a while, as many of us have. And that you have made some headway. There are a few different meds and treatment plans that people on here use, usually in conjunction with diet. I have just tried a drug called Low Dose Naltrexone (LDN) for the last three months, with some improvement in frequency of BM's but no where near remission. Also, a powder called L-Glutamine, that you take three times a day mixed with a drink of some kind, seems to have quite a healing effect on the gut. One of our members, Stanz, has controlled her MC with basically just that. And then there is Entocort, that it seems the majority use, with good results for many. It is a steroid that releases later in the intestines, thereby avoiding most of the common side-effects of steroid treatment.
The main point is that everyone has to find what treatment plan works best for them. There is no one right way, as we have to consider so many individual factors such as finances, lifestyle, current physical location, etc.
I am sure you will find lots of support and great info here, to help you on your path to healing.
Welcome again,
Linda

Robbie · Post by **Robbie** » Wed Sep 08, 2010 11:05 am

Welcome to all from another Newbie. I've been using the Internet since 1995 and find this forum to have the most friendly and helpful bunch I've ever come across. Best wishes to you both!

Linda in BC · Post by **Linda in BC** » Wed Sep 08, 2010 2:52 pm

Ooops! And WELCOME

to you, too, Rich!
Linda

hoosier1 · Post by **hoosier1** » Wed Sep 08, 2010 3:32 pm

Thanks Linda and all:

It is nice to meet you all as well. Fortunately, I am not traveling this week as I start on Entocort. But next week I am back on the road again. I fly about 150K+ miles per year and am gone more than I am home, so this will be a challenge for me. The movie with George Cloonie called "Up in the Air" is pretty much me, except he got to eat anything that was put before him.

But in reality, I have been living with it for 5 years+ (possibly longer) in my opinion and have been "managing." But I want to do more than just manage. I want to feel and act well too. So my motivations are very strong. Today, I feel like garbage however. The Entocort (day 5) makes me feel poisoned. I am sticking with it though.

Appreciate all your support!!!!! Making my GF and DF dinner as we speak. And Tex, I dropped the Boost for now. I sure hope I don't test sensitive to Casein.

Rich

Joefnh · Post by **Joefnh** » Wed Sep 08, 2010 3:47 pm

Rich I found in a recent trip to Australia that I really needed to carry at some 'safe' foods with me as there was nothing at any of the airport shops and the choices on the plane were not acceptable. The gluten in certainly what affected me the most and if I do have some it will cause the aches and pains to increase (lower back and joints) as well as a return of the 'brain fog'. I just used a regular backpack to carry with me some GF snacks form the local health food store. For the most part i drank either water or apple juice.

Good lick on your travels and the Entocort

-Joe

hoosier1 · Post by **hoosier1** » Wed Sep 08, 2010 4:45 pm

Joe,

Good tips. Thanks.

You know, I have come up with some tricks that I use already to "survive" while on the road. Seems I need to keep adding more and more. Taking food with me is one way. Starving myself before I fly is another (bad I know). But I just thought of a third I will start to deploy. I typically stay at a Marriott Courtyard. But now, I am going to book Residence Inns or Townplace Suites for the kitchenette they provide. Not that I want to shop and cook wherever I go, but at least it gives me an option to "play it safe".

International travel is another story. For now, I have sworn it off. Like you, fortunately, I fly front cabin domestically and business class internationally. That helps a lot, especially with the flyer/bathroom ratio (if need arises). It used to be that taking 1 lomotil on an international flight was enough to get me by, but I wouldn't want to test that now.

Rich

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