Roni - about the journey to remission

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moremuscle
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Roni - about the journey to remission

Post by moremuscle »

Good Morning, Roni

You asked in another thread about my path to remission -was I aggressive from the start or did I start slowly.

I will try to find a response to this question on the old board and copy it into this thread but here is a short answer to your question.

I started GF in July of 2004. Three weeks later I started DF based on information from the GF Kitchen folks. I was GF/DF for a couple of months w/o getting significantly better so I was worried that changing my diet wasn't going to help. I remember asking over and over again how soon I should expect to see results?! I desperately wanted results - as you know, we feel very bad when we have symptoms. I was adviced to give the diet 6 months - after that if I still hadn't seen results perhaps I was reacting to additional triggers. I wasn't patient enough to wait 6 months for results - had D accidents all the time and just felt completely terrible; could not leave the house w/o having major problems etc.
After going dairy free I had tried some milk substitutes such as soy milk, rice milk, almond milk. I had terrible reactions to the soy milk. I also reacted to the rice- and almond milk - I attributed the reactions to the latter two to carrageenan because Polly had mentioned she reacts to that. So after discovering that I reacted to soy I started focusing on avoiding soy. I still had bad accidents and continuous rumbling and gas galore, explosive watery diarrhea. I decided that I would have to try to eliminate all the triggers that the MIers were avoiding in order to see if I would get better. I felt hopelessly inadequate in figuring out how to do that. I started reading the list of foods/derivatives to avoid when on a corn free diet and I quickly realized I could not begin to remember all those chemicals. It was very overwhelming. Nevertheless I asked myself the question: Do you want to be well or do you want to be sick? What you are doing now makes you sick, so if you want to be well, you have to do what the well people do. I was kind of feeling at a loss as to how to handle it and looked around for my MOMMY - she wasn't there and I thought to myself, Karen, you are a big girl now, you can do it!! If it takes a long time to figure it out, that's OK. If I make mistakes, that's OK, I will learn from them.....
IOW I gave myself a big pep talk and decided I was the only one who could make me well. I would take on the big MI-diet beginning NOW! and I did. It took me several weeks before I realized that the simplest way to do it right was to avoid premade things (things that come in boxes, bags, bottles, jars, etc.). When I read labels I put all things down that had more than 4 ingredients on the list. I went SIMPLE and BASIC. I bought fresh produce, period.
Approx 3 weeks after starting the MI diet (gf, df, sf, cf, yf) I went into remission and stayed in remission for 1 1/2 months. I sabotaged my own remission by introducing some foods that I later discovered were trigger foods too. After taking those out of my diet I have been in remission.

It was not necessary for me to eliminate all grains from my diet in order to go into remission. In fact the first remission was reached on eating large amounts of rice-meals that I cooked in my rice cooker. I added ground meat and sauteed vegetables to brown rice and cooked it in the rice cooker. I then stored the left overs in tupperware containers that I could take out of the fridg and reheat in the microwave oven. This made it easy and convenient. I ate the same meals 3-4 days in a row. Then I made another batch with a slightly different mix of veggies and meat and ate that for the next 3-4 days. For dinner I typically had steak, pork/lamb chops, hamburgers, flank steak, chicken with veggies and or salad and a baked potato.

Roni, this became long - hopefully it will give you some ideas and inspiration to keep working on Emily's diet.

I have a relatively driven or aggresive personality - it came in fairly handy in this case. However, I think you have an equally driven personality - you are extremely dedicated and hard working and I don't doubt for a second that you will find the way to bring relief for Emily. You are well on your way to succeed.

Don't forget to take good care of Emily's mother too :smile: She deserves a little tender love and care.

Love,
Karen
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ronipow
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Post by ronipow »

Karen,

Thank for giving such a detailed response. I think this will help others too.
Rice and potatos are my big concern. Should we stay GF DF CF YF and still
eat rice and potatoes. Or just get rid of those too.

You seemed to go in remission on those. Maybe we should just eliminate
rice and potatoes for a couple of weeks and see if there is a differnce.

She always has a little trouble after eating. She still rubs her stomach after every meal.

This weekend after the garbonzo bean she had a horrible attack that lasted
2 1/2 days to recover. Lot's of colon pain with those.

Her D is alway consistant. Three times a day, no urgencey. We though with the introduction of zinc and calcium thing were starting to change just a little bit. She thougt the beginning of her stool was starting to form.

Need to check back in with here about that.

Thanks Karen for helping me out. hope I don't sound like a broken record.
I can't wait until we say,"She's in remission:

ROni :wink: :wink:
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ronipow
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Post by ronipow »

Karen,

Would you post that in your medical profile? It's a good place to refer people to or copy and paste from this site.

Roni
Marsha

Post by Marsha »

Darn it Roni,

You beat me to it. What a wonderful retelling of the experience, Karen. You go, girl.

Love, Marsha
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Post by Mars »

Thanks for sharing your story Karen. Kudos to you for such a wonderful attitude throughout! Wish I had your determination. I am still in the denial stage that I can't eat whatever I want.....

You are an inspiration to those of us struggling! Keep up the good work!
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Post by moremuscle »

Hi girls,

I'm finally back at the computer after another hectic day. I have to tell you - reading your posts in response to mine makes me feel great - Thank you :oops:

Roni, it is really great if the zinc and calcium is helping to get formed stool - even if it is only formed in the beginning, it's still progress. I often have more form to the stool in the beginning of the BM than toward the end of it.

I thought I would mention that Polly and Wayne both eat potatoes (it is likely that most people in remission eat potatoes) - I think Polly for example has mentioned she eats a lot of potatoes (ask her!). I don't think the problem for us with these immunesystem issues lie primarily with the potatoes so if Emily likes them you probably don't need to eliminate them. I tend to think the same thing about the rice - but there are quite a few people here that report having trouble with grains - rice is a grain.

Marsha and Margie - I appreciate your comments very much. I am very happy to know that you read my post and found inspiration in it. I have always loved to read other people's testimonies - just didn't know anyone would enjoy reading mine.

Margie, you know what? I did have a good attitude most of the time but I often needed a lot of encouragement from my kitchen buddies - I was very frustrated, depressed, and feeling hopeless at times. But every time we make a mistake or every time we don't see results from our efforts we just have to pick ourselves up and remember that we are human and that progress isn't made in straight lines. Sometimes we make a big leap forward - but a lot of work often goes into our diet before that happens. Just keep your mind focused on what you REALLY want: Getting well :smile:

Love,
Karen
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