Good News

Kari · Post by **Kari** » Sun Nov 07, 2010 1:06 pm

First of all, if I have missed any "newbies", welcome to this wonderful forum of "sharing and caring". For anyone suffering with MC, it does not get better than this "family", which is kept going by a few amazing "old-timers", dedicating their time, compassion and knowledge for the benefit of us all.

Before summarizing my MC story so far, let me just echo the sentiment expressed on this forum lately "THIS IS REALLY HARD". I know a few of you are going through a very rough period lately, but as has been said numerous times on this board - if sticking with your resolve to take care of yourself, whichever way you think best, it does get easier over time!!!

I've had MC at least 10 years, and after experimenting with various methods to control it, I only had lasting success starting last summer when I discovered the gluten connection. I have since done the Enterolab testing and found out that I'm also dairy and yeast intolerant. Starting July 16 I went gluten free and started to keep a log of my BM progress. Here is the summary:

First 4 week period: Average BM's 3 times a day (down from roughly 5-15)

Second 4 week period: Average BM's 2.5 times a day - also experienced my first time in 10 years of having only one BM in a day - HUGE milestone:)

Third 4 week period: Average BM's 2 times a day - experienced many more "one BM onlys"

Fourth 4 week period: Average BM's 1.4 times a day

If I only count the 24 days after getting my Enterolab results and also going yeast free, my average has dropped to 1.1 per day.

I have not yet had a visit from the ever elusive "Norman", but have come close a couple of times.

This steady improvement leaves no doubt in my mind that I'm on my way to healing, and while I'm healing I'm limiting my diet to the best of my ability. Here is a list of the food that I'm currently eating:

Chicken and pork - made with just salt, pepper and fresh lemon or lime
I've tried shrimp a few times, but it's an open question whether I can tolerate them
Bacon and eggs
Gluten free smoked turkey breast
Fresh onion and garlic
Home-made Hummus
Avocado
Rice and rice noodles
Spaghetti sauce w/fresh onion and ground beef
White northern beans w/fresh onion and garlic
Well cooked broccoli and carrots
Mochi
Mixed nuts
Rice crackers and rice cakes
Rice and Shine cereal
Earth Balance natural buttery spread
Nutty Granola cereal (made by Bakery on Main)
Hemp milk (have decided this is my favorite of the non-dairy milk products)
Bananas
Peeled apples
Coconut flakes
Coffee w/honey and hemp milk
Gatoraid

I also take B12 and Folic Acid

I'm trying not to add more items at this point in the healing process. If I ever get to Norman, I'll try adding one item at the time.

So the good news is that I believe I'm well on my way to healing by diet alone. It is a hard struggle, and I definitely think I'm working my way through the "stages of grief" - I have been very angry and depressed many times.

My hardest struggle now seems to be with restaurants. What used to be such a pleasurable experience has turned into somewhat of a nightmare for me. First I deal with the fear of being "glutened", then I deal with the hassle of delineating my "special needs", all this while watching other people gorge themselves on whatever strikes their fancy. I just can't help but feel anger, resentment and depression. My fiance loves to eat out, but thank goodness, he is willing to accommodate my current aversion. If you had asked me half a year ago if I could give up bread, cheese and restaurants, I would simply have laughed, but it is amazing how adaptable we are as human beings.

As I'm getting rid of the D and feel more energy coming my way, along with a renewed sense of reclaiming my life, it gets easier and easier to adapt to the GF/YF/DF lifestyle. I'm actually feeling great more often than not - perhaps I should start a log of "happy days" versus "crappy days":).

Wishing you all the best in your pursuit of reclaiming your rightful quality of life!!!

Warm regards,
Kari

Gabes-Apg · Post by **Gabes-Apg** » Sun Nov 07, 2010 1:13 pm

Kari
thanks for sharing and wow - your ingredient list is double mine so i am slightly envious but delighted in what you have achieved in a short period of time

all this while watching other people gorge themselves on whatever strikes their fancy. I just can't help but feel anger, resentment and depression

Funny you mention this - the work xmas party is coming up and people ask me if i am going, i cant help but reply, "why would i spend $50 of my money to watch people eat and drink things i cant.... it is hard enough to do that when i dont have to pay!"

I spent the $50 on some books, something that i can enjoy for me that doesnt involve food or drink!

Post by **Rosie** » Sun Nov 07, 2010 1:54 pm

That's great news, Kari! Keeping a log like yours is a great way to track progress and stay motivated. Progress on a daily basis can be hard to see, but over a 4 week period becomes much more noticeable. You have made amazing progress in a relatively time! Seeing the detailed progress report and list of foods you have in your diet is very helpful for newbies.

I'm about 14 months down the road, and when I look back at where I was a year ago, I'm doing well and so grateful for all the help I've received here on the Forum.....

Gabes, good for you for not giving in to peer pressure and paying all that money for the work X-mas party that you really can't participate in. Your story reminds me of one of my pet peeves when dining out. This happened yesterday. Once a month my cousins get together for lunch at a nice restaurant. This time we ate at a seafood restaurant where the meals all come with lots of goodies, like cheese bread, a salad and soup, and other veggies, potatoes, etc on the plate along with the main piece of fish. So I quizzed the waiter about what was available, and finally ended up with a plain piece of grilled halibut and some bare naked sliced tomatoes. And then I got charged the full cost of the meal, even though no bread, no salad, no soup, and no other goodies on my plate. I felt cheated and wished that I had just ordered a cup of tea and then ate when I got home.

Rosie

Post by **tex** » Sun Nov 07, 2010 3:36 pm

Kari,

That's a great progress report. It's obvious that you're closing in on complete remission, due to your dedicated efforts, and attention to detail. I hope that your steady progress continues, and that Norman will arrive any day, now.

Thank you for a very uplifting and informative update.

Tex

Celie · Post by **Celie** » Sun Nov 07, 2010 7:48 pm

Thanks for the post. I am three weeks into the SCD diet (Grain free, dairy free and basically processed food free). I had a bad experience with a restaurant this week and then had to go to two parties where I could not eat many things I wanted. I know that it will get better, but right now those things make it hard...

Celie

Linda in BC · Post by **Linda in BC** » Mon Nov 08, 2010 12:56 am

Kari, I am so happy for you to hear of your success with diet alone. Keep up that dedication and positive attitude. It does get easier with time , doesn't it?!!! (Except for the eating out ..and maybe even that will! )

Linda

Kari · Post by **Kari** » Mon Nov 08, 2010 8:06 am

Thanks for our well wishes.

Gabes - you surely made the right decision about the Christmas party - an experience that should be joyous would most definitely have become very painful...... good for you that you're learning so well how to look after yourself .......

Rosie - yes, I find that the log helps me stay on track - for instance I got glutened on miso soup a couple of days ago, and it's soooo upsetting, but then I look at my documented steady progress and get motivated to keep going. You're right about newbies - I'm hoping that the list of foods I'm eating can help someone new, as it all seems so overwhelming when first starting out ......

Tex - as usual, your encouraging comments are very appreciated ........

Celie - unfortunately, there is no way to escape how difficult this is to do, only time, feeling better and seeing results makes it easier - lots of luck to you in your struggle .........

Linda - I often think about you and the success you've had on only one entocort - I'm still not ruling out that I may have to try it "your way":). I actually forgot to mention in my post that I take pepto when having trouble. For instance, last night I had to take 2 peptos since my stomach was still not settled after the miso soup experience. I've taken peptos about 3 to 6 times a month, and it works fairly well.

Kari

Linda in BC · Post by **Linda in BC** » Mon Nov 08, 2010 10:21 am

Kari, as I mentioned in an earlier post to Ant, I had been very careful of my diet for 4 months and had managed to erradicate most, if not all, of my triggers, plus was on Low Dose Naltrexone (LDN) for those 4 months as well, prior to starting the Entocort. The LDN did bring me almost to remission when I first started it, and had I stayed with it, who knows what might have eventually happened, but I have so many food intolerances that just kept surfacing and I just lost patience and decided to bring out the "big guns" (in my books) . But I do suspect that I have finally figured out all of my intolerances (the last one, and a big one , was eggs, and that happened only about a week before I started the Entocort) and that I was on the verge of a big improvement in my condition anyway.

Linda

Kari · Post by **Kari** » Mon Nov 08, 2010 10:35 am

Hi Linda,

Funny you should say that about eggs. I've started to suspect that they are causing problems for me. A few days ago, I felt very nauseous after eating eggs and bacon. Since then, I have continued with the bacon, but without eggs, and am doing OK. Thus, I think the eggs have to go for now :(. This morning I had hot rice cereal with bacon. I think I will probably come across more intolerances as days go by and will try to continue to be patient.

You're probably right that you may have ferreted out all your intolerances, but staying on the 1 entocort a day for now is probably a great "insurance policy". I have to admit I'm jealous of your "Normans".

Kari

Linda in BC · Post by **Linda in BC** » Mon Nov 08, 2010 1:46 pm

Oh, Kari, I have not for one minute entertained any idea of going off the one Entocort a day for a loooong, looong time!

Sorry to hear you are suspecting eggs. Hopefuly they will be something you can add back in eventually. I love bacon, and your hot rice cereal with bacon sounded good :-)

If you do decide to cut out eggs and want to do some backing , I have found both a decent cookie and a decent muffin recipe that are eggless, dairy-less, wheatless and soyless that I would be happy to share! You can use 2 TbLsP of ground flax plus 1/4 cup of warm water ( mixed together and let sit for a few minutes to thicken) as an egg replacement in baking. It seems to provide the neccessary binding and moisture though I am not sure if it gives the same lift as eggs. A little bit more Baking powder or soda would do that.

Linda

Joefnh · Post by **Joefnh** » Mon Nov 08, 2010 1:53 pm

I agree with the Christmas party issue. I just received the notice in email today about signing up and after reflection of trying to eat a 'safe' GF food this weekend, there is no way I am going to a party for 3 hours to watch people eat things I would like to eat... talk about a depressing time.

I am going to have to come up with an alternative activity...

--Joe

takef586 · Post by **takef586** » Mon Nov 08, 2010 2:22 pm

Kari,
If you are yeast intollerant, pay attention to smoked foods, coffee, sugar (honey), dried fruit (nuts), and sweet fruits in general, From what I have gathered around on the net, all these contain, or can get easily contaminated with yeast.

Kari · Post by **Kari** » Mon Nov 08, 2010 4:37 pm

Linda - thanks for the tips - I'm not yet up to the task of baking, but it will probably be part of my life down the line ........ I'm actually in incredible spirits right now - went to Natural Foods and found a brown rice bread that's gluten, dairy, yeast and egg free (the company it's made by is ENER-G Foods, Inc. located in Seattle, WA). Just had my first smoked turkey breast sandwich in 4 weeks - the bread wasn't nearly as good as UDIs, but beggars can't be choosers:). I'm keeping my fingers crossed that I'll not react ........

Marek - thanks for the heads up on the yeast ..........

Kari

JoAnn · Post by **JoAnn** » Mon Nov 08, 2010 4:51 pm

Kari, glad you are doing so well and feeling so upbeat. I noticed hummus on your list. I've avoided that since my diagnosis but think I will give it a whirl while I have some time off from school. I added refried beans back in a couple of months ago and had no problems. I have been off eggs for 2 years as I tested positive to them on the enterolab tests. I discovered by accident that I don't seem to react to them in baked goods. I really got brave this past weekend and ate a duck egg for breakfast Sat. & Sun.-no reaction yeah! (I should mention I have a little flock of chickens and 4 ducks) Good luck on your continued success. JoAnn

Kari · Post by **Kari** » Mon Nov 08, 2010 5:02 pm

JoAnn - glad you discovered you can eat duck eggs:). Since I seem to tolerate hummus quite well, it has become such a staple for me - I use it with chicken, pork, etc. in lieu of sauce, as well as on rice crackers ....... good luck with trying it.

Kari