Good start - but now what?

Joonas · Post by **Joonas** » Sun Jun 03, 2018 12:58 am

Hello, im pretty new on here. My first post, but i have been reading a lot. Last week started a new diet with your instructions:

Lots of meats (turkey, pork, tuna, salmon) with only salt.
Low fiber, no raw veggies or lettuce. Actually just carrot now, well cooked.
White rice and potato mash.
Olive oil, coconut oil.

One week and what a feeling, pretty normal stool, no brain fog. Im on entocort now but still its a good start!

My question is. What next? Diet is so restricted its getting pretty boring. What sauce could be safe? Cant think of any :/

How would you proceed from here? What to add? Thanks for this forum. One week of this and iv got my hope back. Been struggling since 2014.

Pam V · Post by **Pam V** » Sun Jun 03, 2018 6:42 am

Hi Joonas, I ate a very limited diet for the first several months ~ I would vary my protein (turkey, beef, salmon) with white rice or red potato for 3 meals/day. If you make your own bone broth, that adds a nice flavor to the turkey and beef meals. I would freeze the broth in ice cube trays and add it to my meal before heating. As you continue to feel better, I think you won’t miss the variety as much as you do now. In a few months as things go well, you will be able to have more variety.

Your country flag ~ Finland caught my eye. Both of my mom’s parents came to the US from Finland. My Grammy made the best Nisu (don’t know if I spelled that right:). I would like to try and make that gluten and dairy free sometime ~

Best wishes, Pam

Post by **tex** » Sun Jun 03, 2018 7:13 am

Hello Joonas,

Welcome to the group. Pam has some good advice.

You ask, "What next?" Well, next you must give the diet changes time to heal your digestive system. The intestines heal rather slowly — much more slowly than most people (including physicians) realize. In fact, research shows that it usually takes 3 to 5 years for the average adult to completely heal. Kids usually heal in less than a year. But the good news is that your intestines don't have to completely heal before you will reach stable remission and you can taper off the Encocort and begin adding raw vegetables and more fiber back into your diet. Most people can accomplish enough healing in about 6 to 8 months to be able to slowly taper off the Entocort and expect the diet to control their symptoms. Some people are able to do it sooner, but the problem is that the Entocort will mask your symptoms, so that as long as you are taking it you will be unable to tell if any particular food is a problem or not. So you can't safely add any foods back into your diet as long as you are taking Entocort because when you stop the drug you may begin to react again and you won't know which foods are the reason.

Discontinuing the Entocort must be done very carefully. If you stop too soon, your gut may not be healed sufficiently and you will relapse. Even if your gut heals sufficiently, you can't afford to stop the Entocort too rapidly or you will risk having a rebound effect due to mast cell population recovery, which will result in a relapse. Remember, research shows that about 85 % of MC patients relapse when their Entocort treatment is ended, so it behooves you to do this carefully so that you will avoid a relapse.

Virtually all commercial sauces and condiments contain so many ingredients that at least one or more of them will cause us to react. You might be able to tolerate many of them while you are taking Entocort, but when the treatment is ended you will relapse. So it's best to do without them until you are off the Entocort and in stable remission. Then you can try one and see if you can tolerate it. You cannot safely test any foods as long as you are on Entocort.

You are well on your away to recovery, it's just a matter of time now. Again, welcome aboard, and please feel free to ask anything.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sun Jun 03, 2018 2:49 pm

Tex has covered pretty much everything I would say.

Long story short, what next.
If you want to have good long term healing and optimise future wellness then stick with the bland low amount of ingredients as much as possible, for as long as possible.

There is stage 2 eating plan suggestion in the guidelines to recovery section,

Joonas · Post by **Joonas** » Mon Jun 04, 2018 4:57 am

Thanks guys for great tips and help!

Just got back from gastroenterologist that has been helping patients 25 years and he should be the specialist in these cases. He said to me:

- add fiber (psyllium)
- There is no cure
- Diet doesnt matter or there is no proof
- Entocort or if the symptoms come back, then we decide if its Entocort again or Imodium/Lopemaride.

Without finding this forum, I would be pretty lost now. Because thats the way our best specialists in Finland advice us...

So basically everything what he said is wrong or that doesnt give you any hope. Adding much Fiber now is a big mistake (recently learned from here) and diet is the key to recovery. Umbelievable. I didnt say anything, just stared couple of minutes and that was 30mins 150 euros.

But the positive side is that this forum exists and I just ordered that book "Understanding Microscopic colitis". And I already feel a little better with this new restricted diet.

And in our biggest stores in Finland they actually sell bone broth - made from reindeer marrowbone. Very expensive but seems soooo good. No extra ingredients in there.

But hey lets see how everything continues!

Joonas · Post by **Joonas** » Mon Jun 04, 2018 4:59 am

And Pam, you are basically finnish then.. ;)

Nisu sounds weird, let me ask my wife what could it be... :)

Marcia K · Post by **Marcia K** » Wed Jun 06, 2018 2:24 pm

Hi, Joonas. This group knows far more about finding remission than any doctor does! My doctor told me that gluten free is a fad. Almost 5 years later I still get sick if I accidentally ingest gluten. You've come to the right place to help you find remission.

Erica P-G · Post by **Erica P-G** » Wed Jun 06, 2018 3:46 pm

Welcome Joonas :-)

My Gi was NO help at all....basically said the same things as your dr has....I have refused to go back after my diagnosis of LC, I will treat and heal this on my own!

Cheers
Erica

Lilja · Post by **Lilja** » Thu Jun 07, 2018 6:03 am

Hyvä päivä, Joonas!

Your doctor is quite "normal" when it comes to understanding microscopic colitis. I was told "live as you have always lived, and eat what you want". Luckily I found this group in 2014 after having been ill since 2010-2011, and I finally started to understand that I had to heal myself with the help of this wonderful forum, with all the knowledgeable and lovely people here.

My digestion has been good for a couple of years, but I must have ingested something bad, or I may have been lazy as to the diet, because I find myself on the potty again. But, I have once proven to myself that it is possible to get my life back, so I trust this will happen this time too.

Wishing you the best of luck, and remember that no question is silly. Ask, ask and ask - and read, read and read here at the forum.

Lilja