Follow me on my healing journey

[Kiddo]

Hi everyone,

you may find my introduction here, if you are interested: https://perskyfarms.com/phpBB2/viewtopi ... highlight=
I was diagnosed with LC this July but I had symptoms for about 10 years. I don't suffer from watery D but changing stool consistencies (mostly loose), frequencies (from once a day to 6 times a day), gas, cramps, bad ekzema on my chin, heartburn/stomach pain.

I would like to keep a diary of my progress. Maybe you find the time to support me, maybe you have further ideas of what I could try. I'm thankful for every input you have.
Right now I feel rather lost and scared since I feel like I can do whatever I want, it doesn't get better.

About 6 days ago I started the eating plan stage 1. Let me be frank, it isn't easy at all. I wake up in the morning beeing a little grumpy because of the prospect that I will mostly be able to eat chicken meat.

What I'm curently eating each day: For breakfast I have rice congee with a bit of salted butter and brown sugar (for my blood sugar) and sometimes a bit of cinnamon. During the rest of the day I eat about 600 to 1000 gramm of chicken meat (roasted with coconut oil and some onion rings). A bit of white Basamti rice. I usually also add some thoroughly cooked vegetables: Cauliflower, Broccoli or Carrots. I use no spices but sea salt.

I also made some beef broth but I'm not sure if I should drink it undiluted or only use it for cooking bc it might be too strong for my bowels?

So far I'm not sure if it works. I'm still taking 3 mg of Budesonide each day (I hope to wean Budesonide during the next weeks). During the last days I figured out that I probaly can't use paprika spice. I got a rash around my lips the next days. Also Bananas gave me gas the same day and D the next day. (I assumed bananas are safe??) I'm wondering if a histamine intolerance might be behind this?
But besides that my digestion seemed to calm down. I had some good toilet days you might say.

Today stomach pain, a bit of gas, ekzema and some stool, that's not yet D, started again. And I don't know why! This is frustrating me. I live on such a strict diet, already lost some weight (can't afford to loose much) and yet it doesn't seem to have an effect. Or maybe it does have an effect but for some reason, I don't understand, my digestion keeps on spinning back into a bad condition.

I decided to leave out the butter and the onions and see what happens during the next 3 days.

Maybe you can share your opinion with me? Am I overlooking something?
I know I have to be more patient. Still I know from experience that my stomach calms down rather quickly whenever I'm fasting (I had this experience when I had the stomach flu.). That's why I'm rather confused and nervous that my symptoms seem to come back.

[brandy]

Hi Kiddo,

Early on butter, broccoli, cauliflower and onions would be problematic. I can eat them now (after healing).

Generally safe vegetables are: squash, zuchini, summer squash, winter squash, pumpkin, overcooked green beans,
carrots, potato, turnip, rutabaga, all overcooked and mushy.

Don't over rush getting off of budesonide. You must feel very confident and doing well before starting your taper off.

When you decide it is time to get off consider the following: 1 pill every other day for awhile (a month or 6 weeks works good)
1 pill every third day for awhile etc. We find good success in getting off of budesonide from those that do a long slow
taper but don't even start until your gut is doing well.

Brandy

[tex]

I totally agree with Brandy. To add to what she said, always remember that the healing process is not a straight path to remission for most MC patients. There will be good days and bad days. Many members describe the process as two steps forward followed by one step back. Look at your progress each month, not each day. Also, be aware that a few people react to chicken, but virtually no one reacts to turkey, and reactions to lamb are rare.

I don't know when you cut gluten out of your diet, but if it was only six days ago when you began the elimination diet, don't expect inflammation suppression and healing to occur before your budesonide treatment runs out. It usually takes several months for the diet to bring remission. Budesonide will bring remission relatively quickly (if it's going to work), but as soon as you wean off budesonide, the symptoms will probably reoccur.

In order to get the full effect of the budesonide, you have to at least cut gluten out of your diet when you begin the budesonide treatment (because gluten damage takes a long time to heal). Then by the time you wean off budesonide, the diet will have generated enough healing of the intestines that you will be able to remain in remission during and after the budesonide tapering process.

The bottom line here is that your digestive system symptoms may deteriorate as you reduce the budesonide dose, because your gut has not yet healed enough to remain in remission without the budesonide. Ideally, if you wish to remain in remission, you would need to extend the budesonide treatment (probably at full dose, or whatever dose is required to maintain remission) long enough for the diet to take effect (probably two or three more months), and begin your budesonide taper then, but I don't know if your GI doc is on board with that.

Incidentally, in case you haven't noticed it, we have a section/category specifically for member journaling of their progress.

Journals

Tex

[Kiddo]

Dear brandy and tex,

thank you for your replies.
I see that the weaning will indeed take a long time. It does make sense to me to take it very slowly. Right now I'm taking 3 mg of Budesonide each day. I had to reduce my dosis from 9 mg daily pretty quickly because I had caught a bad cold. So far with the diet I'm doing OK. I had once before tried to wean off Budesonide by changing to 6 mg each day but without changing my diet. That didn't go well at all.
Yes, I'm gluten free since only 6 days. Some sort of bread is in fact the thing I miss most.
I will try and rotate my choice of meat, maybe even eat more turkey than chicken. Thank you for the hint tex.
How about fish, can I eat some (organic) fish this early?
About the (white) potatoes. I thought they might be problematic since they're Nightshades. Or are there rarely problems with potatoes?

I have just read about the FODMAP diet. It sounds very promissing to me. Maybe this will be a guideline for me further down the road.

I didn't know that there is a special section here for journals. Maybe someone can please move my post there?


Thank you once again!

[Kiddo]

I just discovered the journal section. It's very interesting there. Lots of stories and good ideas. But sadly there hasn't been an update since 2016? This is in fact unfortunate. Maybe my journal may stay in the Main Message Board since I really hope to find some readers who can share their ideas and experiences with me. Even more since I can't seem to find a doctor here in Germany that is open to the fact that diet has a major impact on Microscopic Colitis. I have been searching for doctors or at least other potty people for years and now I have finally found this rich source of knowledge.

[Kilt]

Some sort of bread is in fact the thing I miss most.

I'm no expert on gluten free diets and am only on a gluten reduced diet, but I've been experimenting recently with various gluten free breads, bagels and English muffins. They're all mediocre but okay. Udi's is probably my favorite white bread brand so far. All the gluten free breads and pastries are in gluten free frozen food refrigerator sections in my local supermarkets.

[tex]

Kiddo,

Probably no one has seen fit to keep a journal since 2016, except for Erica, and her "journal" is sticky number 6 at the top of this forum. Sure, you can keep a journal here or wherever you want. We don't have a bunch of aggressive discussion forum protocol police here who get all bent out of shape if someone posts off-topic or in an "improper" place. Life's too short to waste any of it on that sort of foolishness, so feel free to post wherever you want. Besides, none of us needs any extra stress to set off another reaction.

According to EnteroLab test results, quite a few of us are sensitive to tuna, and many of those individuals are also sensitive to salmon, but other species, and fresh water fish species especially, are usually OK. Unless you had a pre-existing allergy to shellfish, virtually all shellfish (shrimp, prawns, clams, oysters, etc.) should be safe for your diet.

Tex

[brandy]

https://www.microscopiccolitisfoundatio ... tter_4.pdf

Scroll down to the Farr Symposium link on bottom left. This is some what dated (2012) but there is good info from European docs. I saw a German doc has an article.

A lot of new research on MC is coming out of Norway and Sweden.

Potatoes--some of us can tolerate and some can't. Trial and error. Sweet potatoes and beets are generally okay also.

Avoid the "gluten free" products if you are struggling. ONce you are not struggling you should be ok
with the German Scharr brand gluten free products. Check labels and choose one that does not have soy.

[Kiddo]

Hello everyone,

@Kilt: Thanks for your ideas about gluten free products. It seems to be quite similar to what we have in our gluten free sections here in Germany.
@tex: Thanks for understanding and you sure are right about the extra stress, no need for that.
@brandy: Thank you so much for the link. I already did some research. There are actually a few docs mentioned in that article. I will see that I can get an appointment with one of them. Still I don't have high hopes when it comes to German gastroenterologists. No matter what studies or articles I read in German, the dietary factor was always neglected.
Also thank you for your hint about the Schärr products. Schärr has actually pretty good flour but their breads, cookies etc. are often full of sugar and (lactose free) milk. They don't work well for me. But, here in my city exists an organic, gluten free bakery. Believe me, it is like haven there. They also refrain from using dairy products. Still I think I should wait before trying their bread since I don't know how I will react to the different kinds of GF flour (teff, buckwheat, chestnut etc.). Also I still have to figure out how I'm doing with yeast and sourdough.

So, about my current diet. I have incorporated more turkey and some lamb. This really helps keeping my appetite alive. Also I'm eating about 500 g of overcooked carrots and zucchini each day. I also reduced my carbs (white rice or potatoes) down to 100 g with each meal I eat.
I have done a little research and just ordered some chelated magnesia and B12 and D3 drops. I'm scared of malnutrition and have decided to begin supplementing these for a start.
I was also wondering about probiotics. Since I absolutely can't have dairy products and histamine also seems to trouble me I had to find some probiotics that fit my case. I came across a nice vegan coconut yoghurt with the necessary microorganisms and no other additives. I will try it very slowly during the next days. Maybe 2 tablespoons each day.

My "D" is not really "D" but it's very yellowish, containing undigested food, not smelling too well. I think it's a Bristol #5 or #6. BUT no gas or cramps, which I see as success.
The eczema on my chin is still doing its work BUT not as bad as it usually used to be during the last years. For me the eczema is a pretty good radar bc usually it reacts before my stomach does. Sometimes it seems to me as if it can take a day or two till my stomach reacts.

Another interesting thing, it seems as if medicinal clay/healing earth helps my digestion. It makes the color and consistency of my stool better (more brown, firmer). Is anyone here familiar with medicinal clay and maybe knows why it seems to help my digestion so well?

I'm still very frustrated I have to confess. This is partly bc I'm impatient. Also I just can't imagine that it will ever be better again. I have tried so many things and I have seen so many different doctors, still my digestions problems remained. Daily I have to remind myself to keep this diet and to have faith in it. For me it sometimes feel as if my body is slowly withering and I can't do anything about it. This feeling really gets to me on some days.

[tex]

I'm still very frustrated I have to confess. This is partly bc I'm impatient. Also I just can't imagine that it will ever be better again. I have tried so many things and I have seen so many different doctors, still my digestions problems remained. Daily I have to remind myself to keep this diet and to have faith in it. For me it sometimes feel as if my body is slowly withering and I can't do anything about it. This feeling really gets to me on some days.

Most of us feel that way at various times, especially if we have been sick for years. Stay the course — recovery takes time. Look at your progress monthly, not daily. About 15 years ago, after I had been really sick for a number of years, and my health continued to deteriorate until I was down to hide and bones, I seriously thought that I was going to die. The migraines and nausea got so bad that I couldn't go to work on many days until later in the afternoon. But then I figured out the last food intolerances, and my diet changes began to help and I eventually crawled out of that hopeless pit. You'll get there too. The diet takes time to heal the digestive system, but it works.

Diet changes are the only way to stop the inflammation permanently. And because all autoimmune diseases are caused by inflammation, controlling your symptoms now, and keeping them controlled, is almost surely the healthiest thing that you will ever do for your future health.

Tex

[brandy]

This is a good section to read for success story inspiration https://perskyfarms.com/phpBB2/viewforum.php?f=71

Erica's sticky #6 is good to read for progress.

Agree with Tex--evaluate your progress in 4 week chunks. Daily things can be depressing. If you look back 4 weeks
you can say "Yup, I"ve improved." As long as you are not having WD 10 times per night you are definitely improving.

I reread your intro and saw you are 35. You will have youth on your side. Young people heal faster.

As a reference I was diagnosed at age 50. I was on Entocort for 4.5 months. I was doing pretty good at 6 months.
It ultimately took about 2 years to get my energy back and get rid of the brain fog. Stay the course.
I think your journal will help a lot of folks.

Your plan sounds good by the way.

[Gabes-Apg]

The mental and emotional aspects of healing are just as important as right diet and supps.
We have some info about that in the guidelines to recovery section.
https://perskyfarms.com/phpBB2/viewforum.php?f=79

The MC healing journey definitely teaches you patience, and how to let go of perfectionism.

Re medicinal clay. It helped me improve health generally by clearing toxins, I don't believe it directly helps MC.
Then again one of my mottos in MC world is there is no right way, or wrong way, there is your way.
Listen to your body, if it works for you. Go for it.

[Kiddo]

Thank you all so much for your kind words. It really helps! Also reading some success stories gave me some more hope. I just really need to be more patient.

I have a quick question. Since I started this diet I have trouble with low blood sugar at least once a day. I start to feel nauseous and get shaky. How can I avoid that? I try to eat several times a day but since I have a one year old child and also have to juggle work, cooking, grocery shopping etc. I can't always manage to eat in time.

Another question that has been on my mind for a while: How can I know what food I can tolerate if I virtualy seem to react to just any food I eat? Or does this problem get better in time? Will it become more obvious what food triggers a reaction?

Thank you all for reading my posts and giving my your suggestions! I appreciate it very much!

[tex]

I have a quick question. Since I started this diet I have trouble with low blood sugar at least once a day. I start to feel nauseous and get shaky. How can I avoid that? I try to eat several times a day but since I have a one year old child and also have to juggle work, cooking, grocery shopping etc. I can't always manage to eat in time.

I've had the problem of low blood sugar levels, and I'm not a diabetic. I solved it by making sure that anytime I ate a meal or snack, it included at least a reasonable amount of protein. Protein allows blood sugar levels to remain at a moderate level, rather than causing a spike in blood sugar levels followed by a quick reduction to below normal levels, the way that carbohydrates do.

Another question that has been on my mind for a while: How can I know what food I can tolerate if I virtually seem to react to just any food I eat? Or does this problem get better in time? Will it become more obvious what food triggers a reaction?

Some of us keep a food/reaction journal that allows us to correlate meals or snacks with later reactions. It will reveal patterns to help us identify problem foods. Don't just record diarrhea as a symptom of a reaction — also include body aches, headaches, stiffness, nausea, bloating, brain fog, and any other abnormal symptom.

Many of us save a lot of time, frustration, and suffering by ordering stool tests from EnteroLab in Dallas, Texas. They are the only lab in the world that is capable of accurately and reliably detecting the type of food sensitivities that we have. Blood tests are worthless for our purposes. Yes, you can order these tests from virtually anywhere in the world. Most of us order the A1 plus the C1 Panel. These tests check for antibody production against gluten, casein (dairy), egg, soy, corn, oats, rice, beef, chicken, pork, tuna, almond, walnut, cashew, and white potato. I'm not sure if you have nationalized health care, but if you have private insurance, you can ask the nurse who answers the phone for the insurance codes, then you can call your insurance provider to see whether they will pay for all or part of the tests. Most of us pay for the tests ourselves. The cost of the tests is $539 USD. Most doctors refuse to use the lab because the lab cuts doctors out of the loop by offering tests directly to patients, and doctors hate that. Here's a link to the tests on their website:

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

And here's a link to the general lab website:

https://www.enterolab.com

Dr. Fine, who founded the lab about 20 years ago, has MC himself. But you can track down food sensitivities without the lab test results if you are dedicated and patient enough. The tricky part is finding all of the them. If we miss (overlook) one, we continue to react.

Tex

[Kiddo]

Dear readers,

I hope you're all doing fine and that your stomachs are doing well.
@Tex, thank you for your advice regarding low blood sugar and Enterolab. Unfortunately I can't afford Enterolab at this point. I will try and safe some money over time. Those tests could definitely make my life easier in a faster way.

Here is an update on my situation: I'm still on my diet but I have to confess I slipped the other day. I was visiting friends and they offered me some wonderful spelt cookies with lemon oil. I couldn't resist. So the next day, right before lunch, I felt the sudden and kind of painful urge to use the bathroom. I had some very loose stool and some very uncomfortable feeling in my guts. This incident upset me. I was a little disappointed in myself for eating those spelt cookies. Still I don't know if it really was the cookies or the second cup of coffee I had before lunch, which was also pretty strong, too (usually I only drink one cup per day).

So anyway, right now I'm not sure if I can tolerate potatoes. I have to wait one or to more days for my digestion to calm down and then I'll try again.
I have started vegan coconut yoghurt two days ago. Only in small amounts but maybe my digestion isn't ready for probiotics.

What's really interesting, is that since I take medicinal clay after all my bigger meals my stomach is feeling better, I have no loose stool and the end product looks like a Bristol #4. Also the eczema on my chin has gotten better. It's not perfect but my skin is definitely more relaxed.
This made me think. I figured that I might have a problem with bile acid. Whether if it's too much bile acid or a malabsorption I don't know. But I even found a medical article about Budesonide ameliorating bile acid malabsorption: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773930/
This would explain why I did so much better under 9 mg of Budesonide.
The next appointment with my GI is in December so now I have to wait 6 weeks to ask him for some Colestyramin to see if it works.

Alright, this should be it for today. As always, thank you very much for reading! xoxo