Hello, I am new!

[aliceshirey]

Hi all, I have been reading all these posts for the past 2 years as I struggled with LC. Have been on at least 3, if not 4 Budesonide tapers, even being treated at the Mayo Clinic.

Around the same time as my LC diagnosis, I was also diagnosed with hypothyroidism.

Hmmmmm .... no doctors suggest there is ANY connection between the two.

No doctors really want to talk about diet.

I have been a whole-food, plant-based eater for the last years. I am 54 and very active and healthy.

Except, 2 years ago diagnosed with both LC and hypothyroid.

So, finally, after another relapse and just flat-out frustration at my symptoms, I am here.

Starting the diet at square one. Even willing to eat meat and give up all my fresh veggies, all my tofu, all my beans, nuts, seeds.

Today I ate a banana and white jasmine rice with Ghee for breakfast.

I made myself a grass-fed steak for lunch with a peeled sweet potato and one red potato with olive oil and plain salt for lunch.

I am hoping to see a functional medicine doctor to try to get more holistic help in my approach to both of these AI issues in my life.

Interestingly, they both showed up about the same time as menopause, hormone-replacement therapy and a brief stint with depression treated with Lexapro.

I have a hunch ALL of these things are related, but still can't find a doc willing to see me as a whole person, rather than as a series of symptoms, all meant to be treated with another drug.

So, hi. You guys are amazing. What other group of people can you talk about pooping your pants with?

I am here. And even as a former-vegan (hurts to write that) I am following the path you have found and am hopeful this will work.

Also, my vitamin D level was pretty high last checked (90) and I am taking an oral form of Magnesium bisgylicinate from Thorne. Happy to switch to a topical magnesium if needed.

I do want to know if avocados are ok on the Stage 1 diet. And ... coconut butter?

THANKS! I am always pretty skeptical, so if changing my diet can help me get my life back, I will be a big believer!

[brandy]

Hi Alice,

You are on the right path. Yes, we've heard such things about Mayo in the past.

I know the food is very tough for a Vegan. I can tell you down the road--I'm talking way down the road, you
will probably be able to have a small salad and a small raw apple but stay totally clear of that stuff for now.

We are kind of individualistic but avacados would be ok for me. I would also be ok with coconut butter.
Early on I do better with just coconut oil, as I heal then I can tolerate California olive oil and then finally ghee.
In general coconut is probably safest early on.

Americans should buy California (expensive) olive oil. Most other olive oils...the cheaper olive oils, are adultered
with other oils that we can't tolerate. i.e. even though the label says olive oil other oils are adulterated.
You can google the studies.

Ghee can have small amounts of casein in it so probably is better after you've healed a bit.

It takes a lot of protein and calories to heal. Even if you are not hungry force yourself to eat. I know protein will
be tough for you to stomach....force yourself with whatever you can tolerate.

I can eat small salads now and raw fruits but it took a long time to get there.

I have to eliminate all supplements when I have WD and switch to epsom salt foot baths for magnesium
until I have solid stool then go back to mag glycinate.

You are at the right place. My auto immune diseases all started at menopause.

There are a lot of folks that have gone into remission with diet alone.

If you don't already have Tex's book link is in top right hand corner. It is the only book in the world on microsopic colitis.

Are you still on hormones? If so I would not change anything but just file in the back of your mind that
some women have problems going into remission if they are on birth control pill or HRT. Again, if you are on
hormones I would not change anything now. If you are not seeing significant improvements in 6 months
it may be something to tweak. That said, I had no problems getting to remission while on bioidentical hormones
and diet alone.

You sound very motivated! Brandy

[tex]

Hello Alice,

Welcome to the group. Brandy did a god job of addressing your questions. I can only add that I believe that most of us can tolerate avocados and coconut products, at least they're usually OK in reasonable amounts. EnteroLab offers some vegan food tests, in case you want to check for sensitivities to individual foods.

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

Tex

[Gabes-Apg]

Brandy covered most of what I would reply with

I am here. And even as a former-vegan (hurts to write that) I am following the path you have found and am hopeful this will work.
Also, my vitamin D level was pretty high last checked (90) and I am taking an oral form of Magnesium bisgylicinate from Thorne. Happy to switch to a topical magnesium if needed.
I do want to know if avocados are ok on the Stage 1 diet. And ... coconut butter?
THANKS! I am always pretty skeptical, so if changing my diet can help me get my life back, I will be a big believer! Cool

avocados are ok so long as you are not having major histamine issues. Once I resolved B6 and magnesium deficiency I had no issues with histamine.

Coconut butter maybe ok, depends on the ingredients. (Nut butters are not a mainstream item in Australia so I am not familiar with them)
the main aim in the stage 1 eating plan is stick to whole foods cooked by yourself. avoid anything with an ingredient list or mass produced.

And the mental and emotional aspects of healing are just as important as figuring out the right foods.
we have to let go of 40 years of borderline brainwashing about eating and nutrition and embrace totally different approaches to cooking and eating.

be patient, healing takes time, embracing new routines and beliefs takes time. a good time is progress not perfection. take it a day at a time, a meal at a time, the healing journey tends to be 2 steps forward and 1 step back, dont get too down when there are setbacks.

hope this helps

[aliceshirey]

You all are so friendly and helpful. I have resisted joining because I kept thinking the Budesonide would "heal" me and then I could keep eating all my vegan foods - mostly whole, plant-based ... not vegan junk. But I just wonder if the tofu, tons of beans and nuts and all the fiber rich veggies just did a number on my gut? Who knows ...

But here I am. I do not want to just throw a steroid at this over and over, especially now that I have hypothyroid, too.

I did stop my estrogen/progesterone patch. I just don't need it anymore. My symptoms aren't that bad. So, one less thing to add to the medication mix.

Today, I had a banana and a small piece of grass-fed beef for breakfast, along with a Vitamin D tab and some magnesium. Turmeric and ginger root "tea." Also, sipping some organic, simple-ingredient bone broth while I await my delivery of locally sourced, organic, grass-fed meat and bones so I can make my own.

Seriously, y'all .... this vegan eating beef? Hard to believe after 8 years.

My bowels feel very quiet. That is weird. You guys know what I mean.

I am supposed to be on a 2-week end-of-taper 3 mg Budesonide daily, but now with bowels so quiet, I am considering not taking one today.

Thanks for all your encouragement. I will keep checking in.

I am reading and re-reading all the old posts, which is so helpful. The shared wisdom of MC-warriors is awesome.

[aliceshirey]

Forgot to add - I also started to take a Zyrtec each morning about 4 days ago.

Might be making a difference as I near the end of this particular taper?

[tex]

Hi Alice,

Please be cautious about tapering or ending the budesonide treatment too quickly. There's a mast cell rebound effect (which increases inflammation) if we stop taking budesonide too quickly, and that often causes a relapse. That's what the Zyrtec is for — to help minimize the mast cell rebound after the budesonide treatment is ended. Doctors aren't even aware of that effect and treatment supplement.

Also, one needs to be on the GF diet long enough to accomplish some serious intestinal healing before completely stopping the budesonide. The intestines heal slowly.

EnteroLab offers a soy test if you want to verify the need to switch to animal protein, but it sounds as though you are responding very well to your current diet plan. We do seem to have a somewhat abnormally high percentage of members who are, unfortunately, ex-vegans or ex-vegetarians. The high fiber may be the problem. Are you aware of how fiber works? Here's a quote from Microscopic Colitis, pages 93–94 in the 6X9" version:

Fiber seems to be particularly problematic, but when we consider the mechanism by which fiber promotes so-called "healthy bowel movements" we see that it’s actually not surprising at all that fiber would irritate the intestines, because research shows that fiber actually mechanically tears the cells that it contacts in the intestinal wall (Miyake, Tanaka, & McNeil, 2006, Underwood, 2006).7, 8 When the mucosa of the intestine is inflamed or irritated, it produces copious amounts of mucus as a defensive measure. The mucus helps to protect the surface of the tender mucosa from whatever agent is irritating it. Certain cells in the mucosa (known as goblet cells) produce mucin, specifically for that purpose. When mucin is dissolved in water, it forms mucus.

When major mechanical injury occurs, however, the mucin content of the damaged cells is promptly dumped, because those cells immediately become marked for destruction and replacement rather than repair. Therefore, the tissue damage caused by fiber is bound to promote the generation of mucus, which helps to lubricate the interior surface of the intestine, thereby improving motility and helping to move the contents along. However, this type of damage also results in the death of those cells. Not every health authority regards this as a desirable benefit, including Dr. Michael Eades, an expert on the paleo diet (Eades, 2006, August 30).9 This isn’t rocket science, and obviously, when the intestine is already inflamed, it doesn’t need any additional irritation. Because motility is already too fast when diarrhea is present, any additional irritation provided by fiber in the diet can only be detrimental and will almost surely promote additional inflammation and diarrhea.

References from that quote:

7. Miyake, K., Tanaka, T., & McNeil, P. L. (2006). Disruption-induced mucus secretion: Repair and protection. PLoS Biology, 4(9), e276. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/16933971

8. Underwood, J. (2006). The path to digestion is paved with repair. PLoS Biology, 4(9), e307. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1551928/

9. Eades, M. R., (2006, August 30). Is increased fiber intake really a good thing? Retrieved from https://proteinpower.com/drmike/2006/08 ... ood-thing/

I'm guessing that too much fiber, even in a healthy gut, might cause too much damage. The first step of cell repair is inflammation. Therefore, too much damage may cause too much (chronic) inflammation. Chronic inflammation in general is well known as a cause for the development of MC for some people.

Tex

[aliceshirey]

Tex,

Thank you.

Ok, I like that you are all not "anti-medicine." That helps me - because I am kind of an all-or-nothing gal. I will stay on the taper of Budesonide until I check back in with my doc in a few weeks.

I have a hunch that fiber really did it to me. Long story that I will spare you from, but based on the timing of things and what I ate, this makes so much sense.

I will stay on the 3 mg Budesonide for a bit, as well as the Stage 1 diet for quite some time.

I had a couple rounds of D this morning, but mostly quiet and able to be out and about and functional with zero problems.

I am pondering the lab tests. Going to make an appointment with a functional medicine doctor first and have that conversation ... then will probably end up doing the tests.

Thank you for everything. For your research and the kind and caring and smart community you have created out of your own struggle.

Pretty powerful!

[brandy]

Hi Alice,

Brandy here. I was a 4.5 month entocort user. If you had D this morning it is way too soon to be thinking of getting off of budesonide. Very high risk of relapse if you stop budesonide in 2 weeks.

Ideally you have solid stool for 3-4 months day after day after day with no WD before getting off of budesonide. Minimum maybe 8 weeks and I would call that on the risky side.

Consider ask doc for extension. Tell him/her you are still having WD.

If you stop too budesonide too soon then relapse the budesonide may not work as well the second go round, i.e. it is
better to stay on longer and be good and healed, very confident before you get off.

How long have you been on budesonide?

[aliceshirey]

Brandy,

Thanks so much for this info!

This is my third or fourth round of Budesonide taper.

This has been my longest one. I am pretty sure I have been tapering for 3-4 months. Down to just 3 mg daily now ... and then tried to go to 3 mg every other day and my WD came back.

My Mayo doc is great. I am supposed to now go to 3 mg daily for 2 weeks and then report it. Because my symptoms were so bad, I did 6 mg daily for 3 days and am now at 3 mg daily.

But just started Stage One diet ... and my gut is quiet (almost as if I am constipated) but with some WD this morning. Weird.

I know, I know ... I should do the testing. I just thought I could do rice, potato, local meat (organic, grass-fed) and some well-cooked veggies, and be safe?

Maybe.

I will stay on the budesonide as long as doc will allow me. And will stick with the diet. And will save $ for testing.

I am off the HRT patch, tho. And no symptoms ... so that is good.

I am hopeful?

You guys are life-savers.

[tex]

I did 6 mg daily for 3 days and am now at 3 mg daily.

Surely that's a typo — 6 mg for 3 days?

If you're been using budesonide most of the time for 6 months to a year, your immune system's IgA antibody response will be so weak that your test results may contain a lot of false negative results. It takes a long time for the immune system to recover from extensive budesonide use. A few months of budesonide use won't make much of a difference, but using it longer (or with closely-spaced repeated treatments) will definitely affect the accuracy of all IgA-based tests.

Tex

[aliceshirey]

Tex,

Should be more clear ...

After a long, long taper I finally hit the 3 mg for 4 weeks mark, and then tried to taper to 3 mg every other day. That is when things fell apart again.

So ... my Mayo doc told me to go back to 3 mg every day for 2 weeks and then report back to him.

However, since I was having more severe symptoms, I didn't just do 3 mg every day ... but for the first 3 days I bumped up to 6 mg, just to kick-start things and now am back down to 3 mg every day. Trust me, I have done a full, full long taper.

So ... that's where I am now.

[tex]

Thanks for the clarification. That sounds a lot better.

Tex

[aliceshirey]

Question: What do you think of MCT oil in my morning coffee?

Also, progress here? WD this morning, but not an urgent run to the bathroom. Bowels not making sounds like running water ... things are quiet internally. This is new.

Breakfast - a banana

The rest of the day's food is Jasmine rice, well-cooked squash, well-cooked carrots, potatoes, zucchini. Some organic, local, grass-fed chicken thighs.

Water, turmeric/ginger tea, Vitamin D. Magnesium spray ...

Am I on the right track here?

[tex]

Question: What do you think of MCT oil in my morning coffee?

Never tried it.

Also, progress here? WD this morning, but not an urgent run to the bathroom. Bowels not making sounds like running water ... things are quiet internally. This is new.

'



Not all of us can tolerate turmeric, but in general, yes, you're on the right track.