MICROSCOPIC COLITIS SUPPORT

Greetings to all.

Background information:
- I am a 68 year old female, 5’5”, 120 lbs.
- I take no pharmaceuticals
- My only health issue in osteoporosis. Since 2012 my bone density scan scores have improved not greatly but they nonetheless, improved. I credit my supplement ProBono for this improvement.
- My diet is clean - meaning organic, mostly local, grow and preserve most vegetables in my garden, all meat comes from local farmers (no hormones, no antibiotics, grass fed, etc). I rarely eat at restaurants and when I do, most share my food philosophy. I rarely eat sugar - although I do love ice cream and butter. I have followed this philosophy for more than 15 years. For several years now, I eat very little gluten as my husband is gluten sensitive (not celiac).
- I do take supplements - ProBono, Vitamin D, fish oil, and a probiotic. During COVID I took a daily dose of Elderberry Syrup (locally made) and Super Hero Tonic (locally made)

December 2021
I had a breakout on my chin, which has not happened in probably 10 years or more. Years ago my dermatologist suspected it was a herpes virus but the lab results were inconclusive. He treated it with a topical antibiotic zovirax. Subsequent physicians treated it with azithromycin (oral) in 2011, and in December 2021, my holistic doctor prescribed the oral antibiotic acyclovir. I only took 10 out of 30 pills of the acyclovir as I started having D and continued the rest of the month.

January - February 2022
- In January, I started a spreadsheet of my intake and output.
- After four weeks of D, my holistic doctor suspected giardia but the test was negative. At his suggestion, I took a strong probiotic. None of this changed the D. After a few more weeks, he suggested a colonoscopy. This is another saga for another day.
- In February I managed to schedule a visit with a gastroenterologist. Of course, I didn’t get to see or talk to the gastroenterologist but to a nurse practitioner. After reviewing my spreadsheet, she said she suspected microscopic colitis. (Which I had already come across in my research).
- Colonoscopy on February 1 and the results from biopsy indicated collagenous microscopic colitis.
- After much research and a long discussion with my holistic doctor, on February 5, I started taking 9mg Budesonide for four weeks, 6mg for two weeks, and 3mg for two weeks.

March - June 2022
- The D did subside until May 15th.
- On May 25th started taking one tablespoon psyllium fiber through June 15th. Saw some improvement initially but then a slow, steady decline to D.
- On June 15th I emailed the gastroenterologist and had a dialogue with them over the next two weeks. First suggestion - take fiber (I didn’t like the ingredients, so I declined), next suggestion was a liver bile blocker (I declined the pharmaceutical), and the third suggestion was to take 2 pepto-bismo tablets 2-3 times daily and to email them in six weeks. I declined on the pepto-bismo.
- At this point I started doing more research but ended back at my holistic doctor for help in locating an acceptable fiber supplement. I can’t remember his exact words but it was something to the effect of “living with it” and “my new normal”. Ultimately, he recommended a 10 week once a week injection of bovine colon in hopes of strengthening my colon. Took the ten shots - no change in D.
- It was sometime in late June that I found the Microscopic Colitis Foundation website. What a game changer.

July 2022
- Slowly started eliminating foods about July 5th.
- Test results received from Enterolab
- Anti-gliadin - 14 units
- Anti-casin - 15 units
- Anti-ovalbumin - 14 units
- Anti-soy - 8 units
- Mean Value 11 Anti-genic foods - 11
No reaction: rice, pork, almond, white potato
1+ reaction: corn, chicken, tuna, walnut, cashew
2+ reaction: oat, beef
- Quantitative Microscopic Fecal Fat Score: 1529 units
- Pancreatic Elastase Test - pending
- HLA-DQB1 Molecular analysis, Allele 1* 03:02
- HLA-DQB1 Molecular analysis Allele 2* 03:02

Started Stage One diet on July 14. Watery D subsided in two days. Had a singular episode of watery D eight days later. Two suspects: canned organic peaches in pear and lemon juice or the organic herbal turmeric and ginger tea. Eliminated both of those and no events since then.
My diet consists of:
- Protein: shrimp, chicken, salmon, tuna, white fish (Walleye)
- Vegetables: white potatoes, lightly fried okra (steamed mostly), overcooked broccoli
- Fruits: banana, avocado
- Snacks: organic potato chips cooked in olive oil, corn tortilla chips cooked in coconut oil
- Beverages: water and an occasional Soda Stream sparkling water, and herbal tea

In the past 7-8 weeks:
- I have lost 14 pounds. Granted I gained six pounds on the steroid so I was glad to lose them and my clothes feel and fit much better. However, I don’t want to lose much more weight. The challenge I face is that I have never been much of a meat eater. I love salads, fresh fruits (mostly berries), and veggies. A few bites of meat and I’m satisfied. But I have been diligent in eating meats/protein often. (Who knew that I would be eating salmon at 10:00 o’clock in the morning?)
- I stopped taking all my supplements because of my malabsorption score. My supplements are pricey so if I am not absorbing them it doesn’t make sense to throw money away.
- I started taking an infusion of vitamin and minerals. First one was last Friday and have five more scheduled over the next few weeks.
- I spoke with Dr. Fine and have purchased his Ortho-Intestinal products steps 1-4 but have not taken them as I am not currently experiencing D. I do intend to schedule a consultation with him after I receive my pancreatic test score (for those who wonder: He is licensed in the state in which I live).
- Purchased Wayne Persky’s Vitamin D, Magnesium and Microscopic Colitis books. Have read the first two and am currently reading the MC book.

My questions are:
- Any comments on my test results?
- Any suggestions on my diet? Supplements?
- Anything I am missing or have overlooked?

In closing, I would like to express my immense gratitude to Tex (AKA Wayne Persky) for championing this disease and writing books, establishing a foundation, forum and recommending Dr. Fine/Enterolab. I count it a blessing from God and believe that his purpose on this earth is being fulfilled through MC. I am humbly and eternally grateful for him.

Additionally, I would like to thank Gabe for all the contributions on diets and suggestion/advice, as well as all the contributors to the forum. It helps immeasurably reading everyone’s story. May God bless you all with patience to run the race set before you (and me).

Forgot to include: Vitamin D levels recently tested - 117 above normal. Waiting for magnesium levels test results.

Exercise: Yoga (twice a week), gardening.

I'm sure there is something else I forgot to include ...

Hi,

Welcome to the group. What can I say? Your recovery appears to be on track, and you're doing well. Your EnteroLab results appear to be somewhat typical, except that your fecal fat score is very high, suggesting that you've been accumulating intestinal damage due to gluten for some time, probably years. And of course that indicates a serious malabsorption issue. As far as vitamin supplements are concerned, most of us only take vitamin D and a good oral magnesium supplement while we're recovering, and then we refine our supplemental program after we reorganize our diet for the long-term. With a 25-hydroxy vitamin D level of 117, it may be time to coast for a while, so that your level can decline a bit. I try to keep my vitamin D level between the limits of about 40 and 80 ng/ml.

As your intestines continue to heal, and your malabsorption issue fades away, your ability to gain weight should return.

Many thanks for your kind words — they make our efforts worthwhile. And we certainly hope that you continue to do well in your journey back to good health. Again, welcome aboard, and please feel free to ask anything.

Tex

welcome (and sympathies that you had find us)

like you prior to MC I lived on raw veggies and fruit so making the changes to my eating plan was a big adjustment

agree with tex, with time you will absorb more and weight will stabilise.
also remember there is the mental and emotional aspects to this, making big changes to diet and lifestyle take a while to accept. for me it was about 9 months.
awesome that the diet changes worked so quickly for you


Diet - it is trial and error to see what you can add in

Supplements - dont mean to contradict or confuse anything that dr fine recommends, but what we have found here is that Vit d3 and magnesium are priority in early stage of healing, after time the active B's and support for immune

with low inflammation diet and lifestyle, and the right basic nutrients the gut can heal. There is no fast track or quick fix for this.
Time, patience and the right attitude are best friends in the healing process

my other advice
try not to overthink or over plan things. many of us are former perfectionists! we have to learn to go with the flow a bit, listen to our body etc
spend some time reading the success stories area, this will give you indicator of what others have done, what worked (what didnt) and the time it took to get their normal.

Update on test scores:

Pancreatic Elastase Test - 305

Three questions/concerns:

1. I must admit I am confused as I read on the forum that higher test results on the gluten, dairy, egg, and soy indicate a longer period of reaction has been going on. IMHO my numbers are low. But then I read that my high malabsorption number probably indicates a long period of reaction to gluten. It seems logical to me that if both of these statements are true, then my gluten number should be much higher. Or am I misinterpreting?

2. As I mentioned in my first post, I purchased Dr. Fine's products. To date I have not taken them as I have had two plus weeks symptom free. Step 1 is Intestinal Renewal, Step 2 is Organic Blueberry fiber, Step 3 is pre-biotic, Step 4 is a lower intestinal prebiotic and oral probiotic. Since I am currently symptom free, I am hesitant to take any supplements. Should I start taking them (not Step 1 though), what would be the recommendation?

3. I had thought I would schedule a consultation with Dr. Fine. But now am reconsidering based on forum comments on Dr. Fine's research. Actually, I don't know what I would achieve with a consultation. Are there others who have had a private consultation with him and if so, was it helpful or value added?

You're trying to read way too much into our comments here. Comments such as those are generalities that apply to most of us. They definitely do not apply to every individual case, and always remember that we are all different. Consequently, YMMV (your mileage may vary).

If I were In remission (which I am, of course), I certainly wouldn't consider taking a product designed to clean out my guts and reprogram them. I might note here that Doctor Fine was originally not a vegetarian(or vegan (at least not as far as I'm aware), but somewhere along the line he become a fervent advocate of a plant-based diet, after he gained remission from the disease. These days, he appears to be pushing a lot of expensive products. All that's fine of course for anyone who chooses to eschew animal-based products, but in my opinion, since most of us are sensitive to soy and most legumes, attempting to control the symptoms of microscopic colitis, while maintaining a condition of optimum health, is much easier for those who use an animal-based diet, because intestinal healing requires a lot of protein.

Tex

Tex - Thank you for the clarification and yes, I admit it, I do tend to take things literally. Sorry about that! Also, thanks for your thoughts on the supplements - I tend to agree. I'm trying to figure out if I can return them. No information on the website about returns.

Also, I just received the results of my bloodwork but my general/primary care doctor has not reviewed them yet so he has not provided any recommendations. I did notice that I am low on magnesium ... but not to worry - I already purchased magnesium oil thanks to the information gleaned from this forum.

Please know that I have taken to heart the dietary suggestions from this forum. I know you can appreciate how hard it is to be processing hundreds of pounds of tomatoes and not to be able to eat them! I have hope to be able to enjoy them in the future. Hopefully sooner rather than later. I am enjoying other garden produce - white potatoes, okra, and zucchini.

Thanks again!!

Citric acid limitations are only temporary. Once you're back in remission, and your intestines have had some time to heal, you'll be able to tolerate increasing amounts of citric acid, so you'll be able to eat tomatoes again. But don't overdo the amounts, until after you've healed for a while.

Tex

That is welcome good news.

In June (just a few weeks ago) we were in a rush - running late for an appointment. I grabbed a quart jar of tomato juice (thin juice off of tomatoes while making tomato sauce - has a lot of water in it). Anyway, it went right through me - it was an awful experience. I thought I was drinking something healthy and good for me...but the lesson learned is EVERYTHING in moderation - even if you are not suffering from MC.

I had blood work completed and at my follow-up visit with my physician, he recommended eight new supplements - two of which are digestive enzymes. The plan was to integrate the supplements one at a time for five days to ensure no negative reaction. Six days ago, I began taking the first digestive enzyme with meals. There was a slight change in my stools but nothing dramatic. Yesterday morning I began the second digestive enzyme that is taken once a day without food and by early evening had a small amount of loose BM. Ditto this morning. I'm going to halt the supplements rather than risk a complete flare-up. Anyone with similar experience with digestive enzymes or similar? Thoughts???

my learnings and observations from the 12+ years being part of this group:

1. functional treatments / supplements etc for IBD's do not always work for MC.

2. you cant hurry the healing process. you can optimise it, but not accelerate it.

if you have taken some time to read the posts in this guidelines to recovery section, you will note that digestive enzymes are not mentioned.

Back about 15 or 16 (or so) years ago, when I was still recovering, one of the dumbest things I ever did was to try to speed up my recovery by taking enzymes. I had read where a few people had good results with certain enzymes (in Internet ads or wevsites, not on this forum), and although I was coming along nicely, one day I decided that I would speed up my recovery by taking enzymes. So in order to "do it right", I ordered an expensive product, and when I received it, I took a capsule the next morning, before breakfast, according to directions, and then I ate my regular breakfast.

A couple of hours later, I began to suspect I had made a mistake, because my guts began to feel as though someone were tying them in a knot. A little later, violent vomiting confirmed that I had made a mistake. After three or four of those episodes, I had nothing left in my stomach to throw up, but that didn't stop the vomiting (or rather attempts to vomit). About once every hour or so, for the rest of the day, I had another session of dry heaves.

And of course that was alternated with random bouts of world-class diarrhea, until eventually, completely wrung out, I dragged what was left of my abused carcass into bed that night. I tried a little chicken soup about noon the next day, and managed to keep it down, so I felt encouraged, and began to think that maybe I would survive, after all. But it took about three days before I got up the nerve to eat any solid food again, and I was only able to do that after making myself swear that I wouldn't ever again touch that stuff with a 10-foot pole.

We're all different, and some of us are able to tolerate enzyme supplements. Some people insist that enzymes are truly beneficial for them. For me, though, I'm still observing that 10-foot rule.

Tex

Thanks for the responses - confirmation helps - at least mentally!

I have been beating myself up for listening/adhering to my doctor's recommendation when I was doing so well on the restricted diet. You are right Gabes, I always search for info on food before I add anything new. Unfortunately, I did not do the same with the supplements. Lesson learned.

I'll put those supplements with the other ones that I bought (that are not returnable). Sigh...

I'm hoping it doesn't take me long to get back to where I was with my progress.

Agains, thanks for responding.

I have stopped taking the two digestive enzymes and have not had any further issues with D. I have not taken any supplements (other than the recent 5 days of digestive enzymes) since receiving the Enterolab test results (14 July) showing malabsorbption issues. However, I am wondering about other supplements the doctor recommended (again based on the results of my extensive bloodwork).

Fish Oil
Vitamin K-2
L-Tyrosine
Lipoic Acid
Vitamin C
Pro-Bono - which is really a multi-vitamin. I've taken this supplement for several years and to which I credit to halting the progression of my severe osteoporosis.

Other than the 24 hour issue with D recently, I have had 38 days without flareups.

Gabes and Tex - what are your thoughts on the above supplements? Thanking you in advance for your responses!

glad you had quick resolution once you stopped digestive enzymes

if you read through the posts in this section of the forum, in early stages of healing we encourage Vit D3 and magnesium
after that - active B's

majority of multi vitamins dont have the active B's, Vit D3, magnesium amount that MC'ers need

keep in mind too that it is not the actual supplement but the 'inactive ingredients' or quality of the supplement that can be an issue
some fish oils can be low quality and rancid by the time you taking them
Same with Vit c, is it high food grade type Vit C, or generic

and of course, are they all gluten free, dairy free, soy free?