Questions on Healing Approach

[Sarah1234]

Hello,

This is going to be a long post I have a lot of questions that have been stewing for a while! I’ll give you a little background on my experience with MC first-

Diagnosed with collagenous colitis, celiac disease, and pancreatic insufficiency in January 2023, always relapsed immediately after budesonide. Was on full dosage of budesonide from March-November 2024. Also started full dosage of mesalamine fall of 2024 (I was pregnant and the colitis was worse with pregnancy, so we did everything we could to keep the pregnancy healthy). Then went to 6mg of budesonide December-March 2025, and have now been on 3mg of Budesonide since March 2025, so the last 4 months- and still on full dosage of mesalamine. Ever since I’ve gone down to the 3mg of budesonide, I flare about every other week. These flares are more mild than when I’m not on medication, but still difficult-

Recent symptoms with flares- the flare starts with a painful bm that turns into diarrhea. Not straight water like I’ll have off of medication, but still diarrhea. This happens only 1-2 times in a day, but after it happens I often get really fatigued- my limbs feel like spaghetti and I have brain fog. I also have a lot of tenderness in my upper stomach, like I’ve been punched in the gut. And I typically lose weight. My bm’s become light colored as well. Then it takes me a few days to get out of it and back to a better place- never perfect and totally symptoms free, but no longer in pain and having better formed bm’s.

My vent- this pattern has been very difficult while postpartum (my baby is 5 months old now). I’m nursing, and am on a very very restrictive diet. It’s hard getting enough calories and nutrients! I’m at about 105 pounds at 5’6” and don’t have any more weight to lose. I don’t feel like I’m healing much, but am stuck in a pattern of being ok and then randomly not ok. I’ve been on a very restrictive diet ever since giving birth in February. I was somewhat restrictive during pregnancy as well. Here’s a snapshot of what I eat-

Chicken and rice with chicken stock
Applesauce, bananas, avocados
Salmon and mahi mahi
Sweet potato, potato, different squashes, green beans, and carrots (well cooked)
Beef bone broth
Rice cakes, some times Jackson’s sweet potato chips with avocado oil and simple mills almond crackers
Peanut butter and almond butter
Almond milk
Coconut water
Kate farms organic plant based nutritional drinks (labeled easy for digestion- they also make formulas for tube feeding)
Sometimes go macro bars that don’t have oats in them

-What I pretty much always avoid- gluten (of course), dairy, soy, eggs, oats, fiber
-my goal is to have never have any of the processed foods like the crackers or the drinks, but I pretty much find it impossible to get enough calories with breastfeeding and being a mom to two littles without those pick me ups. This is so hard!!!

Ok here are a couple questions-

I ordered the entero lab testing before knowing that I shouldn’t do it while on budesonide. Would it be worth doing it now since I’ve been on the 3mg for the last 4 months? Or is it still worth waiting until I’m off of it? I hope to take the extra step of taking the budesonide every other day soon, but I don’t feel like I’m in a great place to do that yet. But I’m anxious to see what may still be irritating me.

I recently got labs done- this was the day after having a flare that wiped me out and caused the tenderness in my upper stomach. And my c reactive protein came back <1! So no clinically significant inflammation. This shocked me, given that the day before I had flared. Could the anti inflammatories have taken care of it? I was glad to see the results but also confused.

Lastly, is my one step forward, one step back pattern typical in the healing process? I guess one good thing is that I no longer (now rarely) shed the intestinal mucus lining. So that’s improvement. But over all, this is really wearing me down. I worry that I’m getting enough nutrients ( I try to take pre natal vitamins since I’m breastfeeding but they seem to be irritating sometimes). I also took some okra pepsin and A beta food with my naturopath for a bit but didn’t see clear results. I can also tell that one night of poor sleep or stress really derails me. Which can be hard to avoid sometimes! Would really love some encouragement thank you for taking the time to read this novel!!

-Sarah

[jbrohlr]

Hello Sarah,

Sorry you are struggling, and congratulations on your new family member.

I went through your list of foods that you eat and saw a couple of problem areas:

1. Your Kate's Nutritional Drink doesn't look good. I looked up the ingredients and saw pea protein (lots of MCers have trouble with pea protein). Rosemary Extract is often a problem - the extract is often made from soy. Di-Alpha-Tocopherol was also listed - that might be alright if Di-Alpha is the synthetic tocopherol. Most of the natural tocopherols are, once again, made from soy. Oat Fiber was listed as well, which, I assume is made from oats.

2. The peanut butter is a red light for me. Peanuts are legumes and legumes are not your friend (definitely not mine - I can't even eat green beans).

3. I react to chicken, many MCers do. Switching to turkey (without Rosemary Extract injected in it) would be a good idea. You might consider lamb as well - I do very well with lamb.

4. Look at the ingredients in your macro bar - remember always to look at the ingredients, not the claims made on the front label. I had to learn that the hard way.

I assume that your problem is that with two young n's you don't have much time to cook (and clean up after). Unfortunately, your best bet is to steer clear of convenient, commercially processed foods. Having to rush to the toilet is, as you know, a time killer as well, not to mention the time and energy lost to the fatigue.

I experienced fatigue in waves during and after my initial flare, although I don't recall if it coincided with BMs. I'd be going along fine and then 5 minutes later I could not even hold my head up. The fatigue would last a couple of hours. I felt like I was just a bag full of jelly. I experienced tenderness too, mainly between my sternum and belly button.

Maybe Tex will chime in on the Budesonide versus Enterolab results. I recall reading that a period of 6 months on Budesonide before it will skew the Enterolab results, but maybe that is 6 months on the full dose (9 mg). I've noticed that the question of skewed results comes up several times on this site so a search would behoove you on this subject.

Anyway, good luck Sarah.

John R.

[tex]

Hi Sarah,

John is right on the money with his assessment of what might be preventing you from reaching remission. I can't add much to what he posted, but here are a few thoughts:

If you call the lab, they can tell you whether or not the test would be reliable in your situation. But I'm guessing that they would probably tell you to go ahead and do the test. Look at the return address label for the kit you have. If it's addressed to the lab in Greece, you're good to go. But if it's addressed to somewhere in the U.S., the test was sent out before they moved to Greece, and that address label will not work, so you'll need to get an updated sample return address from the lab. Again, you would need to call the lab.

The C-reactive protein test detects systemwide inflammation. It provides no specific information about where the inflammation exists. Physicians seem to feel that it's helpful in many situations where they're (In my opinion) overestimating its value. It generally doesn't seem to be useful for MC patients, because it gives erratic results that may, or may not, mean anything.

Get the extra calories you need by eating larger helpings of safe foods, not by looking for variety. The fewer foods we eat, the less likely we are to react to anything. Meat contains all the essential amino acids, and a high protein diet is necessary for healing intestinal damage. We can not only survive, but thrive, on an all meat diet, as long as it contains a little fat.

Taking one step forward, and one step back, may be common with this disease, but it's not part of a normal recovery program. Most of us find ourselves taking two steps forward, and one step back on our journey to remission, but when we look at our monthly progress, we are indeed improving. In other words, day to day experiences can fluctuate, but long-term progress should be steadily improving.

Again, get the calories you need by eating whole foods, and your meals should be mostly protein. Don't worry about a balanced diet, because until we reach remission, many of our nutrients are going down the toilet, anyway, due to the malabsorption problem associated with MC. That means we have to eat more than we would normally eat to compensate for the nutrient loss caused by malabsorption. Most of us find that in order to take in enough calories, we do better if we eat smaller meals (so that we are less likely to run out of digestive enzymes before the meal is digested) but eating more frequently during the day (in other words, eating more meals, or snacks). Carbs and fiber are filling, but they're not nutrient dense. We need to eat nutrient dense foods, such as meat, in order to get the nutrients (and calories) we need, without feeling too full, or ingesting more than our digestive system can handle.

I hope this helps.

Tex

[Sarah1234]

Thank you both so much!! I’m going to make those pivots with my diet and make sure I’m more prepared so that I’m not having to go to those convenience foods. I will call the lab as well.

Again, thank you both for taking the time to look into this and respond so thoroughly. Not sure what I would do without this resource!

Sarah

[jbrohlr]

Let us know how it goes Sarah.

John R.

[Sarah1234]

Hello John and Tex,

Here’s an update since we last talked-

I cut out the problem foods that we talked about and started eating turkey and lamb. The lamb seemed too fatty at current stage so I cut that out and started to mostly eat just turkey and rice. For some reason, my symptoms got worse and my diarrhea become more yellow and watery. This was incredibly perplexing discouraging given that I was barely eating any foods! I’m wondering if low levels of stress were playing into it.

I did reach out to entero lab and they encouraged me to go ahead and do the testing even while on the 3mg, so I’m going to do that in the next few days. Hopefully this gives me the clarity I need.

I also scheduled another appt with my GI doc because the tenderness in my upper stomach concerns me. Whenever I’m holding my baby and she kicks me just below the sternum in the opening between my ribs, it’s super tender. I’m assuming that if it were full blown pancreatitis that it would be in more intense pain systemically? I was supposed to get a scan of my pancreas done because of the pancreatic insufficiency a little over a year ago, but that’s when I found out I was pregnant. I’m assuming that the tenderness is pancreatic inflammation from the colitis flaring. I just hope it’s safe long term? Maybe I need to give it more time to get out of the constant flares? Let me know your thoughts on if a scan would be helpful.

Also, regarding the pancreatic insufficiency, I took prescription enzymes before but they didn’t seem to make a difference- I assume because the colitis was the main culprit. Just curious- do you ever recommend taking enzymes to help MCers digest? Or is just sticking to smaller, super simple meals the best approach? Or can both strategies be combined?

Last question- I’m not sure if any of my issues are mast cell related. The only symptoms I’ll have close to eating a meal on the 3mg is gurgling in my stomach, gas, and cramps. I don’t typically have a bm immediately after. Usually my fate is seen during my bm the next morning and felt after the bm. But before medicine, if I ate a particularly bad meal, I would sometimes have a bad bm within a couple hours of eating. I do get some eczema here and there, but I think that’s it as far as mast cell symptoms. Anyway, just curious if it’s worth trying to attack that issue in case it’s present as well.

Thank you so much,

Sarah

[tex]

When you wrote that your symptoms became worse, your description of your bowel movements sounds a lot like bile acid malabsorption (BAM). Published research shows that approximately 40% of cases involving diarrhea that doesn't respond to conventional treatment, are due to BAM. Here's a link to a newsletter published in January 2024 by the Microscopic Colitis Foundation that might be useful.

https://www.microscopiccolitisfoundatio ... mplate.pdf

Also, the next issue of the newsletter, published on August 1, 2025 will discuss recent treatment updates regarding BAM.

If you undergo any tests for pancreatic insufficiency, you will almost surely find it, because most of us have the problem when our MC is active. Some people say that digestive enzymes are helpful, but when I tried a pancreatic enzyme supplement, the first capsule I swallowed made me so sick within a couple of hours that I was afraid to eat any solid food for three days. I took the capsule before breakfast, and had projectile vomiting that started in about two hours, and was repeated roughly hourly until nightfall, even though I had nothing left to vomit up after the first few episodes. So not surprisingly, personally, I don't recommend digestive enzymes, but your luck might be better.

If you suspect that you might have mast cell issues, try avoiding bananas for a couple of days to see if that makes any difference.

Tex

[jbrohlr]

Hello Sarah,

Sorry things are not getting better. I'm glad that you are going through with the Enterolabs testing - it was very helpful for me.

When I am having problems gut wise, I will slice off the fatty edges off of the lamb chops and shoulders - that seems to reduce lamb to a level of fat that I can handle.

Do you still have your gall bladder Sarah? I had mine removed in 2018 and have a BAM issue. My BAM waxes and wanes depending on how inflamed my gut is at the time as an inflamed terminal ileum will compromise your absorption of unused bile. You can still have BAM even with an intact gall bladder however.

If it is a mast cell issue, then yes, unfortunately you will have to avoid high-histamine foods. If I eat a high histamine food I'll have diarrhea the next day (and itchy skin). As Tex pointed out, bananas are high in histamine, also bone broth (although there are ways to reduce the histamine when making it).

I've tried pancreatic enzymes (non-prescription). I had no problems with it, but do not know if it helped any.

John R.

[Sarah1234]

Hi Tex and John,

I have a lot of updates to share! I got my entero lab results back, and here are the results. (Also, I forgot that I had only only ordered the top 4, so I may do more testing later)

Gluten- 176 units (makes total sense with my celiac)
Casein- 26 units
Chicken Egg- 35 units (also did a food intolerance test and this came back as my intolerant food)
Soy- 42 units

Based off of these numbers, would I ever be able to have a small amount of any of these foods, (I.e butter or ghee for instance) if my gut were to heal more? (Obviously never for gluten) My guess is not based off of what I’ve read on the forum but thought I’d ask.

My CAT scan unsurprisingly came back negative, but boy did that iodine contrast drink send me into a terrible flare for a month. The encouraging news is that in the last two months I’ve started acupuncture and it has totally helped!! During each session I can feel my gut release- specifically my lower right intestines (in the terminal ileum I believe) and I feel significantly better afterward- it really settles my stomach. The problem is that one stressful day, not getting enough sleep, or a very minor diet tweak and bam I have a flare again. But at least I’m not stuck in a month long flare like I was after the scan and am now rebounding out of the little flares.

I also switched to a new GI doc who’s a doctor and researcher with University of Florida. She has a lot more experience with collagenous colitis, so I feel better taken care of by her. I told her about the potential of bile acid malabsorption and she prescribed the chol. for me to try. I’m a little apprehensive about trying it because I eat every couple of hours (nursing mom who needs a lot of calories and trying to avoid big meals) so I don’t see a time where I could take it that wouldn’t run into the nutrient binding issue. In my recent labs I also found out that I’m vitamin E deficient (in the gamma tocopherols) and so I’m extra nervous of doing anything that could bind nutrients that I would otherwise potentially absorb. I also haven’t heard from my doc yet on the deficiency so I’m curious as to what she’ll recommend. I eat plenty of olive oil, avocados, and almond butter which are all high in vitamin E, so it’s clearly a malabsorption issue. The doc is also interested in having me be on entyvio given that I’m young, desire to have more children, am chronically underweight (under 100 lbs), and clearly have the absorption issues. I would obviously love to avoid an immuno suppressant and be able to manage the colitis naturally as you have, but I am also really anxious to quickly put weight back on so that I can get pregnant again. I know pregnancy and nursing really deplete the body- this is such a tricky time of my life to be dealing with the colitis!! I continue to be strict with food- every day I eat chicken (I seem to be better with it than turkey surprisingly), applesauce, bananas, simple rice protein powder that I seem to tolerate well, almond butter, avocado on rice cakes, almond flour muffins with applesauce to replace eggs, bone broth, coconut water, sweet potatoes, potatoes and potato chips with avocado oil, butternut squash, zucchini, white rice, salmon, olive oil, coconut oil… that’s the gist. When I get to a better place after an acupuncture session, this diet seems to agree with me and I have zero stomach pain and only slightly loose stools. I just seem to be so incredibly sensitive and reactionary that the smallest thing throws me into a flare! And I have very little hope of gaining weight on this diet even if I am absorbing better- I’m naturally a thin person with a fast metabolism. Also, I’m about to go out of town for Thanksgiving and I have the hardest time finding anything I can eat on the go! I try to pack as much as I can but it’s tough with long travel days/being in a new place. I’ll have to peruse the forum for travel ideas.

I’ll end on a positive note-
Yay for acupuncture and no longer being in a month long flare
Yay for having a doctor who’s actually experienced with collagenous colitis
Yay for the new cool book!! I just ordered it an am excited for some new inspiration
Yay for the AI app as well, that has been a helpful tool for me, so thank you

I apologize for the length of this message, thank you both so much for your help.

Sarah

[jbrohlr]

Sarah, good to hear that you are doing better.

As far as the cholestyramine, I take one dose at night before bed - usually about four hours after my last meal. While you are eating during the day the bile in your intestine is being used, as long as you are eating the type of fat that bile acts upon (long chain fatty acids, i.e. saturated fat). It's when the bile does not get used and your terminal ileum is too inflamed to absorb the unused bile that the bile gets into the colon and causes the fireworks. The prescription for taking cholestyramine after meals is generally for reducing cholesterol. Laine (aka HockeyMom) takes cholestyramine throughout the day and it works well for her, maybe she will chyme in on her method/timing.

Also, on your current diet. If I were you I would try to simplify your diet even more. You have quite a bit of variety in your food choices and there might be a food (or foods) that is maintaining a level of inflammation; that might explain your gut's hair trigger with stress.

I eat lamb, sweet potatoes, and recently I added beets to good effect. I will eat turkey if I can find it without preservatives. And I noticed that a local grocery store has frozen duck - thinking of giving that a try. I have a problem with histamine intolerance, which further limits my choices. There was a lot of foods on your list that would have me stuck in the bathroom the next day - they look o.k. if you just have MC but if there is a histamine intolerance issue...

Anyway, good luck Sarah, I hope you don't have to resort to an immunosuppressant, but you have to do what you have to do.

John R.

[tex]

Hi Sarah,

To add to what John has written, you have, arguably, the toughest job in the world — raising young kids while dealing with MC.That appears to be affirmed by the fact that acupuncture works well for you. The relaxation and stress relief it provides goes a long way toward calming inflammation. And calming inflammation is the key to keeping MC under control. It sounds like you are on track to continue to recover, but would probably benefit significantly from some time devoted to stress relief practices.

To answer your first question, "No, those 4 food sensitivities are virtually always for life. The only exception is that some of us can sometimes tolerate duck eggs, especially when used in baked items (but that doesn't work for all of us).

If you're not having regular (daily) watery diarrhea, then BAM is not the primary problem (although it might be a secondary problem), so there is a good chance that you might be able to achieve/maintain remission without taking the bile acid sequestrant. But as John mentioned, if you do feel the need to take it, bedtime might be the best option for you.

We can't regain any significant amount of lost weight until we have our MC in remission. And MC cannot be coaxed into remission until the inflammation level is below the threshold at which it continues to provoke our immune system into a hypersensitive state. Immune system hypersensitivity can be a major problem while we are recovering, because the more we try to avoid our food sensitivities, the more sensitive our immune system becomes in order to try to detect even small exposures to those foods sensitivities. As the inflammation subsides, and the healing proceeds, the immune system slowly returns to its normal sensitivity level.

Controlling MC is tough enough for those of us who are retired, and it's especially tough for someone who has your obligations trying to grow a young family. We're all different, and our lifestyles and our personal situations are all different, but you appear to be fine-tuning your treatment to meet the needs of your situation. Sleep issues are a problem for many of us, and as you note, it compounds the stress problems. Chronic stress is a strong driver of inflammation. You would probably benefit from looking into "mindfulness" and "meditation", as ways to relieve chronic stress.

Thanks for the feedback on the app and the cookbook. If you could take the time to note that opinion on the sites where the app and the cookbook are offered, it would be a great help for others who might benefit from those items.

Tex