31 Years Old, Living with MC; Retrospective

[Cran3]

Hi everyone!

I'm Phen. I've been on and off of this forum for many years now, and it's helped me tremendously during my toughest moments with Collagenous Colitis. I'm not the most avid poster, but I've relied to this site countless times while in distress — usually while on the toilet. LOL. Tex's book also helped me a ton, and I still keep it handy. I'm here today because I've reached a point in my life with MC/CC where I believe I'm in (or close to) remission — and I have some questions!

I was diagnosed in 2016 when I was around 23 years old. I've been exhibiting gastro issues since I was 15-16, with a lot of my issues coming from heavy gluten, dairy, and sugar intake, but I didn't get a colonoscopy until I was in college. I was struggling to eat and weighed less than 115 lbs. My flareups used to be weekly, but now they're very rare and only appear if I eat something out of my normal scope that is one of my trigger foods. I feel a lot like myself again. I'm able to eat high-quality chicken eggs, oats, potatoes, salads, and more after avoiding them for so many years.

But I wanted to post today to ask a few questions about going forward. In May 2023, I took a trip to Japan with my partner. I ate the gluten, dairy, and soy over there with little to no issue. I've heard about the agriculture differences in other countries, but I'm curious to know if anyone else had this experience firsthand when traveling abroad? I only had one urgent flareup out there that almost caused me to defecate myself — and it was red rice! I think it was the toughness of that rice (it was crunchy), because my biggest sensitivities are foods that are naturally harder to digest like gluten, dairy, and cane sugar, but I've also noticed raw nuts, bell peppers, and a few others that I still avoid.

My typical breakfast is fresh greens, kimchi, two poached eggs, potatoes/sweet potatoes, and gluten-free sourdough toast with avocado. Fermented foods seem to help me a TON as well, as long as they are free of cane sugar. My two biggest lifesavers have been psyllium husk to help bulk my otherwise loose stool, and marijuana for helping me calm my stress via CBD and stimulate my appetite.

Lately, I've thought about trying A2 casein cheese after avoiding American dairy for years, but I'm a little scared to do so. Anyone have insight on this? I feel like I'm on a good stretch, but I don't want to try a bite of A2 cheese and instantly revert myself back to where I was years ago...if that's even possible.

My recent bloodwork shows my inflammatory markers are in the clear, and I'm not having any notable pain or bloating — but I do still get diarrhea/loser stools, and I remember someone on here saying that my body might not be used to having normal bowel movements. I've had three colonoscopies as of 2024 with all of them saying the same thing: "Collagenous Colitis" and that's it. I strength train and go to the gym every week, and I also take creatine now with little to no side effects since I'm drinking lots of water for the psyllium anyway.

If you made it this far, thanks for reading! I'd love to know if anyone else had similar experiences as me. I'm still not sure how I ended up with MC/CC at such a young age, but I believe it could be because I had three surgeries on my hand as an infant. (I have syndactyly on my right hand, so I only have three fingers on it. I've heard that antibiotics can mess with the gut biome, especially as an infant.)

If you have any questions to make this more clear, let me know. Thanks again!

[tex]

But I wanted to post today to ask a few questions about going forward. In May 2023, I took a trip to Japan with my partner. I ate the gluten, dairy, and soy over there with little to no issue. I've heard about the agriculture differences in other countries, but I'm curious to know if anyone else had this experience firsthand when traveling abroad? I only had one urgent flareup out there that almost caused me to defecate myself — and it was red rice! I think it was the toughness of that rice (it was crunchy), because my biggest sensitivities are foods that are naturally harder to digest like gluten, dairy, and cane sugar, but I've also noticed raw nuts, bell peppers, and a few others that I still avoid.

I get the impression that you may have a rather casual attitude toward avoiding your food sensitivities. And indeed, over the years, many of us tend to slowly build up a tolerance for some (or all) of our food intolerances, including gluten. But gluten antibodies (antigliadin antibodies) have a 120 day half-life, unlike most food sensitivities, which have a five or six day half-life. The 120 day half-life makes them very persistent, and although most of us tend to react to a gluten exposure in 3 to 6 hours,some of us who have partially healed (possibly depending on whether we have a celiac gene) are able to tolerate eating gluten for a while until our antibody level exceeds our threshold for a reaction, at which point we react (for example, the urgent flare up that almost caused you to "defecate yourself"). And yes, high-fiber rise can indeed increase the inflammation level to increase the likelihood of a flare.

All in all, it appears that your digestive system is never allowed to completely heal. In other words, somewhat frequent (even though they are occasional, not regular) exposures to gluten keep your immune system on the edge of reacting, so that it easily tilts either way. The colonoscopies you had in 2024 show that your intestines have never healed so that the cells of the epithelia of your colon could return to normal histology. If we're strict with our diet, most of us completely heal in 5 to 10 years.

My typical breakfast is fresh greens, kimchi, two poached eggs, potatoes/sweet potatoes, and gluten-free sourdough toast with avocado. Fermented foods seem to help me a TON as well, as long as they are free of cane sugar. My two biggest lifesavers have been psyllium husk to help bulk my otherwise loose stool, and marijuana for helping me calm my stress via CBD and stimulate my appetite.

Virtually all sourdough bread is not gluten-free, despite the fact that many mistakenly believe that it's gluten free. The gluten levels are low enough that some people who are gluten sensitive are able to tolerate it, but most of us cannot. Sourdough bread can only be considered gluten-free If it's actually started with a gluten-free starter and only gluten-free flours are used.

Incidentally, somewhere you mention eating oats. Virtually all of us are sensitive to the avenin in oats. It's just a milder form of allergen than the gluten in wheat, so it takes longer to build up a sensitivity to it. The reactions/inflammatory characteristics are similar to gluten, however (only weaker).

Lately, I've thought about trying A2 casein cheese after avoiding American dairy for years, but I'm a little scared to do so. Anyone have insight on this? I feel like I'm on a good stretch, but I don't want to try a bite of A2 cheese and instantly revert myself back to where I was years ago...if that's even possible.

The problem with that plan is the fact that although milk containing only A2 type beta casein would be safe, there are no cows in existence that produce only A2 type beta casein based milk. All cows produce both A1 and A2 type beta casein. The cows that are claimed to produce A2 type milk, produced mostly A2 beta casein, but they also produce a significant amount of A1 beta casein in their milk. True, they produce a much higher percentage of A2 than A1 type beta casein than most popular American dairy breeds, but they definitely do not produce A2 beta casein milk with a purity anywhere near to a tolerable level for any of us who have a casein sensitivity. It's easier to digest for someone who doesn't have a casein sensitivity but for someone who is sensitive to casein, it's basically as problematic as A1 type milk.

My recent bloodwork shows my inflammatory markers are in the clear, and I'm not having any notable pain or bloating — but I do still get diarrhea/loser stools, and I remember someone on here saying that my body might not be used to having normal bowel movements. I've had three colonoscopies as of 2024 with all of them saying the same thing: "Collagenous Colitis" and that's it. I strength train and go to the gym every week, and I also take creatine now with little to no side effects since I'm drinking lots of water for the psyllium anyway.

Although psyllium is still being recommended by many (including gastroenterologists), it's actual safety for IBD patients is debatable. it's possible that it might be safe in small to moderate doses, but future research may dispute that. It might be helpful to read the newsletter at the following link, if you haven't already read it.

https://www.microscopiccolitisfoundatio ... e_2024.pdf

I hope this helps

Tex

[Gabes-Apg]

Thanks for sharing your journey

regarding foods in other countries. - most definitely there is a difference
the provision of food in most countries is about profit not quality. (40 years ago it was about quality)

ie in Australia for a food to be labelled as gluten free it can only 5 parts per million of gluten
in America - a gluten free food can have 20 parts per million

in australia meats are grown and processed in country it is very very rare to have any meat that is grown and processed overseas
I know it different in some areas of America where chicken is processed overseas.

Also in Australia we still have dedicated butcher in most towns and suburbs.

I live in a town with about 100,000 people and there are at least 6 butchers that I can get good quality meat and eggs.
the butcher I go to all the beef and lamb is grass fed (the beef is from the butchers own farm) he does nitrate free ham etc
There is a local baker who mills her own GMO free wheat, and then bakes to traditional methods. I can ingest her products with no symptoms

Current day processed foods are full of fillers that are cheap! so the producer can make more profit.

from being part of this forum and observing discussions over the past 15 years , I know I am very blessed to be living in Australia if you have to live with multiple intolerances. Our labelling laws and food chain is very good and makes it way easier to manage life with MC

[shray]

Thanks for sharing your journey Phen.

There is a local baker who mills her own GMO free wheat, and then bakes to traditional methods. I can ingest her products with no symptoms

Hello Gabes,

I hope you’re doing well! I have a question I’d like to clarify.

When you mentioned the local baker who mills her own GMO-free wheat and bakes using traditional methods, does this mean you’re able to tolerate gluten without experiencing any symptoms?

I thought the general understanding for MC remission was that being gluten-free is essential, as all MC patients are considered gluten-sensitive. I’m feeling a bit confused after reading your message—could you please help explain?

Thank you,
Shray

[tex]

Gabes is currently undergoing radiation treatments following cancer surgery, so she probably doesn't feel up to participating in any discussions on Internet sites.

Tex

[onebigpill]

Oh no. All my best to Gabes. Sending healing thoughts her way.

[shray]

Hurts to know that. I hope her treatment goes smoothly and that she feels better soon. Speedy recovery to her!!