My CC Diet Journey Begins!

[GSwish]

Hi everybody!

My name is Greg. I’m 66 and just now starting the journey to treat my CC using diet alone.

I recently found the Microscopic Colitis Foundation and its recommendations, and the link to this forum where I’ve also learned a lot already.

I’ll start with my history, and save my questions for the end. I promise that there are just a few, this time!

I am extremely active. I cycle indoors or outside 5-6 days per week, 1 or two of those will be a high intensity race. In addition I will also do a hike once every week or two, and lift weights instead of one cycling session. If I do more weight work it will be in addition to the cycling/hiking.
I am also on my feet most of the day working inside/outside and tending a large garden.

I went through a bad time 4 years ago with a long period of no activity due to work+injury+depression, which found my weight maxing out at 175lb.
I’ve since gotten myself back into physical and mental shape, with my weight now down to below my 140lb target.

My baseline daily calorie goal is 2030 calories. My fitness coach advises that based on my current weight I should consume Protein=135g(27%), Carbs=233g(46%), and Fat=62g(27%).
Any replacement of the 200-1000 extra calories that I burn on any given day from fitness activity should be replaced primarily with carbs.

That is a lot of food to consume, and I’m finding it hard to meet my calorie goals. I can’t seem to eat as large a meal as I used to, and my new diet is limiting the calorie dense foods that I used to use to hit my goals. With this inability to fully refuel my body, my Garmin Smart Scale is showing me now under weight at 135lb, and having lost a couple of pounds of lean muscle mass.

So that’s problem #1 - getting enough macros/calories per day

In hindsight, I now see that I started having CC issues intermittently starting about 3 years ago. It started with some short term D issues, but after the 3rd time it didn’t go away, and after 6 months a colonoscopy revealed CC. My GI put me on Budesonide, and we’ve now tried 3 rounds over the course of the last 1.5 years. Each time I start a round things improve, but then decline as the dose is reduced and eventually back to the big D.

After this 3rd round I can see that it’s not going to work, and want to try changing my diet to heal my gut.

I’m having a hard time “feeling out” what works and doesn’t work. I rarely have problems with any food immediately after eating (except legumes) in smaller portions. If I do have problems, it is much later when things hit the lower intestines, and seems to happen even with larger portions of food that I would consider fairly safe. I experience lots of gurgling, gas, pain, and then shortly after the big D. So knowing what it was that I ate over the last few days to trigger that response is very difficult! I’m going to eat some corn today, and time its exit just to get a sense of my personal transit time! Maybe that will help me estimate the meal that caused the issue!!

I ordered the Enterolab tests for A1+C1, Fat, and Yeast. Hopefully I’ll get the kit in a week, and have some results in a few weeks from now.

It seems that at this point, White Rice and Chicken Breast are fairly safe. But I just can’t get enough calories. I have to try adding some other supposedly “safe” foods to even get close to goal, and see what happens.

So that’s problem #2 - CC diet restrictions

Of course, it’s never just one thing… I also have calcium/oxalate kidney stones. I started a low calcium/oxalate diet a couple of years ago per my doctors, and in addition they have me adding citric acid to my daily water intake. They suggested 1 Crystal Light packet per day, which was hitting my citrate targets, but then I found out about artificial sweeteners. Instead, then now have me drinking 4oz lemon juice per day, mixed with water of course! I add 2oz (¼ cup) to a 1 liter water bottle, and drink 2 bottles per day. That with additional fluids is now hitting my fluid targets.

The low oxalate diet is crazy! There are so many foods of different classes that are high in oxalate, and even within a class there are some foods that are low, and others that are high in oxalate.

So that’s problem #3 - low calcium/oxalate diet restrictions

Combining the requirements for problem #1 with the overlapping restrictions from problems #2,3 has created a very difficult problem for me to solve. I’ve created a spreadsheet that lists foods and their respective status for CC and Oxalates, and try to pick foods that are ok for both categories. I’ve just started it. It’s a constant work in progress as I learn new info about both sets, and test new additions.

These overlapping restrictions really make it hard to meet my calorie goals, and many times I just need to toss the careful testing regimen out the door and get those calories in, regardless of the GI and big D discomfort. I do have to remind myself that compared to a lot of sufferers, my personal symptoms are not so extreme. Yet, I don’t want to get to that point, and really need to figure this out long term.

So that’s what’s up with me at this point. Now for a few questions!!

Acidic Fluids or foods?
I’ve got this requirement to drink 4 oz (½ cup) of lemon juice per day. I use the big bottles from Costco.
I also use some Marukan No Sodium No Sugar pure rice vinegar diluted to 4.3%. I soak some chopped up cucumber in it to combine with my white rice/chicken bowl, or to make rice balls for snacks.

Cucumber?
So far it seems ok for me. Very Well Fit shows it as 0.3g fiber in ½ cup and it’s mostly water.

Is initial stomach cramping common?
I get minor stomach cramps/grumbles when I don’t eat, and also after I eat a bowl of rice/chicken/cucumber. If I eat a very small amount of the exact same thing, then no cramps. Maybe the stomach cramping is caused by something other than a reaction to a trigger food? If so, then that becomes an unreliable response to base a test upon.

Any high calorie density food suggestions?
Until I get the Enterolab results I’ll continue to work on finding a lowest base of foods that don’t cause my big gas/grumbling/D events. In the meantime, I can't just stop exercising and turn into a slug again, and will try anything that might help and still remain safe.

Is the big D going to happen regardless of eating safe foods?
The big gas/grumbling certainly seems trigger induced, but should I expect the big D for awhile, even when eating safe foods?

Thanks for listening, and for any feedback that you want to provide, I’m very grateful for any info at this point!

Warm regards,
Greg

[jbrohlr]

Welcome, and sorry you have need for this site. You are in the right place however.

I'm far from being experienced on this site, but I know enough to say that if you are ingesting gluten at all it will have to stop completely and immediately. Get any source of gluten out of your house. Dairy, soy, and eggs are the other three main foods that may cause the gut reactions that you are experiencing, as well as other foods. EnteroLabs will be beneficial for showing you which ones you react to (without much trial and error).

Another caution; please don't obsess about your weight. I initially lost 35 pounds in slightly less than three months when my flair started. My obsession with gaining it back made me commit many mistakes (and another 10 pounds lost).

And watch out for overtraining. I know that overtraining can cause lots of problems and take complete cessation of activities and months to recover from. I would bet donuts to dollars that overtraining can cause gut issues as well.

I have been coming to this site for almost three years. The info here can save you a lot of misery, as well as the book "Microscopic Colitis" by Wayne Persky. I initially found the information depressing, but once I accepted my fate and make the necessary sacrifices I was grateful.

Good Luck
John R.

[Gabes-Apg]

Greg
welcome to the group (and sympathies you had to find us)

and John has provided fantastic reply!

Avoid the major known triggers
dont obsess/overthink about weight and progress
for now for early stages of healing wind back the activity a bit

and I loved this statement by John
I initially found the information depressing, but once I accepted my fate and make the necessary sacrifices I was grateful.

making diet and lifestyle changes, taking the right supplements are important, but our mental and emotional acceptance and approach is just as important.

take your time to read through various posts and discussions.


To answer your questions
getting enough calories will happen - you can't rush it!! figure out safe foods, optimise some healing (bone broth, Vit D3, magnesium) as inflammation reduces, healing and weight gain generally will come

Issue two
kidney stones - do a search within the forum and this has been discussed previously. The common cause of kidney stones is magnesium deficiency.
you will see it mentioned MANY times - magnesium is key for many things in MC world

for now - I would stop the lemon juice - alot of citrus does not settle well for a lot of MC'ers

If you remove all the major triggers, the frequency of D and the urgency of motions will reduce
so will the cramping and the noises.

Food and drink is a big part of triggers, please keep in mind that there are non food and drink triggers as well


hope this helps

[tex]

Hi Greg,

You've already received recommendations from John and Gabes for controlling your CC so I won't bother to waste your time by repeating any of that advice, except to point out that for controlling the kidney stone issues you mentioned, Gabes is right on target with her suggestion about magnesium.

These days, most people in the world are magnesium deficient, and this disease depletes magnesium and vitamin D. If you're absorbing too much calcium from your food, the problem is either way too much vitamin D, and insufficient magnesium, or a more normal vitamin D level, and a magnesium deficiency. Note that historically, doctors have always ordered the wrong magnesium test when checking magnesium levels, and this is part of the reason why most people are magnesium deficient, and don't realize it.

The only time I ever had any problem with kidney stones in my life, was when I became magnesium deficient, because I was taking a brand of magnesium supplement that wasn't easily absorbed, and although I thought I was taking 300 to 400 mg of magnesium per day, I was slowly accumulating a deficiency, and as my deficiency became worse, it didn't take long for the kidney stones to begin developing. Also, I believe your doctor is wrong about avoiding calcium in your food. Read the following article by the National Kidney Foundation:

https://www.kidney.org/atoz/content/cal ... late-stone

in particular, be sure you read the paragraph that starts out, "Include the right amount of calcium in your diet.", and the paragraph that begins with, "Should I cut out all foods that have oxalate or calcium?". And make sure you're taking enough magnesium to ensure that your body has an adequate magnesium level, in order to prevent the calcium and oxalates from precipitating out in your kidneys.

I hope this is helpful.

Tex

[GSwish]

Hi John, Gabes, and Tex!

Thank you so much for the fast feedback, support, and words of encouragement - I'm so grateful!

Currently there is still gluten in the house to feed others, which may be difficult to extricate from their cold dead fingers... That being said, there are quite a few meals that don't involve any gluten based products, but almost always other trigger foods.
I do not share cutting boards, pans, or utensils while prepping or cooking, and they do get washed thoroughly, usually in the dishwasher. I will be more diligent though in the contamination topic.

Actually, I'm quite happy at 5 below goal! it was my original super goal, so getting it to stay near here would be great!! I've always tracked my weight and other data, just not worried about it until now, when the lean muscle mass began to decline. I'll keep an eye on it, and keep the faith that I'll be able to turn this around at some point

That overtraining advice is well placed - In my past research, I've seen mentioned that high levels of physical activity might contribute. I guess I've been ignoring/procrastinating on that because it means cutting back on the one thing that keeps me sane! But I hear you, and will turn it down a notch or two.

On the kidney stone topic, that was going to be in my second set of questions!! I did read about the importance of vitamin D3 and Magnesium Glycinate in this forum, and will go that route for sure. I'm seeing dosages of 300mg D3 and 5000iu Magnesium Glycinate mentioned? It's on my shopping list for tomorrow!

Calcium binding with Oxalate in the gut before they get absorbed is definitely one of my strategies, Some calcium is fine, the docs were just pushing me to lower it a bit - it wasn't something I was limiting. I'm really excited about the D/mag potential to help resolve some of these issues!

I did have a good day yesterday and last night - that was encouraging too.

Thanks so much,
Greg

[jbrohlr]

If there are people baking in your kitchen, that will be a big problem cause the wheat flour can get everywhere. You can find here on this site and on the Coeliac Disease sites that gluten cross contamination by even the smallest amount can trigger a reaction. Chapter 11, "Processed Foods, Labelling and Home Cooking" in the book "Microscopic Colitis" is a good read on cross contamination and how to avoid it.

I'm live alone so I've been able to eradicate gluten (soy's been my biggest problem, they sneak soy into lots of things). Even so I still rinse off any food before I cook it, even meat.

As far as exercise I think (from my own experience) that the distance/endurance regimens make one the most susceptible to overtraining. After I got over my initial flair in 2012 I switched to high intensity exercise (sprinting, powerlifting, etc.); that seemed to provide similar benefits and kept burnout at bay (you still can overdue High Intensity Training but i think you are less likely to). That and I avoided that endorphin rush that you can get with distance running, etc.. That endorphin rush is highly addictive.

John R.