Cured for over 3 years. My experience with CC.

[cfurer]

Hi Everyone,

I am sharing my story about (Collagenous Colitis) CC with the hope that it will provide others on the board with optimism that they too can overcome this condition. Huge mega-thanks to Tex for creating this amazing message board as it provided me with the information that led to the success I describe below.

As of this post I’m 52 and have been in complete remission for over 3 years after struggling with CC for 2 years prior. I have a bottle of budesonide in my closet which expired in Nov 2015, which is one of the ways I’ve kept track of the timeline of my experience with CC. The following summarizes my experience with CC:
• Sept 2014 – The D starts.
• Prior to CC my diet was mostly low-carb, and gluten-free (GF) and had been for many years. I went full GF after reading Wheat Belly a year earlier, but was already 70% GF prior because I tried to stay low-carb most of the time. I snacked on a variety of nuts/seeds.
• The unexpected upside of CC was that my weight dropped from the stubborn level of 165lbs (plus or minus 10 lbs) to the low 150’s. At 5’8” this made me fairly slim. There’s always a half-full glass waiting to be acknowledged.
• To manage the D-impact on my lifestyle I would use intermittent fasting (IF), limiting my eating window to 6 hours or less, typically between 5pm and 9pm. That would allow me to get through the workday without running to the bathroom. It turns out that IF has become very well studied recently for its positive effects on various aspects of health, but that’s another topic.
• Feb 2015 – Caved in and went to gastro. Diagnosed (DX’d) with CC via colonoscopy after having symptoms for around 6 months prior.
• Mar 2015 - Prescribed budesonide which quickly put me into remission after having continuous D for over 6 months. That was a relief! But the D returned a month or so later.
• I found the Persky Farms message board, which started me down the path of research and self-experimentation to try to overcome CC without relying on drugs.
• June 2015 - Based on some info on the board I tried a daily regimen of Benedryl before bed and Allegra in the morning (Costco’s AllerFx brand). Eureka! It put me back into remission after a couple of weeks and remained D-free for 4 months. This experience suggested that my symptoms may have been related to a histamine reaction in my GI tract, probably large intestine. A big CLUE!
• Oct 2015 - Stopped the Allegra after 3 months (finished 180 pills in bottle). D returned a month later. Argh! I tried the Allegra-fix again but this time it didn’t work, so I started looking into other approaches. Double-argh!
• Nov 2015 – Refilled budesonide but never used.
• At this point I used a dietary shotgun approach to eliminate all foods which could have possibly been causing an allergic reaction. I eliminated all nuts, dairy, fiber, and was basically left with meat (chicken, steak, fish) and salad (green leafy veggies). SUCCESS!
• Jan 2016 – I don’t remember the exact date of the last symptom, but I believe this is when my remission actually began.

So what was the culprit? What food could have provoked a genuine DX of CC in my system? The doctors are clueless.

Theory - Sunflower seeds! In hindsight I believe the dietary culprit was, of all things, sunflower seeds. I had started using them as a primary low-carb snack around a year prior to my first symptoms. I can’t be 100% certain but it’s my primary suspect. My less-likely suspect is peanuts, the evil legume masquerading as a nut. But I had eaten them for years without issue, and wasn’t eating many of them prior to my symptoms. Since going into remission I have re-introduced nuts into my diet, but no seeds or whole grains or legumes. I eat almonds, macadamias, pecans, and walnuts. Some of them may have been made in the same facility as peanuts, but it’s never affected me.

Regarding dairy, I eat cheese many days a week now, but usually goat or sheep. I avoid cow cheese, and other cow dairy products due to the negative effects of A1 casein described in “The Plant Paradox”. I do use half-and-half in tea or coffee on occasion, but it’s very little and its protein content is low. My family and I occasionally do a Ben and Jerry’s binge, and it’s ever caused me problems other than gaining weight, so I don’t think dairy was the culprit of my CC.

Many thanks again to Tex for operating this great message board and best wishes to everyone dealing with this condition.

[brandy]

Totally amazing update. Thank you for sharing. This post has a lot of great information for newcomers.

[carolm]

A great summary! Thanks for sharing. I’m sure others will benefit from reading this.

Carol

[bubba]

Thank you for posting your experience! You have given a lot of very helpful information!
Cathy

[gcarlsen]

Thank you for sharing your journey. It gives the rest of us hope!

I also can't thank Tex enough for this page. I realize I am not alone in this world with the MCC struggles. There is amazing information here.

[KarenT]

Wow, that is a wonderful report cfurer! I'm so glad you are doing so well. Interesting about the goat or sheep cheese..... I am casein sensitive, but now you've got me wondering if I would be ok with goat cheese....? Hum.

[brandy]

Hi Tex,

Can we move this to the success story area? After time for folks to read?

[tex]

Sure. I intended to do that, but forgot.

Thanks for reminding me.

Tex

[threegen]

Hi Tex,
I'm new to this forum and have been so encouraged to read many of the reports of remission and the important information in the effort to understand Microscopic Colitis. I've suffered under it's symptoms for almost 2 years but just over one month ago after previously eliminating gluten, wheat, dairy, and grains I was only left with rice, zucchinis, peppers, broccoli and meat each day. I could have managed on that had it completely fixed the D, but it did not, so I delved into understanding why. It was only then that I began to understand the connection between plant foods and toxins (oxalates etc) that could be another culprit in my diet. I was shocked to say the least that the humble vegetable toted to be the ultimate health food could be such a menace to my digestion too. So that's when I decided to try a carnivore eating plan to see if it could help. After all, what was left for me to choose- but meat. Within 24 hours the D stopped. I have much to learn about tweaking the amount of salt, fat, protein ratio and trying not to loose any more weight, but overall I was doing well. Then I introduced an egg yolk into my diet and all hell broke loose again. Eventually after a couple of weeks flare up symptoms I'm feeling ok again. I do not wish to go the route of medications if I can avoid it, and although my GP suspects I have Microscopic Colitis I have not had a colonoscopy to confirm which type it is. I have read that it makes little difference if it is CC or LC to the method of healing.
Anyway, just wanted to say hello and thankyou for this fantastic forum and information on this site.
Claire

[tex]

Hi Claire,

Thanks for sharing your experience. Yes, plant-based foods are not nearly as helpful as vegans and vegetarians think they are. They're loaded with anti-nutrients. If you haven't seen it already, you might be interested in a newsletter recently published by the Microscopic Colitis Foundation. For your convenience, here's a direct link:

https://www.microscopiccolitisfoundatio ... 732984.pdf

If it works best for you, an all meat diet is healthy, as long as the diet includes enough fat. Protein and fat are inessential diet elements for good health, but fiber and carbohydrates are not, despite claims to the contrary by so many self-proclaimed health "experts". This was proven back in the 1930s by an Arctic explore, as described in the article at the following link:

https://biblelife.org/stefansson2.htm

I hope your success continues.

Tex

[threegen]

Thankyou Tex,
I found both of the articles very interesting, and as I had been looking into the biblical references to eating of meat, your link to the second article was most timely. I have always been interested in healthy eating, but I am amazed to see that so many others with gut compromised health have had a similar healthy eating background. I now see behind the 'lies' about healthy eating recommendations and the propaganda that has been touted in an effort to cause people to eat processed food, genetically altered plant food, seed oils and avoid meat and it's fat. Unfortunately for many of us who have developed diseases like microscopic colitis we may have to wait a long time to identify the real cause but at this stage the food industry and medication industry is looking very guilty in my eyes. Although like many I developed this after a short course of antibiotics for a urinary tract infection, I'd be interested to know if anyone else can trace their illness back to a urinary tract infection? Just wondering incase if it was not caused by the antibiotics I took but rather by the bacteria itself involved in the urinary tract infection.
I have a couple more questions, I hope you don't mind answering please? ( 1) Is it common after a flare-up of WD to have no bm for several days? I am trying to figure out if my 'not going' is a result of inflammation building up to a big release or a subsidence after loosing everything in WD. ( 2) Is carbonated natural sparkling water a problem for many people with MC?
There are so many interesting cases on this site, I'm so thankful that you have all this information in one place, and so glad I found it. I had been searching you-tube for week prior but very little information was available.
Many thanks
Claire

[tex]

Hi Claire,

You might be interested in the results of, and the comments about the survey located at the following link:

viewtopic.php?f=28&t=14872

I have a couple more questions, I hope you don't mind answering please? ( 1) Is it common after a flare-up of WD to have no bm for several days?

That was my own reaction pattern about 20 years ago, before I discovered, by trial and error food testing, how to get this disease under control. I call it alternating diarrhea and constipation (alternating D/C). Gastroenterologists, as a group, are unaware of this reaction pattern, because it's not recorded in the medical literature, but a handful of us here have a similar reaction pattern. In my case, my reaction cycle took about 10 days to 2 weeks to complete, normally, but this time can vary. My own opinion is that this pattern is specific to those of us who have a chronic magnesium deficiency causing lifelong constipation issues. But of course there's no medical research to back this up.

As far as I'm aware, most of us are able to drink carbonated, or sparkling water without any problems. But I'm sure there may be some exceptions out there. I doubt that everyone can tolerate it before they reach remission, for example, because almost all of us have problems getting rid of gas when MC is active, and carbonated water would only increase the problem.

I hope this helps.

Tex

[threegen]

What a good survey on antibiotics, thankyou for sending that. Maybe the antibiotics were just the final straw for some of us if they weren't the cause, I'm ever hopeful that we will know for sure one day. Thankyou for your reply and helpful information.


Wow, I didn't know that about magnesium. Is there a way to test myself for magnesium deficiency?
Although I have never had a problem with constipation prior to that one time I mentioned, at the time I thought it was more like there was just no food in my intestines even though I'd eaten 3 times a day and I had no urgency to go for 12 days, wondering where my food was going. But when I ate the egg yolk on day 12 that all changed and brought on a WD.

Am I correct in thinking it's the kidney that releases magnesium into our system and there could be a kidney problem if we are deficient?

I'd be interested in learning more about constipation too as my sister who is in her 70's has had chronic constipation since her teens. She has tried everything and is now trying an elimination diet.

I hope you are doing well...
Claire

[Gabes-Apg]

I have been one that had more constipation than diarrhoea in my MC journey.

Magnesium deficiency was biggest contributor to the constipation issue

my MC safe suggestions for constipation issues
- increase water intake
- fix magnesium deficiency. ( if struggling to tolerate it orally use magnesium sprays, magnesium foot soaks)
I used to spray magnesium spray on my stomach and tops of my legs every time I went to the bathroom
- coconut oil orally and topically. have teaspoon of coconut oil at least once a day orally. Have a seperate jar in bathroom and it is good to use topically to protect the delicate skin of the anus
- right balance of fibre in diet. too much fibre will bulk up stool and make it harder to pass. for me if I start to have constipation I increase vegetable intake a small amount or eat a peeled apple
- Vit D3 this helps to reduce inflammation so the stomach and bowel can function properly
- stomach acid - P5P (active B6) and magnesium are key to good stomach acid balance
- avoid taking PPI's
- apple cider vinegar. (some MC'ers can not tolerate this)
- avoid processed foods and have eating plan based on whole foods. (meat and vegetables etc)

[threegen]

Hi Gabes,
thankyou for your reply I will pass that information on to my sister.

I read about your bone broth and wonder if you have heard of any who can't tolerate it? I ask because Dr Natasha Mcbride advices it may be too strong for some at the beginning of healing. I was thinking of starting off with a chicken stock as it's more mild. What are your thoughts?
Claire