Hello all,
I am grateful to have found such a thriving community. I want to preface by saying that I have followed a paleo-type diet with some "safer" starches (rice, corn occasionally) as part of an 80/20 plan since probably 2009. I rarely ate gluten except for the occasional pizza, beer, or birthday cake celebration. It was probably 5% or less of my diet if that. I am a registered dietitian nutritionist and love to cook from scratch including nutrient-dense foods like offal, grassfed meats/poultry, pastured dairy we buy from a co-op. I have always had issues with some types of dairy, but tolerated heavy cream (and ice cream made with it), cheese and yogurt well. This is my story and it's quite long. I have read a lot about atypical presentations of microscopic colitis, so hopefully someone else will find this valuable.
Note: I have over the past several years had seemingly random bouts of my knee or ankle swelling up for no apparent reason (saw a GP and physiatrist), three months of what I was sure was interstitial cystitis but was juuuust tolerable enough to not seek treatment. Both disappeared inexplicably and suddenly. I was tested for a ton of autoimmune markers at the time with no positives. They did seem to coincide with 1) change in seasons - onset of spring or onset of winter and 2) finals season for grad school. I assumed it was stress.
1) About 1.5 years ago, began having monthly 48 hour periods of inexplicable watery diarrhea; seemed to dissipate quickly regardless of what I ate or drank. I wrote it off as I work in healthcare and gastroenteritis had been making its way around a building I covered. I should add that I was HIGHLY stressed during this period, working as a road warrior with long commutes.
2) About 1 year ago, I started noticing my stools were different. I had always been a "once a day" after morning coffee gal, but now I was noticing mucus and sometimes seemed constipated/gassier.
3) Several months ago, my husband and I did our yearly Lenten fast where we chose to follow strict paleo. Things bizarrely started to feel worse. I felt massively bloated. I was sometimes just sitting on the toilet passing gas and mucus. I felt uncomfortable and fatigued, the opposite of how I usually feel when I'm not eating any sugar. I was confused and starting to get worried. I thought initially it was IBS.
4) Lent ended, but in my worry I doubled down on my strict eating. Looking back, all of the cruciferous vegetables probably did not help my tender guts. I also had a lot of increased stress at home regarding my husband's job and decisions we needed to make.
5) Things started to get bad. I was going 4-6 times per day urgently, sometimes only small amounts of stool and mucus. I started to notice blood. At first a few drops, then what I characterized as clots. I did not have pain and my stool was not watery. I made a GI appointment and she said it sounded like ulcerative colitis, but that we'd need a scope to see what was going on.
6) At this point, my life and work began to suffer. I am privileged to no longer be a "road warrior" and have my own office bathroom, but I felt like a zombie. My colleagues noticed. My labs were good, probably because my baseline was so good.
7) I decided to empirically treat inflammation, and added D3, high EPA fish oil, l-glutamine, K2 to my diet and follow a modified autoimmune protocol diet. This didn't do much for me after 4 weeks. I then started taking a chinese herbal medication that I concluded was low risk. I had immediate, next day results with this. I started having "perfect" stools once daily, amazing energy, no more symptoms. I mowed our lawn with a manual push-mower, worked out, slept solidly for exactly 8 hours and was wide awake at work with great mood. This lasted two weeks.
8) I then ruined my winning streak by trying to eat scrambled eggs (mistake, should have tested yolk first) and had a glass of wine...I ended up with watery diarrhea, chills, and the most gut-wrenching abdominal pain I've ever felt. I also started sneezing and my nose was running. Waves of cramps that are only now, two weeks later, waned. It could not have been a clearer reaction to food.
9) Due to awesome timing, my colonoscopy segued from that reaction and I had to prep through all that cramping. It was fairly uneventful, and I did not speak to my GI after, but got a report stating that I had patchy erethyma throughout the colon and terminal ileum. This lead me to speculate many things, including that I had very mild ulcerative colits or Crohn's that was partially healed or conversely in initial stages (based on many, many journal articles I read in the aftermath).
10) Biopsy report comes in - I have put in a medical records request so I can read the full report, but it stated that I have lymphocytic colitis and to use immodium as needed until my follow-up. I want to be sure I am not getting info filtered through a medical assistant and would like to read the full language.
11) Since the scope, I have been following a strict autoimmune protocol and have managed to reintroduce some FODMAPs I thought I couldn't eat, as well as cocoa powder (thank goodness!). I think the scope prep really did a number on my recovery from the egg exposure, but I am now only having 2-3 BMs per day. They are not watery, though loose, and seem to be firming up daily. I am continuing the supplements and have pulled out my long-neglected bottle of magnesium oil based on what I've read here.
Suffice it to say, this has all humbled me. I am a person who has made my career and life in food and nutrition. I have been convinced of the bounty of evidence for leaky gut for years. I do not follow "party lines," as it were in my field. I have recommended autoimmune diets to patients with various autoimmune illnesses for years. It is painful to find myself, after treating my body so well, in this position. I will forever question what my tipping point was - stress? viral illness? the rare pizza? Had I just been delaying something inevitable in my genetic code? I think it will take me a long time to accept and adapt to this change, although I've already had fun with using AIP approved starches to make some treats that have made me feel "normal." My husband and I love to travel all over and I am hopeful that I can get to a place where only a few things (such as gluten, soy, dairy) are off-limits.
I am glad to see that there is such a focus on food here. Thank you for having me. :-)
TL;DR - I am a registered dietitian recently diagnosed with lymphocytic colitis and it has turned my world paradigm upside-down.
Newly diagnosed; food is my life.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. If you're trying to pinpoint an ultimate reason why you developed increased intestinal permeability and LC, look no further than the stress in your life. That's the straw that breaks the camel's back for virtually all of us. Published research shows that stress causes inflammation and chronic inflammation leads to MC (CC or LC).
And it was probably the albumen (the egg white) that caused your reaction, since albumen is a common allergen. You might be able to tolerate the yolk. But it's certainly possible to react to the yolk.
But here's what I think cliched the deal on your leaky gut and why you developed LC: If you're going to cut gluten out of your diet, you need to cut it out 100 %, not 95 %, or 99 % or 99.99 %. Why? Because by almost (but not quite) eliminating it, you amplify your existing gluten sensitivity by several orders of magnitude. You might have been OK (at least for years) if you had not restricted it. Once you restrict it, your sensitivity to it (and certain other foods), escalates. And once you begin reacting to gluten, you develop leaky gut, and that ensures additional food sensitivities in a cascade of events. That's just my opinion. I'm not aware of any published research to back it up.
Interestingly, the profile of a typical MC patient is virtually always that of someone who tries to live healthier than others, and do more than others. As a group, we are (or were) overachievers, perfectionists, self-starters, and highly ambitious individuals. A high percentage of us are athletic and we tend to be nurses, engineers, teachers, etc. The stress finally begins to get to us. At least that's how I see it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. If you're trying to pinpoint an ultimate reason why you developed increased intestinal permeability and LC, look no further than the stress in your life. That's the straw that breaks the camel's back for virtually all of us. Published research shows that stress causes inflammation and chronic inflammation leads to MC (CC or LC).
And it was probably the albumen (the egg white) that caused your reaction, since albumen is a common allergen. You might be able to tolerate the yolk. But it's certainly possible to react to the yolk.
But here's what I think cliched the deal on your leaky gut and why you developed LC: If you're going to cut gluten out of your diet, you need to cut it out 100 %, not 95 %, or 99 % or 99.99 %. Why? Because by almost (but not quite) eliminating it, you amplify your existing gluten sensitivity by several orders of magnitude. You might have been OK (at least for years) if you had not restricted it. Once you restrict it, your sensitivity to it (and certain other foods), escalates. And once you begin reacting to gluten, you develop leaky gut, and that ensures additional food sensitivities in a cascade of events. That's just my opinion. I'm not aware of any published research to back it up.
Interestingly, the profile of a typical MC patient is virtually always that of someone who tries to live healthier than others, and do more than others. As a group, we are (or were) overachievers, perfectionists, self-starters, and highly ambitious individuals. A high percentage of us are athletic and we tend to be nurses, engineers, teachers, etc. The stress finally begins to get to us. At least that's how I see it.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome to our group
and sympathies for your issues and that you had to find us.
as you read through posts and discussions, you will see that your journey to this point is very similar to many here.
so far as what caused the tipping point, for most here it is generally not one thing, it is generally a combo of things, genetics, life to this point, stress, virus/parasite/bacteria, hormones etc etc.
it is very hard to 'disregard' everything that know, did, believed about nutrition and lifestyle to this point and embrace the eating plan and lifestyle changes that are encouraged here... that is where the mental and emotional aspects of life with MC come in, there are some good resources for this in the guidelines to recovery section - books, audiobooks, podcasts etc.
keep reading - keep asking questions..
happy healing
and sympathies for your issues and that you had to find us.
as you read through posts and discussions, you will see that your journey to this point is very similar to many here.
so far as what caused the tipping point, for most here it is generally not one thing, it is generally a combo of things, genetics, life to this point, stress, virus/parasite/bacteria, hormones etc etc.
it is very hard to 'disregard' everything that know, did, believed about nutrition and lifestyle to this point and embrace the eating plan and lifestyle changes that are encouraged here... that is where the mental and emotional aspects of life with MC come in, there are some good resources for this in the guidelines to recovery section - books, audiobooks, podcasts etc.
keep reading - keep asking questions..
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome Supergirl,
I sympathize with your story, and the conundrum that you are a nutritional dietitian on top of it all and MC still kicked your feet out from under you.
It's a sneaky syndrome and I imagine it was stress and hormones that topped it off for me, along with the fact that my grandmom and mom both had versions of distressed intestines throughout my childhood years so it doesn't surprise me that I tend to have something along those lines now.
Thankfully your have an IN with your profession, so you are going to be just fine!
Hugs
Erica
I sympathize with your story, and the conundrum that you are a nutritional dietitian on top of it all and MC still kicked your feet out from under you.
It's a sneaky syndrome and I imagine it was stress and hormones that topped it off for me, along with the fact that my grandmom and mom both had versions of distressed intestines throughout my childhood years so it doesn't surprise me that I tend to have something along those lines now.
Thankfully your have an IN with your profession, so you are going to be just fine!
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Tex, thank you so much for the warm welcome. Your thought regarding gluten is interesting. If you told me a year ago I'd have to give up craft beer, I'd have laughed. At this point, I'm just hoping to be able to tolerate a glass of wine again!tex wrote:Hi,
Welcome to our Internet family. If you're trying to pinpoint an ultimate reason why you developed increased intestinal permeability and LC, look no further than the stress in your life. That's the straw that breaks the camel's back for virtually all of us. Published research shows that stress causes inflammation and chronic inflammation leads to MC (CC or LC).
And it was probably the albumen (the egg white) that caused your reaction, since albumen is a common allergen. You might be able to tolerate the yolk. But it's certainly possible to react to the yolk.
But here's what I think cliched the deal on your leaky gut and why you developed LC: If you're going to cut gluten out of your diet, you need to cut it out 100 %, not 95 %, or 99 % or 99.99 %. Why? Because by almost (but not quite) eliminating it, you amplify your existing gluten sensitivity by several orders of magnitude. You might have been OK (at least for years) if you had not restricted it. Once you restrict it, your sensitivity to it (and certain other foods), escalates. And once you begin reacting to gluten, you develop leaky gut, and that ensures additional food sensitivities in a cascade of events. That's just my opinion. I'm not aware of any published research to back it up.
Interestingly, the profile of a typical MC patient is virtually always that of someone who tries to live healthier than others, and do more than others. As a group, we are (or were) overachievers, perfectionists, self-starters, and highly ambitious individuals. A high percentage of us are athletic and we tend to be nurses, engineers, teachers, etc. The stress finally begins to get to us. At least that's how I see it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Your point about overachievers strikes a chord for me. I have always jokingly referred to myself as a "dysfunctional perfectionist." I'm glad (well, kinda) that I'm in good company.
Thank you for the kind words. The emotional aspect has been the most difficult as even foods I would have considered convenient, but healthier choices such as Chipotle or BBQ are temporarily off-limits until I know clearly what I can and cannot tolerate.Gabes-Apg wrote:welcome to our group
and sympathies for your issues and that you had to find us.
as you read through posts and discussions, you will see that your journey to this point is very similar to many here.
so far as what caused the tipping point, for most here it is generally not one thing, it is generally a combo of things, genetics, life to this point, stress, virus/parasite/bacteria, hormones etc etc.
it is very hard to 'disregard' everything that know, did, believed about nutrition and lifestyle to this point and embrace the eating plan and lifestyle changes that are encouraged here... that is where the mental and emotional aspects of life with MC come in, there are some good resources for this in the guidelines to recovery section - books, audiobooks, podcasts etc.
keep reading - keep asking questions..
happy healing
Thank you, Erica. It's funny, I have been reading through many threads here and other places and consistently heard griping that dietitians/nutritionists are useless for IBD in general, but especially MC - and I would agree 100%! I have seen the disease name MC in passing, but never knew anything about it until I was diagnosed and had to research it. My colleagues have never heard of the AIP diet and we definitely did not cover it during school or clinical internship. I am glad to say that at least my colleagues are supportive.Erica P-G wrote:Welcome Supergirl,
I sympathize with your story, and the conundrum that you are a nutritional dietitian on top of it all and MC still kicked your feet out from under you.
It's a sneaky syndrome and I imagine it was stress and hormones that topped it off for me, along with the fact that my grandmom and mom both had versions of distressed intestines throughout my childhood years so it doesn't surprise me that I tend to have something along those lines now.
Thankfully your have an IN with your profession, so you are going to be just fine!
Hugs
Erica
I can't recall how I stumbled upon paleo/AIP/gluten-free years ago, but I am certainly glad that I did. It has made things easier in terms of diet, although all of the other things are not easier (physical, emotional, mental).
Stress strikes again! I have been thinking of a lot of what-ifs, but I think even if I led a charmed life on an island with no reason to worry, I'd have found something to stress over and be in the same place I am now.
MC is a tough gig, but it's not the end of the world. It's only marks the end of our old lifestyle and the beginning of our new lifestyle. I realize that may not impress you favorably at this point, but you will eventually embrace the changes you have to make and you will view them as challenges, rather than obstacles. Your knowledge and fascination with food will allow you to rearrange and fine-tune your recipes and menus so much better than most people. You'll figure out how to turn otherwise boring and bland limited-ingredient meals into a gourmet's delight.
Eating to control MC is a challenge, but it's a very healthy lifestyle when done right.
Tex
Eating to control MC is a challenge, but it's a very healthy lifestyle when done right.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hello. I fit into the profile Tex described. Stress tripped my LC trigger when my only child left for college. I had no idea how stressed I was until the D began. You will find a new "normal" and will be able to travel. Eating out is like playing roulette, but I have traveled several times without any issues, as have others. Good luck on your journey to healing.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Super Girl...welcome! Even your name made me smile...fits so many of us who strive for perfection ....
I fit that profile too.....unremitting stress with our son and his wife for almost 10 years preceded my diagnosis of LC...we just don't seem to comprehend how destructive stress is ...even when we develop auto immune diseases!
The first thing I think of is.,,what did I eat....not what was I stressing over yesterday or past week?
Glad you found this group!
Sunny
I fit that profile too.....unremitting stress with our son and his wife for almost 10 years preceded my diagnosis of LC...we just don't seem to comprehend how destructive stress is ...even when we develop auto immune diseases!
The first thing I think of is.,,what did I eat....not what was I stressing over yesterday or past week?
Glad you found this group!
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Thank you for the reassurances. My husband has always said I internalize my stress and it's finally come to fruition - I guess now it's REALLY externalized ha ha. Sigh.Marcia K wrote:Hello. I fit into the profile Tex described. Stress tripped my LC trigger when my only child left for college. I had no idea how stressed I was until the D began. You will find a new "normal" and will be able to travel. Eating out is like playing roulette, but I have traveled several times without any issues, as have others. Good luck on your journey to healing.
sunny wrote:Super Girl...welcome! Even your name made me smile...fits so many of us who strive for perfection ....
I fit that profile too.....unremitting stress with our son and his wife for almost 10 years preceded my diagnosis of LC...we just don't seem to comprehend how destructive stress is ...even when we develop auto immune diseases!
The first thing I think of is.,,what did I eat....not what was I stressing over yesterday or past week?
Glad you found this group!
Sunny
I am so glad to hear it's not just me. I have read frequently that chronic stress, a consequence of living in the "modern world" is the root of many, many illnesses that were not present in the past where stress was more acute (such as being chased by a predator) - we are ill-equipped to deal with unyielding, constant stress.
Thank you, Tex. I feel fortunate that there are many bloggers out there who have figured out and shared recipes that are gluten-free, dairy-free, soy-free, grain-free, egg-free, nightshade-free so I can expand beyond meat and cooked vegetables - some really creative spirits!tex wrote:MC is a tough gig, but it's not the end of the world. It's only marks the end of our old lifestyle and the beginning of our new lifestyle. I realize that may not impress you favorably at this point, but you will eventually embrace the changes you have to make and you will view them as challenges, rather than obstacles. Your knowledge and fascination with food will allow you to rearrange and fine-tune your recipes and menus so much better than most people. You'll figure out how to turn otherwise boring and bland limited-ingredient meals into a gourmet's delight.
Eating to control MC is a challenge, but it's a very healthy lifestyle when done right.
Tex
Welcome
Welcome Supergirl. I'm new to the forum as well and appreciate you sharing your story in detail. I am a foody, love to cook and experiment with new foods. I have always tried to eat a good balanced diet. More recently (past 18 months) I had started eating a large fresh salad each day for lunch that I would prepare from scratch. Little did I know that what I thought was a great food decision, was actually sending me down the slope to MC.
It's funny that we all reflect on what food we have eaten when we have a 'flare up', but don't think about what is stressing us. I suffer flight anxiety and am flying off on an overseas holiday in the next 48 hours, so my MC is 'killing me' at the moment, regardless of what I eat
I am just hopeful, like you, that over time I will get better understanding of how this condition uniquely effects me and how I can manage it well. Best wishes on finding the light on your journey sooner rather than later.
It's funny that we all reflect on what food we have eaten when we have a 'flare up', but don't think about what is stressing us. I suffer flight anxiety and am flying off on an overseas holiday in the next 48 hours, so my MC is 'killing me' at the moment, regardless of what I eat
I am just hopeful, like you, that over time I will get better understanding of how this condition uniquely effects me and how I can manage it well. Best wishes on finding the light on your journey sooner rather than later.
Re: Welcome
Thank you for your kind words. I do keep thinking back to that cauliflower "rice" I was pounding thinking, like you, that I was doing so well from a health perspective (when in reality my colon was screaming). Hindsight, 20/20, etc.Maximus74 wrote:Welcome Supergirl. I'm new to the forum as well and appreciate you sharing your story in detail. I am a foody, love to cook and experiment with new foods. I have always tried to eat a good balanced diet. More recently (past 18 months) I had started eating a large fresh salad each day for lunch that I would prepare from scratch. Little did I know that what I thought was a great food decision, was actually sending me down the slope to MC.
It's funny that we all reflect on what food we have eaten when we have a 'flare up', but don't think about what is stressing us. I suffer flight anxiety and am flying off on an overseas holiday in the next 48 hours, so my MC is 'killing me' at the moment, regardless of what I eat
I am just hopeful, like you, that over time I will get better understanding of how this condition uniquely effects me and how I can manage it well. Best wishes on finding the light on your journey sooner rather than later.
Stress is just so bad. I look back at my food journal and good/not as good days do not seem to correlate with foods within my restricted diet at this point; it probably correlates with what I had going on at work the day prior! Have you thought about treating/do you treat anxiety? I have been trying to do things like mindful breathing, meditation. It works...when I have time to do it.
Being a foodie - I have been trying to reframe this as a new challenge/opportunity to explore new culinary frontiers. I will have to read your thread as well!