MICROSCOPIC COLITIS SUPPORT

Again, I cannot thank all of you for the information provided here. I am getting a better handle of things and formulating my plan. :)

How do you know when your gut is healed? I understand remission and that things have returned to what is normal for you, but I read how Wayne said that can happen significantly before you are healed. Is obtaining remission and sustaining remission what your goal should be? or is healing observable (I hope that does not come across as a silly question.)

Also, I am looking at the Enterolab tests, has anyone had luck getting insurance to reimburse or having a GI or a physician actually order them?

Thanks,
Angela

the main identifyer that the gut has healed is that you have minimal to no reaction to major triggers.

this sounds simple/easy in those words - albeit for some people here (i would approximate about 25%-30%) that because of ongoing contact with mild to medium level triggers and/or the impact of other health conditions, some do not get full gut healing despite years of the bland gut healing eating plan, lifestyle changes and taking the right nutrients.
they may not get full gut healing, but they do get a good level of remission per say, where there is minimal symptoms etc

my observation over my time with the group based on the inputs to the forum
- for people under the age of 50 with no other health issues, they can get to a great stage of gut healing in 1- 2 years. so long as they avoid contact with major and medium triggers. (for some under 40 this can happen quicker than 1 year)
- for those over 50 with no other health issues, gut healing is about the 2 year time period
- for anyone with multiple health conditions, or for those that it takes longer to sort out triggers and to resolve nutrient imbalances etc then good gut healing can take 2-3 years
- there are a small group I would estimate less than 5-7% that due to reasons we are not 100% sure of, have ongoing mild MC symptoms even after years of sticking with bland low inflammation eating plan, trying the various medication protocols, and supplement protocols etc

does this help answer your question?

Angela,

To add to what Gabes posted, the only way to absolutely verify healing is by showing complete healing on biopsy samples taken from the colon. IOW, if all cellular histology has returned to normal, then complete healing is verified.

Looking at what Gabes said from another angle, a good clue regarding complete healing can be found in what happens if we accidentally ingest a tiny amount of gluten on a single occasion. If nothing happens, or if we only have a slight reaction for a few hours to half a day, our gut is probably well healed. If we have a major reaction, especially one that lasts for several days, our digestive system is probably not completely healed because our sensitivity level is still relatively high. Our relative sensitivity level should decline as healing progresses.

Of course it's best to avoid gluten challenges, even small ones, because even tiny exposures will cause a small amount of damage. If we were to ingest a tiny amount of gluten several times a week for a few weeks or more, virtually any of us would soon find ourselves back in a full flare, with a substantial amount of healing ahead of us before we could get back to where we were before making that mistake.

Tex

To address the lab questions... I just got my labs done. I couldn't get a doctor to order them, but my insurance reimbursed me for $252. I got the A1/C1 panels done for $539. I haven't had a chance to review what they covered versus what they didn't, but it seems they deemed some tests reimbursable and paid the full 75% my insurance calls for, and some tests just weren't covered. For example, maybe they think the gluten test is a 'real' test, but corn not so much? My explanation of benefits just says lab and the price. I'll post again when I have time to review it all and get my head around it because I do want to know. But I was pleasantly surprised they covered any of it. I wouldn't plan on that though, I wouldn't recommend ordering the tests unless you can afford to eat the entire costs. Just my 2 cents as always.

Thank you all for responding. Not to sound too out there, but I like visualizing an ultimate goal, and the short term goals in-between (guess it goes along with the type-A, control-as-much-as-possible personality). Wayne's book should arrive in a day or two, but I thought I would ask. I am beginning to accept the time all of this will take, but it helps me not feel so overwhelmed if I know potentially what remission and healing look like and what steps I need to take.

Kelly-Thank you for the info on the labs. Good to know, and I agree. I will go into it thinking that it is not covered and be nicely surprised if it is. I think it would be valuable to have the information that the labs provide. I know many, if not all, of the items tested for would eliminated in the first phase, but it seems to see it would be helpful in going forward and make learning what I am intolerant to easier.

Thank you all again
-Angela

Goal oriented huh? I know the type. Unfortunately we aren't in charge here, so don't get too discouraged. But if I were to suggest some goals...

* Diet compliance, it will take time to discover your 'safe' diet and adjust your cooking and whatnot to it. Getting to the point that you think you're probably eating a safe diet would be a potential goal. Maybe setting up mile markers after that to re-assess.
* Stress reduction and/or self care. Stress can play a factor here, so do you do enough stuff to take care of you or are you always taking care of other folks. Can't take care of them if you're sick all the time so got to make this a priority over others. Assess your stress levels or how much you're doing to take care of yourself, and create some goals around increasing your priority on these things.
* Something completely unrelated. I'm pretty much a noob with this stuff, but I've found I spend WAY to much time thinking about how to 'fix me'. Which leads to impatience. I'm trying to come up with some projects or other unrelated goals to get my mind on more normal things.

Oh, and don't get a new puppy. NOT good for the stress level, I may kill this dog before it's full grown! Why does she think that water bowls are toys!?

I'd be interested in other people's answers. I'm pretty goal oriented too, so maybe some of this would help me stay motivated.

in line with Kelly's third point above,
part of figuring out your MC management plan is finding the sweet spot - where you are being proactive enough to avoid major triggers, and contamination etc but relaxed enough that you are not overthinking / OCD.
there is also a difference between fixing and healing.. (that was a big part of the wellness journey for me, mentally and emotionally linked to stress etc)
have reasonable expectations and goals - there is no failure in MC world, only learnings...

Thank you Kelly and Gabes!

Kelly, you made me laugh with the puppy stress. Ha! It is a good thing that puppies are so cute!

Gabes, I love your quote "there is no failure in the MC world, only learning" - that can apply to so many other areas too!

I do agree with stress affecting wellness. Personally, I went through several years of significant stress with my mother's illness. The kind of stress that you just have to get through, as much of it is unavoidable. She passed 2 years ago. My sister and I have both seen the negative results of this in our health - different ways for each - but much of it did not start until after she passed. I think the body just holds things together sometimes like that.

But I do have some stress reducers - and I will work on doing them with more frequency and purpose.

Since my mom's passing, I have done acupuncture frequently and love it. It was especially helpful for my migraines, which I have suffered from since high school. I did try acupuncture for the frequent D (at that time doctors just told me to take Immodium). The interesting part was when she placed the needles in my abdomen, the feeling was usually strong compared to other needle placings (not painful, just a strong sensation). It definitely meant something was going on, but didn't know what. Acupuncture and Chinese herbs did help the symptoms, but I went from one extreme to another. After two months and discussion, the best path for me was to try to get a diagnosis, which western medicine is very good at. I do plan on returning to acupuncture. At the very least, it forces me to be completely still for one hour.

Another stress reducer for me is gardening. Not that my garden is much to look at, but I love to play in the dirt. I am very much looking forward to the warmer weather.

Being newly diagnosed, I am definitely hyper-focused on MC. My hope is as I start making changes and the "newness" of the diagnosis passes, the overwhelming feelings will pass.

Thank you all again!
Angela

That time you spend in the garden will help health wise
http://articles.mercola.com/sites/artic ... fects.aspx#!

acupuncture wise, I found it very helpful to reduce inflammation and balance the Qi - which helped the digestion organs work in harmony more. things like Acupuncture wont 'cure MC' but it will definitely assist to reduce inflammation and optimise healing.
something to note, since having MC I have not been able to handle chinese herbs very well ( I used them for years prior to MC coming alive).

Following back up on the insurance question for those that care. A review of my explanation of benefits shows a comment "The quantity of units billed exceeds the medically unlikely edit limit." When I google that, I get the gist that they have an auto trigger to keep from paying out on mistakes or fraud. I could protest the result, but I think I'll be happy they payed what they did.

-K

Hi Angela,
Welcome from one North Carolinian to another! I am in Asheville.

I am relatively new at this, being diagnosed on Jan 8th of 2017. This forum has been my life raft and I'm so glad that I found it in the early stage. Your question about healing was a good one, as I, too, like to have short and long term goals.

So, I have another question for the group: I see in the meals and recipe section that a good many of you eat things that seem way out of my realm right now; salad, nuts, sweets, vegetables with fiber, Bison Bars, and so on. How long did it take to reach that point? A few years? I do understand that everyone is different. But it is encouraging to read about more than Stage One food.

Thanks,
Susan

So, I have another question for the group: I see in the meals and recipe section that a good many of you eat things that seem way out of my realm right now; salad, nuts, sweets, vegetables with fiber, Bison Bars, and so on. How long did it take to reach that point? A few years? I do understand that everyone is different. But it is encouraging to read about more than Stage One food.

Hi Susan,
I only have LC and perhaps a need to watch my stresses in life, but other than that I can say I am closing in on the 2 year healing mark with safe foods and I am very lightly testing the salad idea (very plain mind you romaine, with veganaise/dot of ketchup mixture for flavor) and I might do that once every other week. I don't do much solid nuts yet, my veges are still over cooked, I might taste a Lara bar, but don't usually eat a whole one ever, I'm still careful with any sugar amounts and how often I have had it during the day. So basically Stage One can last quite a while, I wont say that I didn't test the waters in the last 2 years, but I definitely haven't expanded very far from Stage One just yet.

I've gotten to the point that now that I know for the most part what feels safe I don't have much patience for trying much more at this time. Maybe in another year I want to just enjoy feeling decent for a change, every day is different, I have ups and downs...my hormones still like to take control of me even after no menses for 2 years, so I deal with weird body stuff every so often, and Spring and Fall can annoy me with histamine if I'm not careful too.

Keep up the good work! I think you'll know what to change up when the time comes
Erica

Hi Susan,

It took me almost 3 years before I could eat salads and other raw vegetables. I tried them sooner, but they just didn't work.

Tex

For me (important to note MC is not my main health issue)
I am 7 years post diagnosis - and my eating plan for life will be stage 1/2 eating plan, with well cooked veges and proteins, small amount of ingredients per meal, lots meals based on home made bone broth. this is not easy in the hot Australian summers but I have got used to it.

I have never been able to reintroduce salads and nuts (and I lived on them for the years before MC Dx)
I am able to do small amounts of; peeled apple (no more than 4 serves per week)
small amounts of tomato if it is partially cooked, and baby spinach or baby asparagus if it is sautéed before eating (again no more than 2-3 serves per week)

2 years into the healing process GI said my MC was in remission, but my digestion still reacts to too much fibre

Going into my first full year of paying attention to what goes into the body I'm pretty much still in stage one of eating plan with a few things added. I have found that I can tolerate most meats now if they are cooked to the max. Like boiled beef works great for soups etc. (no rare steaks yet). Veggies are cooked to the max, but I don't peal the squash any more. Sugar is a rare treat, but doable. And even a little cheese now and then. Still not ready to go raw on salad yet.