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MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

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Sylsmith

United States

Joined: 25 Nov 2016
Posts: 12
User's local time:
2017 Oct 22 - 1:22 AM


Food Intolerances : Not sure yet

PostPosted: Fri Dec 30, 2016 2:19 pm    Post subject: Reply with quote

Thanks again, Tex. That does clear up my confusion and denial. I just ordered your book, so hopefully that will help me a bunch. I read one review about the book that said OTC anti-histamines helped, but he was talking about collagenous MC. I wonder if you know if anyone who has tried that with LC?

I'm so glad I found this forum - beats the heck out of umpteen Dr. appointments that don't get you anywhere.

Gratefully,

Sylvia
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Fri Dec 30, 2016 2:24 pm    Post subject: Reply with quote

Syliva
welcome!
there is loads of good info here that will help you

yes anti histamines have helped both types of MC - but it may not be a LONG term solution for all

check out the success stories area, here you will see what others have done to attain wellness
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

to help with the eating plan changes we have set up a bit of guidelines to recovery
low inflammation gut healing plan that has helped many to get take intensity out of symptoms
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Dec 30, 2016 3:28 pm    Post subject: Reply with quote

Sylvia,

Yes, antihistamines can be very helpful for those of us whose inflammation is mostly or partially caused by mast cell activation disorder (MCAD), rather than just the usual T-cell inflammation that's considered by the medical community to be the primary cause of the inflammation associated with any type of MC. Unfortunately, many of us have some degree of MCAD and this isn't even recognized by gastroenterologists as being associated with the disease.

There's a relatively long chapter (chapter 14, I believe) in the book that deals with this topic.

Tex
_________________
cowboy

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.
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Dot54



Joined: 11 Jan 2017
Posts: 1
User's local time:
2017 Oct 22 - 1:22 AM


Food Intolerances : In the process

PostPosted: Fri Jan 13, 2017 9:40 pm    Post subject: Thank from a new member Reply with quote

Finding you has been so important. I was diagnosed with CC in 2008. That process was long, but recovery was swift with Entrecote. The 6 months of trial and error leading up to medication was horrible. Over the years, I was careful to avoid triggers - beef, milk mostly. Dec 2016 - I have been experiencing a horrific flare up. Now I am on the BRAT diet. I feel like I am making slow progress but I am documenting everything. I am back on Entrecote, but no success so far. I am a Snowbird from Canada so this has been an expensive challenge. Travel insurance works well for emergency care, but not for a flare up. At this point I could not do the drive to get home, so I am hoping for the best.
_________________
2008 Diagnosed with colllageneous colitis
Managed by attention to mind, body, spirit
2017 Flare-up after increase in stress.
There is no such thing as an overnight success.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jan 13, 2017 11:37 pm    Post subject: Reply with quote

Hello Dot,

Welcome to our Internet family. I'm sorry to hear that an MC flare is spoiling your winter plans. If I were in that situation, I would cut all traces of gluten out of my diet for at least a few weeks to see if that is the main cause of your flare. Virtually every one of us here is highly sensitive to gluten, despite negative celiac test results. It may take longer than a few weeks to see benefits, so please don't give up too soon.

Again, welcome aboard, and please feel free to ask anything.

Tex
_________________
cowboy

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.
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Delicateflower

unknown IP

Joined: 09 Mar 2017
Posts: 1
User's local time:
2017 Oct 22 - 2:22 AM




PostPosted: Sat Mar 25, 2017 6:47 am    Post subject: Reply with quote

Hi thanks for the welcome from you and Tex. I have MC for a few years now so glad I found the site. Its nice to find people who understand what its like to have this crazy problem. Ive learned alot already by looking at the site. Going out today to get me some vit D! Working on mag next.
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Thu Aug 10, 2017 7:14 pm    Post subject: Reply with quote

Dear Gabes,Thank you so much for all your amazing inspiration. Ihave had M.C. reakfast.rekfastfor almost 6years,Iam not great on the computer just learning.I am wondering if I am as good as I can be. I am okay for a couple of weeks and then my stomach gets that rumbling sound. I cannot get remission without medication. What is remission? Ihave D once or twice some mornings and then the rest of the day Iam fine. I get so discouraged every time I get d.Before M.C. I had no stomach issues. I ate everything,now I am so careful but I still need immodians and entrecort. I cannot reach remission just by diet. Should I just accept one or two din the morning or do I stay on a low dose entercort. I am really depressed worried about my future with M.C.My daughter after just having twins was diagnosed with chrones and anklosis spandios arthritis I still cannot spell it. Iwonder if my genes precipitated the chrones. Their is no time for me to have a bad day I have to help her, she also has a active 3 year old.I try to always have breakfast but the mornings are so difficult ,Iam always wondering how my stomach will react to my breakfast.I am so grateful for youand this forum, I am always hoping that tomorrow will be better. I am starting cannabis oils to help me. I used to be the happiest person ,loving life and now I am so sad.I will try these oils and see how I feel. If I do not feel better I am thinking about L.D.N.,that member really inspired me. Any suggestions or opinions regarding L.D.N.Thankyou and all the members I do not now how I would survive without you.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Aug 10, 2017 7:32 pm    Post subject: Reply with quote

Erica

to answer your questions...

what is remission?it is different things to different people. the best summary is, minimal symptoms most of the time. I think it is unrealistic to expect perfect poop every day.

Crohns, AK / genes
Yes there are genes linked to the likelihood of having Auto Immune conditions like Crohns, AK etc
in my wellness journey thus far and for others in the group that may have multiple AI Issues, the key to minimising issues is fixing nutritional deficiencies with key things like Vit D3 and magnesium and active B group vitamins.

breakfast
Do the best you can, everyone is different. The main thing is to minimise stress and anxiety, be ok that the body will react some days. Listen to your body. an important part of having an optimised digestion process is being relaxed and looking forward to the meal.

not achieving remission with diet alone
you are not alone, this is very common. but what I have seen in the 7.5 years I have been part of the group, no medication works totally for the long term. remission is based on a combo of factors elements. Medications have a limited scope of success if someone is deficient in key nutrients and/or having contact with too many triggers and toxins.

LDN
did you read through all the comments and discussions in Moniques LDN post/thread??
from my observations (and this is based on what people have shared, and many of the people that used LDN are not regular posters now; what I saw the success rate with LDN was about the same as for other medications for MC, like entocort, pepto etc - that being It works great for some, ok for some, and not at all for some.
as to why certain medications work fantastic for one but not so well for another - we are not able to explain.

my other observation re LDN is getting the dosage right. too much or too little can cause issues. so please keep realistic expectations that it may take some time to figure out what will work best for you.

Getting Happy again
Happiness and wellbeing is greatly linked to excess inflammation. Being low in key nutrients like Vit D3 and magnesium has big impact on mood, wellbeing etc.
the other aspect of the 'Life with MC journey' is our attitude, our mental and emotional approach to life with MC is just as important as getting the eating plan right and the medication right.
http://perskyfarms.com/phpBB2/viewtopic.php?t=22350
this section in the guidelines to recovery section has some good suggestions for audiobooks and other resources that can help in regards to living life with a condition like MC


in regards to all your questions and using the oils LDN etc, don't make too many changes at once. If you do react to something and you have started 2 or 3 new things at once, there is no way to confirm which item has caused the issue. GO slow with any changes... and be patient with improvements... after starting something like LDN or the oils etc improvements will be very slow and gradual (weeks not days)

hope this helps
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Sat Aug 12, 2017 10:29 am    Post subject: the Reply with quote

Dear Gabes

Every time you write me back I cry tears of appreciation. I will try reading those books you suggested,because mentally I am in a bad place.You and Wayne are my lifeline now.

when I finish this course of Entocort for future reference when I first notice my stomach rumbling should I just have soup how do I bring back my stomach or should I take a entrecort.

Also I am going to start the oils,if I do EnteroLab testing do I do the testing first does it affect the lab results.What's your opinion on doing panel And C.


Thank you

Erica
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Sun Aug 13, 2017 6:51 pm    Post subject: Reply with quote

Dear Gabes,
WHENEVER I read your posts I am so motivated to do better and keep trying.I hope that you are feeling better and getting lots of support,everyone on this forum could not of done it without you.You are INSPIRATIONAL.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Aug 13, 2017 6:58 pm    Post subject: Reply with quote

THanks Erica
glad you finding my replies/posts helpful.

I will reply with longer reply tomorrow - life is bit hectic for me at the moment juggling two Part time jobs and I am now fighting the winter flu germs that is impacting most of Australia at the moment (it is winter here)

I have consumed mega doses of Vit D the past few days and hopefully I am winning the battle.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Sun Aug 13, 2017 7:50 pm    Post subject: Reply with quote

Dear Gabes
I hope you are feeling better.What does one take when we get the flu.I only take Tylenol for the fever,I am afraid for flare with other medications.when my grandchildren come over we love arrow root baby cookies,is there gluten free bababy cookies?
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Aug 13, 2017 9:59 pm    Post subject: Reply with quote

For me and my combo of health issues I am using High Dose Vit D3, Zinc, Vit C.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Sun Aug 13, 2017 10:01 pm    Post subject: Reply with quote

Dear Dot
So happy to see another Canadian,are yout from Montreal?I am hoping to go to Florida this winter but I am a little nervous to find all my special foods.I am hoping whole foods carry gluten free products.I am also 63 diagnosed 6years ago.Welcome
Erica
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Erica
Little Blue Penguin
Little Blue Penguin
Canada

Joined: 28 May 2014

Posts: 39
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten/dairy/fibre/food needs to be boiled
Location: Canada

PostPosted: Mon Aug 14, 2017 9:25 am    Post subject: Reply with quote

Dear Gabes,
How do we know if we need magnesium or various other vitamins.Who does this testing?.
I am on 2 entrecorts for one week then I was going to stay on 1 for a while.My.d is better far from perfect.Should I stay on 2 for 2 weeks then 1 for a week then slowly wean off 3 a week then 2 a week.I am afraid to go off completely I am confused on how to dose my self.What is a low dose that I can stay on until I figure out what is causing my flares.Also is udis gluten free bread okay.I am desperately trying to find safe snacks.Eating prote in and a little veg for meals leaves me hungry.Can I have gluten free and dairy free cheese in small amounts.Any cookies that do not have a lot of ingredients that are safe.I love baby cookies I guess that's out.I am always looking for new safe food.Is kambucha and sauercrout a good idea for probiotics.I? perfec
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