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New to the group, and fairly to CC

 
Post new topic   Reply to topic       MICROSCOPIC COLITIS SUPPORT Forum Index -> Discussions on Treatment Options Using Diet, and/or Medications
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Mommablue

United States

Joined: 21 Jun 2016

Posts: 5
User's local time:
2017 Nov 18 - 2:09 AM




PostPosted: Tue Jun 21, 2016 8:53 pm    Post subject: New to the group, and fairly to CC Reply with quote

I am new to the group and fairly new to CC. I was diagnosed about 7 months ago. However, my symptoms started about 3 years ago.

My diagnosis came in the mail while I was in the hospital for emergency gall bladder surgery. I had multiple stones and one had dislodged and was blocking my liver, causing to to not work. The only information that came in my letter from my GI was that my biopsy results came back positive for CC, to take pepto tabs daily, to google the condition and call if I had any questions.

So, I tried the pepto tabs for awhile, googled and felt more lost than before my diagnosis.

I finally found this forum today and have such mixed feelings! It feels so good to know I am not so alone in this, but also so overwhelming in the healing process. I had just been talking to my mom about how I was going to try to go completely gluten and dairy free... (you guys have support for no cheese right??!! I mean, that is going to be the absolute hardest for me!)

I am ready for the drastic diet chnage, I am ready to not be sooooo tired allll the time, and I am ready for a solid, normal BM. There are good days and bad days and horrible days. I am ready for good days. One of the hardest problems I have is a food can be fine one day and problematic the next. I am looking forward to the support and ideas from the group and hope to help others as well.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7192
User's local time:
2017 Nov 18 - 8:09 PM


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

PostPosted: Tue Jun 21, 2016 9:46 pm    Post subject: Reply with quote

Welcome to the group...

Sympathies that you had to find us and that you are noticing the impacts of MC via tiredness and variations in your day to day quality...

The diet suggestions may see a bit full on at first. But as you do more reading you will see the value and long term benefit to reducing inflammation.
Down the track, after good healing some people can have small serves of dairy... So it may not be forever..

The varied reactions to food day to day is common. Basically our bodies can tolerate x amount of inflammation. Go over the x limit, and there are symptoms....
Keeping in mind that inflammation triggers can be more than just food. It can be pollen, dust, mould, chemicals etc etc .
Ongoing inflammation is not good, and as we age, healing can take longer/not be complete. So the motivation for the drastic eating and lifestyle changes is to maximise wellness for the long term.

In the guidelines to recovery section is some info to help with eating plan etc. (and some articles explaining 'why' which might also help family and friends understand what you are doing...

Spend some time reading posts/discussions, the success stories are is another good area to see what others have done, how long it took etc...
And feel free to ask questions...
_________________
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: 30706
User's local time:
2017 Nov 18 - 4:09 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: Wed Jun 22, 2016 9:04 am    Post subject: Reply with quote

Hi,

Welcome to our Internet family. We consider ourselves a family because no one truly understands what living with this disease can be like unless they actually have the disease.

This is a complex disease, with many, many satellite issues and symptoms, so yes, there is a lot to learn. But it's doable if we just take life one day at a time and learn the details as we go. It definitely gets easier as we go, and as our digestive system slowly heals, the symptoms will fade away.

You may reach a point where you feel so good that you wonder if it was all just a bad dream. It wasn't of course, but reaching that point means that you will have successfully demonstrated that you have learned how to control the disease, and it can no longer dominate your life and your daily schedule.

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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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1258
User's local time:
2017 Nov 18 - 2:09 AM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Wed Jun 22, 2016 12:19 pm    Post subject: Reply with quote

Hi, and Welcome Smile

I know you had gall bladder surgery (I did not) but a post I created a year ago may help with some ideas, it has tons of information in it, but it does start right out with diet because that is what I had an issue with too right from the get go.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173

Also if you haven't already I would read Tex's books you can find his Colitis one in the upper right hand corner of this website, and if you want to know even more I would read his VitD book also https://www.amazon.com/Vitamin-Autoimmune-Diseas...7221?ie=UTF8&*Version*=1&*entries*=0

Hang in there, you are on the right track keep up the momentum!
Cheers
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
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MaryA

unknown IP

Joined: 25 Aug 2016

Posts: 6
User's local time:
2017 Nov 18 - 4:09 AM



Location: Little Rock, AR

PostPosted: Fri Aug 26, 2016 12:29 pm    Post subject: Reply with quote

I do realize this is not a current post I'm replying to, but hoping it may be seen by some, anyway! I'm also new to the group - brand new! I was diagnosed about a year ago, but for some reason, my GI doctor (whom I really like) did not even mention the need for a change in diet. Or if he did, it was so minimal that I have since totally forgotten it. I figured out myself most of my triggers, but I'm so very glad to find this group for information and support. I'm currently in a flare, and just started a round of prednisone. I hate taking steroids! Perhaps if I can focus on dietary changes, I can avoid at least the very severe flares.

Thanks for being there!
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Lilja
Rockhopper Penguin
Rockhopper Penguin
Norway

Joined: 25 Aug 2014

Posts: 893
User's local time:
2017 Nov 18 - 10:09 AM


Food Intolerances : Gluten, casein, soy
Location: Oslo

PostPosted: Fri Aug 26, 2016 2:38 pm    Post subject: Reply with quote

Hi Mommablue and MaryA,

GI doctors are the same all over the world, it seems. Mine just gave me a tap on my shoulder while saying "And you can live with this disease, act and eat just as you have always done. Just take these pills, and everything will fall into place".

That is simply not true. Diet is everything, and it's hard in the beginning. But as you go along, you will end up stop feeling sorry for yourself and thinking that all those foods are "poison", which they are; in fact very few tolerate gluten and casein, but they just don't get as sick as we do.

So, my advice will be like the ones you have been given already; read, read and then read some more here at the board. And also, read Tex' book.

We know what struggles you have to endure, and we are here to help. It took me three years on a very restricted diet, but now it seems (knock on wood!) that I'm in remission. You can get there as well Very Happy

Lilja
_________________
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 4:09 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 Aug 26, 2016 2:49 pm    Post subject: Reply with quote

Hello Mary,

Welcome to our Internet family. GI specialists don't usually recommend diet changes because they don't have any training in dietary treatments. They are only trained to treat diseases by prescribing drugs, and when the drugs don't work, they don't have any solutions. Drugs can mask the symptoms of MC, but they cannot prevent the inflammation from being regenerated with every meal. The only way to stop the inflammation from being produced is to totally avoid all of the foods that cause our immune system to produce antibodies that provoke the inflammation. We are all different, so we each have to develop our own recovery diet that avoids all of the foods that cause us to react.

You can learn what you need here by reading, as Lilja suggested. A good place to start is at this link:

Guidelines for Recovery

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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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7192
User's local time:
2017 Nov 18 - 8:09 PM


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

PostPosted: Fri Aug 26, 2016 3:41 pm    Post subject: Reply with quote

Mary
welcome to the group

Lilja and Tex have given you the advice that I would suggest

have a read of the posts, and take your time to digest the information (pun intended)

hope this helps
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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MaryA

unknown IP

Joined: 25 Aug 2016

Posts: 6
User's local time:
2017 Nov 18 - 4:09 AM



Location: Little Rock, AR

PostPosted: Fri Aug 26, 2016 3:52 pm    Post subject: Reply with quote

Thanks so very much, Lilja and Tex,

I have just now ordered Tex's book. I am blown away by the knowledge you display in this group and in the excerpt of your book I read on Amazon, Tex. You don't mention any medical training, but it's obvious you have extensive knowledge and understanding of this condition. I have some medical knowledge, but I think I have lost much of it in the constant brain fog I've had. Now, I'm thinking that brain fog may be due in large part to the CC. Part of my motivation to study and follow the dietary suggestions here is definitely the hope of losing this feeling I have of never being able to think things through well.

I'll start on the Guidelines for Recovery section, as you suggest. And I'm sure I'll be "seeing" you both here soon and often.

Thanks again!
Mary Alice
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MaryA

unknown IP

Joined: 25 Aug 2016

Posts: 6
User's local time:
2017 Nov 18 - 4:09 AM



Location: Little Rock, AR

PostPosted: Fri Aug 26, 2016 3:56 pm    Post subject: Reply with quote

Yes, Gabes, that helps a lot! We have to use our humor - including your pun -- to keep a positive attitude, I think.

I absolutely LOVE how supportive this whole group is. Wow!

Thanks!
Mary A
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7192
User's local time:
2017 Nov 18 - 8:09 PM


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

PostPosted: Fri Aug 26, 2016 4:06 pm    Post subject: Reply with quote

Mary
we have a quite a few new people that have posted in the main message board section, reading the posts there and the replies etc will also help.

Also check out the connection post - i think you will like it.

take care
_________________
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: 30706
User's local time:
2017 Nov 18 - 4:09 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 Aug 26, 2016 4:37 pm    Post subject: Reply with quote

Mary Alice,

Yes, brain fog is one of the more frustrating clinical symptoms that are not usually considered by the medical community to be associated with the disease. The brain fog and extreme fatigue are typically the last symptoms to resolve. They seem to be associated with the neurological damage caused by undiagnosed (usually non-celiac) gluten sensitivity and the magnesium deficiency associated with all IBDs due to the malabsorption issues.

Thank you for the kind words. This is a very knowledgeable group and it probably won't take but a day or two of reading here before you will know a lot more about effectively treating this disease than your gastroenterologist will ever know. Many GI departments still insist that diet has nothing to do with MC. But this is analogous to claiming that breathing polluted air has nothing to do with respiratory diseases.

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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hollyweb
Gentoo Penguin
Gentoo Penguin
unknown IP

Joined: 01 Jul 2016

Posts: 288
User's local time:
2017 Nov 18 - 2:09 AM


Food Intolerances : Gluten, Corn, Rice, Oat, Dairy, Eggs, Soy, Potato (Nightshades), Almonds, Cashews, Nuts/Seeds, Chicken, Beef, Tuna, Pork, Coconut, Asparagus, Avocado, Fiber + Still Finding Out!
Location: Cameron Park, CA

PostPosted: Fri Aug 26, 2016 9:32 pm    Post subject: Reply with quote

I'd also like to extend a warm and supportive welcome to both Mommablue and Mary A! You are in the right place to find the answers you need, and among the people who can truly understand what you're going through as we've all been there / are there.

Quote:
The brain fog and extreme fatigue are typically the last symptoms to resolve. They seem to be associated with the neurological damage caused by undiagnosed (usually non-celiac) gluten sensitivity and the magnesium deficiency associated with all IBDs due to the malabsorption issues.

I can't thank you enough for this gem, Tex. It's very validating, and provides a realistic viewpoint of this extremely important part of the healing process. Making these "connections" (pun intended, Gabes! xo) from neurological symptoms/damage, to IBDs, to gluten sensitivity and magnesium/other deficiencies, just makes so much sense.

All those sayings such as "gut feeling"; "gut reaction", etc. are really true for how the body functions and the importance of the digestive system TO the body ... and it seems like modern medicine has forgotten this.

Wishing positive healing to all,
~ Holly
_________________
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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