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How to Explain....
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Sat Sep 30, 2017 12:33 pm    Post subject: How to Explain.... Reply with quote

Hi All -

Before I come to you all with another question, I have to say "thank-you". I check in regularly and am finding wonderful information on managing this disease. Equally helpful, though, is feeling as if I am not alone. I am continually amazed that such little interest is shown in the medical community beyond "it will come and go". I live outside of Boston - a true mecca for healthcare with many of the country's very best hospitals in reach. I was thinking that perhaps I should leave my current GI, who is quite nice but has not offered much beyond a prescription of Budesonide, and find a GI in Boston. I searched the website(s) of the major hospitals looking to find someone who specializes in MC and found that the disease is barely mentioned (if mentioned at all). No wonder there is so little known....

Which brings me to my question. I have gotten a few comments from well meaning friends and family along the lines of "you know, you can't believe everything you read on the Internet" when they hear a description of my diet. Last night, I walked with a neighbor, and I suspect more in the neighborhood will be hearing of what I have (including a lovely neighbor who has her doctorate in Nursing). I will be seeing more family in the next few months also as we get into the Holiday season. So....how have you explained what it is we have?

I know that the ones who truly love me will support me and the ones who don't, don't matter.... As always, I appreciate your input -

Love,
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:24 PM


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

PostPosted: Sat Sep 30, 2017 2:15 pm    Post subject: Reply with quote

Pam
some of my explainations that I have used over the past near 8 years.

-MC is like a combo of Crohns with Lupus (to explain whole body symptoms of pain, fatigue etc) avoiding food triggers, and other triggers is best way to minimise symptoms.

- for me, fibre, sugar, certain ingredients are like a poison. my immune system reacts strongly to those ingredients.
(if pressured I will ask them, would they knowingly consume poison knowing it would cause them major symptoms?)

- and like our acceptance process, don't allow the conversation to focus on what you CANT have. take it the direction of what you can have. healthy whole foods, instead of feeding your car shi* fuel and having lots of breakdowns with the car, you are using best fuel with minimal toxins.
Mention Dr Wahls protocol (she is a Dr that went from being wheelchair bound with MS, to riding bikes!) or Dave Asprey Bulletproof eating plan. (he cured himself of chronic fatigue etc) there is lots of science to support

ultimately - it is your body, your choice. if they are not being supportive then close down the conversation. you do not have to defend/explain your choices, your values etc.

hope this helps
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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 - 2:24 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: Sat Sep 30, 2017 2:38 pm    Post subject: Reply with quote

Hi Pam,

If someone uses a line such as "you know, you can't believe everything you read on the Internet" on me, I have to say that they are surely right. But the problem we are having to deal with is that you can't believe everything your doctor tells you, either. Especially about food sensitivities and microscopic colitis. Because they don't understand the disease at all. As for the question of, "How do you explain this disease to neighbors and friends?

For many of us, having MC is a lot like having the flu — permanently. If we can't figure out what is causing the inflammation, we tend to continue to react forever. Everyone understands what it's like to have the flu. And doctors can only offer short-term help with powerful and risky drugs. It's like an allergy, but it affects our digestive system instead of our respiratory system. The only way to stop the inflammation (which will stop the symptoms) is to totally avoid the foods or medications that are causing it.

Love,
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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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Sat Sep 30, 2017 3:01 pm    Post subject: Reply with quote

Dear Gabes and Tex,

Thank you for your input and suggestions. People generally mean well and I feel better prepared for conversations that will inevitably come up. I guess that I honestly don’t understand it either which makes it difficult. As for the ones who don’t truly mean well, I shouldn’t care what they say or think. I always have though which has possibly contributed to my issues.

I love your suggestions about turning the conversation to all I can eat. Keeping that perspective is everything. I also like the comparison to an allergy that affects my digestive system. I feel prepared ~ thank you.

I have my first pot of bone broth simmering in the crock pot 😊

Thank you again ~ sending healing thoughts to all.

Love,
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Gabes-Apg
Emperor Penguin
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Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:24 PM


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

PostPosted: Sat Sep 30, 2017 3:43 pm    Post subject: Reply with quote

another discussion point on this topic is that in quite a few countries in south pacific, Africa etc, populations have existed on 'limited' local ingredient eating plan for hundreds/thousands of years. still in current day they exist on 1-4 vegetables, 1-4 types of fruit, local protein sources.
these populations do not have health issues such as diabetes, IBD's, heart disease etc.

an eating plan on small amount of ingredients was the foundation of existence in the USA as recently as 50 -60 years ago.
it is not new or a fad.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Sat Sep 30, 2017 4:35 pm    Post subject: Reply with quote

That is really interesting, Gabes! I remember when I was growing up in the 1960’s, our meals were delicious but plain ~ no fancy sauces ~ baked/grilled meats and fish, potato or rice, steamed veggies. I don’t recall feeling bored with my choices.

Different subject ~ I loved your pics with the cars. What fun! It looked little me a great time 😊
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Gabes-Apg
Emperor Penguin
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Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:24 PM


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

PostPosted: Sat Sep 30, 2017 4:39 pm    Post subject: Reply with quote

that is how much 'marketing' has brainwashed society in the past 50 years, that you have to eat a different cuisine each night, be a chef in training etc.
being healthy is not about that.

I am about to upload a pic of me with the Pontiac firebird that I drove last weekend.. life is so busy through the week with the two part time jobs I don't get much time for photos/computers etc.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Martha
Rockhopper Penguin
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Joined: 08 Oct 2010

Posts: 1074
User's local time:
2017 Oct 22 - 2:24 AM


Food Intolerances : gluten, dairy, soy
Location: Dallas, Texas

PostPosted: Sat Sep 30, 2017 7:08 pm    Post subject: Reply with quote

Dear Pam,

Here is how I have explained MC: "I have an autoimmune disease kind of like celiac disease, but there are a lot more foods I can't eat. There's a medicine that can suppress the symptoms, but not cure the disease, but my copay costs more than my mortgage, so that's not a long-term option. I found a group of people online who talked about diet, and they weren't trying to sell me anything; just sharing their experiences, so decided what did I have to lose, and gave it a try. Changing my diet has really worked for me, and as long as I'm really careful about what I eat, I'm okay."

If they want more details, I am very willing to talk about chronic diarrhea, fatigue, brain fog, Enterolab, and details of what I can eat and what I can't.

If I'm staying with friends or family on a visit, I send an email telling what I can't eat, but then giving a long list of things that are okay. I tried to make it kind of humorous, and bring in how you might not think that certain things have gluten or dairy or soy, but there they are, hiding in the ingredients! I also tell them that I'm fine eating plain rice and boiled eggs, so as not to be too much of a burden.

Nobody has said anything to me about not believing everything you read on internet, but if they did, I'd just agree, and then say that I'm doing what works for me, and even though I can't eat like I used to, I'm sticking with it. My church is used to me bringing all my own food when we have get-togethers. I even bring my own food to grill if we're having a cookout. Usually precooked and in foil, so I can just heat it up and not get cross-contaminated on the grill.

My experience with people has been really good. I know some people get a lot of criticism from family members and friends. I am fortunate that that hasn't been true for me.

Martha
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Martha
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Sat Sep 30, 2017 9:31 pm    Post subject: Reply with quote

Thank you, Martha. Your explanation is very helpful as well as your suggestions when staying at friends/family member’s homes.

My son’s hockey schedule is underway and I’m starting to see people I haven’t seen since last season ~ pre-MC. The holidays are around the corner too and I feel much more prepared to speak about my weight loss and diet.

Love,
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Marcia K
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 03 Apr 2014

Posts: 864
User's local time:
2017 Oct 22 - 2:24 AM


Food Intolerances : gluten, dairy, tuna, chicken, oat, cashew, salmon
Location: PA

PostPosted: Sun Oct 01, 2017 11:51 am    Post subject: Reply with quote

Hi, Pam. I usually don't go into too much detail because unless you have this disease you really won't understand its limitations. People will start with "well, can you eat...." I take my own food wherever I go, that just makes life much more easy and I don't hurt anyone's feelings when I can't eat something that they prepared thinking I will be able to eat it. I really dislike when someone says that they feel sorry for me. As long as I'm alive and kicking and able to be with my family and friends I am fine. There are times when I just want to eat like everyone else, but compared to my friends who have M.S. and cancer I have nothing to complain about.
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Marcia
------------
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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skp
Adélie Penguin
Adélie Penguin
United States

Joined: 12 Jan 2017
Posts: 104
User's local time:
2017 Oct 22 - 2:24 AM


Food Intolerances : Gluten, dairy, eggs, soy. Diagnosed LC Jan, 2017. Chronic Hives ,an AI, Jan 2014
Location: North Carolina

PostPosted: Sun Oct 01, 2017 1:56 pm    Post subject: Reply with quote

I've boiled it down to, "It's a form of colitis. I have developed antibodies to certain foods which I avoid. I'm eating very healthy whole foods and feel really good about that. No more junk food that I used to eat." If they genuinely want to know more, I'm fine sharing with them.

When I have traveled to the home of friends, they have been terrific. I, too, send them a list of foods that I can't eat and they have gone out of their way to accommodate. I make it very clear that if they and others have food on the table that I can't eat, it's no big deal to me at all.

My biggest problem has been my bro-in-law who lives ten minutes away, is a real foodie, loves to cook. He has been on a low to no carb diet for years for his weight. But he has had a few dinner parties and when I get there, there are no appetizers I can eat and often few sides. I want to wring his neck, for he has known, or should know after eight months of my having MC what I can't eat. I used to take my sides to his house and think I will need to go back to that.

I'm fortunate that I can now eat a lot more fiber. Constipation has been more my norm for awhile, which I am handling with magnesium citrate or a Colace when needed. With MC, I know that I may certainly go back to D, so I take it a day at a time like all of us do.

Susan
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Sun Oct 01, 2017 5:49 pm    Post subject: Reply with quote

Thank you, Marcia and Susan! You are so right ~ unless you are living with MC, it’s hard to understand. A general explanation is probably best as it’s easier for someone to understand. I’m going to a retirement party in a few weeks and am planning on BYOD (Bring Your Own Dinner). And you are right~ there is much to be grateful for

Love,
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1930
User's local time:
2017 Oct 22 - 2:24 AM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Sun Oct 01, 2017 6:29 pm    Post subject: Reply with quote

I say as little as possible. Lately I'll say I have an IBD--like crohn's or ulcerative colitis.

I've found it is problematic to say I eat GF.

Friends buy junkie GF stuff for me for subsequent visits. Or they will say....so you can eat salads.

Really...the less said the better. I've been trapped listening to someone's garlic tolerance after I mention I eat GF or someone will say they eat Vegan (a choice). I don't feel like listening to it.

Always, always eat before events. I typcially bring my own food and say as little as possible.
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 22 - 3:24 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Mon Oct 02, 2017 3:48 am    Post subject: Reply with quote

Great advice, Brandy! You crack me up with having to listen to the garlic intolerance! Can you imagine ~ no garlic! The horror or it ~ LOL!!!

Love,
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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skp
Adélie Penguin
Adélie Penguin
United States

Joined: 12 Jan 2017
Posts: 104
User's local time:
2017 Oct 22 - 2:24 AM


Food Intolerances : Gluten, dairy, eggs, soy. Diagnosed LC Jan, 2017. Chronic Hives ,an AI, Jan 2014
Location: North Carolina

PostPosted: Mon Oct 02, 2017 7:37 am    Post subject: Reply with quote

Pam,
I am a huge Winnie the Pooh fan and in college, would hold Pooh-ins with readings from the book. I love your quote from Milne. The movie about Milne and his son is coming out sometime in the near future.

No doubt, if we MCers all got together, we could have a funny and eye-rolling discussion about all of the things that people have said to us. I can identify with the posts above and yes, also hate the "I feel so sorry for you," comments. It seems easier once your good friends and family get it (unlike my brother-in-law). Those are the people you hang out with most. And then you take travel and other food related events as they come, one at a time.

Susan
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