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Hannah
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Joined: Sat Apr 21, 2012 7:02 am

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Post by Hannah »

Hi all! This is the first time I have posted, although I have been reading your forum since I was diagnosed with LC over a year ago. Your thoughts on diet helped me more than the medications that I took to gain back some control over the awful bouts with D. I had already been gf for over 10 years (celiac), so it wasn't too hard to go sf and df.

As I felt better, I started to add back some of the fresh foods that I had not been eating with occasional bouts of D returning. I assumed this was a flare up of the LC. My doctor which I saw yesterday instead thinks that it is irritable bowel because I have some good days mixed in with the bad. I came home from the doctor with a prescription for Lomotil, a low-fodmap diet, and a truckload of confusion.

I do have Tex's book and that has helped immensely. So...am I dealing with the LC or IBS?

Thanks for your help and especially for allowing me to see some humor in some very humbling situations - Diane
jgivens
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Post by jgivens »

Hannah,
If you were diagnosed with LC, you have LC. Don't let anyone tell you differently--especially since you have celiac disease as well! My internist tells me he doesn't know anything about MC so I wish that he would not give me any advice regarding said disease, but he has to show something for billing purposes. Tex, and I am sure that he will chime in on this, believes (I think, rightly) that IBS is just a precursor for consequent IBD like MC.
I get through my CC with a variation of a lot of diets depending on my sensitivities.
I think Leah is probably the most patient person with the elimination diet and sometimes one is pushed to it, when all else fails. IMO, your doctor doesn't know what he is talking about and therefore, like mine, just spouts off tried and true stuff he has heard for diseases similar but other than what we have.
I think that we have been so brainwashed to think that the doctor surely knows what he/she is talking about that we have a hard time believing what we know about our own bodies. Who knows you better than YOU?
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
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Zizzle
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Post by Zizzle »

Hi Hannah,
I also have LC with a celiac gene (never got confirmation of celiac status...didn't need to!). I also get occasional bouts of D that are worse that my "normal." Other than poor food choices - too much fiber, possible cross-contamination, too much fructose and other sugars - your reactions might be related to mast cell activity. There is a lot of discussion about mast cells here, and I think they might explain some of these reactions. If I eat food with high histamine levels, I frequently get worse D (champagne, wine, dried fruits, many others). I did a trial of Claritin once, taking one Readitab a day, and I was amazed at how much the D improved. I don't have allergies other than nickel allergy, so it was surprising to see so much improvement from an antihistamine.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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tex
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Post by tex »

Hi Diane,

Welcome to our internet family. Yes, as Jane has correctly pointed out, there is no unique diagnostic test for "IBS". Instead, "IBS" is a default diagnosis that GI specialists choose to designate for patients when they (the GI docs) don't have the foggiest idea what's actually wrong with the patient. History shows that a diagnosis of "IBS" is virtually always either a misdiagnosis of an existing disease (usually an IBD), or the early (prediagnostic) stages of an IBD (and remember that celiac disease is also an IBD).

IOW, IBS actually exists only in the minds of GI specialists, due to their desire to save face — no doctor likes to have to admit that they don't have a clue about a patient's digestive system issues, especially in view of the fact that they have a certificate hanging on their office wall proclaiming them to be an expert on gastrointestinal diseases, and they are being paid for handing out "expert" medical advice.

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.
Hannah
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Joined: Sat Apr 21, 2012 7:02 am

Post by Hannah »

Thank you for your replies - will do some more reading about the mast cell issue. It's definitely encouraging to know there's a place where any question can be asked.
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Gabes-Apg
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Post by Gabes-Apg »

my theory is, whether you (or the doctor) call it MC, LC, IBS, IBD, or even call it fred - you have issues that is affecting your digestion, and in the case of histamine and mast cells, your whole body.
it is inflammation and if allowed to continue will cause damage to your gut that will get harder and harder to heal.

regardless of what you call it, in the case of all digestion issues, once you;
- remove the triggers that cause inflammation, (or take anithistamines to reduce block the reaction)
-focus on a eating and lifestyle plan (may or may no include medications) that allows your body to heal and have effective digstion process

you can be well.

keep in mind that triggers can be food based, environment based, stressed based etc
elements of the lifestyle plan can be what you eat and when. the type of exercise you do and when. your attitude, ability to embrace some changes, transformation, acceptance of the medical stuff that occurs etc etc

due to the medical system in our countries, most doctors are limited in their time and ability to support these needs to manage a condition like Fred (mc).
you can seek out functional medicine or natural therapy practitioners to help, this can be a bit expensive.
using the mass wealth of knowledge and support of this wonderful group of people, you can make informed decisions about your health management plan, you dont need your doctors permission - your health is your health!

my theory on mc is there is no right way or wrong way - there is your way.
what works for one may not work so well for another. get to know your body, your triggers, when you feel good and use that info to optimise your wellness!!
Gabes Ryan

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