New to the group ..well acustom to the pain

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fillard1
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New to the group ..well acustom to the pain

Post by fillard1 »

Hey yall

I have been dealing with this for 7 months now and after a ton of med's and diet changes i still am in pain 90% of the time....

it's now to the point that I almost hate to eat because all it does is bring on the pain! Being a Chef for the last 32 years .....my one true lifes passion has been taken away from this horrable condition. I have not been able to work for 6 months and the joy of food had beed replaiced to the dread of it!

I am looking forward to reading about what others have tryed....between the cramps and bleeding hemroids I will do just about anything for ONE PAIN FREE DAY!!!
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Zizzle
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Post by Zizzle »

Welcome!
I'm sorry to hear you are in so much pain! As a chef you could probably teach us a thing or two about gluten free/dairy free dining. Many here are also sensitive to soy and other foods. I developed a love-hate relationship with food. I couldn't understand why virtually EVERYTHING made me feel sick. It started out as MSG, spicy food, lactose, fat, alcohol...then the list got so long I just couldn't stand it. It wasn't until I tried the gluten-free diet that I realized all those things were not my problem. It was the ingredient I least suspected!! I am grateful that I can now enjoy some of the foods that once made me sick, albeit in moderation.

Have you been diagnosed with LC or CC or something else?
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tex
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Post by tex »

Hi Fillard,

Welcome to our internet family. The situation may look bleak from where you are situated now, but trust me - you can get your life back. Not only that, but as a chef, you are better qualified than most of us to make sure that you don't slip up on any ingredients. Diet is indeed the key, to remission. Certain drugs can help to mask the symptoms of MC, but only avoiding your food sensitivities can prevent the inflammation that causes the symptoms in the first place.

Be aware that it takes a while to get gluten antibodies out of your system - they have a very long "half-life". Consequently, it usually takes from roughly 6 months to a year, for the antibody production to die down sufficiently, so that your level is below the threshold that will trigger a reaction. The other antibody responses, (such as casein, soy, etc., if you are sensitive to them), decay much faster, though they can be just as damaging as gluten, if you happen to be sensitive to them. Almost all of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Some of us are also sensitive to eggs, soy, yeast, etc, but virtually all of us have to avoid raw fruits and vegetables, (except for maybe bananas), until after our gut heals. Any veggies have to be "overcooked", to keep them from irritating the gut. Also, unlike IBS, fiber is contraindicated for MC, as it irritates the gut, and will prevent healing, so we have to minimize fiber until the gut has sufficient time to heal. Raw lettuce is probably the worst example of irritating fiber, as it affects most of our intestines about the same way that waving a red flag in front of an enraged bull will affect the bull - it makes them "charge". :lol:

Unfortunately, cramps and irate 'rhoids are practically de rigueur with this disease. They will begin to fade away, though, as your D begins to subside. Again, welcome aboard, and please feel free to ask anything.

Tex
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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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randyh
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Post by randyh »

Welcome to the board, and sorry about your condition, it is really life changing.

Everyone here understands what your going through and are they willing to help.

There is a wealth of information consolidated here that can get you on path to healing and the pain free days you long for. It seems that many doctors really don't understand this disease.

I was diagnosed about 7 years ago, not really having much problem until recently.

I have taken the advice from the great folks here, have been on a gluten free diet for about three weeks and some good things have already started to take place an change. I was at the same point you are at and really couldn't figure it out until I found this board and the wonderful people here.

The information to heal is here, take the time to search it out, ask lots of questions, and a little a time you will find your way back.
takef586
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Post by takef586 »

Hi,
If you have D, then you most likely have a strong sensitivity to one of the principal offending foods, like gluten or casein, if you do not have D, then it could be sensitivity to yeast or something else yet. You should do the complete Entero Lab test to check on your senitivities and genetics, to get a better grasp on the roots of your problem.
As to the pain, in my case, the main cause seems to be ingestion of fiber or irritating foods ( alcohol, coffee). If you want to eliminate the pain as soon as possible by diet alone, then you should do a low residue, ipoallergenic diet. In my case it consists of:

breakfast
-millet or rice flakes boiled in water with a sliced banana - once ready I add some extra virgin olive oil

lunch or dinner

- boiled (sufficiently long) white rice ( no brown, integral or semi integral) or decorticated buckwheat kasha,
salmon (fried in its own fat or steamed), other fish if available (salmon is particularly indicated), any other meat you like - i also eat eggs, as they do not give me problems
I eat daily a home made broth, which I boil for 10-12 hours once a week, divide into portions and freeze - I put there lots of chicken legs, beef tail, vegetables, laurel and thyme. Then I throw away the bones and most vegetables - I eat only the meat and carrots - remember to avoid vegetables that cause gas.
I always season the rice with olive oil too

Ipoallergenic diet, means no gluten, no casein no lactose, no sugar, no yeast, no soy, no alcohol, no coffee, and better to avoid tunafish. Some seashells and nuts can be a problem too, in particular the peanuts. Nuts should be avoided initially because of the fiber content anyway.

You should ask your doctor if you can take entocort - it could help suppressing the inflammation, but if you do not do the diet as well, the symptoms will most likely return.

Good luck
Marek
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mbeezie
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Post by mbeezie »

Hey Fillard,

I know how you feel. I am a dietitian and was a real foodie before I got sick (almost went to culinary school). I went through a period of grieving while I was healing and on such a restricted diet. I've now settled in and enjoy creating new recipes. I avoid grains (paleo diet) but there are endless ways to prepare meat, seafood, fruits and vegetables. Once you heal a bit you will be able to eat more foods with fiber but for now gluten (dairy and soy too) and fiber are best to avoid.

Welcome aboard. I encourage you to browse through old threads - lots of useful info here.

Take care,

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
IDreamInColor
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Post by IDreamInColor »

I completely understand, I was a wedding cake designer for 20 years. I worked out of a small humble bakery my hubby built for me in the basement of our home. I LOVED to bake. And the holidays...oh my...I baked enough to hand out to all my neighbors, and they looked forward to it. Now, everything has to change. All my food related holidays traditions out the window.
But I agree with the others, you have a great advantage with being a chef, I bet you can concoct all kinds of tasty gluten free foods.
I'm so sorry you are in pain, it really gets frustrating some times. I hope you can find a way to feel better. What kind of treatment plan does your doc have you on?
grannyh
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Post by grannyh »

Welcome! There is lots of help and encouragement here. As you read through the site you will see that there is NO ONE magic path that works for everyone.

The good news is... with diligence and patience... you will eventually find your way back to dry pharts and formed poops:)

Don't worry if you lack patience... as an added bonus.. this disease often forces you to become more patient about not just the disease but everything else in your life:)
grannyh
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tex
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Post by tex »

GrannyH wrote:Don't worry if you lack patience... as an added bonus.. this disease often forces you to become more patient about not just the disease but everything else in your life:)
grannyh
I love your sense of humor, and your ability to see the "silver linings" in living with this disease. :lol:

Tex
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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.
grannyh
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Post by grannyh »

Thank you, Tex!

My goal was to get rid of the diapers not to obtain patience... but I got both anyway..LOL
grannyh
ant
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Post by ant »

Dear Fillard,

Welcome from Hong Kong. I hope the pain soon stops.

Wishing you all the best in your journey to remission, ant

P.S. It is a strange thing, but having MC has made me take up cooking.
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MBombardier
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Post by MBombardier »

Welcome, Fillard1!! You have come to the right place!!

Ant, my experience is similar. My mother was a gourmet cook, but the culinary desire and creativity skipped me and went to the next generation. I can make a decent meal, but... why do people have to have one every few hours?

However, I have just begun investigating GF/LF/SF meals that my family will enjoy, too. It's encouraging to know (for example) that the alternative flours are more nutritious than wheat in many cases.

And Grannyh, I, too, love what you said about patience!
Marliss Bombardier

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Linda in BC
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Post by Linda in BC »

I can make a decent meal, but... why do people have to have one every few hours?
LOL Marliss! My sentiments exactly :lol:

Dear Fillard:

:welcome: to the board. I am sorry you had to find us, and sorry to hear that you are in pain all the time. I wish relief for you, and I do believe that you will find something on here, amongst our diverse collective experiences and wisdom, that will work for you, too. You will get your life back, it just may look a bit different than it did before MC.

What meds have you tried? Has your doctor prescribed Entocort for you?

Linda
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