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Pam V
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Post by Pam V »

Hi Al, My three children and husband, while supportive, are not ready to fully embrace no gluten, dairy, egg and soy. A few times a week, I will brown up a safe protein, like ground turkey, and make a pot of jasmine rice. I mix it together and freeze single serving sizes. We have some meals, like baked chicken, hamburgers, grilled meat; that we all eat together. On nights when they are having something I can’t eat, I can heat up one of my frozen meals. I’m very,very careful about cleaning, changing sponges, etc. to avoid cross contamination.

Good luck and wishing you all the best ~
Pam
Tor
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Post by Tor »

Have you had celiac disease ruled out, Al? MC is 50 times more prevalent in celiacs than in the general population. Celiac or not: Are you on a gluten free diet?

Do you take any medications or supplements? Have you tried quitting coffee for more than two weeks? What did the trick for me, was quitting gluten, coffee and diet coke/aspertame. Not one of them, but all of them at the same time. And not for a few days, but for a longer amount of time. All of these were in my daily diet in quite large amounts, so maybe you should have a look at some of your regular diet items.

And, yes, I recognize your psychological symptoms. They debuted with the diarrhea more than twenty years ago, but the most part of it slowly disappeared over a couple of years. I think the theory of the gut-brain axis is well etablished by now, and this book makes for an interesting read: https://www.amazon.com/Mind-Gut-Connect ... connection

— Tor
Life's hard and then you die
brandy
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Post by brandy »

Al, Tor is correct. A lot of prescription meds (for other conditions) will prevent remission.
Marcia K
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Post by Marcia K »

As Brandy said, it is a tough diet. My husband loves to eat dinner out and I don't like having to risk getting sick every time we eat out but I do it once a week for him and I am usually fine. On most days I feel better than the people I'm around who are eating "normal" diets so this diet does have its perks! Hang in there, I promise you it will get easier. I'll be taking my own dinner to my family's Christmas Eve gathering this evening and that doesn't bother me one bit. Some days when I'm rushing I'd like to be able to go somewhere without having to prepare my own food first but it is what it is.
Marcia
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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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carolm
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Post by carolm »

Hi Al,
I’m sorry you had to find us, but you’ve come to the right place. When I had the big flare that led to my diagnosis, I had to severely limit my diet- not only free of gluten, dairy and soy, but also had to be low fat, low or no sugar, no acid and no caffeine. I dropped 25 pounds in ten weeks just laying around and clearly wasn’t absorbing any nutrients. My diet was baked chicken, white rice, red potatoes, carrots and green beans. After a few months I added ground beef and I just kept rotating those foods around. I took Entocort for 5 months which certainly helped with inflammation and bought me time to get my diet in order so I didn’t relapse when I discontinued it. My GI doc’s were impressed I didn’t relapse. I did find that once off of Entocort I reacted to eggs so I eliminated those too. It took me 2 1/2 years to get into remission, and I have biopsies to substantiate that. Now I only have to avoid gluten, soy and dairy, and have been in remission for 3 years.

You mentioned anxiety and I wanted to speak to that. As a licensed psychologist with a 35 year career in both hospital and school settings I found myself keenly aware of this facet of MC. I was always the calm, clear thinking team member that everyone looked to to be the voice of reason, no matter how stressful the situation. Then BAM! I’m hit with LC and confronting anxiety. Initially I chalked my anxiety up to the impact of suddenly being sidelined with a chronic illness that threatened to rob the quality from my life. Over time I began to recognize a physical sensation in my gut, that would then trigger generalized anxiety for me. Once I could separate that ‘gut’ sensation I realized I didn’t need to automatically react to it and that much of my anxiety could be minimized by me not giving it power. (I also started meditation to increase my awareness and practice being calm). I read up on the brain-gut connection and after reading that 70% of the body’s serotonin is made in the gut, I felt that explained the brain fog we feel when inflamed, and certainly could contribute to the depression and anxiety that most of us encountered. So I think it’s two-fold: the sudden life change but also the altered chemistry. The longer I am in remission and resuming normal activities then less powerful the anxiety is. But it’s very much a feature of this disease. I can now recognize it as a fleeting sensation, but early on it can be overwhelming.

Kind regards-
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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