How many years have people had this disease?

sarkin · Post by **sarkin** » Mon Oct 03, 2011 4:07 pm

Tex,

Maybe search engines were also worse back then - I don't remember finding this site. (In a crazy way, maybe if I had been unlucky enough that my symptoms laster longer, I would have been lucky enough to encounter Sally & so many others here years sooner, and I'd be a whole decade healthier!)

Glad to be here now, that's for sure!

Love,

Sara

Linda in BC · Post by **Linda in BC** » Mon Oct 03, 2011 10:01 pm

I was diagnosed 1997 or early 1998. And was not offered anything in the way of treatment except Asacol , which didn't work for me, just made me worse. Was just left to my own devices for the next 7 years. At that point I figured out on my own that I was intolerant of casein, which brought some improvement, but it was not until 6 years or so later, when I found this site (April 2010) and cut out gluten, too (June 2010), that I really started to have a semi normal life. A couple of months ago, thru muscle testing, I was informed of another 12 foods I should not eat, and since avoiding them, I am almost in remission using only diet. I used Entocort for about 6 months, and belive that reducing the inflammation with it significantly increased my ability to now be able to control symptoms with diet alone. I could not have done it without the entocort, I think, or at least it would have taken much, much (many years) longer.

This site and the great advice I received here saved my sanity and gave me my life back . I thank you all again, for that priceless gift.

Love
Linda

draperygoddess · Post by **draperygoddess** » Tue Oct 04, 2011 8:18 am

Technically, I have not been officially diagnosed, even though my pathology report clearly shows LC, because the doctor diagnosed me with internal hemorrhoids. I can remember some symptoms going back as far as age 13--abdominal cramps, alternating constipation and D--but my symptoms got gradually worse over the past 5 years (I'm 40 now). I routinely get gas, bloating, pain and cramps, and D, along with occasional nausea. If it weren't for this forum, I would still have no idea what I have or how to treat it. The Potty People are truly a blessing!

Cynthia

Kari · Post by **Kari** » Tue Oct 04, 2011 6:36 pm

Even though it wasn't diagnosed at the time, I believe I've had MC since my early 20's. I had a horrible bout of WD with stomach cramping, and it lasted a couple of months. Then, I believe it went into "spontaneous remission", until it popped up again about 11 years ago. I was formally diagnosed about 9 years ago when I had my first colonoscopy.

I did experience a lot of bad gas during the 1990's before the onset of explosive, WD, which has been my primary symptom. Other symptoms are brain fog, general fatigue and nausea.

I found out about the diet connection through Enterolab last July, and subsequently found this forum. I was finally able to get some symptoms relief by completely eliminating gluten, dairy, yeast and a host of other things. The only meds I have taken are pepto and imodium.

Love,
Kari

MBombardier · Post by **MBombardier** » Tue Oct 04, 2011 10:29 pm

Wow, Tex--I didn't realize that Gore had invented the internet so long ago.

motsy · Post by **motsy** » Wed Oct 05, 2011 4:05 am

Mbombardier, your experience was similar to mine. I remember having symptoms going back to about 2005, but just adapted and didn't talk to any doc about it. I have always been very private about bathroom issues, so I don't really think I realized how abnormal my symptoms were. I was a little overdue for a colonoscopy and decided to go because my symptoms were getting worse this past summer. My doc graduated from med school in 77 so MC was a hot topic when he was new to his practice. His initial reaction when I described my symptoms was that it must be MC & biopsies verified the diagnosis. I was also a "colicky" baby, so may have had some gastro issues then, as well...

CAMary · Post by **CAMary** » Wed Oct 05, 2011 10:32 pm

DX 9/2000. I think Maggie and I met on Sally's board around the same time...I have been basically asymptomatic since mid-2002 with dietary changes (tried meds first which helped me, as well)
Mary

MaggieRedwings · Post by **MaggieRedwings** » Thu Oct 06, 2011 5:16 am

Hi CA Mary,

You got it right and a wonderful meeting it was under such circumstances. Sally was truly a pioneer. We also had Barbara and Polly at that time and a few others - 2 which I care not to mention.

Then we were so fortunate to have Tex take over when Sally could just no longer handle the board for us. It has been a long road but have gained such a great family from it. The best part of CC for me.

Love, Maggie

Post by **tex** » Thu Oct 06, 2011 8:26 am

Maggie,

I'm sure you remember how those two members, (whom you declined to mention), were always kind enough to serve as controls, whenever we were doing any dietary treatment trials.

They were always ready and willing to sacrifice their own health in a futile attempt to prove that gluten has nothing to do with MC.

Love,
Tex

MaggieRedwings · Post by **MaggieRedwings** » Thu Oct 06, 2011 10:08 am

Oh Tex!

I remember that well and then they set up their own short-lived forum where there mantra was to tell everyone to eat bread, pizza, pasta, etc. Guess eating that must have done them in because alone they had about 15 to 20 members and lasted such a short time. I also remember how horrendous their other medical problems were. Worse than anyone could bear.

Love, Maggie

Sheila · Post by **Sheila** » Thu Oct 06, 2011 6:53 pm

My mother had severe diarrhea years ago and we couldn't get a diagnosis for her. I found Judy Malinowski on line. She was a life saver. My mother did the 8 week Pepto "cure" and that helped for a while. With Judy's advice, my Mom went to her GI doc and he did the biopsies and put her on Entocort. She had the Entero lab testing done but she did not change her diet. After stopping the entocort she had chronic D up until her death at 92 last year.

I had IBS for years, from childhood. 2 1/2 years ago I got sick from an antibiotic, horrible D for weeks. It subsided but never went away completely. Last December it came back with a vengeance. I was on the pot half the night for weeks, would fall asleep there. I was diagnosed in March with CC, did the Entero Lab and found out I have celiac genes as well as intolerances to gluten, soy, dairy, eggs. Am totally GF and off soy as of last week. I bake with eggs and still get away with a melted Swiss cheese sandwich now and then. I'm waiting for the shoe to drop on those two. I am taking one entocort a day and that has kept the D under control. There are still days of gas and discomfort, probably due to the little bit of dairy I ingest. I really, really miss ice cream. Apparently there is no ice cream that doesn't have at least one of the forbidden foods in it. Except perhaps Hemp and that tastes horrible.

Sheila

sarkin · Post by **sarkin** » Thu Oct 06, 2011 9:58 pm

Sheila,

There are a couple of brands of coconut ice 'cream' that are really good! One is So Delicious (and the other one, which I just ate - I can't remember the brand, I'm sorry! and we have taken the trash out). The coconut has a naturally creamy quality that doesn't feel fake to me.

(My husband thinks the coconut versions also hold up better in the freezer - you don't get those crystals forming, if you leave it in the freezer a few days, the way dairy products do.)

They do have something like guar gum, which isn't right for everyone - but no gluten, no soy, no dairy, no eggs.

--Sara

MBombardier · Post by **MBombardier** » Thu Oct 06, 2011 10:26 pm

Sheila, we make our own coconut milk ice cream. The recipe is really easy--two cans coconut milk, 2/3 cup cocoa powder, 6 tablespoons agave, and 1 tsp vanilla extract. I don't like agave syrup, so I use a cup of sugar instead. I am going to experiment with stevia. And of course, the coconut milk has guar gum, but I seem to do fine with it.

I've been thinking about dropping a scoop of this ice cream in a glass of club soda...

mbeezie · Post by **mbeezie** » Fri Oct 07, 2011 6:11 am

My favorite coconut milk ice cream is Nada Moo. It's out of Austin TX and I'm not sure how far the distribution goes, but it is the absolute best. Well, I take that back . . . . I really like my own homemade ice cream the best. I made some salted caramel coconut milk ice cream over the summer that was amazing. It had eggs but you can make any ice cream without eggs - plenty of fat in coconut milk to make it creamy.

Mary Beth

Sheila · Post by **Sheila** » Fri Oct 07, 2011 10:59 am

Thank you for all the input. The last time I tried SO coconut ice cream I was sick afterward. I don't remember what flavor I had, but the mint chocolate chip does have soy lecithin. I bought the chocolate today and will try it tomorrow when I don't have to worry about a negative reaction. I think I would definitely make my own to avoid the guar gum because I think that may also be a problem for me. Thank you so much, Marliss for the recipe. I don't care for the taste of agave either and would go for the sugar or Stevia. I'm already thinking about all the goodies I could add to it: chocolate chips, nuts, etc.

I've lost weight since I gave up ice cream which gives you an idea how much of it I was eating. It has been pretty stressful at my house the past 2+ months with DH having a serious Moh's surgery, skin graft and subsequent infection. He is finishing up 2 weeks of IV antibiotics given every 8 hours. (by me) He is finally feeling better, the graft has finally taken although he looks like he went 10 rounds with Sonny Liston. Once the antibiotics are done we are hoping to go to North Carolina and relax with friends.
We just bought a refrigerated cooler to take with us so I can bring my food and not worry about starving or driving my hostess to drink trying to feed me.
Thanks again for all of the input.
Sheila