new....

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

bren711
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new....

Post by bren711 »

Hello, I am a new member, and Im so glad I found this site. I have been sick since Thanksgiving night, long story short and 13lbs lighter and 6 weeks later, I have microscopic colitis! my doc said pepto 3x a day and problem should resolve in 2 weeks. (it hasnt) its on and off. a lot of flare ups though, and massive bad cramping..I hate the cramping. I have pretty much gotten off all my foods like milk, cheese, etc..no junk food, pretty much just eating Chicken and my cereal in the morning, (honey bunches of oats, maybe not a good idea?)
anyway, I did not test positive for celiac disease, but Im starting to wonder what foods I can eat..
any help would be appreciated as im still losing weight, (down to 125) and still have cramps, etc...
thanks! :grin:
JLH
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Welcome

Post by JLH »

:welcome: bren. We are so happy you found us, too.

Most of us haven't tested positive for Celiac Disease either, but some have. Most of us DO have gluten sensitivity, though.

As soon as I found this site, I went totally gluten free (GF) and it helped perfectly for about 2 months until soy sensitivity raised its ugly head. In fact, when I went to send my stool sample to www.enterolab.com I had to eat prunes and drink prune juice!

Do you have a dx of MC?

Read here and at EnteroLab site. I know it's all very daunting but as our guru Tex says, "You can get your life back."

I know Tex will be here soon to greet you. He knows more than most doctors, believe me.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Dee
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Post by Dee »

Hi Bren! :wave:
Glad to see that you have found our online family!
Your story sounds so familiar to alot of us. I can relate to the weight loss issue. Like my PCP always told me, even if your running to the bathroom, you have to still eat!!
There are things that you can eat, and since you've just recently been diagnosed, try not to let that become overwhelming to you.
Plain boneless, skinless chicken breast, lightly seasoned, rice, potatoes, cream of rice or buckwheat cereal, DF milks, like rice, almond, hempseed. Applesauce or canned fruits in their own syrup. Veggies, well cooked.
We all seem to have a problem with fresh vegetables and lettuce when first starting out.
I'm on my way out the door or I'd add more.
I'm sure there will be other members who will come along today to give you a welcome and more ideas on what you can eat.
Hang in there because there is a wealth of information here and very helpful members that'll jump in and get you started on the road to better health.

Dee~~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
bren711
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Post by bren711 »

Thanks JHL..I do appreciate it. the pepto has helped a little, but I gave in the other night and had chinese food...oh boy did I pay the next day! BUT boy, I did enjoy it all, and the sad thing is it was nothing fried, just a lot of healthy veggies! I paid for 2 days..
is it normal to have a bad couple days of "D" and then nothing the next day, then pretty much start over again?
bren711
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Post by bren711 »

Thanks Dee
I got off milk completely ..for some strange reason this came out of no where, and now I cant even tolerate dairy..
It came on so fast that I thought I had the flu....haha
JLH
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Post by JLH »

The gluten or soy in the Chinese food is my guess.....

Dee is our fantastic chef and she has lots of GF recipes for us.

You may want to have a GF cereal or something else for breakfast, by the way, and see if that helps.

You won't particuarly like a GF diet but you won't be sick all the time. Your choice. :twisted:
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
JLH
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Post by JLH »

The top three sensitivities by our PP family are: gluten, dairy and soy. There are people like Tex with "only"gluten and it goes up from there....
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
JLH
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Post by JLH »

Sorry, I see you have your MC dx. You were pretty speedy on that. Good for you and your doc.

I'll let Tex tell you about your doctor's statements.

My humble opinion is :BSFlag: (I do like to raise that flag.)
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
bren711
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Post by bren711 »

sorry I dont know what MC DX is??
JLH
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Post by JLH »

Microscopic colitis diagnosis.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
bren711
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Post by bren711 »

ohhh makes sense...sorry!
it took over 7 weeks to find out....as you all know it wasnt pleasant..$8,000 later of test, and yay..finally a smart DR!
JLH
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Post by JLH »

That is really a short time to me. Mine was months and months and months until I finally called the GI's office and said I was going to become a recluse.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Jan
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Post by Jan »

Dear Bren,

Welcome to our little family. We all have gone where you are right now. One of the things that caught my eye when I looked at what you were eating is the oats. I don't have problems with wheat but sure do with oats. I had a flare up at New Years because I ate some trail mix that had Cherrios in it. They are oat based. I was quickly able to get back on track with some immodium.

I would suggest you keep a food diary. It will help you figure out what is causing you problems now. Realize that as your gut heals you might be able to add fruits and veggie back in. I still have to eat mine cooked very soft. I also have problems with fiber and foods that have a lot of fiber in them (like sweet potatoes).

I don't know what your GI told you, but there is not true "healing". We can all achieve remission but are susceptible to flare ups. That is one of the things that makes this such a frustrating disease.

You might also want to post a message on the Main Message board. You will get an even bigger welcome there and a lot more input.

Good luck on this journey.

Jan
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Post by G'ma Mary »

Welcome, Bren;

I well remember how bad it was prior to diagnosis, but you can thank your GI doc that he/she found this so quickly. I was sick (severe cramping and explosive diarrhea without warning 15 to 20 times a day) for 6 MONTHS before I got a diagnosis. I had told my GI I was tired of being sick and told him I wanted either a diagnosis or a referral to someone who could figure this out! That was when he did a colonoscopy and called me 2 days later to tell me I had Microscopic Colitis (MC) and that there was no cure and I would "learn to live with it"!!! :???: I went online that day and found the support group that preceeded this one. That was 7 years ago, and I am now completely symptom free and control it only with the Gluten Free (GF) diet!

A decision to go GF is a major life change, and the process is extremely difficult (steep learning curve). Each of us who is on this diet approaches it differently and feels different (in terms of attitude) on it. I made a conscious decision to see this as a challenge (somewhat easy for me, since I love to cook!). I also have a great advantage as I live alone and my entire house is GF! I don't have to worry about cross-contamination or temptation with foods that I can't have - at least at home! I eat literally everything - but I make it all. I have, over the years, learned how to eat out a restaurants and at other people's homes. I even eat at a pot-luck almost every week in the neighborhood where I live! (That has been one of my biggest challenges, but now works easily!)

There are also medications available other than Pepto which help many people here. Others who are on them or used them short-term can tell you more there. Regarding the Pepto, that treatment was recommended by Dr. Fine (who is a researcher working full time on MC, and himself has MC), but he no longer recommends that. It will NOT cure MC, and can only be taken short term as it can be toxic if continued beyond 8 weeks.

That was a lot to dump on you right now - I apologize! Once again, welcome! Keep reading what others have to say here, and feel free to ask any questions that you have. We've all been where you are and we all want you better soon! No question is too simple or too embarassing for us!

Blessings to you;
G'ma Mary
Those who are not part of the solution, are part of the problem.
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tex
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Post by tex »

Hi Bren,

Welcome to our online family. You've already received so much good information that I don't have much to add, at this point. Your pattern of reactions pretty well matches mine. While most members here seem to have D every day, many times per day, when they are reacting, I would usually only have 6 to 8 episodes per day, for several days, and then I would have several good days - maybe a week, sometimes, followed by 2 or 3 days of nausea, and then several days of D, etc.

I'm not sure, but Jan and I may be the only ones here who are intolerant of oats. There are no medical tests available, by the way, to detect an intolerance to oats. That has to be determined by trial and error. IOW, Not everyone who is gluten-sensitive, is also avenin-sensitive, (avenin is the the prolamin protein in oats, that is the equivalent of gluten in wheat). You will note that both Jan and I have oats, (avenin), listed as an intolerance under our avatars. If you do a search of the archives, you can find topics describing a series of tests that I did a couple of years ago, to verify that I am sensitive to oats. If you should want to read about it, and can't find it, please let me know, and I'll look them up and post the links.

As Joan mentioned, your reaction to the Chinese food suggests that you might be sensitive to soy, (and possibly, gluten, of course).

The Honey Bunches of Oats cereal has several strikes against it. First, it contains hordein, the prolamin in barley, that is the equivalent of gluten in wheat, and second, it may contain gluten, since many sources of oats are cross-contaminated with wheat, and third, you may be intolerant of oats, though oat-intolerance is not nearly as common as gluten intolerance. Most mainstream commercial breakfast cereals contain some form of malt, or a malted product. If it turns out that you are gluten-sensitive, (and most of us are, of course), then you will have to avoid all products that contain any malted ingredients.

A much better cereal choice is Rice Chex. Last year, General Mills decided to do celiacs a favor, and they reformulated Rice Chex so that it is now gluten-free, and it still tastes just as good as it ever did. Of course, you can go to a health food store, (HF store), and find various types of gluten-free, (malt-free), cereals, such as corn flakes, quinoa, (pronounced "keen-wa"), buckwheat cereals, etc., but they will cost several times as much as the mainstream cereals, such as Rice Chex. Also, even in the HF stores, you have to read labels carefully, because they also sell many cereals that are not GF. Incidentally, FYI, buckwheat is not a member of the wheat family, so it's safe for all of us to eat. It's a paleo food, so no one is intolerant of it.

If you are interested in locating some good, gourmet quality GF, DF, (Dairy-Free), SF, (Soy-Free), recipes, Dee has hundreds of them posted here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

You mentioned that you thought at first, that you had the flu. Unlike you, mine came on slowly, I would get sick as as dog, and then I would be OK for two or three weeks. Believe it or not, for over a year, I really thought that I was having relapses of the flu, or food poisoning. :lol: :lol: One day, though, the D started, and wouldn't stop, and that's when it dawned on me that something else was going on. :roll:

Sorry, didn't mean to write a book. As others have mentioned, whenever you have a question, or you are in doubt about anything, please don't hesitate to ask.

Again, welcome aboard,

Tex (Wayne)
: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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