Newb. with new diagnoses of MC.

[AnemoneGirl]

Hi there-
I've been a member of this board since Feb 15th but I didn't want to post because I didn't have a diagnosis- yet. After 9 months of running to the bathroom though, I had a feeling I was dealing with MC. And, yep, I got my diagnosis today. My Dr. told me that I have *both* Collagenous and Lymphocytic Colitis and put me on Pepto Bismol 8 times a day for two months. *sigh*. I'm disappointed because I wanted to go straight to the Entocort and be well. Hmmm, we'll see.

My story started nine months ago after an innocent salad. Since then I've had D five to ten times per day and night. And there have been accidents :-(. And my stomach rumbles all the time. I've had to limit my activity to things within bathroom's reach. What a nightmare! I'm sure many of you can relate.

At first I thought I might have Celiac Disease so I cut out all gluten and that didn't help at all with the D, though it did help with my joint aches and over all puffiness. I tried Imodium AD with no success and Lomotil with very little success.

Then I found this board and a light bulb went on! You guys were speaking my language! All of your symptoms matched mine- even down to testing positive for *gluten sensitivity* on my Enterolab stool test. I do not test positive for Celiac Disease, just positive for gluten sensitivity.

So, since reading about all of your experiences, I have decided to cut to the chase and go on the Paleolithic diet. Two weeks ago I eliminated all grains, legumes and dairy and nightshades from my diet. My body feels better, eyes clearer, body not as puffy, etc., but I still have the D. :-( I'm not going to go back to eating the other way though- not yet anyway. For one, it's still too soon to know whether it's working. And second, it feels really good to eat like this!

That's my story. Thanks for all of your informative posts. I never would have gotten this diagnosis if it weren't for you guys. Because of what I've learned here, I stopped the Gastro Dr. before he did the colonoscopy and specifically told him to look for Microscopic Colitis. He only had on his chart to look for Celiac. He looked at me funny- but did what I said, thank goodness! Yay!

Thanks again,
Ann

[Gloria]

WELCOME ANN!!

I'm impressed that you diagnosed your MC before your GI did! And also that you've already adopted the Paleolithic diet. It's great that you're feeling better, but discouraging that the D hasn't subsided. It can take time for your gut to heal.

I'm curious to know if you are doing the Pepto-Bismol routine. For a small percentage of people, it can make their D even worse. I know, because it made mine worse both times I tried it.

I'm sure others here will be along to welcome you and share their experiences. In the meantime, reading the postings will give you a lot of information and let you know that you are not alone. Please don't be afraid to ask any questions - that's why we're here. There's usually someone here who's been through the same experience.

Gloria

[JLH]

Ann, we're so glad you found us. You've done great so far, good for you. WTG, with your GI.

Have you eliminated soy? It was the last piece of my puzzle (I hope).
Check your meds and vitamins for soy, gluten and dairy.....

[Bifcus16]

Welcome Ann,

You might want to think about doing a parasitic cleanse as well. If a salad triggered it for you, it may well have contained cryptosporidium or some similar nasty. Products based on Pau D'arco or Wormwood would be likely to work. I have had good result from one called Paracea.

These do have a reputation for causing D on the first day, but I never experienced that effect. You can start with smaller dose to see how it goes then go up on the second day.

Getting a probiotic in there is also likely to help. Your gut flora may well be out of balance.

You have found a great bunch of people for support, as well as ideas on dealing with your condition. Do feel welcome to join in discussions on any topic.

Lyn

[tex]

Hi Ann,

Welcome to our internet family. Congratulations on taking such a proactive position on your health.

If you have the markers of both LC and CC, the correct term is simply MC. Your doctor may not realize that. Also, all CC patients have a certain amount of increased lymphocytic infiltration, in addition to the thickened collagen layers, but if the count is high enough to warrant a diagnosis of LC, then most authorities simply refer to the combination of diagnostic markers as MC.

Typically, it takes approximately 6 months or so, to achieve remission on the diet, though some see results sooner than that, and some of us take as long as a year or more. The length of time seems to be related to the amount of damage that has accrued to the gut, (which must heal, of course), but there is no reliable way to predict how long it will take, because we are all different, and we respond differently to diets and meds.

If you are not intolerant of, or allergic to the Pepto Bismol, then it should allow you to achieve remission before the 8-week treatment period is over, and if luck is on your side, the diet should carry you from that point on. Please don't be tempted to continue to take the Pepto past the 8-week point, though, because bismuth is a heavy metal, and a toxic buildup will eventually occur, if you take much more of it.

Lyn could certainly have a valid point, if your MC started with a salad. That's a rather uncommon triggering event, based on the experiences of our accumulated membership. Pepto Bismol does have a certain amount of antibiotic effect, however, so it might possibly provide some benefit, if a parasite is present. If, however, you are still experiencing D at the end of 8 weeks, you may indeed need to address a possible parasite issue.

If you're going to do the paleo diet, then you shouldn't have to worry about additional intolerances, because the paleo diet eliminates just about all but the rarest of intolerances. If you do it right, IOW, buy unprocessed foods, and cook it yourself, then you will automatically eliminate and bypass most of the common pitfalls that so often trip up people who try to follow a GF, DF, SF diet, while using processed foods.

Between the accidents, and being practically chained to the bathroom, MC can be a very humbling disease, and no one truly understands it, unless they actually have it. Feel free to ask anything, because we've all been there, done that.

Please be aware that patients such as yourself, (who know more about their disease than their doctors), can be very frustrating, from their doctor's viewpoint. I'll bet you're the very first patient that your doctor has ever encountered, who actually predicted MC, let alone predicted it correctly. I'm sure he's still scratching his head over that one.

Thanks for the kind words about our board, and again, welcome aboard.

Tex (Wayne)

[MaggieRedwings]

Welcome Ann.

Now you are a lady that took charge and I admire that. Pepto did not do a thing for me and diet alone seems to be getting a handle on a long-aged disease. You sound like a person who makes up their mind to take their medical care in hand and decide what is needed. A good thing.

Maggie

[angy]

Hi Ann and...

Sorry to hear you have been given a duel dx with mc...but well done for making your own dx,s .yup we all know our own bodies!!!.hell who needs docs lol!! well maybe for the little tabs we have to get ...

I was much the same as you ann but got ill 20 months ago...
i contracted a virus and this led to me having d for 8 months solid..i could hardy eat anything, lost a stone in weight and discoverd gluten made me ill..now i thought this was bizarre cos i had ate gluten all my life...i was convinced i was celiac. During the wait for the colonoscopy i completely omitted gluten from my diet.

Anyway i waited 9 months for a colonoscopy., the hospital made a total cock up of my appointment...i had to take it further to the nhs.,..
When i received my dx i was expecting to be told celiac, but then he said you have collagenous colitis...i was stunned cos i researched all the bowel dx,s you could think off...only i had never heard of that evil mc ...

I am prescribed mesalazine 2000mg daily...it was 3000mg but went down...

i still have flare ups too even when i only eat gf food...I guess there are foods that affect celaic, and on the other hand there are foods that affect the mc..its like two different problems going on there....god im still on a journey of discovery there...but sod it im having 3 chocolate snowballs later with my tea !! (gf of course hehe!!)

Anyway i wish you the best of good health and look forward to reading your posts...welcome to our huge family who are so caring and thoughtful....and understand what your going through or going to go through...Please dont hesitate to vent here...we have all been there and continue to do so...

anjy

[starfire]

Hi Ann,
I see I missed your post originally. Seems like I miss a lot of them these days.

I am so glad you found this site, especially since you had to ASK to be checked for MC. It's an uphill battle with this disease in regard to the GI Docs. Some, at least, are doing automatic biopsies now.

I think you are on the right track with the Paleo Diet. I hope you see some good results soon.

Shirley

[AnemoneGirl]

Thank you so much for the warm welcome! I love everything that all of you have said. The suggestions are great and I plan to look into each of them (parasites, probiotics...). I have yet to find a probiotic that doesn't contain soy! I know there was a thread on here that talked about want of a MC friendly probiotic. I'll have to find it again.

Thanks again for all of your thoughtful words of encouragement!
-Ann

[jillian357]

Hi Ann!

I don't have much to add other than I wanted to wish you a Hearty Welcome too!

This is a GREAT family....I would be lost without these great folks.

WTG getting your gastro to check for MC....I'm so impressed!!!

I hope the Paleo diet and Pepto start working for you....SOON. It's no fun being chained to the bathroom.

It WILL get better, keep the faith. You are definitely on the right track!

Again, welcome!!
~Jill

[suzil]

Welcome!
Here's a probiotic you might want to consider-very economical if you buy the 90 day box. We have been happy with them, as well as the Enzymatic Therapy brand Gluten Defense product for a little extra protection when eating away from home. This site also has reasonable prices for a limited selection of GF foods.
Sue

http://www.vitacost.com/Enzymatic-Thera ... -90-Pearls

[tex]

Sue,

I have no proof of this, but those "Pearls" probably contain a soy derivative. In this country, commercial lecithin is generally made from either soy, corn, or egg yolk. Since the product is labeled to be free of corn, that makes soy a prime suspect. (Soy is a much cheaper source than eggs would be, and most manufacturers will invariably select the cheapest source, when given a choice).

For food labels, if soy were the source of the lecithin, then soy would have to be specifically mentioned on the label. Pharmaceuticals, however, (and neutraceuticals), are exempt from those labeling laws, and such information is often listed on a voluntary basis, but disclosure is not mandatory.

Tex

[JLH]

My Flora Q2 bottle says "This product is free of the following allergens: wheat/gluten, milk/lactose, eggs, fish, crustacean shellfish, soybeans, tree nuts and peanuts."

It is quite expensive and Dee suggested buying it or others at Amazon.