Hello Potty People

[StephanieB]

Hey there! I've been reading (spying) up on MC, off and on, for about a year now but have never posted before. I've tried writing several times but have small children and get distracted. So here goes.....
I have vitiligo and Hashimoto's disease, both autoimmune. I am allergic to yeast and have always had tummy troubles. In fact, for most of my adult life I have always joked that I am allergic to carbohydrates. I started having more serious and more frequent stomach problems about the time I started synthroid and HRT. (about one year after having a baby) Maybe seven months later, I had a colonoscopy and was diagnosed with LC.
Fast forward one year, I have a new GI who has promised to help me get my life back. I had another colonoscopy which revealed bands of collagen in my colon. She thought it was collagenous sprue and said it was rare in the large intestine. Has anyone ever heard of this? I'm trying not to get too hung up on the name, CS, because it makes me think of celiac disease. It looks like my LC is now CC, according to the biopsies. Is this common? I'm now taking 3mg (x3) entocort to help with the inflammation.
Last year I started and failed a yeast free and gluten free diet. I'm doing much better with it now and this year 2010, I am trying very hard to give up dairy. For the last few months I've tried to eat a bland diet consisting of rice, chopped chicken, and frozen green peas. I make homemade chicken soup alternating between rice and potato. Even the bland food is hard to digest and it passes right through me. Sadly I can identify the contents in the toilet from the previous meal. Is this normal? Should I have tests done to see if my body produces the enzymes necessary to digest food? I don't eat salads or raw food anymore, except bananas. Healthier foods give me fits! Did I mention chocolate? Another thing I can't eat. I have trouble with coffee now, so my question is, is the acidity of the coffee, the caffeine, or the dairy creamer? I even tried decaf and non-dairy creamer but that didn't work. My first doctor didn't think food had anything to do with my problems. I hope my new doctor thinks differently. I have a follow up appointment this week. This doctor seems concerned and will listen, I just don't know what to say. Any suggestions would be greatly appreciated. Nice chatting with all of , finally.

[tex]

Hi Stephanie,

It's good to see you posting.

I have a hunch that your new GI doc is confusing collagenous colitis with collagenous sprue. Those thickened collagen bands in the lamina propria of the colon, are the marker of collagenous colitis. Collagenous sprue is typically found in the stomach, I believe, and is rarely diagnosed. It is a fact that lymphocytic colitis and collagenous colitis can segue back and forth from one form to the other, and they often do so. Quite often, both markers are found at the same time, in which case the condition is simply referred to as microscopic colitis. It is very, very likely that collagenous sprue and collagenous colitis are related, (because MC can affect any part of the GI tract), but it is unlikely that medical researchers will get around to verifying that, anytime soon.

Sadly I can identify the contents in the toilet from the previous meal. Is this normal?

That's not normal for "normal" people, but it is very typical of someone with active MC, and we have all been through that.

Should I have tests done to see if my body produces the enzymes necessary to digest food?

That would be a waste of time and money, because I can tell you that you are indeed deficient in certain enzymes, (mostly enzymes that split sugars), any time that you are experiencing enteritis. Poor digestion is a result of the autoimmune reaction that causes MC. When the gut is inflamed, digestion and nutrient absorption suffer - that's just an unfortunate fact of life. The good news is, when you get the MC symptoms under control, (by controlling the inflammation), your digestive system will begin to properly digest foods, again.

I don't eat salads or raw food anymore, except bananas. Healthier foods give me fits! Did I mention chocolate? Another thing I can't eat.

You are just like most of us - most of us have discovered the same things to be true for us. For some of us, all chocolate is indeed off limits, while for others, chocolate without soy lecithin is safe to eat.

Most of us are able to drink coffee, (unless it caused problems before we had MC), so I have a hunch that your "creamer" may be the problem. Most of us are unable to eat or drink any dairy products without reacting, and about half of us are sensitive to soy, and all soy products. I would assume that most non-dairy creamers contain soy, don't they? Try almond milk, (pick a brand that does not contain soy), or hemp milk, or coconut milk, if you require some type of milk in your coffee.

I too, hope that your new GI doc recognizes the effects of diet on MC, because diet is most definitely a very important part of the treatment of MC, unless you don't mind taking a corticosteroid for the rest of your life, to help control the inflammation.

Again, welcome aboard,

Tex (Wayne)

[Polly]

Hello Stephanie B and

So glad you posted.....finally! How many kiddies do you have? I am a pediatrician so am always interested in kiddies!

First of all, I am wondering why your doc diagnosed collagenous sprue instead of the usual collagenous colitis? Collagenous bands in the large intestine are not rare, as many of us here can attest. Sprue usually means that the gluten free (GF) diet has been unsuccessful. I'm not sure you have given diet enough time to be able to know if it is successful or not. It can takes mos. or even more than a year to see results from a strict GF diet.

HRT (as well as antibiotics and NSAIDS like Aleve, Advil, ibuprofen) have been suspected to cause MC (microscopic colitis, which refers to LC, lymphocytic colitis, and CC, collagenous colitis). There are some who believe that collagenous colitis (CC) is a later stage of LC.

Entocort is a good drug, but 3 mg. is quite a low dose to start with. I believe many start with 9 mg. per day.

Peas often cause problems for MCers because they are members of the legume family and contain lectins, which allow more foreign proteins to cross from the gut into the bloodstream. Oh, do I ever remember those days when the food on my plate passed into the toilet virtually unchanged! That is not unusual when MC is not in good control.

I cannot tolerate chocolate, either, unfortunately. Or dairy or soy. If you really want to know exactly what food intolerances you have, you may want to get tested by Enterolab. Check out www.finerhealth.com and www.enterolab.com. Dr. Fine, who created Enteroab, is A GI doc who has MC and has done lots of research. I think these tests would be more valuable at this stage than enzyme tests. When the gut is inflamed, raw foods are not tolerated, so it is understandable that you have problems with salads and healthy foods. This will change as your gut heals.

Most docs know nothing about the association of food intolerances with MC, so you may have to go it alone in this regard. Well, not really, because you have all of these MC experts right here on this website to help you! Those who get well (put their MC in remission) often have to do it without support from their GI docs (other than medication) - they have to develop their own treatment plan. And I can promise you that there are many here ready and willing to share their experiences with you. Looking forward to future chats.

Love,

Polly

[ant]

Dear Stephanie,

Welcome from Hong Kong, as you will know this is a global family! Tex and Polly has already given you the best advice. I was on 3gm x 3 Entocort for 7 months before a dared reduce to 3gm x 2. I am also using diet and a supplement called boswellia, to help inflammation. The process is gradual but I believe leads to remission. I am already much better then when I started.

Best wishes for your journey to recovery, Love ant

[Gabes-Apg]

Hi Stephanie. greetings from the land down under!

i was recently diagnosed in Dec 09. the best management technique for me has been diet. as you may recall from some of the posts you have read everyone is different. there are foods that we react to all the time and some foods that we may react to whilst in flare mode.

some people react to peas, i can tolerate well cooked peas. (quite a few people react to the legime family which the pea is part of) If you do the endocort testing then that will assist you with confirming what foods/ingredients are best

if not going back to basics, (rice chicken broth) for a few days and then one by one try ingredients.
i have learnt that there is not short cut or easy way while figuring out the diet thing. it takes time, patience, there will be diamond days and there will be stone days.

I am lucky, i can tolerate soy based chocolate.....and 3 months into the transition to a totally new eating plan, there are not very many foods/drinks i miss.

good luck figuring out what works for you. there are lots of knowledgeable, kind, sincere people here that can help you.

take care

[JLH]

StephanieB, glad you are posting now.

[Mars]

Welcome Stephanie!

You've received very good advise from those who have already welcomed you. I would only suggest that you take the time to search and read this forum. There is an unlimited wealth of information regarding diet, medicine and a combination of both here.

There is also a recipe section that will help you prepare foods taking into consideration your intolerances.

Things will get better!

Mars