New to this Board

[Courtney]

Hello everyone,

Well, I'm new to this site but, unfortunately, not at all new to lymphocytic colitis, although I was just diagnosed in July. For the past couple of months, I've been looking everywhere, trying to learn about this, and there's just not much information out there, so I'm really grateful to find you.

I started having really awful pain in my lower abdomen when I was 21. In July of 2003 I had a negative laparoscopy for endometriosis, and the obgyn told me it could be IBS, although, interestingly enough, he did remove some adhesions that were attaching my lower sigmoid colon to the abdominal wall. Started with the horrible diarrhea that September and have been blaming it on that surgery for awhile.

I was diagnosed with hypothyroid in May 2005. (On the bright side, I never had to deal with the constipation part of that!)

I've made cross-country moves twice in the last three years (joys of the dual career couple), and docs kept blaming my problems on stress, homesickness, you name it. I've been diagnosed with IBS more times than I can count.

The D got exponentially worse about two years ago, and I started in with the whole diarrhea/incontinence thing. I wasn't sleeping through the night bc of the pain and the bathroom visits...and then the time I spent cleaning the bathroom after.

In May 2007, I had a negative endoscopy, was told it was IBS and told to go home and deal with it and stop thinking I was so sick. (You want frustration with the medical community, I got it!)

Anyway, by a year later I had decided this couldn't go on and I saw another GI who did an upper and lower GI check. In July 2008, he diagnosed me with lymphocytic colitis and celiac disease.

I'm on my fifth week of an eight-week course of Entocort right now, and I've seen some improvement, but I don't want to stay on steroids forever.

Thanks for providing this forum for people to get together; my doc said this was really rare, so I was pretty much on my own. Glad to know I'm not

Courtney

[JLH]

Courtney. I so glad you found us.

I got my LC diagnosis in June. I have almost the same intolerances as you. Casein instead of lactose, though.

[tex]

Hi Courtney,

Welcome to our on-line family. I'm sorry that it took so long to get a diagnosis. As you have found, almost always, the difference between IBS and MC, is a biopsy. Your experience with GI docs is a classic example of why MC is still considered to be a rare disease. A "rare" classification is a self-fulfilling prophesy, because you can't find MC, unless you look for it, and there's only one way to look for it - by taking biopsies of the colon. As long as they consider it to be a rare disease, it will stay that way, because they rarely look for it. <sigh> One of these days, they'll discover that maybe it's not so rare after all, and hopefully, the med schools will begin training med students to be more aware of it. I don't know what their excuse is for not properly diagnosing celiac disease, because the last time I looked, the average length of time required to get a correct diagnosis, is around 11 years. That's absolutely pathetic. In this day and age, one would think that they could do a lot better, to say the least.

Since you have a celiac diagnosis, I assume that you are on the GF diet. If you are still not seeing any improvement after eight weeks of the GF diet, and Entocort, you may need to consider removing some other "triggers" from your diet, (and making doubly sure that some gluten is not sneaking into your diet). Most of us who are gluten sensitive, are also casein sensitive, (and even if we are not, we're certainly lactose-intolerant while we are actively reacting), so you may need to remove all dairy products from your diet, (if you haven't already done so). Also, about half of us who are gluten sensitive, are also sensitive to soy, which I see you have listed, so I assume that you are avoiding it, also. Fiber is recommended for IBS, but it is exactly the wrong thing to eat for someone with MC, so try to minimize the amount of fiber in your diet, (at least until after your gut is healed, then you can begin slowly adding it to your diet, again. A few of us are intolerant to eggs, and various other things. Almost all of us have to cut out all raw fruits and vegetables, until we heal, and it is usually helpful to minimize sugar in the diet. Artificial sweeteners are a no-no for many of us, often causing a severe D problem.

Eventually, as you fine tune your diet, you will probably be able to slowly discontinue the Entocort, but some of us take it for a while, to help reduce the symptoms, while our gut is healing. Typically, the longer we have symptoms, before starting treatment, the longer it will take our gut to heal. Many of us who suffered as long as you have, before starting treatment, have found that it can take about a year, (and possibly longer), to heal.

(You want frustration with the medical community, I got it!)

That could probably be our motto, around here. Welcome to the club.

Please feel free to ask anything - we've been there, done that, and we'll do our best to help in any way we can.

Again, welcome aboard,
Tex

[binky]

Hi Courtney,
I'm new too. This is a very welcoming place isn't it? I'm glad we found it. Welcome from me too!
Best wishes,
Binky

[Courtney]

Thank you all for the welcomes, and Tex, thanks so much for all the information. I have been doing the gluten-free diet since August. I'm fortunate in that my husband is a skilled and creative cook and is willing to go gluten-free with me so that I don't have to worry about anything in the house and deal with separate toasters, etc. I've been trying to be mostly dairy free for awhile now, too, but I am going to try eliminating it completely from my diet and see how that goes. Soy is a problem for me because it interferes with my thyroid medicine, so I've been trying to avoid that for quite awhile, but when I started reading labels very carefully I realized that some form of soy is in almost everything. I have to admit I was an artificial sweetener junkie from a hypoglycemia diagnosis about ten years ago until a couple of years ago when I started thinking maybe that was what was making me sick. Since I have to avoid sugar, I've learned to like my coffee black

Thanks for telling me what I might expect on the Entocort. I do have a pretty severe case, according to my GI. I had lymphocitic colitis throughout my colon (ascending, transverse, and descending), but fortunately the celiac was only at a Stage 1. I won't say I'm thrilled to have this (I am thrilled to know what I have, finally), but I see it as an invitation to take care of myself. I was flipping through a book on autoimmune recently, and it said something like: "How to live a long and healthy life: Get a chronic illness and learn to take care of yourself." And when I see what a lot of otherwise healthy people do to their bodies with putting the wrong things in them, and not getting enough rest, etc, I can really see the wisdom of that.

I feel so much better, too, knowing that there is a support system here of people who know what I've been going through and who have some insight and compassion for it.

Looking forward to getting to know you

Courtney

[JLH]

YES, it seems like soy is in everything. I did great going GF and DF until soy rasied its ugly head.

[tex]

Soy is a problem for me because it interferes with my thyroid medicine, so I've been trying to avoid that for quite awhile,

Whoa! I think you're about to erase some of my ignorance. While I'm well aware of soy's tendency to have adverse effects on certain hormones, I wasn't aware of a connection between soy and thyroid issues. I mostly avoid soy, on general principles, but I never worry about trace amounts, because I'm not intolerant of it. I do have hypothyroidism, though, and I recently switched to Armour, because synthetic T4 resolved the labs just fine, but did not resolve all my symptoms. So should I be concerned about those trace amounts of soy, or is taking a thyroid supplement on an empty stomach sufficient, (as the doctors claim)?

Wow! You are one lucky lady to have a husband who is not only a qualified chef, but willing to adopt the diet right along with you. That will make the task of adapting to the diet much, much easier, and it should eliminate most of the risk of cross-contamination. We are fortunate to have a professional chef among our members, and she has compiled quite a collection of recipes that she has personally found to be safe and tasty, (close to two hundred recipes, already), so if you ever need any ideas for meals, you can find some good ones here:

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

Regarding the GF lifestyle: I don't know if you are aware of this or not, but contrary to what many people think, celiacs who follow the GF diet, actually live longer, healthier lives than the general population, so whoever wrote that book is definitely correct.

Thanks for the tip about soy.

Tex

[Babsey]

Hi Courtney and Welcome!

I was diagnosed with MC in July also. I was losing my mind until I found this board. Everyone is so helpful and really caring. Right now I'm easing into gluten-free (only because I'm still learning and sometimes I eat something that I probably shouldn't have) and not taking any meds except for a probiotic. Colazal and Lomotil didn't help me at all and I'm putting off taking steroids because of osteopenia.

Welcome to the club and I'm happy you found us here.

[JLH]

Then there's my NSDH, who on our trip, when I refused the fresh bread the waitress was offering (before she brought it), had to have some............

I don't expect him to be GF but that was totally unnecessary.

[Babsey]

Joan,

I get what you mean. My husband is addicted to white bread and pizza.

Makes is even more difficult when your household just doesn't get it!

[angy]

hi woulld just like to say


I can totally relate to what you are going through, i have the similar problems.. Diagnosed this year with cc, and gluten intolerance.

You will find this site and the family a tower of strength. Everyone here has a diagnosis and some suffered for years. I always say those with long tern diagnosises are the only people who know the real issues and problems, unlike medical people.

I hope you feel better soon and wish you well. Look forward to reading your posts..

tc

[Courtney]

Tex, and others who are interested in the soy/thyroid connection,

If you're not intolerant to soy and are on thyroid medication, my general impression is that it's okay in trace amounts. My understanding is that soy can cause the body to absorb less of the synthetic thyroid hormone, but if your labs are okay, I wouldn't worry about the trace amounts. But those of us who have thyroid disease shouldn't be replacing our dairy products with soy versions, and if your labs are showing low thyroid function, it might be something to think about before you up your dosage. As I said, when I started reading labels I realized that almost all processed foods have soy in some form, and often quite a bit of it.

Happy label reading ,

Courtney

[tex]

Courtney,

Thanks. I probably should have mentioned that the reason why I feel that I'm not soy intolerant, is not just because it doesn't seem to cause any reactions, but also because I tested negative for soy antibodies at Enterolab. Even so, to be honest, the thought of drinking soy milk scares the heck out of me, and I've never tried it, and don't ever intend to try it. What you are saying makes a lot of sense, and I agree with you.

Soy is a tough one to avoid, all right, but most of us who have eliminated both, agree that corn takes the prize for being the most difficult ingredient to avoid. These days, virtually no processed foods are made without corn derivatives of one form or another, including many/most GF foods.

Thanks, I appreciate your insight.

Tex

[Carol Arnett]

Sorry I am late but welcome to this wonderful family. I feel sure you will find more useful information on this site than anyplace; including your doctors office.

We have all been through the same thing so nothing is prohibited...except bad language.

There are many members here who can be of more help than me because I have been one of the luckier ones but Tex is a genius when it comes to research and more than willing to share everything he knows. He set up this forum and maintains it entirely on his own. That is dedication to the nth degree. We alll feel blessed to have found him and to know him.

I wish you the best of everything and most of all getting back on the road to good health. Carol

[MaggieRedwings]

Welcome Courtney,

Sorry for why you had to find us but this is definitely a supportive family and a wealth of information and knowledgable people reside here. GF and Soy free and definitely the way to go. Once soy left my diet due to intolerance I had to abandon my vegan lifestyle of 30+ years since I was getting no protein.

Please stick around and again, Welcome.

Maggie