21 yr old w. Lymphocytic Colitis

Somsri · Post by **Somsri** » Thu Jun 09, 2011 6:56 am

Hi all :)

I've been frantically searching the web trying to find as much information on LC as possible and was lucky enough to stumble across this forum. I just wanted to introduce myself and hopefully ask some questions about microscopic colitis.

A bit of background on me:

I went into the doctor with the flu and had a routine blood test. The blood test came back with a high ANA reading (which apparently is indicative of autoimmune diseases?), I told the doctor that for about a year I've had bad stomach aches (which I thought were a product of having terrible anxiety) and she sent me to a specialist in case of crohns or UC.

The specialist wrote me off as having IBS as that would fit with my background of anxiety but sent me for a colonoscopy to check. In the mean time my stomach pains became worse to the extent of near constant aching every day. My colonoscopy was clear at first but to my surprise (and my specialist's!) the biopsy came back clearly showing lymphocytic colitis.

I guess my main issue is that I have never heard of this disease and my specialist had no real information on it that he could give me due to it being quite rare.

I seemed to get the impression from my specialist that it's very odd that I should have LC considering I'm quite young and I don't really have the key symptom of bad diarrhea (I just have pain and an ever rising ANA reading).

I was wondering if it is normal to not have the diarrhea aspect of it and can I expect that it will definitely show up sometime in my future?

I was also wondering if LC stays with you for life or if it can go away itself/be cured?

And lucky last, is it possible I could be more predisposed to developing crohns, UC or coeliac from having LC?

Sorry if I seem quite ignorant on the topic but there doesn't seem to be a lot of info out there at all!

Would really appreciate any answers, comments or even your experience!

EDIT: I thought I should also mention that I'm currently on Endep 25 mg for IBS (which I think I also have) and that has actually helped with my pain. Now I only get pain after I eat some meals, but I havent worked out the common food link yet.

natythingycolbery · Post by **natythingycolbery** » Thu Jun 09, 2011 7:32 am

Hello and welcome to the PP family,

I was diagnosed with LC at the age of 22 and i know there are a few twenty somethings on this board so it can affect anyone at any age (infact I believe someone's 2 and a half year old child was unfortunate to develop this horrible disease)

I'm not really an expert on this and compared to some of the vets (Like Tex) I can't really answer your questions for you to the extent they can and don't really want to try to incase i give you the wrong information. So i advise looking around this site for a bit to see what you can find. However I do know there have been some LC/CC/MC people who haven't had the big D and just the pain.

Sorry I couldn't be of more help.

Katy/Naty x

Post by **tex** » Thu Jun 09, 2011 9:01 am

Hi Somsri,

Welcome to the board. I need to get to work, so I'll try to answer your questions this way:

Somsri wrote:I guess my main issue is that I have never heard of this disease and my specialist had no real information on it that he could give me due to it being quite rare.

It is only rare in your specialist's experience. Actually, it's more common than Crohn's disease and ulcerative colitis, but doctors have only recently begun to aggressively search for it, most of them don't yet have much experience with successfully treating it,

Somsri wrote:I seemed to get the impression from my specialist that it's very odd that I should have LC considering I'm quite young and I don't really have the key symptom of bad diarrhea (I just have pain and an ever rising ANA reading).

As Katy mentioned, we have members of all ages - doctors just don't normally do colonoscopy exams and take biopsies on younger patients, and they can't diagnose the disease unless they take biopsies, and have a pathologist examine them under a microscope.

Somsri wrote:I was wondering if it is normal to not have the diarrhea aspect of it and can I expect that it will definitely show up sometime in my future?

It's not common, but not as rare as most people believe. Many of us here have alternating constipation/diarrhea, and some have only constipation. Some are asymptomatic, with no symptoms at all.

Somsri wrote:I was also wondering if LC stays with you for life or if it can go away itself/be cured?

Yes, once the disease is triggered, it lasts forever. However, the symptoms can be controlled, by the proper treatment.

Somsri wrote:And lucky last, is it possible I could be more predisposed to developing crohns, UC or coeliac from having LC?

The odds of developing celiac disease are definitely elevated, (because almost all of us are gluten-sensitive, if we have MC), but the odds of developing Crohn's disease, or UC, are not significantly greater than someone in the general population.

Somsri wrote:Sorry if I seem quite ignorant on the topic but there doesn't seem to be a lot of info out there at all!

You're right, and the bulk of the information available about it on the internet is either wrong, or a half-truth. Even the websites of most major medical institutions are full or incorrect claims about this disease. They're slowly learning, though.

Again, welcome to the group, and please feel free to ask anything.

Tex

ant · Post by **ant** » Thu Jun 09, 2011 9:21 am

Dear Somsri

Welcome from Hong Kong. This is very late in the evening for me but just wanted to say.......read all you can here for true wisdom and compassion.

All best, ant

dgshelton · Post by **dgshelton** » Thu Jun 09, 2011 9:34 am

Somsri - I was only diagnosed with MC a couple of months ago, but I started having alternating D and C when I was 25. Of course, I was diagnosed with IBS (I think a lot of us have been misdiagnosed with it). My GI doesn't know a lot about MC either. It can be triggered by certain medications. I know a few people on this board have gone into remission when they stopped taking the medication. My GI doesn't think food is related to MC at all, but it is very interesting that pretty much all of us with MC have an intolerance to gluten and when completely remove it from our diets, our symtoms get better.

Tex is our resident guru. I have yet to see a question that he can't answer.

I know all all this information is overwhelming, at least it was for me.

Take care,

sarkin · Post by **sarkin** » Thu Jun 09, 2011 9:50 am

Welcome, Somsri!

I hope you're feeling better very soon. This forum is the place for getting questions answered, and finding some encouragement in this process (I know what you mean about frantically searching, and I truly believe that you have arrived at the best possible place to get on the path toward symptom relief and recovering your health).

All my best,
Sara

Zizzle · Post by **Zizzle** » Thu Jun 09, 2011 12:55 pm

Welcome Somsri,
I've had a highly elevated ANA for 7 years. It was first discovered after the birth of my first child (I was 30). My level started at 1:640. 3 years later it was 1:1280 and held there for a few years. I only had mild IBS during that time. 2 years ago the big D of LC hit and I was in the bathroom 6x/day. It's likely I had LC earlier, but the obvious symptoms didn't manifest for some time. That said, this may be the perfect time to do something to PREVENT the big D (or Lupus, etc) from ever happening. I've been on a gluten-free, dairy-free and mostly soy-free diet for less than one year, and my stubborn ANA is now down to 1:320. Have you been tested for ceilac disease yet? Any celiac, diabetes or other autoimmune diseases in your family? If your autoimmunity is tied to gluten-sensitivity, changing your diet could really help. My GI refused to test me for celiac, so I did my own testing through Enterolab.com. That's how I learned which foods I needed to eliminate.

Did they do any additional autoantibody tests to determine the significance of your ANA?

Somsri · Post by **Somsri** » Thu Jun 09, 2011 5:03 pm

Thank you so much everyone for welcoming me and giving me some much needed answers!

I've been afraid that gluten intolerance might be why I get the pain (although I actually feel worse and do get D often after my morning coffee- so maybe lactose isn't my friend either!). I'm actually quite scared of having to cut out gluten- my family and I love all kinds of breads (my dad grew up in a bakery!).

Thanks for answering all my questions Tex! I was afraid that it might be something that will stay with me for life :( But it's so nice to have found people who can give me advice!

Zizzle - Once the ANA reading increased on the second blood test they did follow up blood tests for many, many things (which I believe included testing for celiac/inflammation etc) and they all came back clear. So it doesn't seem like I have celiac or another autoimmune disease that's showing up at this point. No one in my family has any history of autoimmune diseases (or even any food sensitivities for that matter!) so I seem to be the first. The doctors told me that some people just live with high ANA readings but I'm reluctant to believe it isn't associated with the MC and some of my other issues (the worst probably being chronic upper back pain which is unexplainable to the doctors).

So is it possible to potentially prevent celiac disease and other complications by changing my diet now? Is there an easy way to work out what foods I'm sensitive to?

Thanks so much again everyone, what a lovely, welcoming community!

Gabes-Apg · Post by **Gabes-Apg** » Thu Jun 09, 2011 5:14 pm

G'day Somsri

it is great you found this site, there is bucket loads of information that will help you and some pretty wonderful people that will answer your questions (as you have already seen) this forum is the result of many amazing people that just want to help others that have this crappy condition (pun intended)

cramping pain of the digestion has been a symptom for me since childhood, in the lead up to my MC diagnosis joint aches and fatigue were very common, eliminating the ingredients/foods that caused MC issues has meant that these symptoms have abated alot.
Nowadays I only get them when i have a flare of symptoms

my theory with MC is that there is no right way or wrong way there is your way.... although across the group there are lot of similiarities with triggers and symptoms, we are all very unique in that we all react in different ways. A treatment that works for one person may not work for another....

in Australia it took me 6 attmepts to find a GP that had heard of MC and accepted that i was using diet as the main management tool, he also embraced the proactive approach to this condition.
based on the feedback of the people on this forum about 1 in 20 are lucky to get a doctor that 'gets it' so to speak....
for the other 19 of the 20 it is the patient generousity of this group that has helped most people attain wellness

Good luck digesting all the info (pun intended) and know that you are not alone, we are all here to help you on the journey of MC Management and getting your life back

take care

Gloria · Post by **Gloria** » Thu Jun 09, 2011 6:36 pm

WELCOME SOMSRI!!

I'm so sorry you had to find us, but am happy to be able to help you.

We have a saying here that the only difference between IBS and MC is a biopsy. As Tex pointed out, most GIs don't do colonoscopy/biopsy on younger people, thus they don't diagnose MC. I call an IBS diagnosis an "I'm BSing you when I tell you that you have IBS." It's a diagnosis determined by process of elimination. When they don't know what you have, they tell you it must be IBS. When I visited my GI for the first time, I told him that I wouldn't accept a diagnosis of IBS because I knew that it was just a catchall. He seemed a bit startled, but he did proceed to find that I had MC. I was his second MC patient four years ago. Since then, he says he has had many more. He's still not counseling his patients to change their diet, but he is prescribing Entocort, unlike the Prednisone that he first suggested to me. (I told him I wouldn't take Prednisone).

We have years of experience and practical knowledge with managing MC. You have reached the most comprehensive site on the web. I'm sure you're reading and learning and will have more questions. Please don't hesitate to ask them.

Gloria

Post by **tex** » Thu Jun 09, 2011 6:45 pm

Somsri wrote:So is it possible to potentially prevent celiac disease and other complications by changing my diet now?

Yes, definitely!

Somsri wrote:Is there an easy way to work out what foods I'm sensitive to?

Yes. You can do it by trial and error, using an elimination diet, or you can do it with lab tests, by ordering a stool test kit, (for collecting a sample), from Enterolab, in Dallas, Texas. Their stool tests are by far the most sensitive, reliable tests available, for determining the type of food sensitivities that we have with MC. Here is a link to their test descriptions:

http://www.enterolab.com/StaticPages/TestInfo.aspx

And here's a link to a description of how to properly do an elimination diet:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

Tex

sarkin · Post by **sarkin** » Thu Jun 09, 2011 9:45 pm

Gloria - you must have really helped those future patients of your doctor! I bet your doctor also feels better actually treating the problem, as opposed to 'IBSing' it.

Somsri - I hope you feel encouraged already. To avoid celiac, if it's heading your way - eliminating all sources of gluten is key, as you probably know, and there are many web resources for determining the 'hidden' gluten in common ingredients and processed foods. (As someone recently discovered here... there's even an iPhone app for that! and Android apps as well.) As Tex has already said, other food sensitivities can be worked out via Enterolab tests or personal investigation (and some personal testing may always be involved, for the fine points). Enterolab was great at confirming my major food offenders. I thought I knew, but I was continuing to eat eggs, which they flagged as problematic. I shed a tear, but eliminating them definitely made a difference for me, almost immediately - even after weeks of gluten free and dairy free.

I don't know what Endep is - but I'm glad it's helping!

One good thing is - you're young to be putting up with this diagnosis, BUT you have not yet had the sort of damage that would accumulate over more years and decades, and even if there has been a little health 'glitch' it is much more likely to heal and reverse at your age. That may seem a slightly tarnished silver lining, but - I believe you'll polish it yourself over time, and here's to speedy healing for you!

Sara