Celiac & Lymphocytic Colitis

[standyk]

Hello!

This is my 1st post and this makes me nervous! I tested positive w/ a blood test for Celiac 11/06 (I went to the dr. and requested the test myself), 12/06 I tested positive to the endoscopy and in 1/07 my colonsocopy tested positive for Lymphocytic Colitis. My dr. says that my colitis can be controlled by diet like Celiac. I went gluten free 12/05/06 and started to feel much better until January. I have been experiencing horrible cramping (just below my hip bones) and it radiates into my back so bad at times I cannot stand up straight or stand for long periords of time. My doctor told me this was a "build up of gas" because my digestive system is in such horrible shape. He told me to stop eating dairy products and ALL fruits and vegetables (cooked or raw). He said it may take 1-2 years for my system to recover or it may never recover. Any one have any other suggestions? I'm the only person in my family, my husband's family and of all our friends/coworkers to have this and feel so alone at times! Thanks for listening!

-Sandy

[AndreaC]

Hi Sandy,

This is my first post too. I also have lymphocytic colitis (so you're not alone), but I don't actually have celiac disease. I have been controlling the LC by sticking to a gluten free diet and cutting out nightshades. I found that it took a while for the GI symptoms to settle down and for a while I started getting abdominal cramps that were worse than before I started the diet (so much pain I would almost pass out). But luckily those symptoms have settled down too and I think my LC is in remission. The only thing I'm still struggling with is extreme fatigue.

Andrea

LC - diagnosed Oct/06

[happygirl]

Sandy and Andrea,

Welcome to the board!!!!

Celiac and Microscopic Colitis (which covers LC) or gluten and MC often go hand in hand. I was tested for this last year, and there is a wonderful resource at Open Original Shared Link about microscopic colitis. They are also pretty informed about gluten. They should hopefully be able to help you in terms of the symptoms and course that MC can take, and how it relates to other foods.

Dr. Green (A celiac researcher) actually discusses MC as a condition that can be associated with Celiac.

We are happy to have you here! I hope you don't think that I am sending you "away" to another board, but I wanted to make sure you have all of your bases covered !

This board is a wonderful resource, and I hope that it will help you feel less alone. This board is such a great place, full of gluten information and support. Let us know what we can do to help!

Best of luck,

Laura

[standyk]

Hi Sandy,

This is my first post too. I also have lymphocytic colitis (so you're not alone), but I don't actually have celiac disease. I have been controlling the LC by sticking to a gluten free diet and cutting out nightshades. I found that it took a while for the GI symptoms to settle down and for a while I started getting abdominal cramps that were worse than before I started the diet (so much pain I would almost pass out). But luckily those symptoms have settled down too and I think my LC is in remission. The only thing I'm still struggling with is extreme fatigue.

Andrea

LC - diagnosed Oct/06

Silly question, but what are nighshades? Thanks for letting know I am not alone in my pain!

[standyk]

Sandy and Andrea,

Welcome to the board!!!!

Celiac and Microscopic Colitis (which covers LC) or gluten and MC often go hand in hand. I was tested for this last year, and there is a wonderful resource at Open Original Shared Link about microscopic colitis. They are also pretty informed about gluten. They should hopefully be able to help you in terms of the symptoms and course that MC can take, and how it relates to other foods.

Dr. Green (A celiac researcher) actually discusses MC as a condition that can be associated with Celiac.

We are happy to have you here! I hope you don't think that I am sending you "away" to another board, but I wanted to make sure you have all of your bases covered !

This board is a wonderful resource, and I hope that it will help you feel less alone. This board is such a great place, full of gluten information and support. Let us know what we can do to help!

Best of luck,

Laura

Thanks Laura, they say it gets eaiser with time!

[chocolatelover]

Hi! I can't tell you how excited I am to see this thread. When I was dx'd with lymphocytic colitis back in January I asked about it, but no one answered me. I have had spent many hours researching the link between lc and celiac. I have not been diagnosed celiac, but am certain gluten is affecting me in a big way.

My real problem is that I hate my GI's office because they screwed up everything from the bloodwork to the biopsy. They did a colonoscopy and dx'd the lc, then they did an endoscopy and only took 1 biopsy, which was, of course, negative. I am waiting to see another GI but can't get in for another 3 weeks. I'm currently eating gluten because I don't know if the new GI will want to repeat the endoscopy and bloodwork or not. I am also waiting for my results from Enterolab to see what they find through their stool tests.

I have found a lot of research linking lc and celiac (or gluten intolerance), and I'm wondering if a gluten free diet will help the lc. The first GI just put me on some medication, which I'm not currently taking, because I would rather try to control it with diet as opposed to medication. Do any of you have experience with this?

Welcome to these boards--hopefully we can help each other out here!

cl

[happygirl]

nightshades are a family of foods that include potatoes, tomatoes, eggplant, and a couple other things...some people have reactions to them as a group (i.e., if you have probs with one, you might have probs with all).

On the MC board that I mentioned, many of them don't have Celiac, but gluten is one of their offending foods. Many of them are not on meds and control it by diet. They know a LOT about MC and food....I was really, really impressed. So you could only be LC but affected by gluten, having nothing to do with Celiac. Or, you could have Celiac and LC, as Dr. Green has mentioned.

The people on the other board recommended doing an elimination diet to find out what foods are your trigger foods.

Laura

[standyk]

Hi! I can't tell you how excited I am to see this thread. When I was dx'd with lymphocytic colitis back in January I asked about it, but no one answered me. I have had spent many hours researching the link between lc and celiac. I have not been diagnosed celiac, but am certain gluten is affecting me in a big way.

My real problem is that I hate my GI's office because they screwed up everything from the bloodwork to the biopsy. They did a colonoscopy and dx'd the lc, then they did an endoscopy and only took 1 biopsy, which was, of course, negative. I am waiting to see another GI but can't get in for another 3 weeks. I'm currently eating gluten because I don't know if the new GI will want to repeat the endoscopy and bloodwork or not. I am also waiting for my results from Enterolab to see what they find through their stool tests.

I have found a lot of research linking lc and celiac (or gluten intolerance), and I'm wondering if a gluten free diet will help the lc. The first GI just put me on some medication, which I'm not currently taking, because I would rather try to control it with diet as opposed to medication. Do any of you have experience with this?

Welcome to these boards--hopefully we can help each other out here!

cl

My 1st gastro dr put me on a medication call Pentassa, he had me taking 4000 mg a day and I felt sooooo much

better, however, my new gastro dr (who just moved here from the Mayo Clinic in MN) said the studies they did

at the Mayo Clinic on this medication showed that it can be harmful to your liver and he said NOT to take it and

their studies showed we can get better with a strick gluten-free diet. My dr also said that LC was usually casued by celiac disease.

The hard part for me is that I do not feel good again and have all those new symptoms! Best of luck with your

tests, not that I hope they are positive, but I hope you find answers.

-Sandy

[Camilla]

I am also happy to see this thread. I'm struggling with Microscopic Colitis as well. I have been very strict about the gluten-free diet since I was diagnosed with Celiac Disease in June 2005. Still, about every three months, I have a flair up of MC. IT's so unpleasant. I am considering either: (1) taking medicine; or (2) trying a more strict diet, like the Specific Carbohydrate diet or the Paleo diet. I feel a bit dejected about either possibility, though. I don't think taking medicine is especially healthy, particularly when dietary interventions could work. At the same time, while I have adapted on the gluten-free diet, it seems that either the SCD or the Paleo diet would limit my options to the point that it would be very difficult to socialize and would weigh on my husband excessively (he loves good food).

[Noel1965]

Hi all - Is microscopic colitis genetic? I have celiac disease and yet I have not gotten any better after 1 1/2 years gluten free. The doctors keep telling me there is something more yet are doing nothing about it (I need to find a new doctor!) My son had colitis......thus my question whether or not it is genetic.....thanks

[Camilla]

I think MC, like celiac disease, has a genetic and environmental component. I have read that the same gene that predisposes one to celiac disease and Microscopic colitis. Your doctor would be able to diagnose your MC through biopsying your colon.

[standyk]

Hi all - Is microscopic colitis genetic? I have celiac disease and yet I have not gotten any better after 1 1/2 years gluten free. The doctors keep telling me there is something more yet are doing nothing about it (I need to find a new doctor!) My son had colitis......thus my question whether or not it is genetic.....thanks

Have you had a colonoscopy? They take a biopsy and that is how they find MC colitis.

Not sure if it is genetic, I'm the first in my family! Best of luck to you!

-Sandy

[standyk]

I am also happy to see this thread. I'm struggling with Microscopic Colitis as well. I have been very strict about the gluten-free diet since I was diagnosed with Celiac Disease in June 2005. Still, about every three months, I have a flair up of MC. IT's so unpleasant. I am considering either: (1) taking medicine; or (2) trying a more strict diet, like the Specific Carbohydrate diet or the Paleo diet. I feel a bit dejected about either possibility, though. I don't think taking medicine is especially healthy, particularly when dietary interventions could work. At the same time, while I have adapted on the gluten-free diet, it seems that either the SCD or the Paleo diet would limit my options to the point that it would be very difficult to socialize and would weigh on my husband excessively (he loves good food).

I'm going on the BRAT (Bananas, Rice, Applesauce, Tea) diet today that I found on the MC message board (www.perskyfarms.com) and hope that my symptoms will stop. I am not on medicine yet and like you do not want to if at all possible. They state when you have a flare up to try this diet for a few days to clean you system. Good luck and I hope it helps!

-Sandy

[chocolatelover]

Hi all...went to the website that was posted earlier in this thread. They are a very well-informed group of people who were extremely welcoming to me. They hold a wealth of information and are happy to share (and they have the best emoticons and graphics!). They call themselves the potty people and generally it seems like they try to use humor as much as possible to get through ("happiness is a dry fart" was my favorite quote). I do think they are mostly an older generation, but seem to have a pretty good insight as to what's going on.

I believe that like celiac, the genes are there, which means you are predisposed, but not everyone will get it. From what I've read, MC is not all that common, though my guess if they really started to dig deeper they would find more prevalence. I think that many people also believe that MC is the precurser to celiac, just like pre-diabetes is the precurser to full-blown diabetes.

I am not taking the prescribed meds--I would rather try the gluten free diet than be on a medication for who knows how long. If I absolutely have to, I will, but I'm trying to avoid that route right now.

I'm so glad to have found you all--let's keep in touch!

[happygirl]

Sandy,

I'm happy you checked out the persky farms site---It is wonderful! I felt confident that they really know about the various forms of MC like "we" here at celiac.com know about Celiac. They are the best resources for finding your food triggers.

Just a note, about the rice. Most rice is enriched with corn by products (it doesn't necessarily say corn on the ingredient list, though). I discovered this as I was reacting to corn at one point. Lundberg Farms makes rice that is corn free though. (I am just putting it out there for in case you have a problem with rice). Every little bit of knowledge helps.

Dr. Green talks about MC in his book....tonight, I'll check and post what he has to say about it.

Laura

[standyk]

I did see where some have a reaction to rice and they did suggest potatoes instead. I, however, really dislike potatoes and will try the rice you suggested! Thanks a ton! This website and the other seem like they will really

help and I am glad to have found all of you!

-Sandy