what causes lymphocytic colitis?

[aquilegia]

I have been surfing the website and it looks like most of the veterans here believe that eating gluten causes LC. Newcomers are advised to go on a gluten-free diet and preferably avoid dairy and soy. Tex says that gluten causes the inflammation of the colon and even though we take medication such as Enterocort, we will not get better without eliminating gluten from our diets. I cannot find any scientific basis for this theory. The medical profession does not know what causes LC, but there a few theories and none of them include eating gluten.
I disagree with advising everyone to avoid gluten, etc. There must be some people who get better on medication without having to go gluten-free. It is discouraging to a newcomer to be told that you will not get better on the medication that has been prescribed by a doctor and that you will relapse when you stop the medication as the inflammation will not go away without removing gluten from your diet, especially when there is no proof that this true.
I know that many people with LC have celiac disease and vice versa, but that does not mean that gluten is the cause of both conditions.

[sarkin]

Aquilegia,

No one can tell you what *will* happen if you eliminate gluten, or continue to eat it. What people here have found is that, only those people who have eliminated their problem foods have achieved remission without drugs, or maintained remission without drugs. What Tex describes has happened to many, many people here. It's a good bet that you might have the same experience. I myself had a completely unexplained remission, before I knew about the gluten connection. Now my MC is back - who knows why? I am not going to wait and hope for another bit of unexplained luck ;)

Gluten does not by itself cause inflammation - it's gluten sensitivity, which seems to be genetic in part, but triggered by something unknown, that makes vulnerable people respond to gluten... resulting in inflammation.

Everyone seems to have different combinations of foods that give them trouble. Gluten is the big biggie, though. Truly, no one wants to discourage anyone here! We just want to do what works. That is slightly different for each of us, it seems.

You might read Dr. Fine's studies on Enterolab.com and Finerhealth.com. He's very clear about the microscopic colitis connection. The genetic susceptibilities are different between celiac and other gluten sensitivity; a celiac patient might get MC as well, but unless you have the celiac gene, you are unlikely to get celiac even if you have MC, as I understand it. You can also order tests from his lab to determine whether gluten is a factor for you, and if it isn't - lucky you. Except then you still have to figure out how to manage the MC. For most here, eliminating gluten alone isn't enough. Many people have added back foods that they avoided originally. I have just ordered the tests for gluten, milk, soy, yeast and eggs, plus a malabsorption test and the genetic test (which I partly chose to get so I can share the info with my brother with more clarity, if appropriate).

Dr. Fasano has described molecular differences between celiac and non-celiac gluten sensitivity. You can find links to his studies on the site.

Eliminating gluten has been very helpful for me. I tried it, for free, no copay for drugs, and no side effects. I felt I didn't have anything to lose. With my symptoms, I was losing sleep, losing work, and losing joy. I am so much better in less than a month, and the first time I was sick for the better part of a year.

It is absolutely your own decision, how to manage your health. We are each our own "guinea pigs" - we can share opinions and advice, sometimes strong opinions ;) You will know in time whether your approach is working, and you will be able to make your own informed choices about next steps when the time comes.

Best of health to you, and let me know if you'd like help digging up those references... I'm sure I bookmarked them, but my husband has gone off with the laptop (he thinks it's "his").

Sara

[Zizzle]

Aquilegia,
I'm not sure gluten is the CAUSE of MC in many people (it can be drug-induced, be part of a larger autoimmune syndrome, etc), but I do beleive gluten intolerance is a result of having MC. When the intestines are inflammed, they become permeable (leaky gut - you can look that up), which allows food proteins from your GI tract to enter your bloodstream. Normally your GI tract should act like your skin, keeping foreign substances away from your blood and your immune system. But when you develop a leaky gut, your immune system is presented foreign antigens (food proteins) and often decides to react against them (much like a food allergy, just a different immune pathway). I for one am fairly certain I was not gluten intolerant my whole life. And I certainly wasn't dairy or soy intolerant. For me it started with a GI infection while travelling, which probably altered my intestinal flora, which led to "post-infectious IBS," which caused a leaky gut, which eventually led to MC. There were probably other infectious, hormonal (pregnancy), and environmental (toxic chemicals/metals) triggers thrown in there too. It was probably a 10 year process until the "Big D" of LC hit.

Some people with drug-induced MC (from NSAIDs, antidepressants, acid suppresors, etc) can probably reach remission by simply discontinuing the medication (so long as they are early in the disease process). But once the body has learned to react to and reject certain food proteins, all bets are off.

Doctors get about 2 hours of nutrition training in medical school, so they are most uncomfortable talking about the relationship between diet and disease. But many medical pioneers are changing that (slowly).

[catsrule]

asacol hd made me better. I have been eating everything this the beginning of the year with no problems. There are only a couple of things a no longer do. No more diet coke, a drank a ton of it which is what I think caused/contributed to my LC and no caffeine. I was told I had mild LC. I was very sick for 2 months until I took the asacol for 3 weeks. It 'cured' me, so far anyway.

[artteacher]

I just loved your description of the MC condition. Kudos!

No matter how we have arrived at MC, the disorder stinks. We have to stay flexible and hopeful, and open to analyzing it from a variety of angles and viewpoints.

Marsha

[Zizzle]

Thanks Marsha! I'm getting used to giving that explanation when people close to me can't understand my limited diet when I don't have documented celiac...

[sarkin]

Zizzle,

I also thought your explanation was super-clear, and thanks for sharing it - people have heard of celiac, and peanut allergies, but everything else seems weird. I'm now fighting off well-wishers who want to bring me GF cupcakes. I don't even know what I can tolerate at this point, but when/if I attempt chocolate, I'm sure not going to waste the experience by throwing in other suspect ingredients at the same time.

Now, instead of explaining my daily-changing list of what I'm avoiding and including, I'll be quoting you.

Saraa

[aquilegia]

Zizzle,
I thought the leaky gut was the small bowel, not the large bowel. The explanation you give is the theory of what causes celiac disease. Gluten is not supposed to reach the large bowel.

[JLH]

We do NOT believe gluten causes MC. We believe going GF (possibly dairy free and soy free and more for some PP) can help with the symptoms of MC.

There are some of us who do not react to gluten but most do.

I am thankful every day that I found Tex, Dr.Polly and the Potty People. I am treating my LC with diet alone.

[Zizzle]

Yes, the leaky gut theory usually is understood in the context of the small bowel. That may in fact be where the blood/protein exchanges happen. Your body then decides where to mount the fight. In some people that results in an attack of the small intestine villi (celiac), in others, the large bowel. But MC-related inflammation can happen anywhere along the GI tract. I saw Dr. Fasano (Celiac Center researcher) last year who said to me in relation to my LC: "we used to think celiac disease was limited to the small intestine. Now we know otherwise."

When you say gluten doesn't reach the large bowel, what do you mean? Where else would it go besides out the usual way??

[aquilegia]

The gluten would be metabolized before it reaches the large bowel.

[natythingycolbery]

Aquilegia, can i just point out that Tex isn't advising everyone to go GF, it is just a suggestion as this seems to be what works well for the majority of people with MC/LC/CC. I'm one of those who Gluten doesn't affect at the moment.

And also there is some research that suggests that there is a link between food intolerances and IBD's but this is still a very new discovery in the medical world (it was discovered about a year ago now) so not many DR's actually know about it at all yet. Here is the link to the article.

http://www.wjgnet.com/1007-9327/16/1442.pdf

At the end of the day, you have to find what works for you best. Everyone here is here to help you and give you tips on what has hasn't worked for them.

[Zizzle]

The gluten would be metabolized before it reaches the large bowel.

Is broccoli or corn fully metabolized before it reaches the colon? Most MC sufferers know that much of what we eat, often too much, reaches the large intestine partially undigested. The more fiber in the food, the more there is to break down in the colon. The breakdown of these proteins in the colon is usually the cause of gas. Whole wheat flour is one example that most certainly reaches the large bowel.

Many forms of gluten are not fully metabolized before they reach the large bowel.

Interestingly, white rice is one of the only starches that is fully metabolized before reaching the colon.

[sarkin]

The gluten would be metabolized before it reaches the large bowel.

Dr. Fine has found anti-gliadin antibodies in stool (so presumably from large intestine) in patients who do not (yet?) have them in the blood; perhaps the gluten is broken down into gliadin and glutenin, but breaking it down doesn't solve the problem for gluten-sensitive individuals? He also tests for (and has found in many celiac and MC patients) anti-tissue transglutaminase antibody; if present, it indicates the immune system is reacting to the enzyme produced by the body when gluten is consumed - meaning the immune system considers that enzyme a foreign substance, and mounts an autoimmune reaction.

You're right that there are important biochemical differences in how things go awry in celiac patients and in MC patients who react to gluten. On a practical level, I'm just looking to determine what I react to as accurately and safely as I can. For now, my symptoms are back in control with diet, and I'm pursuing further testing.

Sara

[JLH]

Posted: Thu Jul 22, 2010 7:13 am Post subject:

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QUICK_EDIT
http://www.huffingtonpost.com/dr-mark-h ... 79089.html

Great point, Tex, about the mothers listening to their uninformed docs and dismissing the PP. I still feel terrible for the child being treated at Iowa U. because her Mom couldn't think outside the box........

http://www.perskyfarms.com/phpBB2/viewt ... light=iowa


Hi Mom!

I am the pediatrician with MC that Tex referred to! You have already received excellent advice, so I don't have much to add. I think MC is more common in the pediatric population than docs know and is therefore underdiagnosed.

I can't recommend Dr. Fine's tests enough! Most of us DO have negative blood tests for celiac disease, just like your son, but nevertheless have significant gluten intolerance (and frequently additional intolerances). Since Dr. Fine's tests look for antibodies in the stool (rather than in the blood), he is much more likely to find the major offending foods. Most docs have no clue that there can be a serious gluten sensitivity that cannot be picked up with the classic celiac blood tests. Sigh. And, as far as we know, no other lab in this country is doing the stool tests for antibodies. In fact, folks here from around the world (Hong Kong, Spain, etc.) are using Dr. Fine's lab!

Best wishes on the road to recovery. It will take a while to figure out the offending foods, but you will! Hopefully you will get some support from the medical community, but don't be surprised if you don't.

Love,

Polly