Help the Newbie!

[jnewman]

HI-

I was diagnosed with LC in March. I have since changed my diet and basically have been doing the Paleo diet (no grains, dairy, soy, legumes, sugar). I have had some "cheats" with dairy, but have not with gluten. My doc put me on Entocort and Lomotil since the diarrhea was bad. It seemed to help a little, but when he told me to go off the lomotil I was back to having uncontrolled bowel movements. I saw him almost two weeks ago and have been on Entocort for 2 months. I've had very little relief. He was surprised and said the entocort should be helping me by now. He added Apriso and pepto. I've still not seen much of a difference. The diarrhea is controlled a bit better (as in i can make it to the bathroom...barely). I only go once now, though, as compared to several times or more.

My main question, is how long on diet and meds does it seem to take to make a difference? I go back to the doc this week and he said if i'm not seeing much of a difference, we may have to try regular steriods, which i would rather not do.

I know I can do more with diet. I have cut eggs and nuts out periodically, but not for any long length of time. Honestly, the diet changes don't seem to have that much of an impact. I've never had the gas/bloating it seems like most people have. Only the diarrhea. I work full time with two young kids and it's starting to stress me out if i have to give up much more in the food department.

Any help/advice is appreciated!! I'm glad i found this forum.

[tex]

Hi Jess,

Welcome to our internet family. You seem to be doing everything right, so I can certainly understand why you feel frustrated with the lack of improvement. It's true that most people would see some benefits from Entocort after a couple of months, (unless they had food intolerances which overrode the effectiveness of the Entocort). Since you've modified your diet early on, and you're still not seeing any improvement, (except by the use of Lomotil), that suggests that either the Entocort may not be providing any benefits for you, (it's not always effective for everyone), or you may have some other issue, (or issues), preventing the Entocort from providing relief. It's possible to be sensitive to paleo foods, also, but probably the biggest risk from a paleo diet, (in reference to using it to control MC), is the relatively high fiber content of the diet. Fiber is definitely contraindicated for MC. Minimizing fiber in the diet, will sometimes stop the D, when there is no other reason for it. Also, are you taking any meds for some other condition?

Many cases of MC are drug-induced. MC is known to be caused by NSAIDs, SSRIs, PPIs, statins, bisphosphonates, etc., and various other drugs.

Hormones also affect MC, which means that HRT can prevent remission, and so can BC pills. Some members have even found that HRT by means of transdermal patches can cause D.

Taking several drugs at the same time, to treat MC, is often counterproductive, because if the patient is sensitive to either one of them, then the other meds will usually not be able to overcome the problems caused by the first one. GI docs are bad about making this mistake. If a drug is not working, then it should be discontinued, when a different one is prescribed - otherwise, there's no way of knowing whether the first one is preventing the second one from working.

Regarding a steroid regimen - for most people with MC, there is little point to it, because Entocort will basically do anything that the other corticosteroids can do, and it is much safer to use. Since steroids, (other than Entocort), cannot safely be used for long-term treatment, there's not much to be gained by using them. Occasionally, though, we see a member who finds that the shock of a strong dose of prednisone will shift their digestive system into remission, and it will remain there. This sometimes works for someone who is doing everything right, but just can't seem to break out of the "spell" from the incessant D, even though they have been following a careful diet for months/years, and nothing else seems to work.

Another option is mediator release testing, in conjunction with the LEAP diet program, to determine the really hard-to-track-down food sensitivities.

Just out of curiosity, what inspired you to try the the paleo diet as part of your treatment program? Was it your GI doc? If so, he or she is way ahead of the rest of the bunch.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[jnewman]

Hi -
Thanks for the reply!

I had been on Lexapro for about a year. I discontinued it a few weeks before all my symptoms began. I am also off birth control as it seemed like after then birth of my second baby it was more of a nuisance than a help (i had lots of gas/bloating on it, low sex drive, breakouts, etc). I was excited to finally be off all medication and then this started :( The only other thing that i do take is generic allegra for allergies and Juice Plus. Juice plus is certified gf , but i've had many people tell me to discontinue. I have been off it for a good month, but haven't seen a difference.

So, that bring up another question. If this was drug induced from the lexapro, since I am no longer on it, should i still be having symptoms?

I found Paleo through a friend, but my doctor has supported me being on it.

Thank you for the insight about meds. I was thinking the same thing about the overlap.

Oh - and I did have the celiac test. It came out negative, but the doc said since i was off glueten before i took the test, it can be a false negative. At first, i didn't do any other testing since the LC came back. But since i am still having difficulty, my doc did order stool samples and am waiting for those tests to come back. I am almost hoping there is something else wrong :(

Thanks again!

[tex]

So, that bring up another question. If this was drug induced from the lexapro, since I am no longer on it, should i still be having symptoms?

Some people are luckier than others, and when they discontinue the drug, they quickly go into remission and remain there. Others are not so fortunate, because for many of us, when the genes that predispose to MC are triggered, other genes that predispose to food sensitivities, (and who knows what else?), are also triggered.

The only stool test results that we have found to be accurate and reliable, (for MC purposes), are those offered by Enterolab, in Dallas, TX. Their test for gluten antibodies, (gliadin antibodies), is so sensitive that it can accurately detect gluten-sensitivity for at least a year after gluten has been completely withdrawn from the diet, and in some cases it can still detect antibodies up to 2 years after adopting the GF diet. Most other food-sensitivities can only be detected for a couple of months or so after those foods have been removed from the diet, but anti-gliadin antibodies have a very long half-life, (at least they do in stool samples - blood tests can only detect anti-gliadin antibodies for a few weeks or so, after gluten has been removed from the diet).

Also, please be aware that the type of non-celiac gluten-sensitivity that we have, is virtually never detected by the classic celiac blood tests. As a general rule, those tests will only detect fully-developed celiac disease. The stool tests offered by Enterolab, can detect early signs of celiac disease as much as several years earlier than the blood tests are capable of doing. IOW, the stool tests are several orders of magnitude more sensitive than the blood tests, for detecting gluten-sensitivity.

Your doctor is probably having those stool samples tested for parasites and/or pathogens.

FWIW, it takes some of us a year or more to achieve remission after adopting the diet. It takes the gut a while to heal, from the damage caused by gluten and other food-sensitivities. Also, be aware that corticosteroids significantly slow down the healing process. That's one of their little-advertised, but major faults.

Kudos to your doctor, for supporting the diet.

The fact that you've never had any problems with gas/bloating, suggest that something other than diet might possibly be causing your MC symptoms. Just about any food sensitivity will tend to cause gas/bloating issues. Of course, the paleo diet is a far healthier way to eat than the conventional Western diet, but for future reference, having some stool tests done at Enterolab would allow you to know for sure whether you need to continue to strictly avoid gluten, and/or certain other proteins, or whether your diet can be less rigid.

Tex

[jnewman]

Thank you so much. That is very helpful!

I'm hoping to do the testing...gotta save the $ first :)

[Gloria]

Hi Jess,

I applaud you for jumping in and treating your MC with diet. Many people have a hard time adjusting to the idea that they need to change the way they eat in order to subdue their MC symptoms.

I feel for you having to work and raise small children while dealing with MC and it's dietary demands and constant D.

The Paleo diet is a good diet for many people, but it isn't a sure thing. I would never have been able to reach remission on it because it includes too many of my food intolerances: eggs, fruit, chicken and beef for starters. As Tex mentioned, it also includes many high fiber foods which are contraindicated for MC. Nuts are very irritating to our sensitive guts, as is lettuce.

The best diet for MC is a very soft diet. As another member of our board wrote, think of fiber and rough food as being like sandpaper on an open wound. We try to eat meats, soft, almost mushy fruits and vegetables. If there is any texture at all to the food, it's probably going to irritate your inflamed gut. Applesauce and bananas are good examples of soft fruit.

If you are eating Paleo, you are probably eating a lot of eggs for breakfast. They could be one of your intolerances. I've gotten diarrhea within two hours of eating eggs, even while on a full dosage of Entocort. You might try eliminating them to see if it makes a difference. Unfortunately, a Paleo diet without eggs makes breakfast choices very limited. I eat GF Rice Chex and Corn Chex cereals and pancakes and waffles for breakfast.

I hope you can find some relief with just a few more modifications in your diet. It's very helpful to have the Enterolab testing and the MRT testing, but I understand the financial aspect. Good luck and stay in touch.

Gloria

[jnewman]

Thank you Gloria.

I have been eating a lot of eggs and nuts. I am afraid those are going to have to go (at least for a while). I actually really like eating paleo and have never felt healthier. In a way, i think it will be harder to go from paleo to soft diet than a SAD to paleo :( I really enjoy eating fruits and veggies.

I've never had a specific reaction to food. My D (as of the last couple weeks) usually comes in the morning before i eat or literally at my first bite of food. On the pepto (which he has be trying now) i have notice more bloating/gas though.

I definitely seeing that the testing is the way to go and hopefully can get it soon. I'm a teacher, and just running out of the classroom is not an option for me.

thanks!
jessica

[tex]

Jessica,

It's not chiseled in stone, that you can't eat fruit or veggies. Many/most of us can tolerate some them, if they are peeled, (to get rid of most of the fiber), and well-cooked, (overcooked, in fact). Some can tolerate more than others, so we have to determine our limits by trial and error, but cooking all fruit and veggies, (except for bananas, of course), helps to make them much more easily digested. Raw fruit and veggies, in general, are off limits for most of us, until our gut heals.

Most of us can tolerate veggies such as squash, broccoli, green beans, asparagus, Brussels sprouts, sweet potatoes, potatoes, etc., so long as we don't overdo the quantity of fiber. The main one to avoid is lettuce. A few members can tolerate romaine lettuce, but very few of us can tolerate iceberg lettuce, until after we are in remission, and our gut has had a chance to heal.

Things such as cilantro, peppers, onions, garlic,etc., often cause problems for many of us. Most of us can't tolerate any citrus fruits while we're reacting, and virtually all artificial sweeteners cause problems for most of us.

My reaction pattern was somewhat similar to yours, in that I never seemed to react to any specific food, but I seemed to react to virtually everything, in a somewhat random fashion. My D came mostly in the morning, with only scattered episodes, during the rest of the day. After I cut gluten out of my diet, though, by keeping a food and reaction diary, I was able to figure out which other foods were the problem, and I was finally able to fine-tune my diet. If we react to gluten, it tends to dominate everything, and for many of us, it can cause a very confusing pattern of reactions, that can be difficult to correlate with a food diary, because the antibodies to gluten, (gliadin, actually), have such a long half-life).

The best part of the testing, is that it removes all doubt about whether or not we might be sensitive to those foods, so we don't have to waste any more time trying to figure out which ones we can eat, and which ones are off limits. Once we are in remission, it's much easier to experiment with trying various foods, because we can see without question, whether or not they cause a reaction.

Incidentally, most of us find that we can tolerate nut butters much better than the whole nuts, so that we can still get the nutrition from nuts, without the risk of a reaction. That doesn't work for all of us, obviously, but many of us can tolerate the nut butters, when we wouldn't be able to digest the nuts, themselves, without problems.

Tex

[jnewman]

Hi -

Before i do the testing, i think i will try an elimination diet. Any suggestions?

I've already been avoiding grains, dairy, legumes, soy , and sugar. I've let some dairy creep in and will cut it out all together. I've been eating out some and will try to cut that out as well since you never know truly what is in the food :)

I've been avoiding nuts and eggs for a week and will continue to keep them out.

I was going to make sure to cook all the veggies and avoid salads/raw veggies as was suggested.

Is chicken ok? Is it best to avoid red meat? I've never tried lamb...but that seems to have come up on the elimination diet research i did.

I'm also going to cut out coffee for a while too.

I really appreciate any input! Thanks!!
Jessica

[sellis]

I was diagnosed with microscopic collagenous colitis last October and have had no trouble controlling it by going off all NSAIDs and not eating raw fruits and vegetables. (Did NOT want to take the cortisone treatment the doctor recommended.) An occasional case of diarrhea was easily controlled with Pepto Bismol. The last couple of weeks I have been careless with my diet and have eaten some tomatoes, lettuce, etc. This week I am suffering from bad diarrhea and it's not responding to pepto bismol or other anti diarrhea meds. I found this site and would like to hear your thoughts. (I tested negative for celiac's disease)

[sellis]

What is enterolab testing?

[tex]

Jessica,

Yes, red meat is OK. A few of us have problems with beef, when we are reacting, but that's not a common sensitivity. The main thing it to make sure that none of the meats are injected with any solutions by the processor. There's a lot of information on diet on this board. Here's a detailed description of the elimination diet:

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

Good luck with your program.

Tex

[tex]

Hi Sellis,

Welcome to the board. Sorry to hear that you're back in a flare. Lettuce is probably the single most irritating vegetable available, for anyone with MC, so it's not surprising that it would cause problems if your gut is still sensitive.

It's possible that you might only have drug-induced MC, and you don't have any true food sensitivities, (raw vegetables and fruit are irritants to the colon, they're not actually food intolerances, in the sense that they do not trigger an autoimmune reaction - instead, they irritate the colon, and cause an existing flare to continue, or make it worse.

For most of us, though, when the genes that predispose to MC are triggered, the genes that predispose to food sensitivities, are also triggered. Because of that, most of us are sensitive to gluten and casein, and at least half of us are sensitive to soy and all legumes. Some of us have various other food sensitivities, such as eggs, yeast, corn, etc. These are true food sensitivities, in that they trigger an autoimmune reaction, if we eat them.

In order to determine whether or not we're sensitive to those foods, many of us order tests from Enterolab, located in Dallas, TX. They have the only test that is sensitive enough to reliably and accurately detect the type of food sensitivities that come with MC. Also, their anti-gliadin antibody test is so sensitive that it can detect celiac disease several years before it develops to the stage where it can be detected by the classic celiac blood tests. Their testing is based on stool samples, (because that's where the antibodies are generated - they're not generated in the blood). They also offer a gene test, based on a sample of DNA material that is collected in the mouth, by rubbing a cotton swab inside the cheeks. Their gene test costs about half of what competing labs charge, and their test results are just as accurate, (it's a Red Cross test). If you would like to see test results for some of us, you can see those here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

As to why you had a relapse at this point, after doing so well on such a simple treatment plan, I would guess that you are probably sensitive to at least gluten and casein, but initially, your sensitivity was in the early stages, and you were not producing enough antibodies to trigger a fully-developed flare. By continuing to eat those foods, though, (gluten, and casein, and possibly soy), your sensitivity to them continues to increase, so that now, you are reacting to them more severely. The reason why I can be reasonably sure that you are sensitive to these foods, is because if you were only sensitive to NSAIDs, then after you stopped using them, your gut should have healed, and if that had happened, you would not have reacted to a little irritation by raw fruits and vegetables in your diet, at this point in time. Obviously, your gut never healed, suggesting that you are continuing to consume foods that trigger inflammation, (by means of an autoimmune reaction). Only certain proteins can cause an autoimmune reaction - fruits and veggies cannot trigger an autoimmune reaction. Do you see what I'm saying? Fruits and veggies can prolong a reaction, by irritating the lining of the colon, but they cannot initiate an inflammatory response, (by your immune system) - only proteins such as gluten, casein, soya, zein, (in corn), avenin, (in oats), albumin, (in eggs), etc., can initiate an inflammatory reaction.

Here's a link to Enterolab:

http://www.enterolab.com/

Again, welcome aboard, and please feel free to ask anything.

Tex

[sellis]

Thanks for your reply, Tex. I am amazed at how much you know about this illness. You are an incredible resource for me and others at this site. I did neglect to say that I did take an NSAID at the beginning of this trouble. I was desperate because I had such a horrible headache. So that had to have played into the situation. I have taken anti-diarrhea drugs today and am eating very carefully. So far I am much much better. I'm keeping my fingers crossed, and I'm vowing not to resort to taking NSAIDs again!

I'll let you know how it goes.

[tex]

Thank you for the kind words. I'm very fortunate to have many, many excellent teachers - all the members of this board, who are willing to share their experiences and their knowledge, for the benefit of all the rest of us.

Acetaminophen, (Tylenol), is not an NSAID, and therefore it will not trigger an inflammatory response. Many members report than it does not seem to help them when they're in pain, but I found that if I took a full dose, (2 full or maximum strength tablets or capsules), with a meal, (at least a small amount of food, if taken between meals, or during the night), and so long as I took it while the pain was still in the early stages of development, it worked pretty well for me. If I waited until the pain was unbearable, or if I took the product on an empty stomach, it often wasn't adequate. For the severe type of migraines or headaches, body aches, etc., that often accompany MC, I usually had to repeat the dose at the labeled recommended intervals, in order to maintain control, (not to exceed the maximum allowed daily dose, of course).

Narcotic-based painkillers can be used, also, without aggravating the MC.

And yes, please keep us updated, because accurate data from members who have drug-induced MC, and who are not sensitive to gluten, casein, etc., are hard to come by. Most members who do not have food sensitivities, tend to stop posting soon after they discover that simply avoiding the drugs that caused their MC, will resolve their symptoms, and allow them to remain in remission. We often wonder how they are doing, after months and years have passed by. Of course, that applies to members who have food sensitivities, as well. It's always great to hear from them, later, as well.

And, of course, many members never post, and countless more individuals never even register, but they are able to find the information that they need, and they're able to resolve their symptoms. Of course, we're unable to learn from their experiences, if they never post. Over the years, a few members who never posted on the board, were kind enough to relate their stories by e-mail, and for that, I'm very grateful.

Best of luck with your treatment.

Thanks,
Tex