New to the Group

Post by **tex** » Fri Oct 14, 2011 12:33 pm

Hi Rhyes,

Welcome aboard. Spontaneous remission is possible with this disease, and a few people are lucky enough to sometimes enjoy long periods of spontaneous remission, but for the majority of us, that never happens. As Sara suggested, the length of time that you had been taking Lialda was pretty much in the right time frame for it to start working. It takes a while for the 5-ASA meds to work, for most people.

Also, in some cases, a drug can bring the patient to the brink of remission, but not quite tip the balance, and in those cases, another drug, or even some physical event, can be all that it takes to complete the remission. For example, for some people who have been taking Entocort, without success, a single dose of prednisone has been known to bring remission in less than a day. Obviously, that doesn't work for everyone, but it works often enough to be worth a try in refractive cases.

I get the impression that you don't want to change your diet, (as if any of us do), and if the Lialda works for you, you may be able to continue to eat whatever you want, so long as you take the drug, (you may even be able to reduce the dosage rate), but if it stops working, the most practical solution is to prevent the inflammation that causes MC from developing in the first place, and that means making diet changes, of course. Drugs can suppress the inflammation that causes MC, but they can't prevent it from reoccurring - only changes in what you are ingesting can do that, and as Sara mentioned, that includes drugs as well as food. Some drugs are notorious for causing MC, but gluten is the most common trigger.

In general, exercise is beneficial for someone with MC, so long as you don't overdo it when you're completely wrung out by the symptoms of the disease itself. We have several other members who are marathon runners. None of them post regularly any more, though - presumably, now that they have their symptoms under control, they're too busy running. Good luck with your treatment, and please feel free to ask anything.

Tex

Rhyes · Post by **Rhyes** » Fri Oct 14, 2011 12:51 pm

Thank you for your advice. So I'm guessing spontaneous remission doesn't mean I'm cured. I thought that it would be to good to be true :) I'm so trying to enjoy this, and I am, however I'm worried for when it will return. I'm still resigning myself to the fact that I will have to deal with this for life. I am absolutely willing to make diet changes. I've had a Celiac Panel blood test done, but haven't heard the results from my Gastro yet. I have an appointment on November 14th, but may call to get the results beforehand. I only have about two more weeks of Lialda. My Gastro was nice enough to give me free samples. They wrote me a prescription for Busodemide (sp?), which is a steroid, but I could not afford it. It was $1,100.00 and unfortunately I don't have insurance. Because my symptoms have disapeared for now, I assume I don't need to take it. I've read some bad things about steroids.
Well, I'm going to enjoy this while it lasts. Thank you for the info on exercising. I was worried that it would worsen this condition. Again, I'm glad I found you guys :) Finally, people that understand.

sarkin · Post by **sarkin** » Fri Oct 14, 2011 1:30 pm

My spontaneous remission lasted a surprising length, but nooo, I wasn't cured (and MC came back harder on the next go-round). However, the timing of your lucky break could not be better - here's hoping you can use the Lialda, some diet change, and occasional well-timed Pepto to ride this 'gift' of unexplained remission. (Budesonide a.k.a. Entocort is a wonder drug for many here who have tried it, and because it's designed for enteric release, it has a much lower steroid effect on the body, outside the gut where its work is done... but it's still $1100, which is more than my car is worth at the moment, probably with my laptop thrown in).

The Celiac blood tests are notorious for false negatives - many of us here have ferocious gluten intolerance, as bad as any 'true' celiac, but without that diagnosis. Experts are aware that their ability to diagnose it is terrible, but they still pish-tosh folks giving up gluten without them officially diagnosing it - which they fail today about 90% of the time. That's *their* guess about how much celiac is under-diagnosed, btw - not my mud-slinging.

Many of us here have confirmed gluten intolerance via tests at enterolab.com; some figured it out on their own. I dropped gluten like a hot potato the day I found this site, and never looked back - and then I did opt for the Enterolab tests, which confirmed both gluten and dairy intolerance. Almost all of us react to those two, and about half react to soy. Some of us are following some version of 'paleo' eating (that's my plan), while others are adapting non-gluten grains and flours (or good GF products) where we used to use the regular varieties. So whichever path your shopping and cooking may take, you'll find lots of help here - from recipes to meal suggestions to brand names of useful, safe foods.

Once you get the routines adjusted, the "for life" aspect gets easier (like everything, I guess, with practice). We were "for life" in a sense on our old routines, too, just without thinking of it in those terms.

And of course on the days when it doesn't feel easier, you'll have plenty of sympathy. As Tex says, no one really understands MC who doesn't have it themselves.

Hope you're feeling better already, and hope you're able to parlay that 'mysterious' remission into the real deal. Fingers crossed for more luck to you in healing,

Sara

Post by **tex** » Fri Oct 14, 2011 1:46 pm

Unless you have fully-developed celiac disease, those blood tests will always be negative. They won't detect the kind of gluten-sensitivity that we have. The antibodies are produced in the intestines, not in the blood, and only a sensitive stool test will detect them reliably. The only laboratory in the world that offers accurate and reliable tests for food sensitivities is Enterolab, located in Dallas, TX.

http://www.enterolab.com/

There is a huge difference between budesonide and conventional steroids. Only about 15% of budesonide is absorbed into the blood stream when delivered in enteric-coated capsules, so the risk of systemic effects is only a small fraction of the risk with the other corticosteroids. Many members here have been taking Entocort for years, with no side-effect issues. There's no way you could do that with prednisone, or any of the other conventional cortosteroids. And, it's just as effective for treating IBDs as prednisone, for most people - it just avoids most of the side effect issues.

Many of the members here, (who don't have insurance, and a few who do), order their generic budesonide from the online pharmacy at the link below. A three-month supply costs $121.50 plus shipping. It works just as good as the name brand stuff. Domestic drug prices in this country are really a ripoff.

https://www.alldaychemist.com/search.ph ... uery=budez

I agree - you have to actually have this disease, to truly understand it.

EDIT: I see that Sara has already posted most of what I covered in this post, while I was still writing, but I'm a bit short on time this afternoon, so instead of rewriting my post, I'll just add this note and apologize for the redundancy.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Fri Oct 14, 2011 2:38 pm

Welcome Rita and Rhyes

Tex, do we ever truly understand this disease?

I see it like the relative that you dont like, but you have to let them into your home and treat them like a guest, but the whole time through gritted teeth...

Rhyes · Post by **Rhyes** » Fri Oct 14, 2011 2:43 pm

Thanks again Sara and Tex :) I will probably cut Gluten out of my diet. As stupid as this sounds, I will sure miss my pretzels and flat bread, I love them. I do hope that I'm not lactose intolerant though. I love cottage cheese and eat it almost everyday. In fact, for the past several months, my diet has been somewhat boring. For breakfast I eat a rice cake with peanut butter and a banana sliced on top, for lunch I usually have some yogurt and pretzels, and for dinner I usually have a bowl of cottage cheese with pretzels (see what I mean about the pretzels). Since my belly has been better this past week though, I have been eating more meat, chicken breasts mostly. I also eat canned Tuna and Salmon. I wanted to ask you if coffee is bad for this condition? I drink coffee throughout the day. Also, spinach really seems to set me off, along with lettuce and beans, sometimes onions. I ask this now because tonight is card night with my family and we plan on eating black beans and chips and swedish meatballs with chopped onions. It's the first time I will beating these foods since last Saturday when this small miracle happened :) I'm trying so hard not to obsess about this coming back. I've read and heard that your state of mind also has something to do with this. I apologize for all of the questions, but to write to people that know what I'm talking about is such a revelation for me today. You know, even the Gastro's don't really know.

sarkin · Post by **sarkin** » Fri Oct 14, 2011 2:57 pm

Rhyes, I know that feeling - when I first got here, I couldn't believe I had landed among "my people" (and folks who knew far more than I did... I truly believe that this forum saved me months, at least, of wandering in the dark and making things worse instead of better). And you're right, the GI docs don't know - you will soon be the world's expert on your own version of MC, which will have a lot in common with the rest of us, but with your unique experience.

For a lot of us, fiber (and especially lettuce - and most especially iceberg) is extremely irritating, until our gut has done some real healing. So peeled, cooked (even overcooked) veg is better than salad, and starting with more modest quantities can also help. Sounds to me as though you have a pretty good idea of what's triggering you; a food & symptoms diary can help ferret out the sneakier food gremlins.

I believe that protein is super-helpful for healing - I lost a lot of muscle mass, and maybe it's a coincidence, but when I upped my protein, I stopped my weight loss, and began rebuilding muscle, and started to feel better in general. (It could also be that I had been GF and dairy-free for a few weeks more - it's not a simple matter of "more meat" by any means.)

Crunchy things turn out to be among the hardest to give up, and the most missed. Let me introduce you to my new best friend, the Potato Chip... Check the ingredients on your rice cakes - but rice is typically the easiest grain to tolerate, for many of us. There are no universal truths, but at least the odds are in your favor... There are some nice rice crackers, too (Edward & Sons Rice Snaps are pretty good - some flavors have soy, which many of us also avoid, but you're about to become a real label-reading expert).

Some of us do better with almond butter than peanut butter - also worth trying, cashew butter, sunflower-seed butter, etc. What you enjoy, as well as what you tolerate well, is very individual.

Your ingredients for card night - well, it just depends... I have done pretty well with plain corn chips (no wheat, obviously!). If your Swedish meatballs contain flour, that's a risk... Anything you can make/buy/bring/put center-stage that you are reasonably confident is safe? (Potato chips could be your new best friend, too...)

I think you're heading in a good direction and have gotten off to an excellent start. As Gabes, who just posted earlier, always says - there is no right or wrong way with MC, just *your* way.

Post by **tex** » Fri Oct 14, 2011 4:32 pm

Aged cheese and yogurt contain very, very little lactose - so little that even if you were lactose intolerant, it shouldn't matter. Lactose is not the real problem for most of us - it's casein. Lactose is a sugar, and casein is the primary protein in all dairy products. Only proteins can cause an autoimmune reaction, and autoimmune reactions are what cause the inflammation associated with MC. The worst that a sugar can do is to not digest properly, and just pass into the colon where it ferments, causing gas, bloating, and promoting the growth of undesirable gut bacteria and yeast. It cannot directly initiate an autoimmune reaction, however, uncomfortable as the symptoms from lactose intolerance might be. It might indirectly cause an inflammatory reaction, however, if it goes on long enough that the bacterial imbalance gets completely out of hand, (disbiosis), and/or a candida yeast overgrown occurs.

Tex

draperygoddess · Post by **draperygoddess** » Sat Oct 15, 2011 5:42 pm

Tex,

I had never heard that bit about autoimmune reactions only being caused by proteins. I am lactose-intolerant but not casein-intolerant. Does the Enterolab testing check for both?

Post by **tex** » Sat Oct 15, 2011 7:59 pm

Cynthia,

All allergies are triggered by certain specific proteins, also.

Enterolab only tests for casein-sensitivity. Casein is the primary protein in milk, and it's the one that most people react to, (if they're sensitive to milk or dairy products). It's possible to be sensitive to other proteins in milk, (and the various other allergenic foods, also), such as whey protein, for example, but every test for any given antibody has to be very specific, (in order to be accurate), and so their casein test will not detect any other antibodies. They could certainly develop a test for other proteins, but the cost would be additive, and so only the most common allergens are normally tested, in order to keep the cost of the tests at a reasonable level. Since there's no such thing as antibodies to lactose, there couldn't be a similar test for lactose intolerance, anyway.

Lactose intolerance is merely the result of the unavailability of adequate amounts of lactase enzyme in the small intestine, which causes a digestive failure, (lactose is simply a disaccharide of galactose and glucose), meaning that the unsplit disaccharide passes into the colon, where it is fermented by bacteria, producing gas and bloating, and usually cramps. A lactose intolerance test is very easy to do. The patient drinks a measured amount of lactose, and the doctor monitors the response with a hydrogen breath test, at regular intervals, (or, less commonly, a glucose blood test).

Tex

draperygoddess · Post by **draperygoddess** » Sat Oct 15, 2011 9:12 pm

Okay, sorry to hijack the thread, but this is something I hadn't heard before. From what you're saying, Tex, the lactose can cause bloating and discomfort, but it wouldn't be the cause of D? I cut out both gluten and dairy about two months ago, and after being GF/DF for two weeks or so (and seeing some improvement), I tried eating Kozy Shack GF rice pudding. The first time I ate it I had quite a bit of belly pain. The next time I was in the bathroom within the hour. I figured it was the lactose and quit eating it. I also have pain and bloating from soft cheeses, but I have been eating hard cheddar and Parmesan/Romano (in relatively small doses) and haven't noticed any reaction.

The reason I ask is that I am debating whether or not to do the Enterolab testing--I'm fairly certain about the gluten, and my main concern is whether this is something my children might have to deal with, so I know I want to do the genetic test, but there's a big difference in the cost of doing just that or the whole panel. (Still waiting on the second opinion on my biopsies from Vanderbilt--the GI says it could be 3-4 weeks before we hear anything.)

Post by **tex** » Sun Oct 16, 2011 7:32 am

No, no - I'm sorry, I just failed to mentioned the D. Lactose intolerance will definitely cause D. The distinction that I was trying to make is that lactose intolerance will not directly cause an autoimmune reaction. It almost always does cause D, though.

Tex

sarkin · Post by **sarkin** » Sun Oct 16, 2011 9:34 am

Cynthia,

I think it's a great idea to do the genetic test. They have changed the panels a little since I ordered. I did testing for eggs, soy, yeast and dairy, as well as gluten. I also added the "11 other antigenic foods" panel, which was less helpful overall. I'd recommend skipping that (I know you didn't even say you were considering it). I think the MRT test would provide far more powerful information for the money.

For some of us, the casein reaction is as spectacular as gluten. For others, it's more subtle, so you could be reacting without the big D (frustratingly). It's a pretty common reaction, and luckily a pretty easy food to avoid (much easier than gluten). Your body may be so relieved not to be inundated with gluten, that it hasn't gotten around to complaining about its 2nd-least-favorite food irritant (a not-so-scientific way of describing a phenomenon that has been observed by some here - I tried to drop all risky foods at once to avoid having to go through those steps one by one).

I guess I'm saying, you can test for dairy, or you can figure it out on your own. Tolerating hard cheeses at the moment may or may not be the "answer" for whether or not you react to casein, in the long run (but here's hoping!).

--Sara

draperygoddess · Post by **draperygoddess** » Sun Oct 16, 2011 3:04 pm

Tex and Sara,

Thanks for the clarification! I am still hoping that casein isn't one of mine, since I've never had to deal with "battery acid." So, still leaning toward doing the "big 4" panel and the genetic testing.

sarkin · Post by **sarkin** » Sun Oct 16, 2011 5:31 pm

I think "Big 4" plus genetics is a really good choice - the most important info, and excellent value for the money (hopefully leaving some room in the budget for a little pantry adjustment, if necessary!).

Keep us posted - hope you get your wish about casein, and sure hope you never experience the battery acid D with that or any other food.