Flares

[KDarby]

I am feeling so hopeless. I have been on budesonide three times and each time my CC comes back with a vengeance. My doctor refuses to use it anymore as my CC is steroid dependent. People have asked me multiple times if I am pregnant with how bloated and inflamed my stomach is. I have not had a normal BM in forever. I started seeing a naturopathic doctor and he has me on probiotics, turmeric, boswellia, vitamin D3, multivitamin, glutamine, slippery elm. It is not working. I’m still just as bloated as before. I’ve tried cutting out gluten and dairy..no change. I’m losing my mind. If another person asks me if I’m pregnant I’m gonna lose it. I’m 30 years old and trying to get through nursing school and this is debilitating. The next stop for medication through convention means is Imuran. The side effects of it is terrible and can even cause cancer. I def don’t want to get a worse problem from trying to fix an already bad one. I’m just at a loss. Help.

[tex]

I’ve tried cutting out gluten and dairy..no change.

Well, you've defined the problem with that statement. Please correct me if I'm wrong, but you sound as though you don't believe the diet changes will actually work, and so you probably halfheartedly tried those diet changes for a few days, and sure enough, it didn't seem to help, so you went right back to eating gluten and dairy products. But you will never get to remission like that. When you start the diet, you have to stick with it for months in most cases, before you will see any benefits.

Gluten antibodies have a half-life of 120 days, so it usually takes at least six weeks of meticulously following the diet, and in many cases, months, in order to reduce our antibody levels enough that the inflammation that causes microscopic colitis will be reduced enough to begin resolving our symptoms. A few of us have to follow the diet for six months to a year or more, before we reach remission. But we do reach remission. And you may have to avoid other foods also, because about two thirds of us are sensitive to soy and all its derivatives. Many of us are sensitive to chicken eggs. And unfortunately, we have to avoid all of those foods, not just some of them, if they're causing our immune system to react. The bloating is an obvious indicator that you're reacting to gluten.

Yes, most of the safer medical treatments for MC are only temporary. So really, controlling MC by diet changes is the only practical and safe way to go about controlling the disease for the rest of our lives.

I hope this helps.

Tex

[KDarby]

Thank you for your quick reply. Today has been a bad day in my head. So, I just recently seriously started with the gluten-free, you are correct in your statement there. I was under the impression I didn't ever have a gluten sensitivity, so I thought it was pointless. However, after seeing a naturopathic doctor I am learning more things. Also through this website. I did cut out dairy for the most part, but realized the protein powder I was consuming has casein and isolate in it. I also was eating yogurt. I did those things because I began to work out after weight gain from budesonide and needed to supplement my protein intake to keep up with my body's needs. I have since stopped all dairy, including the protein and ordered a GF, DF, SF protein powder to try. I also didn't realize the eggs were a problem. So....I am hopeful now after learning if I stop these things I can regain some sense of normalcy....my other question is this..what do you think about the supplements? He also suggested i take megaspore probiotics ..they will be in tomorrow..I am scared to add anything that will make this worse...

[tex]

Your fears are well-founded. Most naturopathic practitioners attempt to treat microscopic colitis by throwing all sorts of supplements at it. But we've found that when treating MC, less is more. In other words, the simpler our recovery diet, the faster we tend to recover. There's always a risk that one or more of those supplements will prevent us from ever getting to remission, and they almost never help us to recover faster. And instead of protein powder, we're almost always better off getting our protein from real meat, not from some highly processed commercial product.

Tex

[KDarby]

It is a rather daunting thing to think about having to eat bland food for years before seeing any results. How on earth does anyone do this diet modification successfully? What is eaten in for snacks when you’re hungry? Between the meals of chicken and veggies? This is all just so overwhelming and frustrating.

[tex]

You're looking at this from the perspective of someone who's limited to the diet you had previously, minus the food sensitivities that you need to eliminate. But that's not the true situation. EnterroLab tests only about 15 or 16 common foods. They do that because these are the most likely foods to cause MC patients to react, and by eliminating the unnecessary task of testing for foods that don't generally cause any food sensitivities, they can keep the cost of the tests down to a reasonable amount. There are literally hundreds, maybe thousands, of foods that they don't test for sensitivities. Virtually all of these foods are likely to be safe for most of us. Yes, there are a few exceptions for certain individuals who are extremely sensitive, but for most of us, this arrangement works very well.

Therefore, if you look at this from an open-minded viewpoint, you can always find more than enough food options to satisfy any cravings. For meats, all of the wild type meats should be safe. That includes, for example, duck, goose, pheasant, quail, rabbit, turkey, venison, antelope, lamb, goat, and many others. Shellfish such as shrimp, prawns, oysters, clams, mussels, octopus, etc., should be safe, also. Bison are an exception, because over the years their DNA has become diluted with the genes from domestic cattle. There might exist a few purebred bison in Canada, yet, but there are none in the US.

There are a number of vegetables that have been shown to be safe for most of us, and those include squash, beets, carrots, green beans, cauliflower, and a few others. Foods such as broccoli and crucible vegetables such as cabbage are mostly safe, but because they cause the production of gas when digested, It's usually best to avoid them into you're further along in your recovery.

Members who recover relatively quickly, are those who keep an open mind, and are willing to be innovative enough to select a bland simple diet consisting of a few foods that avoid all their sensitivities, early on. Forget about a balanced diet, because it's not even possible to absorb the nutrients from a balanced diet until you stop the information that's causing the MC. After you been in remission for a while you can slowly adjust your nutritional balance to take care of long-term needs.

Over the years, we've seen hundreds, maybe thousands of new members who claim that there's nothing left to eat in our diet. It's a very common complaint. But it's simply not true. There are always plenty of choices for safe foods to eat. We simply have to be open-minded enough to find them.

I hope this helps.

Tex

[KDarby]

Okay Tex, so I am embarking on this with a whole new mindset..one of hope. I have started a GF,DF, egg-free diet. It hasn't been long..but I am going to do short course of budesonide for 4 weeks, taking as few of the 3mg capsules a day as possible (ordered 3x/day), while the gluten leaves my system..I am wondering how long it can take...as I am still having some boating and WD even though I am not ingesting gluten...are we positive that gluten is the true source? Can the diet changes catch up with a boost from the budesonide? Theres so many questions...I've also asked my doctor about LDN....haven't heard back from him about it yet.

[tex]

Are you sure that you're not sensitive to soy? I can't tell you how long it will take for the diet to work for you. That depends on your current antibody level, the total amount of damage caused by gluten to your intestines, and your ability to heal. Most of us see some improvement within a month or so, but it may take longer to gain complete remission. Some see remission within a few days, while some require over a year. There are too many variables for me to make any specific predictions on your recovery time. If you are serious about wanting to recover, just stick with the diet, and don't worry about how long it takes. I can't be positive about anything, I can only advise you based on our past experiences. And yes, whether you want to believe it or not, you're gluten sensitive, if you have MC. That doesn't mean you have celiac disease, but it does mean that you will have to be just as strict about avoiding gluten (as a celiac), if you want to get better.

I don't understand what you mean by, "Can the diet changes catch up with a boost from the budesonide?" The budesonide will only mask your symptoms and make life more pleasant. It will not heal your gut. The diet changes will heal your gut.

Taking less than a full dose of budesonide initially, may not bring relief from your symptoms, unless you're more sensitive to budesonide than the average individual, Taking a corticosteroid is not the same as taking an aspirin. It's a prescribed treatment regimen, based on normal responses. Reduced doses won't work for most people when first starting a treatment. But that won't affect your recovery time, it will only affect your clinical symptoms.

Tex

[KDarby]

I’ve been on budesonide a few different times now so this time the doctor only gave me a short 4 week dose. What I meant by diet changes “catching up” is that I am still having the diarrhea and just started the diet changes. I know budesonide is a bandaid temporary fix but was asking if taking it while still changing my diet if it would help my gut along in the healing process , or at least stop my body from reacting so vehemently to food and allow the lining to calm down and heal while not reintroducing trigger foods...I did not want to be on budesonide again but the thought of having to deal with the diarrhea on top of all that I already am dealing with seemed too much. So I figured maybe a short course while implementing long term true healing couldn’t hurt. I’ve seen here that some people end up taking low doses or skipping days towards the end of their courses..so was just curious.. I have a pretty good grip on most pharmaceuticals used in this condition (and in general) as I’ve tried a good bit. The LDN I was asking about was the low dose naltrexone. But all of the above I can search the forum more about that topic specifically.

I have been reading a lot about gluten sensitivity from this and there’s just so much I didn’t know. I wasn’t born celiac disease but gluten sensitivity so much more than that I’m finding. I can’t say with any certainty that I’m not allergic or sensitive to anything at this point bc I just don’t know. I never have been but I believe the point I’m at now I’m probably reacting to pretty much anything. Which is one reason I’m hesitant about the enterolab testing. I also don’t have a couple extra hundred dollars to spend on testing. This is all new information to me as my doctor did not offer me this much info into my condition. Although gluten was one of the first things he asked me about, when I said I didn’t think that was it bc I never had a problem it wasn’t really discussed more.

So while I want to be as proactive as I can, I also just want to be very well informed and be certain of things before I radically make any drastic changes bc my personality can be one of “all or nothing” and that isn’t always the healthiest for me. That’s all :) I appreciate you tolerating all of my questions. And I truly believe that I’m going to find the answers and the healing that I desire. Just gotta keep trudging.

[tex]

The main reason most people taper their budesonide dose past the end of their prescribed treatment is because that helps to prevent the rebound in mast cell numbers that normally occurs whenever a budesonide treatment is ended. A relapse occurs 85% of the time whenever a budesonide treatment is ended, according to published research. The reason that happens is because according to my research, corticosteroids suppress mast cell numbers. Therefore my theory is that it's only logical that mast cell numbers will rebound when a treatment is ended. Tapering the dose to extremely low levels when ending a treatment should help to minimize that rebound. That's why most members here do that extra tapering when ending their budesonide treatment. And that seems to work well for most people.

Published research proves that every time someone stops and restarts a corticosteroid treatment, the medication becomes less effective, until eventually it will not work at all. That's why smaller starting doses often won't work for repeat treatments. Yes, the budesonide should make life more pleasant while the diet is healing your gut, and it shouldn't slow down your recovery.

When I was learning to recover, about 20 years ago, like you, I seemed to react to anything and everything. I cut gluten out of my diet, and after a couple of months went by, my immune system became able to respond to other food sensitivities. So by keeping a journal of everything I ate, and how I reacted, I was eventually able to track down all my food sensitivities. But that took me almost a year and a 1/2. Now that we know which foods are most likely to cause reactions for most of us, we can cut out all those foods at the beginning, and eliminate most of the time that it took me to get to remission. We can cut the time from a year and 1/2 to a month or two in many cases. You don't need to spend money on any tests if you're willing to avoid all of the foods that are known to usually cause problems. Then, after you reach remission, if you want to try adding some of those foods back into your diet, you can test them one at a time, to see if you can tolerate them, before adding them back.

This treatment program is not endorsed by the medical community. The reason we use it is because the medical approach doesn't work for us, so we developed a treatment program that actually does work, with or without the use of medications. Each of us ends up developing our own diet that specifically caters to our own food sensitivities, and our own lifestyle. And as long as we continue to follow it, making little tweaks occasionally, as needed, it will allow us to keep the disease under control for the rest of our lives.

I hope this helps.

Tex