Newly Diagnosed and Overwhelmed

[Kimelizabeth]

So glad to have found this group. I was diagnosed this week with MC with mixed features of CC and LC. The PA of course had no information to share except that taking steroids or Lialda would help. She wanted to start me on Budesonide but that course of medication would cost me $1800 for six weeks since I have an HSA and have to meet the annual deductible so she instead called in Lialda and Glycopyrrolate.
I have been gluten free for about six weeks now and am noticing a slight difference. After reading many of the posts here I began my dairy free diet yesterday. I also have Hashimoto's and take synthroid for that.
I have been looking through the posts but can't seem to find any definitive information on the Lialda. Would love to have some feedback (good or bad) on how this medication has worked for you. I am scared to death to even take the first dose.
Thank you,
Kim

[tex]

Hi Kim,

Welcome to our Internet family. You seem to be off to a good start with your diet changes. Lialda is one of the newer formulations of mesalamine, and trial results show that mesalamine is effective at helping to suppress intestinal inflammation in roughly 50–60 % of cases. It's a reasonably safe anti-inflammatory medication, but those of us who are sensitive to NSAIDs tend to react to mesalamine also (IOW, in some cases it makes the symptoms of IBDs worse). If you have been able to get by without Lialda this long, if I were in that situation I would probably continue to do without it, but you should make your decision based on how debilitating your symptoms are.

I'm not a doctor, but I would be a bit apprehensive about taking Glycopyrrolate. The mechanism of action of that medication (drying out mucosal tissues) appears to be contraindicated for MC. Drying out the mucosa of the intestines is not going to eliminate the inflammation problem, and it can certainly cause additional problems since our intestinal mucosal lining is already hyperinflamed. It could cause some unpleasant side effects, but of course not everyone is affected by those side effects.

If you can already see some improvement from the diet changes, then you can expect to see additional steady (more or less) improvement as time passes. Your diet changes are treating the root cause of MC (by removing the sources of inflammation). Medications can help to suppress the symptoms, but they do nothing to actually prevent the inflammation from being regenerated. IOW, medications treat the symptoms, not the cause of the disease. Diet changes will eventually place the disease in remission, by eliminating the sources of inflammation.

I used diet changes alone to achieve remission (and maintain it), so I can't offer any advice based on personal experience with Lialda, but hopefully others here who have used it will see your post and respond.

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

Tex

[Kimelizabeth]

Thank you for the welcome Tex.
I agree with your assessment of the Glycopyrrolate. The side effects seem over the top and counter-intuitive and I will not be taking that medication.
Aside from the gluten and dairy free, are there any other diet eliminations I should entertain?
Kim

[tex]

If your symptoms seem to relapse, and you haven't accidentally been glutened, you might have to consider avoiding soy, because soy (and most legumes) seem to be the next most likely food sensitivity for members here. After that, eggs are a possibility. Other food sensitivities are less likely, but many of us are sensitivity to various other foods, and we have to track them down and eliminate them from our diet. Fiber is not our friend while we are recovering, so we have to minimize it, and any vegetables (preferably small helpings) should be peeled and over-cooked, to make them easier to digest. Fruit should be minimized (because of the sugars, which we have trouble digesting while our intestines are inflamed) and also well-cooked, and citrus fruits should be totally avoided (because of the citric acid). Bananas are usually OK for most of us, and their they're basically the only fruit or vegetable that we can tolerate raw (until after we are in remission, and then we can usually slowly add raw fruits and veggies back into our diet).

Many of us order Panel A1 of stool tests from EnteroLab in Dallas, TX, because those are the only reliable tests available for detecting the type of food sensitivities that we have with MC. These test results pretty much remove any doubts that might exist about whether or not we are sensitive to these foods. Many of us also order Panel C1 at the same time, because of the discount that's available if the tests are ordered together. Panel A1 tests for antibodies to the most common food sensitivities (with MC), gluten, casein (dairy), soy, and eggs. The C1 panel tests for antibodies to 11 other antigenic foods, including corn, oats, rice, beef, chicken, pork, tuna, almond, walnut, cashew, and white potato. Here's a link if you're interested:

Panel A1 + C1: Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel

It's certainly possible to track down our food sensitivities by trial and error testing. The stool tests just save a lot of time and remove a lot of uncertainty.

You're very welcome,
Tex

[Harperrice]

Hi
I'm on 9mg of Entocort for MC. I'm so confused about what I should eat. Anything makes me sick. I don't know what to do after the steroid of 8 weeks is over and the doctor isn't very helpful. Any thoughts.

[tex]

Hi,

Virtually all of us are sensitive to gluten (even though we test negative for celiac disease with the classic blood tests), and because gluten is such a powerful antigen, and the antibodies persist so long, it can make our digestive system react to almost anything or everything we eat, until we get it out of our system. For some of us, it can make us feel as though we are reacting to everything except gluten.

I responded to your post on the Main Message Board, and I added some additional information there.

Tex

[Gabes-Apg]

Harperrice
welcome to our group - apologies that you were Dx'd with MC and had to find us.

If you go to the main message board and read the posts aimed at newbies, and the subsequent discussions you will see lots of advice about what to eat (and what not to eat)
quite a few newbies have asked questions in the past week so browse through here and you will see info about eating.

We highly recommend an eating plan based on bland, well cooked, minimal ingredients to calm the inflammation...
remove major triggers such as Gluten and Dairy.
If you feel brave enough to embrace this, let us know and we can provide ingredient/meal ideas...

The sucky part of MC, is that there is no quick fix or guaranteed solution. what works for one person may not work so well for another. This applies for medications, foods, lifestyle influences etc. There is a bit of trial and error to figure out what is going to work best for you...
hope this helps