Not Maintaining on Entocort

[Gloria]

I've decided that I need to start a different thread. It's misleading to say I'm weaning off Entocort.

I'm feeling pretty discouraged right now. I just had another round of explosive D. I made my own rice milk on Saturday, so I'm not drinking the Hemp milk nor the Rice Dream milk anymore, but I'm still flaring.

I really don't know what else to do. These are the foods that I eat regularly:

Rice products (bread, cereal, pasta, milk, rice cakes, plus rice itself)
Potatoes (mashed, baked, pan-fried, chips, in soups)
Banana
Chocolate (3 small squares every day)
Crystal Light
Fruit juice each morning and fruit at lunchtime
Meat and vegetables.

I'm starting to wonder if I've built up an intolerance to rice because I've eaten it so frequently. Is that possible? I have such limited options for breakfast because of the egg intolerance. If I have to eliminate all forms of rice, too, I don't know what I'll eat. I wouldn't be able to drink any form of milk, so there goes cereal. That leaves waffles and pancakes, without eggs or rice flour, of course. I eat potatoes O'Brien on the weekend, but have no time to prepare that on a workday. I eat potatoes frequently, too.

I know some of you are going to tell me to give up the chocolate. I know I should try to eliminate it for a couple of weeks. I did once before I was Dx'd and of course, I didn't see any change. It would be difficult, but I could try eliminating it for a time. If I'm intolerant to chocolate, I think I'll roll up and die. It's my only food pleasure. I don't drink, so chocolate soothes me at the end of the work day. When I taught, I used to stand at the blackboard solving math problems but I'd be thinking about how I could eat my two pieces of chocolate when I got home.

The Crystal Light will jump out at some, too. I could try drinking fruit juice, but that has fructose in it, another potential problem. I could go with water or sugar-sweetened Kool-Aid. I don't drink coffee or tea.

I suppose I could increase the Entocort from 6 to 9 mg., but I suspect I'm becoming resistant to its effectiveness. I could call my GI, but I'm his second MC patient, and he doesn't really know what to do with me other than give me Entocort or Prednisone. He doesn't want to discuss food as a possible cause.

Would Dr. Fine or another doctor be able to recommend someone in the Chicago area who is familiar with MC? Would it be a good idea to contact a celiac group in the hopes they know of someone? Any other suggestions?

Gloria

[Matthew]

Gloria

I only looked at one variety of Crystal Light. I assume they are all similar. The lemon one contains

Ingredients: CITRIC ACID (PROVIDES TARTNESS), POTASSIUM AND SODIUM CITRATE (CONTROL ACIDITY), ASPARTAME (SWEETENER), MAGNESIUM OXIDE (PREVENTS CAKING), CONTAINS LESS THAN 2% OF NATURAL FLAVOR, LEMON JUICE SOLIDS, ACESULFAME POTASSIUM (SWEETENER), ARTIFICIAL COLOR, YELLOW 5 LAKE, BHA (PRESERVES FRESHNESS).

Many of us have found that citric acid is something to stay away from. Since it is listed first I assume it must be quite high in citric acid.

Aspartame is an artificial sweetener that many here have had problems with. I stay away from it unless I want to be very sick. Which I don't :-)

Early in my recover I discovered fresh fruit was a far better choice than fruit juice.

Most chocolate contains soy lecithin. Soy sets me off faster than anything. Can you find a chocolate without soy lecithin.

What meat do you eat. Many here have found that injected meats create problems.

What vegetables do you eat. Many have found that the niteshades are a problem. Tomatoes, Potatoes, Eggplant...

Lots of high carbohydrate food were not the best thing for me during my recovery.

Just some ideas

Hope this helps

To your continued recovery

Matthew

[Gloria]

Matthew - thank you for your thoughtful response.

I probably should stay away from all liquids except water for a while. My home-made rice milk doesn't have much nutrition in it anyway.

I've been careful to select chocolate with no soy or dairy. The one brand that I've found is Ritter 71%.

I've purchased Boar's Head deli meat, but haven't paid much attention to the roasts and hamburger. My husband usually does the grocery shopping. I'll encourage him to read the packaging or displays.

I eat tomatoes and potatoes pretty regularly. It sounds like you're suggesting that rice is probably not the problem. I know that everyone is different and we all react to different foods. That's what makes this disease so difficult to pin down.

I think I'm going to have to get down to bare-bones with my foods for a while. I was hoping the Entocort would maintain me until summer when I'll be retired and have more time to devote to creating special meals.

Gloria

[tex]

Hi Gloria,

I doubt that rice is your problem. That would be extremely, extremely rare. Potatoes are also safe for most people - I don't recall anyone here who couldn't eat potatoes.

As Mathew mentioned, I couldn't eat anything with significant amounts of citric acid, (either natural or artificial), when I was still healing, without getting sick. That included fruit and fruit juice.

Also, as he mentioned, aspertame gives some people world-class D, even if they do not have MC. Crystal Light is made with Splenda, however, the Crystal Light mixes are made with aspartame.

You didn't say what kind of chocolate you are eating, but you list soy as an intolerance. Be aware that Karen, (moremuscle), was exactly in your position at one time, with explosive D, (except that she never took meds), until one day she discovered that the (safe) chocolate that she was eating regularly, contained soy lecithin, even though it was not listed on the label. When she stopped eating it, it took only a day or two to achieve remission.

It's the items we "know" are safe, that are the hardest to ferret out, when they're the problem.

Tex

[tex]

Gloria,

I see that you've named your chocolate as Ritter 71%. If that's Ritter Sport, it's made in Germany, and here's what their English label says:

Ingredients

Chocolate liquor, sugar, cocoa butter, natural vanilla.

cacao (or chocolate) liquor, cacao butter, cane sugar, vanilla

Allergen Info

This product may contain traces of peanuts, almonds, other nuts, wheat and milk products.


Here's what their German label says:

Ingredients: sugar, chocolate liquor, cocoa butter, lecithin (emulsifier), vanillin (artificial flavoring).

This is exactly how Karen tracked down the problem with her chocolate. The label from the country of origin was different than the U. S. label, but it was the same chocolate. Moral, you can't always trust labels, especially with products manufactured in foreign countries, because things can get lost in translation, and customs and laws are different.

Tex

[Becky]

Hi Gloria,
Hindsight...I'm pretty sure Crystal Light was a major player in my MC. I used to drink it more than water. I'd buy the packs at Costco. I love it! I've gone to pretty much herbal teas and water. How about a nice glass of water with a fresh lemon wedge in it or maybe some mint too? I know it's hard when things keep getting things eliminated from our daily intake. But this drink is natural. I feel better just knowing there's no "chemicals" going in.

[Gloria]

Thank you too, Tex. I can always count on you to respond.

I'm relieved to read that you don't think rice is the problem, either.

In the past week, I've eaten three servings of oranges, plus I've had cranberry juice for breakfast each day. Add that to the tomatoes in my salad and spaghetti sauce and I've probably had a lot of citric acid this week. I also take a daily multiple vitamin which contains vitamin C. Is ascorbic acid the same as citric acid?

I never considered that a manufacturer might not list soy lecithin on the label. Ritter sells many other chocolate bars which do list soy lecithin, so it seems they wouldn't leave it off this particular type. I wonder if Karen remembers the brand? I'm thinking that I could use some candy molds to make my own chocolates with Enjoy Life chocolate chips. Does anyone know if they are truly soy-free? The packaging claims they are.


Gloria

[Polly]

Hi Gloria,

I just had to respond, since you and I have the same genetic profile as well as the same basic intolerances. You and I are the only ones I recall who react to Pepto! Have you noted my list of other intolerances......notably chocolate, corn, tomatoes, citrus? Also eggs, which I forgot to list. I can do rice, but not much of it and not very often -I feel best if I eat no grains at all.

Some other food suggestions - for breakfast - leftovers from the night before, smoothies (blend up a banana, frozen blueberries or strawberries, a little apple juice), cream of rice or buckwheat with nuts/raisins, a little maple syrup, a baked sweet potato. Lunch - salads with meat, tuna, fowl, nuts, dried fruits. Guacamole. Olives. Homemade soups using Imagine broths (the only ones I have found without yeast).

It might make sense for you to try avoiding everything that I have to to see what happens. .....at least for a month or so. We can share menu ideas if you like. There are only 3 safe Boar's Head meats for us - the 40% reduced sodium turkey, a roast beef one and the prosciutto. None of the other hams is safe if you have the same intolerances that I do. Re the Crystal Light - some citric acid is made from corn. Also, I don't do well with artificial sweeteners.

Don't be discouraged. Have you checked out Cordain's book "The Paleo Diet" yet? It was what most helped me with the diet I needed to be on (as well as the wonderful folks here).

From one who has walked in your moccasins (genetically at least - LOL!),

Polly

[Gloria]

I just read your second response, Tex. I can't believe that they have two different lists of ingredients. Yikes! I've been so careful to read all the labels, too. It's been the only chocolate bar I've found without both dairy and soy.

Becky - thank you for your input. I think I can live with drinking water instead of Crystal Light. I used to before aspartame arrived. I've never been a big on soda. You're probably too young to remember, but all dieters were thrilled to finally have a decent-tasting replacement for saccharin.

Gloria

[tex]

Gloria,

The brand was Lindt. Try the one she recommends as safe:

http://www.perskyfarms.com/phpBB2/viewt ... =chocolate

In the feed industry, (which I am involved in, as a manufacturer), if a manufacturer makes a minor ingredient change, or the state regulatory agency imposes a label change requirement, a manufacturer is allowed to use up existing packaging before being required to revise their labels, in order to meet regulations. It amounts to a grace period, as a courtesy to the manufacturer, so that they don't have to interrupt production simply because of a minor technicality. Some manufacturers have been known to abuse this privilege at times. I'm not positive that this same policy is followed by FDA, but I'll bet it is, and I believe that was the case with the chocolate that was causing so much misery for Karen. The manufacturer had changed ingredients, (added soy licithin), but hadn't yet changed some of the labels, and were still using pre-existing packaging.

There's no guarantee that this is your problem, but in this game, you can't leave any stone unturned, because getting close only counts in horseshoes.

Tex

[Polly]

One more thing, Gloria, but I feel like I'm raining on your parade. I have tried every chocolate I could find without soy and dairy, and I still react. I guess it's the cacao bean itself, unfortunately. Let's hope we are not identical in all of our intolerances and that you can find a chocolate you can tolerate. Sigh.

Polly

[tex]

Polly,

Have you tried the one that Karen recommended in the link I listed in my previous post?

Love,
Tex

[Gloria]

Yes, Polly, I've read your list with one eye closed. I know that it's very likely that I'm intolerant to the same foods as you. I noticed that you didn't put eggs on your list, so I reasoned that we did have some differences, chocolate being the foremost. Now you've revealed that eggs are on your list. Say it isn't so!

I've checked out the Paleo Diet book twice, but each time have skimmed it. I think we come to these realizations and make changes slowly and reluctantly sometimes. Plus, it seemed like a lot of meat and vegetables which require more preparation time than I seem to have right now. I remember when forgoing gluten seemed like a huge sacrifice. What I wouldn't give now to have that be my only intolerance.

I didn't realize that not all Boar's Head deli meats were safe for us to eat. I'll also have to check which brands of broth I have. This is a full-time job in itself....

Gloria

[tex]

Gloria,

I forgot to respond to your question about ascorbic acid and citric acid. No, they are not the same thing, though they are both found in citrus fruits. In this country, virtually all citric acid is made from corn. Most ascorbic acid is apparently made in China, using glucose as a feedstock.

Vitamin C is okay, but citric acid is not, if you need to avoid corn.

Obviously, if you're going to need to avoid all corn, (which I did for several years), it's much, much harder than avoiding gluten, because virtually all processed foods contain either citric acid, corn syrup, (or HFCS), maltodrextrin, or dextrose, which are all corn derivatives. Most deli meats, for example, seem to contain one or more of these.

Tex

[Matthew]

Gloria

So many of us have found it to be a full time job and when it became a life style it became much easier with a lot more clarity about where we as individuals were going.

Even when my diet was not working 100% I found great joy that I could take the time to do something good for me, to pay attention to myself rather than all the other demands of the world. Some would call it selfish, some would call it narcissistic. In the end it resulted in a resolution.

Be good to yourself.

Take the time to make good things to eat for yourself. You are worth it.

In the end I can only be for others as good as I feel.

Love

Matthew