Not Maintaining on Entocort

[Gloria]

An update:
I've been drinking homemade rice milk since March 1. It doesn't taste too bad in cereal, but it's not great alone. I'm still experimenting with the recipe. It's actually pretty easy to make.

I've stopped drinking Crystal Light. The only things I'm drinking right now are pure grape juice in the morning, water and rice milk.

I've stopped eating citrus fruits, though I'm not completely certain what constitutes citrus fruits. I thought pineapples and strawberries were, but one website did not have them on the list. Can anyone help me out with this? Should I be eliminating my citrus fruit intake, or limiting my ascorbic acid intake?

I've stopped eating the Ritter chocolate bar and have substituted the Enjoy Life chocolate chips. I melt them and put them into molds for easier eating.

I haven't noticed any improvement.

I have noticed that when I get the stomach gurgling, it's in the evening after dinner. I never get the gurgling while I'm at work (thank goodness).
However, I had gurgling today after lunch. The difference? I ate my chocolate pieces after lunch today because I'm home. On work days, I always eat the chocolate in the late afternoon when I come home.

My depressing conclusion: I need to give up the chocolate and see if things improve. The last time I gave up chocolate completely was when I was pregnant 35 years ago. I'd heard that it caused colic and I didn't want another colicky baby. After a year of abstinence from it, it didn't appeal to me for a while. Obviously, I got over it! If chocolate is indeed one of my intolerances, then I probably need to adopt Polly's list of forbidden foods. It would lend credence to the theory that genetics and food intolerances are related.

[tex]

Hi Gloria,

I'm sorry to hear that success is still elusive. Your chocolate test definitely appears to reveal a "smoking gun", though. It's certainly possible that you may be intolerant to chocolate, but I still think that there's a possibility that the chocolate you're using may contain soy, (even though it's not listed on the label, because that issue is exactly what made tracking down the culprit so difficult for Karen). I notice that Enjoy Life outsources their chocolate chips, and while the chips are spot-checked for dairy content, they are not checked for soy content - they take the source's word on it.

Regardless of which might be the case, as quickly as you seem to react to it, you should be able to tell in only a day or two if eschewing it makes a difference. If that's it, then as you suggest, we will probably need to begin placing more importance on gene testing as part of the information needed to expedite working out an optimum treatment program.

Good luck with your test.

Tex

[Matthew]

Gloria

It makes me laugh now to think how I have had to examine everything that I consume. Never would have thought that I would have the results I have had but it does work.

Never saw ascorbic acid on your list of what you eat . Assume it it is a Vitamin C supplement. Both citrus fruit and ascorbic acid can be a problem for me and the two together would just be a double whammy.

???

Do tell us more?

Love

Matthew

[tex]

Gloria,

I forgot to mention that grape juice, (and grapes), is one item that still causes me to have D, even though I am in remission. I think that a lot of grapes are high in yeast, (especially ripe grapes), but I tested negative to yeast intolerance at Enterolab, so I'm not sure just what the problem might be.

Tex

[thedell19]

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

That is horrible about the two labels being different!!!!!

I used to buy the gluten free cake mixes, chocolates, chips, and other things that are GLUTEN FREE but probably were not good for the gut healing proccess.

Those fruits sounds like they might cause some problems. Bobs red mill has a good muffin recipe on the back of one of their flours. The receipe is great and you can add your fruit and cook it so that it is easier to digest.

These are the foods that I ate for about a year after I figured out I couldnt eat everything gluten free.

Eggs (you cant have but there are egg substitutes- egg replacer from Energy), chicken, turkey/turkey sausage but with grease drained, muffins, rice, any and all fish, potato, rice cereal,

Rice Dream was once NOT gluten free and said that it might contain trace amounts of gluten do to the barley in it. BUT it might have been under that threshold that is an acceptable amount of celiacs to have- so now they are listing it as gluten free? Just a thought?

Garlic also gives me FITS

[Gloria]

I appreciate your comments and suggestions.

Tex: I don't want to deal with the grape juice possibility right now, but I'll make a note of it. If abstaining from chocolate doesn't work, I'll consider the grape juice. I'm so restricted with the liquids already. I'm starting to get headaches in the evening which means I'm getting dehydrated or not getting the right nutrition. I'm forcing myself to drink more water. I have some gluten-free Poweraid, but I don't want to drink it because it has high fructose corn syrup. I think I need to make a list of the acceptable fruit juices I can drink.

I made some peanut butter cookies so I could have at least one snack to enjoy.

It's day three of my forsaking chocolate - except that I forgot that my cereal was chocolate rice cereal yesterday. Norman visited at 6:30 a.m., but I was back to pudding by 9:00 a.m. Lots of gurgling all night, too. Probably from the corned beef and cabbage on Monday. I thought it would be safe...

Today - pudding again. We'll see what tomorrow brings.

[tex]

Hi Gloria,

I hear you on the grape juice. For a couple of years when I was avoiding corn, my favorite drink was Polly's recommendation of Welch's 100% Grape Juice, blended 50-50 with Club Soda. I really hated to give it up, because it's a great drink. As long as I didn't over do it, it wasn't a problem, but if I drank too much, it gave me D. I finally decided that it was trying to tell me something, so I gave it up. LOL.

Adequate hydration can definitely be a problem when you're on a diet that restricts HFCS.

If I remember correctly, when Karen stopped eating the chocolate that was laced with hidden soy, her D stopped in only one day, and she was not using any meds.

Tex

[thedell19]

Gloria-

I know Gatorade also has HFCS on it but it doesnt upset my stomach. usually though I will water it down- maybe 2/3 gatorade 1/3 water.

Are you getting enough calcium in your diet? Many of us who give up dairy need to take a calcium supplement. I tale Caltrate- main ingredient is calcium carbonate which actually helps with D or pudding. The calcium absorbs the extra water in your intestines. It has really helped me especially the days that I eat out or eat a food that I am probably just not ready for. But I really just shouldnt eat out often... The ONLY place I have NEVER had a problem after eating was at PF Changs. I go there about once a month and never had a problem knock on wood. Everywhere else it is a crap shoot. I think at PF Changs they actually use dedicated areas of the kitchen just for GF items and only use certain pans and pots for GF items...

I live at 7,000 ft above sea level so getting dehyrdated comes very easily to us up here. I have to drink at least 60 oz if I dont want to get a headache more if I am active. Try to water down the gatorade or poweraide- there are sports drinks at Health Food stores that dont have HFCS but probably have something like "fructose syrup"

[Gloria]

I have good news! This past week I've started to see Norman more often than not. As Polly suggested, I've been trying my best to restrict her intolerances from my diet. It appears that the grape juice was causing me problems - thank you Tex for the heads up. I'm only drinking pineapple juice, apple juice, homemade rice milk and water now. I'm not taking a multivitamin anymore because I couldn't find any without corn, which I'm avoiding also. Walgreens reported back to me that their Finest Natural vitamin D and Calcium, Magnesium & Zinc supplements contain corn:

Thank you for contacting walgreens.com customer service. This is in response to your e-mail regarding Walgreens Finest Calcium/magnesium with ingredients of zinc gluconate, micro crystalline and also Walgreens finest vitamin D.

Here is the response I received from the vender. For the Vitamin Ds, all three soft gels use the same raw material, a Vitamin D3 (cholecalciferol) in corn oil.

For the Cal/Mag/Zinc, it's the same tablet for both, which contains a Calcium Carbonate Granulation that has maltodextrin in it, and the maltodextrin is derived from corn.

I am saying yes both products have corn products in them.

Andrew, I've purchased too many calcium supplements that I later discover contain my intolerances. I am worried about my calcium intake, so I'm going to order the vitamins from Freedavitamins.com that Polly recently recommended.

I just returned from a trip to visit my daughter in Utah. I had two bouts of D by 2 p.m. the day I left home. I knew that it would be hard to stick to a rigid diet while visiting. I ate out a couple of times and I also drank Rice Dream milk while there. Ate a bit of Enjoy Life chocolate, too.

To my surprise, I either had visits from Norman or formed stools every day I was there. Until the day I left. Then I had D again. I ate sweet potatoes both nights before I had the D. In fact, most times that I eat sweet potatoes, I have either D or a soft stool the next day. Sweet potatoes are not a highly allergenic food, though. I like to eat them because they have so many vitamins, but I guess I'll give them up for a while.

One food that I didn't eat while I was there was mixed nuts. Without chocolate to snack on, I had been eating a handful of the nuts each day after school. Perhaps the nuts were causing me problems?

I'm also trying to not eat Canola oil, but it's not always possible to avoid it. I'll have to make new salad dressing and mayonaisse with sunflower oil.

I keep chipping away at this problem, hoping someday I'll finally be able to manage it without the steroids.

[tex]

Wow! That's not "good" news - it's great news.

Many of us have to avoid sorbitol while we're healing. Apple juice contains sorbitol. The fruit best known for it's sorbitol content, is prunes, and, of course, it contains much more than apples. Could that possibly be the thing, (or one of the things), that is keeping you from achieving complete remission?

It's nice to see that you're making some good progress.

Tex

[Polly]

YAY GLORIA!

Any progress, no matter how small, deserves a celebration!
Way to go!!! This is especially exciting because you are a genetic "double DQ1", and it is more difficult for us to attain remission because of our large number of intolerances. You should feel very proud.

I never drink juices "straight" - always dilute them using 3/4th water (seltzer water makes a great "fruit soda").

Doesn't Rice Dream contain carrageenan? That may have been a culprit. In the early stages of MC, any fiber can cause D - it is entirely possible that eventually you will have no problem with sweet potatoes, nuts, etc. BTW, you may tolerate nut butters better at this stage. Also, peanuts (which are legumes and not tree nuts) have lectins which increase leaky gut - are you eating them?

Why are you avoiding canola oil? Does it give you problems?

Here's to your continued improvement.......

Love,

Polly

[Gloria]

Sigh. Norman didn't visit today; Georgie Porgie (puddin & pie) did. Isn't it strange that I'm reacting like this while still on 6 mg. of Entocort a day? I'm writing my struggle for remission so that other members of the "double DQ-1 gene club" and multiple intolerants can see that the course that we have to take is pretty uncharted. I rely heavily on the personal experiences of others on the board.

I made some apple crisp last night because I was dying for something sweet. I ate some again tonight. If Georgie Porgie visits me again tomorrow, I'll have to give up the apple crisp.

Tex, I've been drinking apple juice in the morning. I can go back to pineapple juice, which is what I was mostly drinking in Utah (mixed with water). I bought some cherry syrup from Poland several weeks ago which is made only from cherries and sugar. I mixed that with some water tonight for a beverage.

I have lots of jars of prune plums that I canned a couple of years ago and I've been eating them occasionally. I didn't realize they (and apples) have sorbitol. I had a fresh pear today. I seem to remember that pears are usually well-tolerated. Otherwise, I've been eating applesauce or canned fruit in natural juices.

Polly, I've been eating natural peanut butter with natural fruit jelly on rice cake for lunch about 1-2 times per week. The peanut butter cookies didn't seem to bother me last week, though. I only drank the Rice Dream last week while visiting my daughter. I'm back to my homemade rice milk this week. It just occurred to me that Rice Dream is enriched with calcium and vitamin D. I'm getting practically no calcium or vitamin D now that I'm not taking supplements or drinking the enriched milk. I wonder if the calcium and vitamin D were helping me to do better in Utah?

I'm avoiding canola oil (not strictly, though) because someone mentioned that they had problems with it while they were healing. It didn't seem like too difficult of a change at first, but now I notice that a lot of organic foods list it as an ingredient.

It's getting near Passover and there are more foods available without soy. I've heard that Mother's margarine is made without soy only during Passover. That would be the only margarine I've ever found without it. None of the stores have it yet, though. I've been substituting Spectrum spread and ghee for the margarine, but I've stopped eating ghee until I'm healed. I bought some Passover chocolate chips w/o soy in them tonight for cheaper than the Enjoy Life chocolate chips. I have hopes that I can resume eating chocolate sometime.

[Dee]

Gloria!
Hoping to hear that Georgie Porgie took a hike and Norman came to visit today..
Sure sounds like your getting real close to remission....
I've heard of the Mother's margarine too, but haven't seen it anywhere to purchase it.. If I come across it I'll let you know..
Where did you find the chocolate chips???

Dee~~~

[tex]

Hi Gloria,

As Dee says, you seem to be getting close. When I was healing, I found it simpler to just cut out all fruit from my diet for a couple of years. I'm not saying that sorbitol is definitely your primary remaining problem, but if it is, you are still having trouble escaping it's clutches. Pears are a good source of sorbitol, and so are cherries. In general, non-citrus fruits contain significant amounts of sorbitol, and citrus fruits do not. I apologize for not pointing that out sooner. Here are a couple of lists to consider:

Most Kind to the Intestines

# White grapes
# Strawberries
# Raspberries
# Blackberries
# Pineapples
# Oranges

Least Kind to the Intestines

#Prunes
# Pears
# Sweet cherries
# Peaches
# Apples

The reason these fruits are less intestinal-friendly is because they have a higher fructose-to -glucose ratio, some contain sorbitol and some fruits have higher levels of fiber. If you are suffering from sluggish bowels or constipation, then use this nutritional quirk to your advantage since juices, such as prune and pear nectar, tend to be laxative in effect.

This information comes from:

http://www.askdrsears.com/html/4/T042600.asp

Remember, though, that citric acid causes D for many of us, at least until our gut heals. I've been in remission for roughly four years, now. A few months ago, I tried some grapes for the first time in a couple of years, (I had avoided them for four or five years, and then tried some grape juice a couple of years ago - unfortunately, it caused D). Anyway, in this most recent trial, the first time I snacked on them, I got away with it, but when I tried a more substantial "dose", later, they cleaned me out within a few hours. IOW, I still can't do citrus, apparently.,

Concerning the calcium and vitamin D, have you tried hemp milk? A serving contains 46% of the RDA of calcium, and 25% of the RDA of vitamin D, I believe. It's the only type of "milk" I use, these days.

You might find some insight in this article on how sorbitol causes IBS:

http://www.foodintol.com/food_intolerance/hot_ibs.htm

Tex

[Gloria]

I didn't have a BM for 29 hours, which is a very good sign. It started out as Georgie Porgie, but ended up closer to Norman. That happens a lot with me. I think it says that I'm close to being healed, but certain foods are causing problems.

Dee - there's a store chain in my area called Sunset Foods and they carry the products. I'm still waiting for the Mother's margarine, though. Yes, I do feel like I'm getting closer to remission. Even though I've been this close before, it seemed like Entocort was taking care of things. I don't feel like I'm responding that well to the Entocort anymore because I am "flaring" more. That's why I'm eliminating more and more foods.

Tex - thank you again for the information. I'm starting to think that my problem could be fruit, or at least some types of fruit. When I was younger, I had problems when I ate fresh fruit, but they seemed to go away when I was older. You certainly don't need to apologize for anything. I'm always amazed at your attentiveness to each and every person's problem.

I tried the Hemp milk for a week, but had problems. However, I was still eating mixed nuts, citrus fruits, ghee, chocolate and drinking Crystal Light. I could give it another try, but I have to drive to Whole Foods to get it. Maybe this weekend. I drank Rice Dream milk today because yesterday I had a headache and didn't feel very well. That usually happens when I'm not eating right or drinking enough. I bought some multiple vitamins made by Wild Harvest that contain no sugar, starch, artificial colors, perservatives, corn, yeast, wheat, gluten, egg, or milk products. They have 400 IUs of vitamin D, but only 150 mg of calcium, so I still need to get some calcium tablets.

That's my posting for today. I'm keeping my fingers crossed that each day will bring me closer to remission.

Gloria