Weaning Off Entocort

[Gloria]

Things have changed for the worse since I posted my last message 6 days ago. I definitely didn't make the 8 week mark. Between Monday and Wednesday, I had explosive D twice and D two times. I even had to rush home from Walgreens on Monday. I was pretty discouraged yesterday morning when I had the D again.

I don't want others to be discouraged about my relapse, too. I know that many of you are looking at me as an example and an inspiration. Remember that I am a double DQ1, which means that I have multiple intolerances and it has been exceptionally difficult for me to get this far. That's what made my temporary remission so exciting.

I believe that now that Entocort has completely left my system, I am reacting to any level of food intolerances that I have. I don't know yet if I have additional intolerances; I surely hope not.

I eliminated the suspicious foods in my list above, but didn't notice any improvement. Yesterday, I decided to eliminate RiceDream milk, which has a minute amount of gluten. I also resumed taking a probiotic two days ago. Today, though I didn't see Norman, I also didn't have D. Neither did I have any cramps, gas or gurgling today, so I'm making some improvement. Hopefully, the RiceDream was the problem. I will keep you posted.

Gloria

[tex]

Gloria,

I'm sorry to hear about the setback, but the fact that you haven't had any cramps, gas, or gurgling today, is a very encouraging sign.

If the problem turns out to be the Rice Dream, that will indicate that the Codex Alimentarious standards may be too lax, since those standards allow a maximum of 20 ppb of gluten, which supposedly, (if I recall correctly), is claimed to be the upper limit for Rice Dream.

Tex

[Polly]

Hang in there, my fellow double DQ1!

I know it's frustrating, but you will get there. Am following your progress with great interest. The mayo with corn you mentioned - didn't it contain eggs? Also, I can't tolerate the carageenan in most of the nut milks.....do you think it could be that? What's in that coconut chocolate ice cream?

Here's a great big hug for you:

Love,

Polly

P.S. Good idea to start a new thread!

[RUBYREDDOG]

Gloria,

I have been following your progress since I have many of the same intolerances and am a double DQ1 as well. I've taken the diet alone approach to achieve remission since June (approx. 5 months) and it has steadily been working well. Several weeks ago I posted that I was close to remission,but this week the d has returned.

I think Tex and others have warned that we become even more sensitive to our intolerances, once we have eliminated the offending foods from our diet for some time. I'm hoping that is the case for me as I have been slowly introducing some food that I had to eliminate these past months. This past weekend I had a pastromi on rye sandwitch, salad with dressing and a Gf waffle. Tooooo much too soon I think. This is very discouraging.

Anyway, now that I am back to the old standard diet, that seemed to be working for me, I hope to see some better bm's soon. Hope your results are improving as well.

Hotrod

[tex]

Hotrod,

Actually, you don't have double DQ1 genes. Your gene molecular analysis is:

HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0503
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5).

I don't know why this has evolved into such a confusing, complicated, and convoluted system, but I suppose that came about when they tried to correlate the new system with the old system. I'm pretty sure that I'm interpreting it correctly, which would make your genes DQ3,1 (Subtype 7,5).

Did you eat a sandwich on "real" rye bread? Rye contains secalin, which is the prolamin protein equivalent of gluten in wheat.

I hope you recover ASAP.

Tex

[RUBYREDDOG]

Tex,

You are right about the confused aspect of genes. I assumed ( you know what that means) that since I had two of the bad genes that I was double DQ-1. Thanks for pointing that out for me.

Yes I did have real rye bread and I know of its gluten like properties. What can I say. I was hoping it would pass without incident. Live and learn.

Have a great weekend!!

Hotrod

[tex]

Hotrod,

I understand - sometimes engineers have to run a test or two, to make sure the theory matches the "field" results.

Actually, what you did is not as far-fetched as some people might think it is. There is no test to detect secalin antibodies, (neither serum nor stool test), so we have to either accept the popular "theory" that it's the equivalent of gluten, or test it out, as you did. I did the same thing with oats, as I'm sure you're aware, and I failed that test, too. Thanks for checkin' that out for us. Barley is still "untested, but I'm gonna pass on that one, 'cause I'm afraid it's a no-brainer. LOL.

I hope you have a great weekend, too.

Tex

[Matthew]

Hotrod and Wayne

For fifteen years before my diagnosis one of my favorite occupations was making bread. Acquired maybe fifty books on bread making.

For what it is worth, I have never seen a recipe for Rye bread that is 100% rye flower. Commercial Rye bread and every recipe I have contains at least some wheat flower. Doesn't mean their aren't any, it is just not what is usually done

With that in mind I can only imagine that eating rye bread is a double whammy in that you are getting two forms of gluten protein at the same time.

Happy recovery

Matthew

[tex]

Hey Matthew,

That never dawned on me, but I'm sure you're right. Early on, I remember searching for potato bread, thinking that it would be safe to eat, but to my dismay, it all contained wheat. In fact, if I recall correctly, there wasn't a heck of a lot of potato flour in it. I went away wondering why they even bothered to call it "potato" bread. I had the same experience with amaranth. Everything I found, also had wheat flour in it.

Thanks,
Tex

[harvest_table]

Here are some of the foods I've reintroduced since my remission. I've placed an "S" next to the ones that are suspicious.

ham
orange juice - S
pistachios
corn & derivatives - S
capers - a completely new food for me - S
rice crackers with a powdered vegetable coating - S
homemade ghee - S
fresh pear - S
mandarin oranges - S
Enjoy Life chocolate chips - S
Coconut chocolate ice cream - S
lemonade - S
blood orange sorbet
mango sorbet
sunflower butter
jelly - homemade with Clear Jell (corn derivative) - S
frozen strawberry fruit bars

Gloria,

Your re-introducing alot of sugars into your diet and that might be something to consider.

Another thing, just because you feel good don't tempt fate.

Dietary intolerance's are very hard to figure out..especially with MC.

Love,
Joanna

[Gloria]

Hotrod,
Yes, I think I pushed it, too when I ate french fries and other things out. My excuse is that I was visiting my DD and didn't have much to say about where we ate. I was hoping that I could tolerate a little residue from forbidden foods. I suppose I did initially, but it's possible that they irritated my gut enough to cause a flare.

The last couple of days I've been getting back to normal. Norman even appeared yesterday morning. I've stopped drinking Rice Dream and coincidentally also haven't had tomatoes. I'll find out if I have problems with tomatoes as soon as I resume eating them. I'm very leery of testing Rice Dream again. I'm not anxious to test anything right now because I've had a little bit of a bellyache. It makes me wonder if I had a little flu bug, but I didn't feel sick. DH also had D one of the days that I did, but his diabetic medications do that to him sometimes.

Polly,
Yes, it almost seems like we're in this together, doesn't it? I keep eliminating corn and going back to it. My multiple vitamin has cornstarch in it and I ate some tater-tots a couple of days ago which have cornstarch. I'm back to using mayonnaise that I made with corn oil. I had stopped using it when I went corn-free. I believe I put some cornstarch in the last loaf of bread I made. I'm still not sure if it affects me or not.

The same thing goes for orange juice. I drank some as late as this morning. I've avoided it for a long time. I'm hoping I can drink it so that I can get the calcium in some brands. I'm still not sure if it bothers me.

The coconut chocolate ice cream contains: organic coconut milk, organic agave syrup, chicory root extract, cocoa (processed with alkali), carob bean gum, guar gum, natural flavor.

Joanna,
Thank you for your concern. I guess if you just focus on the list I created, it looks like I'm eating a lot of sugar. In reality, I usually don't eat desserts much anymore. There's not many left to eat once you omit eggs and wheat flour. I'll have a frozen dessert maybe 2 nights a week. I never eat hard candies. My weakness is chocolate, but I haven't had any chocolate candy other than Enjoy Life chips and I haven't had those in over a week.

Gloria

[RUBYREDDOG]

Mathew, Now that you mention it, that rye bread didn't quite taste or look quite like rye bread that I'm used to seeing. Probably was full of wheat gluten. I should have eaten the meat and left the bread alone. After 10 days, I'm slowly getting back to semi formed stools. Definitely was not worth the chance that I took. Going out to dinner offers little in the way of choices for us. Usually I try to stick to meat, potatoes and cooked vegies.

Tex, my "super b vitamins" also contain vitamin c. Does this mean that I should take these separately in order to achieve absorbtion of the b-12? (the b-12 is not sublingual)

Hotrod

[Gloria]

After having a small accident this morning, I'm going to eliminate corn products completely from my diet to see if that helps. I've decided that if that doesn't help, I'm going back on 3 mg. of Entocort a day or every other day, if I can get away with it. I'm weary of trying to figure this out and I'm not willing to give up anymore food besides corn. Giving up corn is still a big sacrifice, but I've almost eliminated it anyway. I'm still pondering the Rice Dream because apparently that wasn't the problem.

Gloria

[tex]

Hotrod,

From what I read, not much B-12 is normally absorbed form those multi-vitamins, anyway, (even for "normal" digestive systems), so if you don't think you're getting enough from your diet, you would probably be better off using the sublingual B-12 tablets for a few days or a week or so, (depending on the dose), and then you can coast for a while, without having to worry about it. The body is capable of storing B-12 for years, if necessary.

Tex

[tex]

Gloria,

Maybe you just need a few more days to "heal".

Tex