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[Rosie]

Tex, we all try to do the best we can with our advice. And so often it's not just the advice, it's the timing, and we don't know enough about where other people are at with this nasty disease to know when the the correct timing might be. Gloria's advice has been really helpful to me, and I hope she returns to the Forum, as she has so much to offer.

Your comments about avoiding processed foods when in a flare make a lot of sense. Whenever I have some sort of problem, I can almost always trace it back to some processed food item. And it requires constant checking, even of previously OK products. And given the past examples of food products from China and other places not being what they were supposed to be, it adds to the uncertainty and anxiety. I'm getting less and less trusting of the food labels, given that so many ingredients are sourced from all over the world.......

Below is part of an email I received from the producer of "Natural Coconut Milk", one of my favorites for adding some calories. It contains only coconut milk and water......well, it used to contain only that. Imagine my disappointment when I noticed that the can's label looked a bit different and then I saw that it now contains guar gum, a big no-no with my soy intolerance. I emailed the distributor and below I've copied part of his response. It certainly provides an example of the potential problems with processed food.

We’ve been producing our Natural Coconut Milk for the past several years.

During that time, we have specifically requested that our Natural Coconut Milk have only coconut and water.

It took us awhile to convince our canner that yes, we really, really wanted our coconut milk without Potassium Metabisulfate – a whitener, and without guar gum – a stabilizer that keeps the coconut milk “stable” – or in more of a liquid form.

On our last order from the canner, we received a totally different product. Our natural coconut milk now has guar gum in it, plus unspecified emulsifiers and stabilizers. We did not order it like that, and unfortunately, the canner not only changed the formula and the ingredients, they took the word “Natural” out of the “Natural Coconut Milk” description. They made some other changes to the ingredients and nutritional information as well – all without telling us in advance they were doing that. If they had told us in advance, we would have said “No Thanks” and found a different canner.

We have stopped shipping this product to our distributors and are making arrangements to have it sent back.

I tried another brand that just listed citric acid and sodium metabisulfite as extra ingredients. I was a bit suspicious when I saw that it had a thick, creamy texture and wasn't at all separated. So I tried just a small amount to test, and had a reaction. So I think it must have contained those "unspecified emulsifiers and stabilizers".

Rosie

[Gloria]

To my dear board friends,

I appreciate your comments and concern. I have been lurking and reading your posts. I thought I would post my email response to Tex's apology (which was very sincere) so that you could see what I'm feeling.

Tex,

I appreciate your letter of apology and I believe you are sincere. I've pondered both what you wrote and your subsequent apology.

I understand that you wrote out of concern and a desire to help me. I've never seen you write an irritated post to anyone else, unless they've deliberately attacked you. Your desire is to assist everyone to manage this disease and you do it exceedingly well. Much of your advice in your post to me was on target, and I appreciate that you took the time to write it even while you were clearly tired and in pain.

I had been sensing your frustration with me. Usually you are very diplomatic and understanding, but I think your near death experience did affect your disposition that evening, in addition to the late hour. Yes, I was very hurt by what you wrote; I was also humiliated to see it posted for the entire board to read. The most hurtful statement was that you didn't feel I was willing to "sacrifice." No one who knows me would ever say that I'm not willing to sacrifice - quite the opposite. I've lost 20 pounds since being diagnosed, and that's not due to malabsorption. It's due to severely restricting my diet. I'm only 5' 2" and 20 pounds is a lot. I'm down to wearing a size 4. I feel that you crossed the line from being supportive to being critical. No one who has this disease should be criticized. Just giving up gluten is a major sacrifice, and I've certainly given up more than that.

Since you provided an explanation for your post, I hope you understand that I feel a need to explain my approach to treating my MC.

I believe that my mistake has been thinking I've found my last intolerance each time I eliminate additional foods. I ended up in a cycle of taking Entocort to resolve my symptoms, and then having to wait 4-6 months to find out whether my diet changes worked. Entocort gives the illusion that the disease is in remission, when it may or may not be. This time, I've realized that I need more immediate feedback and I am not increasing my Entocort dosage. I've also dramatically changed my diet.

My road to remission has been and will likely continue to be a long one, but I am determined to figure it out. Right now I'm not ready to resume posting on the board, though I probably will be lurking. I don't know how many people would pay attention to my input at this point, and I'm not anxious to set myself up as a target again. I have a feeling that I won't feel like posting until I see significant progress in my symptoms.

I don't hold this against you and I do understand that you meant well. I hope that you're recovering and feeling better.

Gloria

I don't want to go into a lot of details because I'm still gun shy, but I've only been eating meat (mostly chicken), rice and vegetables for the past couple weeks and I'm having D worse than ever. I'm still on one Entocort pill a day. I eliminated the rice, eating only chicken and vegetables, and I've gotten even worse. Clearly my problem is much more complex than eating processed foods (a valid caution), but that isn't what bothered me - it was the statement that I'm not willing to sacrifice. Today I'm eating chicken breast and rice and will hope for some relief. I am still not ready to post because I'm going through a very hard time right now.

[Gabes-Apg]

Gloria
sorry to hear that even the most basic diet ingredients are not helping the symptoms to go away
what you are enduring is very mentally and physically taxing, and totally understand your shyness to posting. It has hard to share yourself with others when the symptoms have been ongoing and the energy store is low.

i hope that by shying away from posting that you dont feel alone with your current afflictions.
love and hugs that you start having an easier time with it SOON

take care

[Polly]

Gloria!

It is wonderful to hear from you again, but I'm sorry about the worsening MC. I have missed you immensely and wish you all of the best as you continue to struggle with this horrid disease.
I hope you decide to post again - it is so important to me since we share such similar intolerances.
We double DQ1s need to stick together.



Love,

Polly

[Bifcus16]

Gloria, so sorry to hear things are going badly for you. Would love to hear from you any time you are ready to write.




JMulkey

Congrats on making the decision to go GF.

Remember, it is quite possible to do this without buying special food, if you go back to more basic foodstuffs - meat and vegetables and fruit and nuts are all GF. You can do some imaginative cooking with 'basic' ingredients - but it can ease the transition to use some GF flour etc. Have a look at Dee's recipe collection. Cooking up some foods you can have in the freezer for bad days is always a good idea.

Let us know how you are going.


Lyn

[ant]

Dear Gloria,

It is so good to see a post from you and totally understand you being reticent right now. I am also very sorry to hear you are still in a flare.

I think what you said about Entocort may be the same for me. (I went down to 1 a day a week ago and am trying to stay at this level. But 5 days on I have had one D and two days of rumbling, slightly bloated gut, while keeping the BMs firm with Imodium and Pepto (as a short term measure.....hoping it is a short term problem).

This disease is so sneaky, and so sneaky with our hopes and fears.

Love, ant