Extremely confused and not sure what to do.

Luv2Dance · Joined: 15 Apr 2008 Posts: 59 Location: Colorado

Al,

Hello. You are not off-base at all. I know my posts are long- sorry about that. Get me in person and I'm so quiet I don't know what to say! In writing.. well...that's another story.

Anyway- thank you! I like the "Gluten Intolerant" label. I shall use that. Saying "Celiac Disease" sounds so formidable.

The doc that sais they don't beleive in vitamin and mineral testing is the one that says they don't know if I have CD and its better not to have it in the file anyway... The specialist they sent me to is the one that said I don't have it. He even told me to go back on dairy to "try it out" when I KNEW that dairy made me sick.

The thing is- I have been to SOOO many doctors. I'm sure you understand. I was told to "quit jumping from doctor to doctor," and called a "hypochondriac" or "attention seeker" by some. A person hears that often enough, with the doctors saying that I'm healthy, and well, I gave up I guess. Sometimes I wish they could just feel like I do for a little while to understand. I'm here for emotional support as well as technical. Maybe someone to help push me to find the right doctor without telling me I'm just a "hypochondriac" or "attention seeker."

If this emotional stuff or wordiness or personal disclosure is incorrect and inappropriate here- please tell me. As I said, I have never been on a forum. And I know I wrote to much and get to wordy. Please tell me, privatly or over the forum, if I have crossed bounds or where to quit. How do I even initiate to write a private message to someone here? I know how to respond, how do I initiate it?

I will check with my orginal doc that diagnosed the CD for the vitamin testing. I am seeing him next week.

Thanks for the boot camp thread. It is very helpful. I will work on it. I seem to be developing quite a huge pile of stuff I keep printing off the internet. Do people keep CD books with what they can and can't have? Or label stuff in the fridge? Or how do you organize all of this?

Thanks again.

ostrich · Joined: 30 Mar 2006 Posts: 4040 Location: Nebraska

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 627 Location: Maine

cruelshoes · Joined: 23 Sep 2005 Posts: 2408 Location: Washington State

voix · Joined: 10 Apr 2008 Posts: 145 Location: Colorado

One thing is that Colorado (Denver Metro) seems to be pretty hip to GF eating. So once you get the basics down, you can have fun with more elaborate ideas.

Look at this lecture series at the Phipps Mansion in Denver: http://www.theglutenfreelifestyle.com/Gluten-Free%20Lecture%20Series/08/Denver/index.php

I also sent you some groups for this area via back channel. I haven't been yet, but saw that two groups are meeting in the next two weeks. I may try it out.

There is also a cafe here in Denver that seems almost famous Deby's Cafe. It Changed its name to 8 Free Foods or something like that. From what I read ,her products are wonderful, (but pricy). And some people order them via mail. Some restaurants order the dough, like a pizza joint here in Longmont uses her pizza dough to offer gf pizza. Now that I am learning about cc, I am not sure how that works. I guess they cook on tinfoil?

Anyway, once you find substitutes and change little behaviors, like getting used to reading labels every time you shop, I think it is possible to live without too much deprivation. With my chemical sensitivities (which I will explain more later since you asked) my goal is to try to be myself and have the luxuries that I enjoy without getting sick. But it takes work to find the right things.

nancw · Joined: 04 Oct 2006 Posts: 777 Location: Denver, CO

voix · Joined: 10 Apr 2008 Posts: 145 Location: Colorado

Ah, that is how it is done. I am amazed at the level of commitment from Beau Jo's. I am not ready to test to see how much cc bothers me. I probably wouldn't even know the difference yet.

Luv2Dance · Joined: 15 Apr 2008 Posts: 59 Location: Colorado

Hello Everyone,

Thanks again for the valuable information. I'm feeling overhwlemed and frustrated because I was checking bath products against lists compiled on another forum. I didn't realize that I should be checking the maufacturer directly. I feel like I wasted my time, and have been possibly continuing to use questionable products.

I'm sorry you guys, but I don't know how to do this! I don't know if I can keep this up. My schedule is soooo busy. This is all so time consuming. But I can't keep leaving work feeling sick either. How do you balance this all? I'm sorry to be negative again. But spending all fo this time researching this stuff, I'm not getting my homework done.

Really, I was feeling more energetic today and more positive. I had a great day researching stuff. But everytime I think I'm heading the right direction, I hit a pitfall.

Even some of my food I had checked against lists comprised on another forum. And to look at the date- yeow! What was I thinking!

So, how do I recognize the ingredients in bath products? I haven't worn deodorant in a week because I haven't had time to check it.... Yuck. But I still continue to use some products that I haven't had time to check that I simply can't do without.

I printed a list of food ingredients- good and bad- to look for from the boot camp thread. Is there one for bath products?
And - gulp-(dread) since I am allergic to dairy and eggs, do I need to be checking for those type of ingrediants as well? I did away with dairy and eggs in my food last year, but never thought of checking topical products.

I'm honestly not sure how to balance this with my life. And I do want you to know that I have other support as well. I shouldn't have complained as much about the negatives from the family as I did. Please know that I was in a down negative moment and wondering where to head. I'm much stronger than I used to be. I just need a little more confidence to follow through on things completley, with conviction.

Thanks again everyone.

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 627 Location: Maine

aklap · Joined: 02 Oct 2004 Posts: 8310 Location: WI, USA

Hi Dance,

Yeah, no question, this is all very mind numbing! Understand, you are taking in years worth of knowledge and experience all in a matter of minutes/hours. It took me several months before I felt I had a handle on my food choices. It took me a year before I felt really comfortable in this lifestyle.

Trying to do this in 1 big bite, is extremely difficult. I don't know anyone that has gone completely GF overnight [people say they do, but I know better from experience Wink

]. I think you need to break this up in smaller chunks. Turn most of your focus to the most important, but keep in the back of your mind all those other things. Once you get a chunk handled - move on down the list. All the while you're getting into smaller, subtler details of this thing we call the GF lifestyle. This is a process of refinement and fine tuning.

1) Main focus - Items you ingest: Food, meds, supplements.
Sub focus: How that food is prepared and handled aka cross contamination.

2) Main focus - Cross contamination.
Sub focus: Items you don't ingest.

3) Main focus - Items you don't ingest but come into contact with.

I think you can see that I'm starting with the "Big Stuff" and working my my way down to smaller areas of concern.

I hope this helps and makes some sense Wink

_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cardine45 · Joined: 15 Apr 2008 Posts: 100 Location: Kalamazoo, MI

I completely agree that things need to remain simple at first. I'm getting a lot of light-hearted jokes at work that I've eaten basically the same thing every day for almost 4 weeks, but I'd rather be safe than sorry. They've been scheduling us for a ton of overtime, so I basically have to cook everything on weekends and then freeze it for later in the week. I actually have chicken in the oven right now (at 9am) because I like to sleep at the same time as my boyfriend and I have just enough time after work to take my dogs out, go through my teeth routine (a whole other story due to celiac), and then hop into bed just in time to fall asleep before he starts snoring. I ate too much this week and happened to run out, so thank goodness today we have less overtime and I have time to do this before work without getting up at the crack of dawn.
This week I have baked chicken (with nothing on it), and either red potatoes or sweet potatoes (for variety). That's basically what I've eaten the 3 weeks before this also. It's bland, but it's safe and I feel a million times better. My breakfast is scrambled eggs and a banana or strawberries. I used to put milk in my eggs to make them fluffy, but I've cut out dairy completely (lactaid doesn't work anymore as far as I can tell), so now I put water in them to help a bit now. I also supplement with 3 cans of Ensure, and I eat Luna energy bars (gluten-free on the label) or Enjoy Life cookies (they're 100% free of all of the top 7 allergens) for snacks to hold me over to my next meals. Because my schedule is crazy, I don't really eat dinner, but I usually eat some sort of fruit on my drive home from work (typically a banana)
I hope that helps, and I tend to write too much and disclose too many details too. It's not very well updated, but I have a few posts on my blog: carolineisglutenfree.blogspot.com which might help with how it's been going so far (I'm very new to this), and make you realize I disclose way too much too. Wink

ostrich · Joined: 30 Mar 2006 Posts: 4040 Location: Nebraska

This might be a little off-topic, but would it be possible to switch jobs? It sounds like you have everything scheduled right down to the minute. I imagine tons of over time + trying to figure out this GF thing + trying to sync your schedule with your boyfriend's = a ton of stress.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

cruelshoes · Joined: 23 Sep 2005 Posts: 2408 Location: Washington State

cardine45 · Joined: 15 Apr 2008 Posts: 100 Location: Kalamazoo, MI

Luv2Dance · Joined: 15 Apr 2008 Posts: 59 Location: Colorado

Hey Everyone,

Thank you for the outline on how to slow down and keep this simpler. I feel better and more relaxed seeing that. And yes, even though I read it in the boot camp lay out, it must have been "selectvie attention" that I didn't do it. I guess I jumped in with both feet and got over-zealous at first, and then frustrated when I had overwhelmed myself. I just want to get 100% better, and fast. But the advice and reminders were helpful- and needed. I'll start in the kictchen, one cabinet at a time. Unfortunately it feels like this is going to take years. Honeslty, I don't know if I'll ever get through the bathrooms. I took one look at my make-up yesterday as I was putting it on, and just shook my head.

I'm scared to ask about CC issues, since I want to slow down and do one thing at a time. My main focus now is learning ingredients and cleaning my kitchen. Is there some specific CC issues I need to be aware of while doing this? (Before jumping in with both feet into learning about CC, I am trying to follow your advice and slow down.)

I won't have a summer break from school. It is a novel idea to be able to do this on my break, but I won't have one.

celiacmaine-iac, You had offered links to cheap gluten free food, can you please send me those?

cruelshoes, It seems as though I offended you with my "Sooo busy" comment. I didn't mean to imply that I am any busier than anyone else. I apologize.

cardine45, I can relate to where you are at with schedules and things. Thanks for your blog. I hope to check it out. Maybe I'll see some tricks in there I can pick up.

I still can't help but think that some of you guys that have so much experience with this should market your skills. Become some sort of Celiac Expert/Life Coach and go over to people's houses and help go through their stuff and teach them about it. There's a market there. And it could really help.