Susan's Quest for Good Health After a Celiac Diagnosis (comments greatly appreciated)

[Caitsmama]

Susan, Hoping you are feeling better -- that flu is nasty.. Take care!

 

[AmyBeth68]

Susan...

How are you doing? Just hoping you are feeling much better!

 

[deekaypee]

Susan, I was just checking your journal because we haven't heard from you on the C25K thread for a while. I had no idea! I do hope you're feeling better & on the road to recovery!

 

[larry's girl]

I'm back. So sorry I have been MIA for so long, but I went down hard with the flu. And then my DD caught a nasty stomach bug and - you guessed it - I caught that, too. So today is the first day I have felt half-way decent in about three weeks or so. Glad the worst of this is behind me - now I have to figure out a way to try to boost my immune system.

I want to say thanks to all of you for continuing to check in on me and leave your encouraging thoughts! It helps so much to feel that support through the times when you feel like digging a hole, crawling in it and staying there. I battle with being majorly depressed when I am sick, because I have so much to do and so little energy and time to do it that being sick adds insult to injury. But now that I am better, I am hoping for a more productive weekend than the last three have been. I feel so much better emotionally when I have something to show for my days off of work instead of laying around being sick!

I haven't been good about checking my blood sugars regularly since I have been so sick, so I have to get started with that routine again to see what effect adding fruit and a little carb occasionally is having. I do know that it is making me more contented with my meals, but if it is running my blood sugar up I'll have to rethink it. I intended to check it this morning, but was running late and didn't have time, so I'll probably check tonight after dinner and see what the meter says. Thanks for the meal suggestions, Beth - I will try doing more stir-fry meals and add cabbage. I like stir fry, but have never thought about shredding cabbage to add bulk. I think it's a great idea, so I'll let you know how that goes.

Today I felt well enough to walk. It's my first walk since I got the flu and decided to scale down from jogging/walking to my version of power walking. I think it went pretty well, considering. I warmed up with a regular walk for about 5 minutes, then picked up the pace until I was breathing heavily and continued from there for 30 minutes. I did notice that when I would get lost in my thoughts, I would slow down. Then I would realize I had slowed down and speed up again! I have no idea how far I walked, but I do think the intervals are a good thing. I got really tired about 10 minutes into the walk, but kept going because I felt that was just from not having exercised for so long. I got a second wind of sorts at about 20 minutes, and finished feeling pretty good. So I am going to call this one a success! If I feel well tomorrow, I will probably try to do another walk because it felt really good to get out and get the blood moving again. I can't believe I'm saying this, but I missed the exercise! Here's hoping I can stay well from now until May (and beyond too, of course) so I can work on my speed and distance for the 5K. I am planning to walk at the mall on Sunday. Depending on how I feel, I may go ahead and try for three full laps around just to see how long it takes me. That way I can work on reducing the time each week. I talked to my parents a few days ago and my mom informed me that we are all going to stay together in the race at Disney. As she put it, "Either we will all cross the finish line or none of us will cross the finish line." EEEEEEKKKKK!!! Thanks, Mama - no pressure there!!! Oh, well - all I can do is walk as frequently as possible for me and work on the distance walks on the weekends between now and the race - then hope for the best!

Linda - I wanted to answer your questions about celiac. The major problem I had (that sent me to the doctor who eventually diagnosed celiac) was severe fibromyalgia. I was in terrible pain all the time and beyond exhausted. I had to take a shower in two parts - I think I have described that here before, so I'll just say I did not have enough energy to shower and dress all at one time. It was becoming increasingly difficult to work or do anything else because I was so sick. I also had lots of stomach issues - chronic diarrhea and nausea - that I thought were part of the constellation of fibromyalgia symptoms. Larry saw an ad for an M.D. who works with a natural medicine expert. They combine traditional and natural methods to help people who have chronic health problems that are not responding to traditional treatment alone. He convinced me to make an appointment with them. They did a HUGE amount of blood work and discovered I had severe malnutrition. That eventually led the doctor to suggest I get tested for celiac disease. She recommended Dr. Daniel Fine's website (he is a Ph.D. who specializes in celiac disease), where he offers testing by stool sample to determine if a person has celiac. He developed this test and it is extremely accurate and not as invasive as the traditional small bowl biopsy that has been used for many years to diagnose celiac. I did this test (as well as the gene test to determine if I might have passed it on to my daughter) and sent them to Dr. Fine's lab through the mail. I received the results in about two weeks and that's when I had an "official" diagnosis. My daughter was subsequently tested (based on the gene test I had, I felt she needed to be) and she was found to have celiac, also. She never had fibromyalgia, but she did have lots of stomach issues (similar to mine), headaches and lots of fatigue. When she began the gluten-free diet, her stomach issues and headaches disappeared with a few weeks. Her fatigue went away almost as quickly and she said she didn't realize how bad she felt until she didn't feel bad anymore! As for me, my pain went away within a few weeks, but the exhaustion didn't really lift much until I stopped eating dairy foods. Then I began to see a positive change in my energy level.

As for where I got the diet information, I did Internet research and found various websites that lay out what a gluten-free diet consists of - and later I found a GFCF website so I knew how to cut out dairy and gluten at the same time. The biggest problem is foods that are not obvious sources of gluten (or dairy, in my case) that have "hidden" ingredients that cause a reaction. Once you know what to look for, then you just have to read labels on everything you buy to make sure you avoid the foods that are not safe.

If you think your friend would be interested in any of the websites I found in my journey with this condition, PM me and I will be glad to pass them on.

Well, have to dash. I'll try to catch up on journals later today or tomorrow. Thanks again to all of you - hope you have a great day!

Susan

 

[momof2minnies]

Susan,
First I am glad to hear you are feeling and doing better.Way to get out there and push yourself.Go for it tomorrow too!

Thanks for the info on celiac.I did copy a bunch of things online and my friend has a MD appt in 3 days.If she does not get the results(as far as testing) goes I will PM you for more info. I really believe this is what she is fighting but keeps blaming her meds and goes on and off them hoping they are causing the symptoms.

Thanks,
Linda

 

[toystoryduo]

I'm so glad to hear that you're feeling better, Susan! That's great that you were able to get out and get your walk in! Keep up the good work!

 

[MIdanceMom]

Hi Susan,

I am glad to hear that you are feeling a bit better. Give yourself time to rebuild some of your stamina. The flu can be deadly, so remember to go easy on yourself. You will cross that finish line. I have faith in you.

I am sorry I haven't had a chance to look up some recipes for you. I am going to suggest spaghetti squash, if you find that pasta is raising your sugar. Just poke a bunch of holes in it. Nuke it for 15 minutes. Let is cool for a bit,cut off both ends then slice in 1/2. Remove the seeds, and use a fork to "string" it. I actually prefer it to pasta now. If brown rice is, shred cauliflower and steam. It has some flavor, but the consistancy is the same. I swear I will look into some recipes for you. Do you have a Trader Joe's by you? If so, check them out. Also www.wholefoodsmarket.com has a recipe section that lists all allergens an NI in each recipe.




Beth

Hey woman, I have some recipes to email you. Can you PM me your email address? If you aren't comfortable with that, I will paste the links in a PM for you.

Beth

 

[postesf]

Hey!

 

[Caitsmama]

((((Hugs )))) Susan!! I can't wait to meet you in may!! You are doing GREAT... and you WILL finish this!! And then we will all celebrate!
Give yourself a big pat for doing the 30min yesterday -- work on the stamina now, and then worry about speed later!!

 

[postesf]

Hey...Just checking in you!!! How's your workouts??? Are back up to par now??? Feeling better? I hope so!


Stacie

 

[MIdanceMom]

Hope all is well.

Take care,
Beth

 

[AmyBeth68]

Hi Susan...hope this finds you well. We miss you around here. Just hoping that you are feeling well and able to get some exercise in! Stop by when you get a moment and let us know how you are doing!

 

[larry's girl]

SO SORRY I have been MIA for so long. Lots going on with me - I have some "big doins" (as Mickey says in the wake-up call at WDW) happening and I just haven't had a chance to get here to update my journal.

First of all, as always, thanks to all of you for checking in on me. I SO appreciate it! I am continuing to have stomach issues off and on - ever since the flu/stomach virus episodes I had last month (continuing into this month), my stomach hasn't been right. I will have days that I feel okay followed by days where my stomach feels lousy. I don't know what's going on - whether it's lingering effects of the illness or something else. I do know that last weekend, I decided to "experiment" (one day I'm going to learn to stop doing that) with how badly dairy affects me. Tara says it doesn't bother her that much, so I thought maybe I could get away with a small amount over the weekend. WRONG!!! It made me just as sick as gluten does - I had to take Monday off sick (like I have ALL the sick time left to do that - where is a sarcastic smiley when you need one???). So that just made me mad at myself - I should have known better. I really miss ice cream, but it isn't worth getting that sick. I have tried rice ice cream (which Tara really likes), but I just don't like the taste of it. I have even tried two or three different flavors, and it has an aftertaste I just can't get past. So I guess I am stuck with sugar-free popsicles if I want something cold and sweet!

Anyway, since the stomach thing is continuing to bother me off and on, I am basing what I eat and how much I exercise on that. If my stomach feels okay, I eat mainly meat, vegetables and a little fruit. If my stomach feels crappy (no pun intended), I can't really stomach meat and vegetables so I eat whatever I feel like I can handle (usually potatoes or homemade chicken noodle or chicken and rice soup). On the days that I feel okay, I walk before going to work. On the days that I don't, I opt to rest for that extra hour. I have yet to get back to the mall to do the distance walk, but am planning to do that this weekend if my stomach allows. I have an appointment with my doctor on April 7 for follow up with the thyroid tests, so if my stomach is still acting funky then, I am going to mention it to her and see if she has any suggestions. My blood sugar is lower on the days that I don't eat carbs, but it hasn't been HUGELY high on the days that I have (when I've remembered to check it - still bad about doing that when I don't feel well), so I am going to let her know that, also, to see if she feels I need more medication or if we can go on with things the way they are for a while yet.

I admit I have developed a somewhat fatalistic attitude about these lifestyle changes. As you all know from my previous journal posts, I have a problem with an all or nothing attitude. If I'm not eating perfectly, exercising perfectly and doing everything else perfectly, I tend to think I failed and am not accomplishing anything. I have worked on myself quite a bit over the last few weeks to change that because it was making me very unhappy with myself. So I am now at the point where I feel this way: I am doing the best that I can to eat a diet that is healthy for me. If I have a day where I don't do that perfectly, it's okay - tomorrow is a new day. That doesn't mean I intend to be lax for days on end (then it wouldn't be a lifestyle change), but if my health issues get in the way and I find myself eating mashed potatoes instead of cauliflower, so be it. I can eat cauliflower tomorrow. If I exercise today, terrific!!! Yay for me!! But if I don't feel well enough to exercise (not as in "I don't want to exercise today - I want to be lazy" but "I feel like crud today"), then I don't. I can exercise tomorrow. If I am able to finish the Disney 5K in May in the time frame allotted, super! There will be great celebration!!! But if I don't, then I don't. I refuse to sweat it anymore. My health is what it is. I hope it continues to improve - so far, when I look at the big picture, it has. But if it doesn't - or it doesn't improve as quickly as I want it to - then I have to accept that and live my life in a positive manner right now instead of waiting until I am "well" to do that. I am learning to be content with where I am today while still moving forward towards a better tomorrow. You see, I've come so far from where I was just a few yesterdays ago, and I have to learn to be proud of that. I'm not as far along on this path as I want to be. I haven't lost any significant weight on this journey - 10 pounds total altogether - and I'm not happy about that. But in the big picture, I feel better than I did a year ago. I have a little more energy than I did a year ago. So I figure if the weight comes off - however slowly - that's a bonus. If it doesn't and I stay really fat - then I stay really fat. I've been fat a long time - I know how to do it!! (Okay, that was a joke, but you get my point.) I just can't stay stuck at a point in my head where if I don't lose weight, I have failed. If I do, I will give up and stop exercising and eat whatever I want in whatever quantity I want - and that's not the way to go, I tried that already!! So that's where I am diet and exercise wise.

As for my "big doins" - I have reached a pretty big decision about my life aside from the healthy lifestyle changes. For some time now, I have been dissatisfied with how I make a living. I worked in the word processing center of a large law firm for many years. For most of those years, that involved creating and editing long, complicated legal documents and transcribing documents from tapes - something that I enjoy and am very good at. Over the last few months that I worked in word processing, that began to change - more young attorneys do their own word processing because they are accustomed to typing out documents on the computer through college and law school, so they don't need staff people to do that for them. So the word processing center began to work more with images, pictures, spreadsheets, databases, slide presentations, organizational charts, etc. And I did all that, but it wasn't what I truly enjoyed. Then I needed to go to a day-time schedule and there wasn't room for me in word processing on a day shift, so last spring I became a legal secretary. Now don't misunderstand what I am saying here - this is a good job. It pays the bills, I have pretty good benefits, and there is stability here. The problem is - I'M BORED OUT OF MY MIND!!! 90% of my day is spent filing, copying, filing, scanning, filing, preparing fed ex packages and outgoing mail, filing, preparing expense reports, filing, doing time entries, filing, making binders and did I mention filing??? I want to set my hair on fire just to see something different happen - I CAN'T STAND IT!!! I very seldom get to work on documents anymore, and that is what I love. So now that my daughter is grown and doesn't need so much of my time when I am home, I have begun to contemplate whether I want to spend the rest of my working years going to a job every day that I dislike so intensely. And I have decided that life is too short to spend most of your days doing something you don't love just to bring home a paycheck, if there is some way you can change that.

So I have decided to go back to school and learn to be a court reporter. Court reporters are in high demand, make a great living, and - most importantly - work with words all day long. They are constantly learning new and different things to prepare for trial or depositions, and that's what attracts me to this profession. I feel like my brain is shrinking - I need a mental challenge and this would definitely be a challenge. Of course, getting the education while working full-time (because I can't afford to quit my job) is going to be quite difficult - especially since I'd have to do on-line classes at night after working all day, then spend a good chunk of each weekend practicing on the steno machine to build my speed. You have to be able to transcribe 225 words per minute before you can graduate, so it's a formidable task to take on. Plus it takes a minimum of 2 1/2 years to finish school, and that's if you take a full-time class load on top of working a full-time job. So that's a long time to devote to that much work, but I think it's the right thing for me to do. I have spent all my spare time in the last few weeks doing the research and have finally selected a court reporting school that has a very well respected on-line curriculum. The next obstacle is coming up with the money to do it. Even with financial aid, you have to pay up front for the equipment, books and software for the first semester (which is a BIG chunk of change and more than we have available) to get started. So Larry and I have been brainstorming how we can come up with what I need. He says that if this will make me happy, it is the right thing to do. That's one reason I love him so - he's always in my corner!! So anyway, I'm not sure how we'll work it out yet, but we will - we always do!

If this happens in a timely fashion (and I hope it does), I will be starting class in the fall. That will mean I will have even less time for journals (and anything else that's not absolutely essential, for that matter), but I will do my best to keep you all updated on what's happening with me. Keep your fingers crossed that this works out - I REALLY want it!!!

Well, that was another book - my journal posts just seem to get longer and longer, don't they? Guess I have a lot to say when I manage to get here. Hope all of you have a WONDERFUL weekend - hugs!!

Susan

 

[toystoryduo]

Yeah Susan!

A new career opportunity sounds like a wonderful idea! I hope that everything works out for you.

I'm sorry to hear that you are still having stomach issues. I hope you are feeling much better very soon!

I love the new attitude that you have about letting go of the all or nothing thinking. You are such an inspiration to me! I struggle with "all or nothing" thinking a lot. The way that you have put it all in perspective makes so much sense! Thank you so much for sharing!

I hope you have a great weekend ahead! Take good care of you!

 

[AmyBeth68]

Wow Susan! About the job and potential career change...I'm SOOO excited for you!!! Follow your passion....it could be just what you need!!!! I truly hope it works out for you quckly! I know it will be a ton of work for a while...but you are up for the challenge.

As for not feeling that well still...I'm sorry to hear that. Sometimes our body just needs time to balance itself after the trauma of illness. I do hope you are feeling 100% better soon!!!

Sounds to me like you have a really healthy attitude going forward, plus you are excited about your new career path. I'm really proud of you!!!!

 

[momof2minnies]

Awesome Susan I am glad you are putting it all together.A career change is exciting.I bet being in court and hearing all the different stories you will hear will be interesting in itself.

Sorry to hear that you are not 100% yet.By the way my friend's test for Celiac was negative.

Have a great weekend,
Linda

 

[ScoJo15]

Hi Susan!

Really sounds like you have a clear head and a solid plan for yourself. I think it's a great perspective and I wish you the best with everything!!

Wanted to wish you a nice Easter holiday :

 

[Caitsmama]

Susan, first off -- Happy Easter!!
And good for you -- i love your attitude!! I think it would be great for you to learn to be a steno!! My dh is a deputy sheriff and works in a court room, and he always said what a great job they have!! Go for it!!!!!!

 

[postesf]

So...Seems you've decided for sure to do this court reporting thing huh? I think a change of pace will be good for you! I could use a change too... I know you guys will work it out! You can be successful a whatever you put your mind too!

How was your weekend??? Are you feeling any better??

BTW...I secured out flights for May...Now I just need to get a room for Friday night... I keep hoping a code or better rate will come out...

 

[MIdanceMom]

Susan,

I am sorry that you are still not 100%. You certainly have the right attitude about your lifestyle change. It is a longterm process, especially for someone with a chronic condition. I am happy to hear that you are cutting yourself some slack. I think you are doing a marvelous job. As for ice cream, have you triedTofutti. It took me awhile. Kate prefers it to rice dream, and I've tried it. It is not bad. Just a thought.

I think that your career change may be just what you need. It certainly sounds interesting. Let's face it, you spend 40+ hours a week working. It may as well be interesting. You will figure it out, and you have the determination to reach your goals. I'm proud of you.

tgake care of yourself.
Beth