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Scared 2-b Gluten Free


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19 replies to this topic

#1 sweeet_pea

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Posted 25 May 2005 - 08:12 AM

I was diagnosed with celiac disease 2 days ago. Positive blood tests and also opted to have the endoscopy done, which my doctor left up to me.

My first reaction to be diagnosed was frustration. I have been complaining of the same symptoms for 3 years. I switched doctors 4 times trying to find an answer to my pain. My first doctor dx me with bercidis due to the joint pain in my hips I had almost everyday. That was great! I took my medication faithfully (and I hate taking medication even for headaches). That didn't help. I was getting nowhere and getting more and more fatigued and more and more stomach aches after eating, more gas, and starting to have diarreah. I was not getting the answers I felt I needed so I switched doc.
Doctor # 2 dx me with irritable bowel syndrome and lack of sleep. Thats right gave me ambien to sleep and meds for IBS. Sent me to physical therapy for my severe hip pain occuring everday. When the PT did not work she advised I see a Chiropractor. Well that was a great adjustment and I still go on occasion but my pain was still there. My hips aching more than ever!! Then I ended up in the ER with pancreatitis. That was 1 year ago. The attending ER doc along with my own physician could not find a reason for my pancreatits. Nothing. They sent me to an abdominal surgeon who took my gallblader out. No stones, but "appeared to be diseased". I was also dx during that time with reflux. Well, that was it. My gallbladder had been making me sick. Sweet I will finally feel "normal again" - not!
In March after literally being in bed for a week so stiff and sore all- nearly every joint, sore muscles, muscle spasms for no reason, fatigued, depressed and anxious all in the same breath, I called my doc to get in. She was not able to see me for 3 weeks. I switched again.
Doc # 3 dx me with Fibromyalgia. Simple as that. Hello, goodbye! You have fibromyalgia. Here are some #s to call to see a specialist. Well one specialist no longer accepted pts but referred me out to someone else who was a great fibromyalgia specialist. I saw him right away and he was not a fibromyalgia specialist, they gave me the wrong name. I sat there and talked with him about my symptoms for 2 hours. He looked at me and said so, have you been tested for celiac disease? 'CAUSE THATS WHAT IT IS!!! Finally. After all this time I have been diagnosed. My prayers have been answered. I just don't know why they didnt do that simple lab test first!! :angry: :angry: :angry:

So now what? I'm a single 29yo female. I rearely cook. EVER! I don't even know where to begin. I eat out all the time. Love to go restaurant hopping and try new gourmet foods or hole in the wall cafes in little cities accross the country. Love it! It's one of my passions in life - really! So, now am I going to be confined to my kitchen? Slaving over a stove? Ordering food off the internet to my house? Is this what my life is going to be like now? I'm horrified to think that. HORRIFIED.

Where do I begin? I have known for 2 days and am eating non stop. 24-7 shoveling forbiden food in my mouth. Am I really going to feel better? Am I going to stop hurting? Will my bloated stomach go away? How can someone be malnurished (thats what my doctor told me I was) and weigh 147 #s at 5"6??

PLEASE HELP ME IM SCARED OF MY LIFE CHANGING!!!!!!!!!!
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Britt
SLC / Utah

Gluten free since May 23rd, 2005
Positive Bloodwork Positive Biopsy

For I know the plans I have for you declares the Lord. They are plans of good and not of evil to give you a future and a hope. Jeremiah 29:11</span>

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#2 uclangel422

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Posted 25 May 2005 - 08:44 AM

I am malnourished too but taking one look and me and you wouldnt be able to tell. I am one of the slightly overweight celiacs.

Anyway, you will feel better but it will take some time. It has been about 6 weeks for me and i feel fantastic. I take iron supplements and am finally getting all of my energy back. No more crippling abdominal pain for me and no bathroom problems. The first weeks were a constant struggle but you can break through it and things will definitely start looking up. It wont happen overnight though. Also, when you cut out gluten, consider cutting out dairy as well to start. I found out that i am also lactose intolerant.

I dont cook either. The best thing i have found is a George Foreman grill that i can plug in and cook on. I buy a lot of chicken breasts, lean steak, and ground turkey burgers and then throw them on there. As for veggies, i buy a lot of frozen and then just microwave them. Its all really easy to do.

Check out the dining out forums on this site, it helped me so much when i was starting out. I have been to a number of restaurants and not gotten sick, it can be done.

Good luck with this, things will get better. We are all in this together.
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#3 frenchiemama

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Posted 25 May 2005 - 11:04 AM

I know how you feel. I've been gluten-free for just over a month now. At first I totally freaked out thinking I wouldn't be able to eat anything. I really don't like to cook, I love to eat out and my biggest problem was that we love to travel.

I've just been forcing myself to cook more, and I get food from www.grandmaferdons.com which is driving distance from my house. I have found a couple places around town that I can eat out. So for now, things are stable.

I still have a problem with the travel thing though. Am I going to be able to walk into a restaurant in Morocco or Mongolia and be able to get something to eat? We had both of these trips planned within the next 2 years, but now I'm not sure what we are going to do.

My best advice would be to just start small. Plan your meals for a few days at a time and don't worry about what you can and cannot do. I'm finding that if I really want something to work out, I can somehow find a way for it. Once you get used to the diet it doesn't seem so daunting.
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Carolyn


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#4 frenchiemama

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Posted 25 May 2005 - 11:06 AM

Also, once you start seeing some results it will all seem worth it. A month ago I was ready to claw my own skin off because of itching from DH, and now it is almost gone. It has given me a ton more willpower.
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Carolyn


"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson

#5 KaitiUSA

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Posted 25 May 2005 - 11:13 AM

It may seem overwhelming at first since you are not sure of what you can and can't have. It's not as overwhelming as it seems. It definitely gets easier with time.
There is great info on here about some wonderful products we can have.
There is also a forbidden and safe food list which you should take a look at...it will help as a guideline for beginning. http://www.celiac.co...html?p_catid=12

Other things you are going to need to check are things like lipstick and things you put on your hands, face, and head because they have a high chance of entering your mouth.

This site will help you out tremendously so you can find the brands you can use very quickly.

It can take a while for symptoms to go away...mine took 3 months to get alot better and another few to get back to normal...but people vary. The diet is definitely worth it..if you ignore it your chances of things like cancer go up 40-100 times and life expectancy decreases by about 10 years.
There are foods that are just as good that we can eat and they won't hurt us...

By the way I was malnourished as well...I lost weight with celiac but some people gain weight and some people stay normal size. Some people get no symptoms. Nevertheless the gluten still does damage to the body and then it does not allow the nutrients to be absorbed.

If you have any questions just ask...and feel free to contact me anytime if you need some help :D
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Kaiti
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Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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#6 luvs2eat

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Posted 25 May 2005 - 11:48 AM

Count me as one who's gained weight! Ugh!

Eating out will be a challenge... especially if you're not a cook and don't know how things are made.

But eating at home can be easier. Just cruise around this site and read lots of different posts. Folks here have great ideas and have done so much of the work FOR us! There are even lots of convenience type foods that we can still have.

Think about learning to cook too! You can start your own gourmet club!


Hey frenchiemama... I wanna grab all those little faces and stick in my pockets!!!
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#7 Guest_imsohungry_*

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Posted 25 May 2005 - 11:50 AM

Oh sweetie, I know how you feel. I was in your same situation a few months ago. I am about your age, and all throughout college we went restaurant hopping to all the "holes in the wall" and looked for any ethnic food rather than eat another hamburger. But, I'm getting used to this Celiac thing, and once you start to feel a little better...believe me, you'll be glad you made the sacrifice. ;)

It actually gets to be "routine" after a few months...it doesn't even feel like a burden. People on this site are great. They will talk you through it.

And as far as cooking goes...hee hee...I don't cook either. Well, let me rephrase that, I didn't used to cook either, but I'm getting better. :rolleyes: Actually, I don't really enjoy it that much, but I'm learning all kind of easy dishes and I'm actually getting kind of creative...I try to make things that take about 20 minutes or less. :)

Well, good luck to you. Welcome to the forum! -Julie B)
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#8 domineske

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Posted 25 May 2005 - 11:58 AM

I don't know whether this will make you feel better or not, but neither my wife or I were fond of cooking, we weren't particularly good at it, and since we both worked we spent a lot of time in restaurants.

Once both of our daughters were diagnosed, that all quickly changed. We really don't enjoy restaurants anymore... it's just too much work and too scary. We're both getting a lot better at cooking, and I rather enjoy it... expecially since I know it's for my girls. I'm learning more every day and might even take some classes.

Also, the reduction in restaurant costs helps defer the higher cost of gluten-free food.

Good luck!
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#9 jenvan

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Posted 25 May 2005 - 12:27 PM

One of the best things I think for coping is to discipline yourself to take it one day at a time. Rather than thinking "what will i eat for the rest of my life?" ask "what will i eat today." Granted, everyone has moments of being overwhelmed, and that is totally valid and okay! You'll have moments like those even a while from now. But I think it can help to focus on one day or one meal at a time. No worries if you don't cook. You can still do lots of things like pick up premixed bags of salad and veggies at the grocery store, precooked bags of rice, beans etc, frozen veggies, fresh fruit and veggies and certain tv dinners like Amy's (i eat them a lot). Go here and ck out the many pages of gluten-free meals they offer, very good: http://www.amys.com/...rm_glutenfree=1

I am trying to find a link to the list, but there are quite a few restaurants with gluten free menus: Outback, PF Changs, Carrabba's, Ted's Montana Grill are the first ones that come to mind. Plus the fast food places list which items are gluten-free on their menu. Ck with local restuarants too, get a restaurant card, learn ingredients and you will find some restaurants that will work with you to make a gluten-free meal. As time goes on and you become more knowledgeable and acclimated to the diet, you will gain some of your flexibility with restaurants back.

Can someone post a link to the delphi restaurant list for Britt? I believe that's where I got mine--having computer issues right now...

Good luck and welcome to the board. You will definitely find help and encouragement here. I sure have !! :)
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Indianapolis, IN

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#10 jenvan

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Posted 25 May 2005 - 12:34 PM

Oh, and there is also the Thai Kitchen dinners, they have a ton of gluten-free stirfries with rice noodles etc. Go here: http://www.thaikitch...infocenter.html

and if you go here, to the Gluten-Free Pantry, they have some gluten-free "hamburger helper" type meals where you add some meat, throw in a pan and simmer: http://www.glutenfre...jectGroup_ID=74
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Indianapolis, IN

gluten-free since Feb 2005
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#11 tarnalberry

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Posted 25 May 2005 - 01:54 PM

So now what? I'm a single 29yo female. I rearely cook. EVER! I don't even know where to begin. I eat out all the time. Love to go restaurant hopping and try new gourmet foods or hole in the wall cafes in little cities accross the country. Love it! It's one of my passions in life - really! So, now am I going to be confined to my kitchen? Slaving over a stove? Ordering food off the internet to my house? Is this what my life is going to be like now? I'm horrified to think that. HORRIFIED.

Where do I begin? I have known for 2 days and am eating non stop. 24-7 shoveling forbiden food in my mouth. Am I really going to feel better? Am I going to stop hurting? Will my bloated stomach go away? How can someone be malnurished (thats what my doctor told me I was) and weigh 147 #s at 5"6??

PLEASE HELP ME IM SCARED OF MY LIFE CHANGING!!!!!!!!!!

Yes, when you go gluten-free you really will feel better (though it may not be overnight). Yes, you should stop hurting. Yes, your bloated stomach should settle down. And you can be malnourished at normal weight if you're not absorbing enough of ALL the nutrients your body needs.

I know it can seem scary at first - and I can't really imagine how scary it is if you never cook. But all change can be scary. It's important to remember that it's scary because you don't know what it will be like, and our imaginations often come up with the worst, rather than the best. If you work towards the change giving you the best, however, that's what you'll get.

You note that you love trying new gourmet foods or hole in the wall cafes - most of them make their stuff from scratch. So not only do you have a chance at asking about a few of those dishes being gluten-free at the locations themselves, but you can try making them in your own kitchen.

I'm not sure how the phrase "slaving over a stove" got equated with cooking, but you can cook all your meals from scratch with exactly as much time over a stove as you want to. Cooking is a skill, like driving, that you learn. You can take classes, or you can do it on your own. You can read books or buy videos. But mostly you just have to practice. And what's important is not that you practice the way other people "drive" (cook), but you practice the way YOU "drive" (cook). Not up for slaving over the stove all the time, don't make gluten-free ravioli from scratch (staring with the flour to make the dough). Make something that's faster, like a spicy, colorful stir-fry (20 minutes), seared ahi with sauteed vegetables (20 minutes), a chicken salad (10 minutes, if you've got leftover chicken), chicken-rice soup (30 minutes (with white rice)), or a vegetable pilaf with quinoa (30 minutes). Not that all of those things are made with a handful of fresh ingredients you can get from the produce and meat counters at any grocery store. (At least, in SoCal, you can also get quinoa in most regular grocery stores.)

A lot of people noted to give it some time - they couldn't be more right. This is a big change. It's one that hits at the very basics of life - eating. It's scary, it's big, and it can seem really overwhelming. But moving away from home is also a pretty huge change, and you've done that (probably?! I hope I'm not putting my foot in my mouth there!). Read, learn, practice, and keep trying. It's worth it to significantly reduce your risk of cancers, osteoporosis, anemia, and other autoimmune conditions and to increase your expected lifespan by 10 to 20 years.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#12 sweeet_pea

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Posted 25 May 2005 - 01:59 PM

Wow. I was running some errands today wondering if my sob story would even get read. You guys are great! All the input so far is incredible!!! In one day, just one day, I have learned restaurants (and PF Chengs is one of my favs) are now starting to carry gluten free menu items. I have choices for food! I really don't have to cook ALL that often!! WOO HOO!! :D Just a couple of you have made my day a whole lot brighter.
Thank You!! Thank You!!
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Britt
SLC / Utah

Gluten free since May 23rd, 2005
Positive Bloodwork Positive Biopsy

For I know the plans I have for you declares the Lord. They are plans of good and not of evil to give you a future and a hope. Jeremiah 29:11</span>

#13 sweeet_pea

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Posted 25 May 2005 - 02:13 PM

But moving away from home is also a pretty huge change, and you've done that (probably?! I hope I'm not putting my foot in my mouth there!).

Tarnalberry -

Ha ha yes im out of the parents house. Have been for quite some time now!! :lol:

Thank you for your suggestions. I think I'm going to try making seared ahi with sauteed vegetables first. Wow that sounds great!!!
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Britt
SLC / Utah

Gluten free since May 23rd, 2005
Positive Bloodwork Positive Biopsy

For I know the plans I have for you declares the Lord. They are plans of good and not of evil to give you a future and a hope. Jeremiah 29:11</span>

#14 BellaSara

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Posted 16 June 2005 - 01:47 PM

For anybody that lives in the Chicago area or close to a Woodman's, you are in luck. They have an entire gluten free section, with more than my local health food store and it's cheap! Shortly after eliminating gluten from my life I lost my job, and didn't think I could afford to eat all the pricey stuff at the health food store. They have all the flours, boxes of pizza crust "hamburger helper" bread, pasta and more. Sorry I was just so excited when I walked out of there knowing I was going to go home and make a pizza I could afford, I just had to pass it on
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#15 Guest_Viola_*

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Posted 16 June 2005 - 02:07 PM

I'm so glad you found a great place to shop! Doesn't it really feel great to find a gem of a store? :D I always feel super good all day when I find something new, and affordable :rolleyes:
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