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Frustrated And Really Pissed Off


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29 replies to this topic

#16 GFdoc

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Posted 02 February 2004 - 09:01 AM

Hi - this is in reply to corryne. There are lots of great gluten-free mixes you can get (try Gluten Free Pantry's brownie mix - I make up a batch, cut into squares and freeze - they are addictive and AMAZINGLY good! in fact, I serve them to nonceliacs, who compliment them) You should learn to bake on your own - the mixes are really good, but if you want to experiment, I made Toll House chocolate chip cookies yesterday using Bette Hageman's gluten-free featherlight four (I added only xantham gum to the original recipe) and the cookies were a huge hit at the superbowl party we were at (and I was the only celiac there).
As for restaurants, I would recommend staying away from Bennigans-like chain restaurants - they usually don't make their food fresh - so you can't ask for modifications on any meals. You are better off going to a better/more upscale place that makes everything from scratch. It's worth the extra bucks. Try a fresh seafood restaurant or a steak place. Good Luck.
Sara
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Sara gluten-free since 9/03

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#17 Guest_jhmom_*

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Posted 02 February 2004 - 10:12 AM

corryne:

I agree with GFdoc the Gluten Free pantry Brownie mix is OUT OF THIS WORLD :D I just made a batch last night they were very thick and YUMMY!!! My non-celiac husband and son LOVED them too!

ALso Outback Steakhouse has a gluten-free Brownie dessert with ice cream and whipped cream, its good but not as good by itself as the one mentioned above.
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#18 AntiGluten

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Posted 02 February 2004 - 09:18 PM

Hi everyone. Thanks again for replying.

Shirley - Thanks for the electrolyte tip. I've been eating bananas more frequently and also got a big bottle of gatoraide in the fridge to drink, it's supposed to have electrolytes too. It seems to be making a small difference.

Corryne - You don't have to worry about lack of brownies, cookies, cakes, etc. on a gluten free diet. There are plenty of great mixes out there. The gluten free brownies are excellent, in fact a lot of my friends have said they like them better than traditional brownies. One thing I like to do is take a brownie and put it in the microwave for little bit to make it hot, then put a scoop of chocolate chip ice cream on top and let it melt a little. Also, there is a chocolate chip cookie cake mix that I really love. We've made it a few times. Pamela's chocolate chip cookies are great in milk too.

Mariann - The Prometheus lab is definately the best. My mom had taken my great grandmother to our doctor for classic celiac symptoms and he's tested her twice. They sent the blood to Quest diagnostics here in Houston, and they said it was negative, which I think is BS. My Aunt has also had her family tested since finding out what my mom and I have, and one of her daughters came back positive, then got tested again and was negative the second time. That kind of pisses me off. She doesnt have any symptoms yet except for stomach aches every now and then, but my Aunt said she would keep an eye and get her tested in a couple years or sooner if symptoms occur, she's still pretty young though.

YankeeDB - I'm glad that you found out that you have celiac disease and know why you've been feeling bad. The diet really isn't bad. It's not. The only thing I'm frustrated with is all the hidden gluten and everyone you meet not having a clue what celiac is. It's good too that your friends sound supportive. Luckily my friends are quite understanding and accomodate when they can. I still miss going out for pizza with them though. And thanks for the compliment on the car. I wish it were mine. It's actually a Ferrari Enzo. My friend and I saw it last september at Ferrari Challenge at Texas World Speedway. It's a $660,000 car, very fast.

My mom and I got the "Breaking the Vicious Cycle" book in the mail today so we're gonna start the SCD soon. I really hope it helps clean out my system and lets my intestine heal 100% (which I think it hasn't even in 2 years, I was in pretty bad shape). Even if I have to stay on this special carbohydrate diet, I won't care as long as I have energy again and can go a full day without dozing off or feeling clouds in my head.
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Name's Lee, 24/m/tx
Diagnosed in 11/01
I prefer the Paleo Diet over all others.

#19 scribble

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Posted 02 February 2004 - 09:29 PM

I don't really have a reply for you, I just need a little help. How do I post a message on this board. Call me crazy, but I can't seem to find a link/button for new posts. Anyway, I'm currently on a 14 day gluten free trial, and I have a few questions.
thanks,
Scribble
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#20 Guest_jhmom_*

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Posted 03 February 2004 - 08:30 AM

At the top of the page on the right you will see a button "New Topic" click it and away you go....
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#21 gf4life

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Posted 03 February 2004 - 09:32 AM

Shirley- Thanks for pointing out that article. I read it and was very glad to see that more researchers are picking up on the fact that the intestines is the place to test for antibodies! Again, thanks.

Corryne- You certainly do not have to live without your sweets. You just need to make your own gluten free ones. My kids love the gluten-free brownies that I make. I use a box mix and I have tried a few brands, they all seem to be good. The trick is to not eat too many of them! :D You should certainly try it. With such a restrictive diet, you should not deprive yourself of occasional treats, especially with so many good gluten free products available to us.

Scribble- were you able to post a new topic? The "New Topic" buttons are located on the top of the page and the bottom of the page right next to the "Add Reply" button.
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#22 noglutenallgood

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Posted 11 February 2004 - 07:50 PM

In response to AntiGluten going on the Specific Carbohydrate Diet (SCD), I applaud you! This diet is even more difficult than a gluten free diet, but I have read nothing but great things about it. I would really like to know if it helps you. One of the books that Elaine Gottshall references in Breaking the Vicious Cycle, is Management of Celiac Disease by Drs. Sydney and Merrill Haas. It's an old, but very interesting book; it was published by two doctors a father and son in the 1950's. They had remarkable success with the SCD. This book is out of print and difficult to find, but worth it.
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#23 johnnygluten

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Posted 13 February 2004 - 09:24 PM

BEWARE THAI KITCHEN (brand) SOUPS.

Pics: http://www.shopnatur...ory_Code=B32405

I've been burned several times by "Thai Kitchen" soups.

Some of them say "Gluten Free", Some of them say "MSG FREE", and some of them say both. I've gotten VERY sick several times after eating the ones that only say one or the other and list "Natural Flavor" as one of the ingredients in the flavour packet. It can make things very difficult, especially if you're not doing all of the shopping yourself.

I'd avise that you **always** be wary when a supposedly safe product has "Natural Flavor(s)" listed in the ingredients... I'm new at dealing with all of this, and I am NOT a doctor, but I've read that a *LOT* of people with Celiac disease are also VERY allergic/sensitive to MSG (as I am).


Johnny Gluten

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#24 sportnut

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Posted 18 February 2004 - 12:39 PM

Hi everybody. I was diagnosed about 2 1/2 years ago and it's been a constant struggle ever since to stay gluten free. I used to be on the message boards every day but have been lax about it lately. But I've been having more problems than usual lately and wanted to see if anyone would share if they're having the same problems.
Which is horrible mood swings. I go from being overly jealous over anyone not having celiac disease, to being angry at my boyfriend for no reason at all. It's starting to effect my relationship and I'm sick of it. Does anyone else out there have uncontrolable and frequent mood swings? If you are willing to share some experiences it would help a lot. I'm glad I'm back. I"ll check in a couple of days to see what anyone has to say. :unsure:
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#25 Guest_Libbyk_*

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Posted 18 February 2004 - 08:35 PM

Lee, sport nut-
another thought on the fog-brain thing- do you snack a lot? I find i have to eat AT LEAST every two hours, or I get stupid, cranky and irrational. (sound familiat to anybody?) Anyhow, the things that get my though are fuji apples in peanut butter (or almond butter- even yummier) and string cheese. I eat apples and cheese or nuts at leat once a day and when I am on the road, sometimes they are my stple food. And you can take them into most (non-lab) classes.

sport nut- When I got diagnosed, my boyfriend was excstatic. I am a pretty good girlfriend for the most part, but went "crazy" once in a while. we both have big hopes for our gluten-free future. the mood swings can be breath takingly swift, but now we know that most of the tiume, a snack wil head things off at the pass. I am a little worried that I will get big as a whale by doing this. But, if I eat, and 30 minutes later, I am still mad, THEN we get into it. if suddenly things are all better, then we know thta it was my belly, and not him being a jerk. (This is nearly always the case. ) did I mention I am hypoglycemic too?

peace,
Libby
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#26 fanfaire

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Posted 19 February 2004 - 01:56 AM

AntiGluten, I'm wondering if it's possible that you have food allergies in addition to celiac disease? That it's not necessarily just gluten that sets you off. I could be wrong of course, but I thought I'd just throw that out there.

Have you ruled out other autoimmune diseases? Brain fog, mood swings, etc. also occur with hypothyroidism, connective tissue disorders and fibromyalgia. I have all three of those ailments in addition to being gluten intolerant (no official celiac diagnosis). Thyroid and adrenal issues in particular can make you spacey, moody, light-headed and just feeling like you could die of exhaustion.

Then again, it could certainly be hidden gluten. Just the variety of possibilities is frustrating, isn't it? <_<

Hope you do find the source of the problem. I am just now finding out what it's like to be free of stomach pain, for the first time in at least six years. :P
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#27 sportnut

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Posted 23 February 2004 - 10:47 AM

Libby,
I agree with you that the mood shifts come on quickly and without notice. I find myself saying things that I don't realize I'm saying. I have to say I don't snack. I don't eat much at all. Usually just tea for breakfast and then some dinner. It seems like nothing tastes like food anymore. Maybe I'm just tired of eating the same things over and over. Cuz what I really want is a Big Mac!!! I'm going to try and do the snack thing and see if it helps even things out. Don't get me wrong, my boyfriend is great about working around the whole celiac thing, but he's getting pretty tired of living with Dr. Jekyl and Ms. Hyde.
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#28 ham&ex

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Posted 23 February 2004 - 02:12 PM

AntiGluten, it looks like you might have stopped checking this already, but I'll put in my two cents anyway.

I am also 19, have been off gluten for 2 years and live with my mother while attending trade school. My Ma is also gluten intolerant so our house is gluten-free and there aren't any poisonous crumbs around to hijack our dinner plates.
That being said, I still get contaminated food sometimes (even when it says "gluten-free".) If I have eaten "dirty food," that is, food with gluten in it, I know by the next morning because I wake up looking like the un-dead. Small children run from me and so they should.

On the bright side, I have figured out how to minimize the monster effect when I accidentally ingest. I feel better much faster if I take enzymes, sleep ten hours a night, and drink more water. I think I prolonged the healing process for a while by sleeping to little.

I have a love/hate relationship with this whole thing. I'm healthier than ever and I'm a better cook than ever, but I do have the occasional, really, really bad day.
I know how you feel.

-Solveig
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#29 tgirl

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Posted 25 February 2004 - 09:09 AM

Hi

I am new here. Totally angry. Very sad and depressed. I have been feeling so so terrible for such a longtime. You go to the doctors and they think you make it all up. Although I am feeling overwhelmed it also makes me feel better that I am not alone.

I am well on my way to getting a celiac diagnosis so I am gathering all possible information.

Are there any members out there who live in the Ipswich MA area?


THANKS FOR THE SUPPORT!

LISA
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#30 Guest_aramgard_*

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Posted 25 February 2004 - 03:28 PM

Lisa, Don't feel you are ever alone. My problems began as a 12 year old, culminating in the dermatitis as a 15 year old. After treating me for a year the allergist's couldn't figure out the problem so they told my Mom to take me to a psychiatrist. It only took the doctors another 50 years to figure this whole mess out and them it was me who suggested Celiac. Don't feel alone about doctors not understanding. They don't have time to understand, just treat the symptoms, and not even look for the underlying problems. I hope you begin to feel better about yourself, and about this disease. Shirley
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