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Looking For Support


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21 replies to this topic

#1 KLTerry

 
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Posted 18 January 2005 - 11:00 AM

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I was diagnosed sometime last summer, but I was in denial until just recently. Can anybody give me some advice on what it was like when you were first diagnosed and how you took it and what I can do to start feeling better? I know stay gluten-free, but that's a lot easier said than done when you're not sure where to begin. I've been to the Whole Food store, and I bought some gluten-free stuff, but I still not sure how to cope with this disease. I don't want it to lead to anything more serious, and I most definitely don't want to be in pain. I really need a friend who's dealing with the same issues. I'm feeling isolated and very depressed.
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Diagnosed 6/04
Diagnosis retracted 7/04
Diagnosed again 8/04
Trying to be gluten free since 1/05. It's hard!

Pittsburgh, PA

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#2 cdford

 
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Posted 18 January 2005 - 02:08 PM

Since I had been almost fanatical about whole grains and homemade breads, it was a tough transition. My body felt jerked around without the gluten. It reacted almost as though I had been addicted to the gluten like a drug.

I had a hard time figuring out what to eat and what to avoid. Once I did, however, I began to feel better gradually. Now I'm glad I finally gave in and admitted that I had a problem. I just wish I could get some other family members to finally give up the ghost and go gluten-free.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#3 Guest_PastorDave_*

 
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Posted 18 January 2005 - 06:41 PM

Hi there. I just wanted to add my 2 cents. I just posted this elsewhere, but I like how it sounds. Living Gluten Free is 90% attitude. If you look at it like a handicap (and let's be realistic, it's not) then you are going to be miserable.
The first thing I did after being diagnosed (I found out I had inherited it...thank's mom) was to go on a Gluten binge, I ate all my favorites for a week then went totally off of it. My wife (who is very supportive) went on ebay and found books by Bette Hagman. She writes great cook books that also have a few chapters on living Gluten Free, including what to avoid.
Some quick tips from what I have learned:
1. Waiters can be your friend...but tip well.
2. Never take the "free samples" at the store without checking it out first (Microwavable rice has gluten, weird huh)
3. Some people will NEVER understand what it means to be Gluten Free (I love it when people offer me white bread...well it's not wheat bread is it? :ph34r: )
4. The Gluten Free Pantry is expensive, but can be your friend
5. Spices can be a lifesaver!
6. I know your mother said not to....but "play" with your food...experiment with what you know you can eat...maybe you will find something you really like. Even at restaurants...I never know I liked blackend catfish!

Good luck and God Bless.
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#4 rmmadden

 
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Posted 19 January 2005 - 06:55 AM

I am a recently diagnosed celiac disease patient and I certainly know what it's like to go "Cold Turkey" off Gluten. It's overwhelming!

First thing my wife and I did was go to the local library and check out some books on Celiac Disease and Gluten Free cookbooks. I figured I would look through some of these books and If I liked them then I could then purchase a copy to keep at home. This gave me a base of knowledge to start my gluten-free living.

Next I started reading the labels of everything that I had in the house. I went through the pantry and seperated all the glutenous foods that we had and gave it all away to a local food kitchen. I then went to our local health food stores and began making notes (prices) on various gluten-free products (Flours, Pasta, Soups, Cookies, etc.). That way I familiarized myself with the stores offerings and was able to stretch our shopping dollars.

Now once a week my wife bakes me a loaf of gluten-free bread so I can have sandwiches etc. We also eat a lot of vegetables, rice and potato's. The key to staying away from Gluten is to read, read, read the labels. I read everything and if I have a question regarding the ingredients I call the company or research it online. I started a 3-ring binder of gluten-free info including recipie's and any other tips I pick-up from these message forum's. I also keep a food log to check everything I eat. That way if I get hit from a "Hidden Gluten" I can go back and examine what I ate and try to identify the offending food item.

It is a lot of work and it requires your constant attention. Hang in there and best of luck!

Cleveland Bob :)
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"Dreams Are What The Future Is Made Of"

Endoscopy & Blood Work Positive.....
gluten-free Since December 2004.....
Soy Intolerant August 2007......

#5 Guest_PastorDave_*

 
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Posted 19 January 2005 - 03:05 PM

I like that Cleveland Bob. Read read read...I have gotten so into the habit of reading that I will find myself reading the ingredients to stuff I'm not even planning to eat, or that I know has gluten in it. Habits are a wonderful thing.
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#6 2new2celiacs

 
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Posted 19 January 2005 - 03:41 PM

I was diagnosed in Sept. 2004. Since then I have gone through several different phases. Denial, self-pitty and most recently anger :angry: . I am angry that I am so stubborn and that I lack the self control needed in order to make myself feel better. I find myself very moody and I always am tired. Please tell me there are others of you out there feeling this too. I am finally starting to educate myself on Celiacs and as I do, I understand a little more each day. I know that all this (emotions) will pass and once I have the food substitutes for the things I can't have, I know that things will be a little smoother and of course the joy of feeling better will follow! So, now that I got that out, I too found it difficult to shop for gluten-free food at first. I learned that co-ops were good, natural sections of the grocery store were good as well as your regular grocery store too. THAI brand oriental food found in the oriental isle of the grocery store will label down by the ingredients what products are gluten-free or not, I buy the peanut rice noodles and mushroom rice soup for a quick microwavable lunch at work. There is actually more of a variety than I thought. I finally shopped online and found the best food at www.glutensolutions.com. as well as the gluten free pantry Sterks makes really good bagels, that in reality taste much more like english muffins-love these. Tinkyada brand pasta cooks and tastes just like the real thing and just a heads up and in my own opinion of course, the corn pastas taste bad and fall apart when boiled.

please forgive me for rambling, I am shy and new to this and am happy I found a place where I discuss this with others like me.

Thank you for listening and good luck to everyone.

-Sarah :D
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Sarah
"Small Town" Minnesota, USA
Diag:9/04, positive blood tests
Trying to be strictly gluten-free

#7 mela14

 
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Posted 20 January 2005 - 05:00 AM

Besides feeling ill quite often I find myself upset and angry over the whole situation. Angry at the doctors for missing this(for years) and still not able to feel better. I feel that it has gone on so long that I now have other intolerances and it is so hard to eat anything without feeling sick. Once I am in a flare up it lasts for days and then of course the depression and anxiety sets in. This is a good place to come ...sharing experience with others and learning. I'm sure it will take a lot more time but this is the road that we are on now.
Learning to read labels is a challenge..but it is a must.
good luck....to all of us!
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#8 KLTerry

 
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Posted 20 January 2005 - 05:59 AM

Well, I'm glad I found this board, then. I'm having a hard time finding a support group in the Pittsburgh area. I've looked on line, but I guess I'm just not looking in the right places. I think I need to find another Celiac in my area who can take me shopping with them. I'd also like to take my family (or at least those family members who feel like coming), so they can realize what I'm dealing with here.
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Diagnosed 6/04
Diagnosis retracted 7/04
Diagnosed again 8/04
Trying to be gluten free since 1/05. It's hard!

Pittsburgh, PA

#9 WLJOHNSON

 
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Posted 20 January 2005 - 09:36 AM

Hi,
I have dealt with severe asthma and food intolerances since the age of 8, in the 1950s, long before anyone ever thought of Celiac Disease. I had many bouts of pneumonia and hospitalizations, as well as spending nearly a fortune on doctors, specialists, and medications before I realized that the medical profession didn't know what to do with my symptoms.

Finally, in the late 1970s, after having to take time away from teaching because of an ulcer, spastic colon, and asthma, I started realizing that food played a great part in how I breathed and felt, so I began eliminating all grains, and eventually all milk and dairy products, as well as egg whites. Voila! Relief! Now I know that yeast is off limits for me as well, since trying gluten-free products containing that.

I basically always must return to eating ONLY meat, fruits, and vegetables if I want to stay healthy, then I can add a few things like nuts & seeds once I've gone back to square one for awhile. I think that preservatives, food colorings, modified food starch, etc. add a lot to our discomfort without us even realizing it until we've gone back to basics to rid our systems of the offending ingredients.

Oh, and let me add that STRESS is one of the biggest offenders in my life, making me feel grumpy, tired, irritable, anxious, and angry. We Celiacs are sensitive souls, let's just admit it. Our antennae seem well attuned to taking on the woes of the world or of other people it seems, so we have to really guard ourselves in that respect, and we have to take good care of ourselves first if we want to take any kind of care of anyone else.

Good luck to those of you who are just getting going with this special diet. It does get much easier as you go along, and you will feel better. Then you'll be able to help others just by offering up what helped you. Welda
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#10 mela14

 
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Posted 20 January 2005 - 09:45 AM

well........thanks for the support and reality check. You are sooo right! WE are ultrasensitive and have to work really hard at staying healthy. I am finally piecing together the different peices of this health puzzle for myself. Boy is it complicated!
What do you eat for breakfast?
I have so many other intolerances...like soy, milk, eggs, peanuts, yeast.....
not sure what to eat anymore.

Thanks,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#11 poodlethree

 
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Posted 20 January 2005 - 01:11 PM

Boy what a relief to read that someone is feeling the same way I am. I too feel isolated. I was just told I had Celiac after years of suffering and not knowing what was wrong.

I am going through denial. I will tell myself that the doctors were incorrect and it has to be something else wrong. How can eating something cause so many problems.

My doctors found I had the condition by running test to find out why I was on such a high dose of thyroid medicine. It seems there are not too many people that take such a high dosage. Because of the Celiac I dont absorb meds in a proper manner?? I thought everyone had what I have always called stomach attacks. I really went around for years suffering and not wanting to talk about it.

I will go without eating anything containing gluten for days....feel better....then jump into the cookie jar.....and boy it usually takes 48 hours and then the fun starts...I have had to stay in the bed hurting for 2 days straight. I should learn my lesson but I guess I just hardheaded.

I know that in time we will get used to all of this. Its so great to have a board like this one. I never knew how many people were going through the samethings that I am experiencing.

Hang in there! And thanks for sharing!
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#12 mela14

 
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Posted 20 January 2005 - 05:36 PM

I'm a little different with my problem in that I really try hard not to eat gluten...no binging...no cookies.........I'm ok with that but.............what really gets me is the hidden or gluten that is unknown to me. I get so angry at myself and feel that I should have scrutinized better. Like today I was so proud of myself, when I forgot my lucn I did the sensible thing and ordered white rice and steamed chicken with vegetables from the chinese restaraunt. well, right after I go sick and swollen and sore and nauseous and dizzy...get the pic?? My heart was racing...I was having a reaction. Someone from another thread thought perhaps the rice was cooked in ckicken broth? Could have contained gluten....thinking back I now feel that the chicken although claiming to be steamed...maybe have been steamed or cooked with broth.
I should have known it was too good to be true. I'm better off not eating, enduring the migraine and crappy feeling from lack of food and then deal with it when I get home!!! Actually...time to start stocking my frig at the office.
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#13 ldteacher

 
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Posted 22 January 2005 - 12:48 PM

Hey! I just found out on Wednesday that I have Celiac Disease. I am feeling a bit overwhelmed and little bummed. I went to the store today to buy groceries. That didn't work out that well. I am still learning what I can eat and what I can't. Is there someone who can give me a little advise? I am not sure where to begin or who to talk to.

Thanks,
Christy
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#14 VegasCeliacBuckeye

 
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Posted 22 January 2005 - 01:02 PM

KL TERRY,

I did a search on google and found this support group in Pittsburgh...

Group: Greater Pittsburgh Celiac Sprue Support Group
City: Pittsburgh
Contacts:
Mary Neville
1446 Greenbriar Court
Library, PA 15129
412-833-9507
Lorraine Weaver
220 Trotwood West Dr.
Pittsburgh, PA 15241
412-835-4983
Corrine Heyz
412-864-4137
Internet:
Mary Neville, mpnev@aol.com
Lorraine Weaver, 71024.3427@compuserve.com
Updated: 10 Mar 2001

Hope this helps...
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#15 WLJOHNSON

 
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Posted 22 January 2005 - 07:25 PM

Hi again,

Mel, you asked what I eat for breakfast? I eat everything from baked chicken to chili burgers wrapped in lettuce, and sometimes I have a complete Mexican meal, or soy ice cream, or baked potatoes, or yams, or steak, fish, or turkey, or egg yolks with sausage, whatever sounds good. Because Diabetes runs in my family, I stick diligently to The Carbohydrate Addict's Diet, eating low carb meats & vegetables, along with salad, 23 hours a day. One hour each day I eat whatever I want, within the limits of my food intolerances (no grains, milk, dairy, casein, whey, egg whites, or yeast).

I like to go get take-out at several restaurants I trust, and I keep some of these in my refrigerator or freezer. At restaurants I can usually count on: corn tamales, corn tortillas, refried beans, rice, chicken tacos, hamburgers minus the bun, chicken or turkey breasts, salmon & other fishes, steaks, prime rib, salad, etc.

I often take foods with me when I'm out and about. Do I get embarrassed? Not anymore! I went through so many asthma attacks while out in public that I now take care of myself. Taking control of my diet is well worth the effort--I just put 2 cans of tuna fish in the trunk of my car this afternoon, and I usually carry a few cans of the Diet Rite, Diet Pepsi and Diet Coke sodas I drink with me too. (Did you know that Squirt contains modified food starch? I learned that some sodas are not safe, the hard way.) Welda
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