Looking For Support

[KLTerry]

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.

[cdford]

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.

[Guest PastorDave]

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? )

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.

[rmmadden]

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

[Guest PastorDave]

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.

[2new2celiacs]

I was diagnosed in Sept. 2004. Since then I have gone through several different phases. Denial, self-pitty and most recently anger . 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

[mela14]

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!

[KLTerry]

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.

[WLJOHNSON]

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

[mela14]

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,

[poodlethree]

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!

[mela14]

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.

[ldteacher]

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

[VegasCeliacBuckeye]

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...

[WLJOHNSON]

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

[mela14]

It sounds like you have your diet worked out. I'm glad that you found something that works for you. I am try so hard to find some balance i mine. It seems that I know what I can or can't eat but something always sneaks in there. I need to be more analytical of food from restaruants and groceries(meat and fish) that I buy from the store. Definately not taking the butcher or fisherman's word from a food store chain that is NOT organic. From now on....I only buy meat and fish from stores like Whole Foods that cater to people like us or those that want to eat healthier with less preservatives and chemicals.

I've been eating very little these past few days because my gut is so raw and I am just not hungry! last night I had a few bites of steak and a baked sweet potatoe. My gut this morning is sitll not right. I'm sure it will all take a while to heal. In the meantime, I am going to baby myself and stick to the few foods that I KNOW won't bother me!

Thanks for your help!

[celiac3270]

KL Terry,

Here are some support groups in Pittsburgh. I found them at the site here, Open Original Shared Link, which provides contact information for support groups in US states. Here's for all of Pennsylvania: Open Original Shared Link

Group: Greater Pittsburgh Celiac Sprue Support Group

City: Pittsburgh

Contacts:

[luvs2eat]

From the day I was diagnosed, I did not let a MORSEL of gluten pass my lips, knowingly. I just switched to "real food," meaning that I ate plain meats, seasoned by me, fresh fruits and veggies, rice and potatoes. I only ate baked goods I made myself. I'd been a label reader for years, so while shopping was time consuming, it wasn't too hard.

All that said... it took an entire year for my system to get back to any semblence of "normal." Luckily, I don't have other food allergies and can have dairy and stuff.

I've been gluten-free for 3 years. Several times in the last year, I've eaten a piece of bread or had a few sips of beer... "to experiment," and have had little or no repercussions. But I think it's because I am SOOOOO completely gluten-free all the time.

I keep thinking that I might be able to "plan" cheats... like eating pizza once a month... and not hurting myself. But so far, it's just dreaming... I've read too much about what gluten does to your intestines.

[ongoingvoni]

Hi, I was just diagnosed yesterday. At least that is when all the test results came back in and I am at a total loss of what to eat. I am also a type 1 diabetic, diagnosed July 12, 1991. so I have to incorperate the two diets. I am on disability and receive only $36 a month in food stamps. Is the gluten free diet very expensive?

I read a deal on webmd about finding the hidden gluten in products. How do I do that? how do I know if the food I am eating is gluten free? Am I limited to fruits and veggies and meats because of my limited resources?

I need help!

voni

[KLTerry]

Hi Voni. Unfortunately, many of the gluten-free foods specifically made to be gluten free are expensive. However, there are mainstream foods out there that are naturally gluten-free. I know I came across a link on one of the boards on this very site that allowed me to print out lots of items at a normal grocery store that I could buy. Hienz ketchup is gluten-free, Dinty Moore Beef Stew is gluten free, Yoplait yogurt is gluten free. I wish I knew where that link was, but I'm new to this as well. If you go to the food section of this board and post a messsage asking for mainstream foods, I know someone could help you. Best of luck to you!

P.S. Is there any way, given your new medical need for gluten-free food that you can get an increase on your food stamps?

[lovegrov]

There are many, many, many "regular" foods that are gluten-free.

richard

[mela14]

Instead of looking for special foods that I can eat.....i just stick to the basics. Meat, fish, veggies, fruit. For desert I have Rice Creams frozen non-dairy desert. It's gluten-free and little bit does the trick for me when I want a sweet treat after dinner. As for something to pick on when everyone else is picking on something I keep Terra Sweet Potatoe chips on hand or Lays Original Potatoe chips. Eveything else ....I stick with the basics and have my three meals.

Good luck!