Not Coping

[LabyrinthRunner13]

I am feeling so, so down right now. Maybe just because its the holidays and they are centered around food here, but, Its just been getting worse and worse.

I was diagnosed with a gluten intolerence about 6 months ago. I had had diarrhea and crazy rashes for 5 years (with a wide variety of interesting diagnoses) so when they said "food intolerance" I quickly got rid of all of it in my diet. Lo and behold, the diarrhea went away, and so did the rashes.

But I keep messing up... I accidently get it, and the rash comes back and the stomach issues start.... I feel like I need to be afraid of food. Maybe I am a little afraid of food. Food used to be one of my favorite things. I watched food network shows, baked all sorts of things, cooked every night. Now, not only am I afraid of food, I'm afraid of my cooking utensils and pots and pans. I don't watch food network anymore because it makes me feel bitter and angry. When I eat, its out of a progresso can labeled "gluten free". I feel like there is nothing worth eating, so I have just kind of stopped.

I am sorry, I know this post is just one big whiny vent, but, I dont really feel like there is anyone else I can get this out too....

[Di2011]

We've all had our fair share of venting on this forum - no need for apology. Sometimes its better to get it out of your system, and on here we understand.

I am still struggling with the food issue. I get pretty sick of my low-processed food diet. But at the same time I am grateful for lots of things too. My GI issues are few and far between, no hayfever this year (in Australia, not even sneezing this year and previously 10 years of debilitating hayfever that I now put down to gluten) and I never had anything very serious or life threatening. So I consider myself lucky.

I too use to bake etc. I have always enjoyed Asian cuisines so luckily there are lots of things naturally gluten free. I couldn't live without butter and meat juices !!!

Nowdays I watch the cooking shows again. I watch them critically, but now in the sense of 'how can I adapt that?' So you might one day watch them and cook yummy things too.

I hope you cheer up but remember it is quite natural for us all to find these holidays hard. I can't imagine Christmas day without prawns (shrimp for US folk) but know it isn't worth the itching. Sad but not worth it..

[rosetapper23]

You know....we've all had the occasional pity party, so don't feel embarrassed for feeling down--especially at this time of year. My colleagues have been bringing in Xmas cookies every day, and I hate listening to everyone say how yummy they taste. However, I'll be making my own gluten-free Xmas cookies on Sunday, and I know they'll be as good as--if not better--than the cookies I missed at work.

Why are you afraid to cook or bake? Either clean your pots, pans, and utensils really well...or buy a few new ones. I cook a lot more now that I eat gluten free, though I rarely bake. It's not that I don't like to bake...it's that I've lost my taste for baked goods. You're only six months into this diet, and I can attest to how bitter I felt for nearly two years. However, after that time, I began to miss gluten less and less. By the way, if you get rashes when you eat gluten, you most probably have full-blown celiac, not just an intolerance. If what you have is Dermatitis Herpetiformis, only people with celiac get it. I know the rash is awful and may be contributing to your fear of food, but, really, if you can cook/bake your own foods, you shouldn't be afraid.

Have you tried eating some of the more tasty gluten-free foods? Have you tried Against the Grain Gourmet baguettes? I slice the baguettes open, smear butter and fresh-cut garlic on them, and put them under the boiler. OMG! It's just like the sourdough garlic bread I used to eat! I can say the same thing for Against the Grain Gourmet pizza crusts--wonderful pizzas!! Also, any recipe can be changed to gluten free with some easy substitutions. Food is comforting...and I hope you find some foods that comfort you as you progress through your journey to good health. Eventually, the little slip-ups won't result in a rash, and you'll feel a lot better.

Please cheer up--find a Xmas cookie recipe that you used to love and make the necessary substitutions to make it gluten free. Believe me...you'll feel better. Take care!

[CreativeKat]

Holidays can be hard and I don't think you should ever feel sorry for venting, if not here, then where? At least here we can all sympathize and relate

I felt like I should reply to your post because my gluten free diet made me love food again...

Before I was diagnosed, I cried myself to sleep wondering how people had the energy to play sports, or even go for a run..all I ever did was sleep and all I ever was was depressed...food was just a means to keep my body going...

After my diagnosis, I freaked. "What the hell am I going to eat?!" especially the going out places with friends (I was newly 18 when I was diagnosed so I'm sure you could see the teenage stress with hot dates and eating out haha ) But then I got into the food network and cooking and OMG my eyes were open! All you need to do is replace some ingredients with gluten free ones and you can make anything you see on tv! Since then I've become more accustom to cooking for myself and I've made everything from my own bread and even as far as pizza and chinese food! Either way, I would try not to get too disheartened though there is something to be said about someone developing a gluten free cooking channel!

[AVR1962]

The holidays are hard enough and then you throw fod intolerances on top of it, I sure know what you mean! The Thanksgiving was my first holiday since being gluten-free and everything I wanted was full of stuff I could not eat, it was depressing. I drug my feet and drug my feet on making plans. Don't feel bad for venting your fustrations, it is frustratying and the only people who truly understand are the ones going thru this.

Like you, I had the hardest time not getting glutened and even the tiniest crumb had me dizzy every single day for 9 months. I had to go real strict with my diet and it finally went away but the geneal population cannot even begin to imagine what we go thru on a daily basis.

There are days I would really like to trade places with someone else and be able to eat whatever but that's not going to happen so we have to do what is best for us regardless.

Hang in there, it's worth it. I hope you get to feeling better soon!

[Di2011]

surely there is enough for a gluten free cooking channel!!

I wonder what you Americans need to do to make it happen?? Come on - make it happen!!!

[captaincrab55]

surely there is enough for a gluten free cooking channel!!

I wonder what you Americans need to do to make it happen?? Come on - make it happen!!!

diandlian, What Language did you want that show broadcast in ??? We Americans live in North, Central and South America....

[Takala]

It's okay, you can vent here, because it is a steep learning curve. I've been having a non gluten type reaction to something, which is really, really annoying because it has to be coming from something in my gluten free repertoire, and I've been doing this for almost 9 years, not 6 months. And it's something(s) here at home because I've eaten out several times at venues w/ a gluten free menu and had no reaction !!!! d*****t.

Eat as simply as possible, and out of whole foods as much as possible. Watch out for supplements and medicines, too. You may want to trial avoiding soy and things that are possibly cross contaminated with it, and gluten-free oats, as well. Keep a food diary and write down everything that is going into your mouth. If you are using hand lotion, and you're a rash type person, you may want to switch to a gluten free one (coconut oil works, as does almond oil.)

Shared household ? You have to get sort of possessive about "your stuff." And mark it all with a sharpie pen.

Don't be afraid of your cooking utensils, just start replacing them with new ones if you don't feel comfortable with them- if they are teflon, for example.

[dws]

I am feeling so, so down right now. Maybe just because its the holidays and they are centered around food here, but, Its just been getting worse and worse.

I was diagnosed with a gluten intolerence about 6 months ago. I had had diarrhea and crazy rashes for 5 years (with a wide variety of interesting diagnoses) so when they said "food intolerance" I quickly got rid of all of it in my diet. Lo and behold, the diarrhea went away, and so did the rashes.

But I keep messing up... I accidently get it, and the rash comes back and the stomach issues start.... I feel like I need to be afraid of food. Maybe I am a little afraid of food. Food used to be one of my favorite things. I watched food network shows, baked all sorts of things, cooked every night. Now, not only am I afraid of food, I'm afraid of my cooking utensils and pots and pans. I don't watch food network anymore because it makes me feel bitter and angry. When I eat, its out of a progresso can labeled "gluten free". I feel like there is nothing worth eating, so I have just kind of stopped.

I am sorry, I know this post is just one big whiny vent, but, I dont really feel like there is anyone else I can get this out too....

Right now you are frustrated and a little discouraged, but don't give up. Have faith in your ability to adapt. When I look back, I can remember several times when I felt the same way, but I always eventually adapted because I kept trying, though not always with the most positive attitude (we are human after all). I think it helps to realize that you are different than most people and your diet will reflect that. It's easy to fall into the trap of trying to recreate gluteny foods and comparing it to how things like bread used to taste to you. I have had to abandon even most processed gluten free foods due to an increased sensitivity to lower levels of gluten from cross-contamination in manufacturing. Now, I get a kick out of watching something like "Under the Sun" with Nathan Leroy on the Veria channel. He often goes to third world countries and checks out thier naturally organic and often gluten free cooking. I just recently made my own fufu- plantains,cassava sometimes mixed with potato or taro root. Just boiled them and mashed them all together. Didn't pound the mixture with a stick like they do in Africa, but it turned out pretty good. If you watch any of the videos on utube about making fufu, you wonder how these women have any fingers left. This is the food staple in many African cultures instead of bread. It can be fun to venture off the beaten path to find variety for your diet. It's ok to feel sorry for yourself for just a little while, but quite honestly, if you are going to beat this thing you have to grab it by the horns and fight it. Don't waste too much time feeling sorry for yourself because that can be toxic to your ability to cope with this. I know I spent too much time feeling that way-time I won't get back.

[notme]

creative kat! LOLOL your avatar is awesome

i go back to the food journal when something is zapping me and i can't figure it out.

i am so bored with my food lately and i don't even feel like making cookies. doc says my vitamin d is low so now on 50000 iu once a week. i hope it works because i am dragging along and i am bummed out....

[Di2011]

diandlian, What Language did you want that show broadcast in ??? We Americans live in North, Central and South America....

In Australia "American" is understood to be citizens of the USA. I guess it is yet another one of the nuances of "Australian English". If we talk about Central/South American then we use the full term. I hope I didn't offend or anything.

Wouldn't it be great if everyone had gluten-free shows in their respective language and all their favourite -thats not a spelling mistake here in Oz - cuisines!! Making me hungry just thinking about it.

[red island]

Sometimes a big whiny vent is exactly whats called for - I usually start with a glass of wine and then let all the negative feelings ooze on out.

I just found out that after 3 months of gluten free living, my endoscope findings showed major damage so obviously I have had to buckle down even more, I havent been depressed til now but seeing all that hard work that just wasn't enough was tough. So I am heading back to the dietician, replacing even more of my kitchen stuff and cutting out even more foods.

I know I'll get it right eventually even though my first attempts at gluten free cooking havent exactly turned out well (I'm thinking the rock hard mac and cheese). But despite my failings, I do see improvement and thats what counts isn't it. I just went one whole week without any neuro signs and I got to the gym 3 times which is such a big accomplishment.

So hang in there and give yourself permission to whine and kick things and generally act like a five year old if thats what you need to do once in a while!

[LabyrinthRunner13]

First of all, I can't even tell you how much it helps to hear "I know, I have been there exactly". I don't have anyone in my life with anything that's even similar, so, I am so glad I found this forum! I have also been learning loads from the posts here... My doctor wasn't exactly a font of information, she just told me to read up on it... Also, she had me try the gluten free diet after an allergy test and based off of my symptoms, and once I did, and they all went away, THEN she told me I would have to start eating gluten again so that they could run more tests? Does that sound right? I was like, "No...wont that make me sick again? I dont think so..."

Anyway, I just wanted to say thanks. The fact that nobody said "Quit your b%$@#ing" was really great. And somehow, today, I feel better. Thank you for all the helpful suggestions and encouragement, and whoever reccomended the wine, I totally took your advice. ;-). I look forward to learning alot from you guys!

[sa1937]

First of all, I can't even tell you how much it helps to hear "I know, I have been there exactly". I don't have anyone in my life with anything that's even similar, so, I am so glad I found this forum! I have also been learning loads from the posts here... My doctor wasn't exactly a font of information, she just told me to read up on it... Also, she had me try the gluten free diet after an allergy test and based off of my symptoms, and once I did, and they all went away, THEN she told me I would have to start eating gluten again so that they could run more tests? Does that sound right? I was like, "No...wont that make me sick again? I dont think so..."

Anyway, I just wanted to say thanks. The fact that nobody said "Quit your b%$@#ing" was really great. And somehow, today, I feel better. Thank you for all the helpful suggestions and encouragement, and whoever reccomended the wine, I totally took your advice. ;-). I look forward to learning alot from you guys!

I don't think many of us get a lot of helpful information from our doctors. The most valuable help I've gotten is right here on the forum. And yeah, wine is gluten-free! So all is not lost.

Welcome to the forum...just keep reading and asking those questions you may have.

[Kimbalou]

I know how you feel. As far as the Progresso soup goes, I was so EXCITED to see them labeled Gluten Free on clam chowder!! Progresso actually has a lot of gluten-free soups and I didn't realize that, maybe they are new?? I love their soup. I like soup and I don't always want to cook, so I ate the clam chowder just now! Today I made "Chocolate Snowflakes" so easy! Got the recipe from "Gluten free girl and the chef" online.

2 1/2 c chocolate rice puff cereal (I used cocoa pebbles, they are gluten-free)

1 c sliced almonds

22 oz white chocolate chips

6 candy canes...crushed (I used peppermint sprinkles)

Stir together cereal, almonds and candy canes

Melt chocolate chips and stir into mixture

Spoon into tablespoon sizes onto cookie sheet and refrigerate for 30 min.

Makes 40!! They are good, and no baking needed!

You will find many easy things to make.

As far as bread goes, I use "Food for Life" bread. It's the best I've had.

Or I use corn tortillas, they're really cheap. You will be ok! Just try to find recipes or think about the things you CAN eat!

[red island]

I'm 3 months into the diet and I have only just got up the energy to get back into the baking and cooking - I lived on microwave potatoes, meat and frozen veggies, and just making sure I ate healthy was exhausting for a long time. Now that I am feeling better the endless replacing of perfectly good kitchen utensils is what gets me down, I still find things that need to be switched out and I kinda resent the money I am still spending to make my kitchen safe. But in hind sight, I was looking at selling my house in the country because I was too tired all the time to do the yardwork and look after my animals and I was contemplating leaving my job (which I love) because I was so overwhelmed by everything. So I guess that switching out a few utensils is a small price to pay for getting to keep the life I have (but I am always going to miss my old toaster, it was awesome!)

[IrishHeart]

I feel like I need to be afraid of food. Maybe I am a little afraid of food. Food used to be one of my favorite things.

Now, not only am I afraid of food, I'm afraid of my cooking utensils and pots and pans. I don't watch food network anymore because it makes me feel bitter and angry. When I eat, its out of a progresso can labeled "gluten free". I feel like there is nothing worth eating, so I have just kind of stopped.

Hon, there is no need for be afraid of food (or your cooking utensils and pots and pans.)

Are your pots and pans porous? No, of course not--so no worries.

If they have scratched surfaces, then, yes, replace them. If you can't afford to replace them all at once, do one a month.

If you have a wooden cutting board, wooden utensils or a plastic colander, those should be replaced.

Toaster should be replaced.

Otherwise, do not fear cookware!!

As for food, what's to be afraid of? Fruits, vegetables, meats, dairy...these foods are naturally gluten free.

There's plenty to eat. Honest! You cannot stop eating--that is unhealthy.

Here is a suggested menu I made up for my family when they said the same thing---what can I eat if I go gluten free? I hope it gives you some ideas so you can stop feeling food -deprived and fearful.

Breakfasts:

Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon

Add: rice milk, almond milk or coconut milk and add berries or sliced banana.

CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill )

Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's or homemade)

Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family)

Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten)

gluten-free packaged pancake/waffle mixes (Pamela's brand is good)

Van's frozen waffles.

FRUITS and VEGGIES—eat plenty of these.

Snack ideas that are safe and handy

Cozy Shack Rice Pudding cups (in the dairy section)

All natural applesauce cups

gluten-free cookies or muffins (Bake them or buy them.)

Pamela's Baking Mix is versatile and good for cookies, baked goods.

Bagel with cream cheese and jam . Udi's are pretty good (frozen section)

Pamela's makes a very good brownie mix too!

Chobani Yogurt

Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter smeared on

Glutino crackers with cheese or peanut butter

BOAR's Head brand pepperoni, salami, all their cold cuts and cheeses

Planter's peanuts, almonds, cashews.

SUNMAID raisins, prunes. Craisins by Ocean Spray. (some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)

smoothies- made with coconut milk, fruit, yogurt, etc

Potato chips----like Cape Cod or Kettle Brand or Utz

Indiana Popcorn--comes in all flavors--the kettle corn is delicious

Glutino brand pretzels—they come in all flavors even chocolate -coated

Coconut milk ice cream (Turtle Mountain So Decadent brand is very good)

Ice Cream, if dairy is not a problem for you.

Organic Corn chips w/salsa, hummus, or Wholly Guacamole

Sunflower , pumpkin or flaxseeds

Candy—Hershey's kisses or bars, regular size Reese's cups, Snickers, York peppermint patty, Butterfinger and M &Ms plain and peanut. Ghirardelli squares.

Make some Chex mix with gluten-free chex cereals

gluten-free Rice Krispies treats (recipes are online)

Check the labels of all packaged products-- if they were made with wheat or malt gluten, they will state so on the package.

LUNCH and DINNER:

Leftovers from last night's dinner make an easy lunch

Some Progresso soups are gluten-free. Check the label!

A sandwich with gluten free bread—UDIs and Canyon Bakehouse are decent packaged breads, rolls and bagels, but homemade is the way to go.

I have a simple recipe for white sandwich bread that is delicious if you want it. Just PM me.

A big salad with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay.

Homemade vegetable minestrone ,chicken soup, stews, black bean or white bean chili (gluten-free stock)

chicken or bean nachos (can use corn tortillas)

red beans and rice

almost all mexican food is safe (just no flour tortillas!)

pasta and sauce w/meatballs (brown rice or corn pasta TINKYADA BRAND rice pasta is delicious! Cook 13 minutes exactly) and use gluten-free breadcrumbs (just crumble some gluten-free bread and season)

meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind

Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)

Vegetarian chili--homemade.

I eat a variety of veggies..whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.

Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy

Potatoes—roasted, grilled, whipped with milk

Fritattas with veggies and salad

Stuffed peppers—with ground turkey, beef or lamb and rice

ANY recipe can be altered--just use gluten-free breadcrumbs, or rice pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Quaker oats are Cced!!. Bob's Red Mill are not.

Cross-contamination is the bane of our existence. A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. You want the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big gluten-free in a circle.

Some DEDICATED gluten-free facilities are:

Bob's Red Mill

1-2-3 Meredith's Marvelous

Authentic Foods

Pamela's

Cause You're Special

Udi's

The Cravings Place

Andean Dream

Kinnikinnick

Organic Nectars

Orgran

Foods by George

gluten-free FULL FLAVOR Gravy

Prana Bar

Enjoy Life

EnergG

Gillian's

They make all kinds of ready made mixes and flours to make it easy to start baking.

That should get you started. and be sure to check under the recipes and cooking sections here on the forum--tons of good ideas!

Best wishes,

IH

[catlover0329]

I felt like you did when I first learned I am gluten intolerant and it sucked. However, I have learned there are tons of gluten free food products (breads, noodles, crackers, cookies, pancake mixes, etc.) available at both regular and boutique grocery stores that allow me to cook as much as I did before my diagnosis. My entire family is now gluten free since it's too hard to do it half way. If there isn't a store near you that sells gluten free products, you can try buying what you need at glutenfreemall.com. It's an awesome site. Just don't beat yourself up and remember this is a lifelong process that we're all learning as we go. It will get better! Hang in there.