I Am Feeling Frustrated

[proud-armywife]

First, I have been diagnosed through biopsy and bloodwork.Second, I have the malnutrition affects of having this disease. It has affected me much like it anorexia effects someone. It is somewhat of a joke around friends-I have four kids and they all say-so what do you do throwup in the toilet? And they gesture to their mouth with there finger. It is hurtful.

To say that I am terrified of being fat is an understatment in truth. I have been very disciplined when it comes to how much food I eat. And frankly my husband eats horribly and over the 12 years we have been together- and having kids and a budget -I caved. Although I eat junk- I am very careful on how much I consume. I place a good handful on the counter and work on it for awhile. I never eat out of the bag, I would eat the whole thing! Where am I going with this?...I'm asking myself to be honest.

What determines how diligent you have to be? I saw a nutritionist and she addressed my anemia-telling me to eat things like raisin bran and grapenuts. I reminded her about the celiac and asked if those were ok for me to eat and of course, I already knew she said no. She never told me about labels and cross contamination. I asked her do I need to worry about cross contamination? She said like what? Like the toaster-yes she says. If not for this forum I would not know anything about this. She says to me-you don't have diarrhea so you must not have it that bad. I felt myself shutter after those words..... I felt like my heart trouble, my inability to move, dizziness, ringing in ears, lethargy,burning limbs, restless leg, headaches, brain fog, forgetfulness, low white blood cell count, being sick all the time, nausea, hair falling out, and depression, meant nothing. I have spent 12 years telling people that I feel like an old person. I have been known to say, I am young -there has got to be something wrong with me.

WHY is there no information given to patients? Why are we not treated like something is really wrong? Why am I sitting here feeling so alone, I don't even want to talk to my friends because right now I am so annoyed with myself, I don't want to annoy them-I feel so frustrated. Where do I begin, I cleaned out a cabinet I have a shelf in the fridge... I live off of yogurt and naked drinks- I'm sick of yogurt and naked drinks!( I tried nu thins-I hate them) Why are things made with Gluten ingredients but are also made in a facility that has wheat and other things.Why would you even consider marking them gluten free with a small allergy tag in the back- Can I eat this? There is no doctor out there that has told me what I should be doing! All they say is no gluten barley or oats-THANKS! WHAT DO I DO! How anal do I need to be- And to be perfectly Honest Right now I FEEL like I REALLY DON"T CARE ANYMORE!!! I truly just feel like I could give a you know what. I DON'T GET IT.I need someone to sit me down and say-this is what needs to happen, so I can have a goal to work towards- a clear definition of what I have. I have no diarrhea but honestly sometimes I wish I did so that I could associate the food with pain. I can't tell if I'm eating it. I love food-my dad is a chef my mom cooks too-it is my passion. People come over I cook a ton of stuff it makes me happy. I need help, and the military doctors I have seen- treat me like a number, not a person. Please help me. Where do I start.....What do you like to eat, what do you regularly buy? What do I do? AM I crazy?

[Wolicki]

OK, first thing is stop and take a deep breath. It's going to be ok. Just take one day at a time.

First rule- don't expect a doctor or nutritionist to help you figure out this life, otherwise you're gonna give yourself an ulcer. They just don't know. It is too complicated, and the only "experts" are those who deal with it daily. That's us! So the good news is you are here and we want to help.

I've been in your shoes. When I was finally diagnosed, I was 97 pounds. I am 6 ft tall. I literally looked like a concentration camp survivor, and people would stop me on the street and tell me that I needed help. I wanted to punch them all.

The good news is you will get better following the diet. Unfortunately, I've gained a lot of weight due to some metabolic issues from malnutrtition, but I think we're getting it under control.

AS far as what to eat: look at the safe and unsafe foods list on the front page. The best way to eat is naturally gluten free: lean proteins, fruits and veg. The replacement products can be very hard to digest when you're healing.

Get a good probiotic and a good multivitamin. Check your scrips and otc meds. And your shmampoo, hand lotion, moisturizer, toothpaste, etc. If your husband is a gluten eater, make him brush and mouthwash before kissing you. Try to make your householf gluten free if you can. It's safer for you. Treat it like a life threatening nut allergy.

List your previous favorites, and I am sure that the more experienced people here can help you find replacements, once you've had a chance to heal.

It's going to be ok. When you get overwelmed, try to just stop and breathe and thank God for your blessings. You'll get through it.

Janie

[glutenfreeinminnesota]

I was diagnosed back in Nov 09 through biopsy. They said "see a nutritionist" and sent me on my way. I know how that can feel...and I really didn't feel like I had the time..or money to go have someone tell me what I can't eat anymore. I was so angry that this was what I had, I used to eat anything and everything. I loved food. Always maintained my weight, so I never cared about what I ate! Well...seeing how much better I feel now compared to the previous 5-10 years...now I am mad that it took so long to figure out what was really wrong. Anyways...enough of that, the first thing I did was google search the crap out of gluten free, "gluten free foods", "gluten free recipes"...etc. ( always brought me right to this site ). Then, I started to crave those gluten-filled foods, so I got on here again and typed "gluten free mac n cheese", "gluten free pizza" or whatever it was I was craving. There is a TON of other options, Betty Crocker even has some good gluten free cake and cookies. I am not picky though, and I have actually forgotten what "real" food tastes like. I am used to the different tastes and textures....just give it time. Things just get easier as time goes on! And there's more and more gluten free options I find almost every day. Hang in there! I always felt like something was wrong with me, and just NEVER felt good, never went out and did things because of it. Now I go out with friends, I am happier and I feel GREAT!

[mommida]

Hello,

Still one of my favorite cookbooks is by Roben Ryberg, The Gluten Free Kitchen. (Keep your old cookbooks and you will learn how to adapt the recipes!)

Pamela's pancake/baking mix is my favorite baking flour following the recipes on the bag.

Once I have found gluten free products I like and use often, I order in bulk on-line. (amazon)

Keep a food journal. It will help track possible hidden gluten or oother food intolerances. You might be intolerant to some of gluten free replacement items. i.e. sorghum, quinoa, pea protein, and other things you may not have consumed in the past.

[bigbird16]

First, hugs--you're not alone in this.

Doctors' treatment of me ranged from dismissive to she's a nutcase. The only one who took my issues seriously was a nutritionist who herself has celiac, but all she wanted to talk about was "mindful eating," not what or how much I should be eating to be properly nourished.

When I have a craving for something from that previous life, I get creative. I challenge the thoughts of missing that food and channel the emotion into making something even tastier. If I want coconut shrimp and onion rings, by gum I'll have them, and they'll be better than anyone else's. I try not to obssess anymore about what I eat; and I think I have a better relationship with food. I'm still about 20 lbs overweight, but I've lost 15 in the last three months. If cooking makes you happy, cook! Bake a batch of gluten-free cookies or muffins and take them to work and share. (Half the time no one knows the difference.) Experiment. Laugh at the goofs, like doorstop bread. Share the successes. Don't be afraid to indulge in whatever recipe you desire, whether that's a gluten-free chocolate raspberry cake or a rosemary chicken breast with a caesar salad. Enjoy the cooking. Make the finished product beautiful. Play with your food.

Surround yourself with people who will share your joy. If there are toxic people, limit your contact with them. I have one friend who's like a sister. She thinks all of this is crazytalk. So we keep food out of our conversations. Other friends get soooo excited when I bring them goodies or have them over to eat or tell them about a new recipe. People who dismiss your pain aren't worth your frustration or tears. Yes, their comments hurt like hell sometimes, but you know the truth of your situation and are doing the best you can to make yourself well and healthy.

You are responsible for educating yourself; the health professionals may not be a whole lot of help. But you do have this group to support you. The folks here are full of wonderful ideas.

In practical matters, I won't even let people bring gluteny leftovers into my home. (Single and do what I please.) I replaced all cutting boards, toaster, wooden utensils, colanders, silicon bakeware, scratched teflon pans, rolling pins, plastic food storage containers, and suspiscious bakeware. Unless I have intimate knowledge of a friend's kitchen and her cooking habits, I won't eat what they cook. No offense meant, but I have to look out for my health (as I sip my Bard's Tale beer). For going out to eat, get some of the Triumph dining cards or make your own to help explain things to the chefs. Always ask about ingredients. Sometimes you end up with a meal that's even prettier than everyone else's. For grocery shopping, I tend to stick to staples--fresh meat, fresh or frozen veggies and fruits, potatoes, rice. The fewer ingredients on the list, the more appealing it is, especially if I can pronounce them. For baking, I go by recommendations of good brands and experimentation. (The latter has gotten me in trouble a few times, like having an anaphylactic reaction to millet, but has been very useful.) The pets are on gluten-free diets, too, so that I don't have to worry about gluteny slobber from the dog or wheaty bits floating in the air and landing in my food from the bird. Magazines such as Delight and Living Without are good inspirations.

As others have said, it does get easier. You will feel better, and soon it will all be second nature to you.

Cheers,

K

[ciavyn]

I will just second everything they said on here. It does get easier. I'm self-diagnosed via diet, and I will tell you, my husband no longer questions me. I have serious GI issues when I eat gluten, and now that he's seen the difference (I got glutened a few months back), he's seen (and smelled! ) the light!

As for sensitivity, cross-contamination, and how careful you have to be...that is individual. Over time, you'll recognize your symptoms faster (You seem to know what they are -- not it's just about getting healthier so you know what feeling GOOD feels like -- then you'll be able to tell the difference), and you'll know how picky you need to be. I'm not overly sensitive. I can eat out, and as long as I'm careful, I don't seem to have many issues. However, give me ONE nacho Dorito, and it's three weeks of absolute, GI hell. Ugh.

You have a great place to come for research, venting, and understanding. You don't need to be an expert or go to see one. Use your doctors as you can, but also use the internet and especially this site to answer your questions. This is such a weird condition.

The good news: this is treatable. I was talking with a friend who nearly died twice from complications of undiagnosed celiacs. As he pointed out (especially when I got whiny) this isn't cancer or some awful, untreatable disease. This can be fixed via diet, and soon you will feel so much better. Just give yourself time to grieve, be frustrated, and most of all, heal. ((hugs))

[mbrookes]

I was in the hospital when I was diagnosed. They sent the hospital diatician up to see me. She gave me a booklet and said "I don't know much about this. Look at the internet"

Not to repeat, but it does get better. Once you have had time to heal, you won't believe the difference in your mental outlook. I'm a much better cook than I used to be because now I pay attention and try to match flavors and textures to make up for what I can't have.

This site has been a boon for me. Let us help you. That is how we thank each other... we help someone else. Ask all the questions you want to. No one here will make fun of you or put you down.

[Welda Johnson]

I feel your pain! At age 65 Ive been on a diet of meat, fruits & vegetables, or just fruits & vegetables for about 8 years, but have had Celiac symptoms since age 8. Sticking to this diet WILL get easier, and your likes & dislikes in food may change drastically, as you begin to feel better. Checking ingredients on labels, and becoming aware that you might be intolerant of other foods, such as milk & dairy, egg whites, yeast, casein/whey, msg, etc. will be beneficial. Here are the foods I eat regularly:

Breakfast until 11:00: pineapple, papaya, strawberries, oranges, etc. Fruit only.

Lunch: green salad with tomatoes, green onions, cilantro, etc. Walden Farms no calories, no carbs, no protein Salad Dressing from Henry's Markets; cauliflower, broccoli, asparagus, refried beans, rice.

Or

Green salad as above or low-carb green vegetables, and protein (tuna, chicken, fish, etc.). I never mix high-carb foods with proteins.

Dinner: Same as lunches = no mixing of high carb foods & proteins.

From your comments, I take it that your food stays with you awhile. The strategy of eating high-enzyme fruits all morning (one variety at a time, as much as you want, waiting 2 hours to start a new fruit) really changes your body's ability to use the nutrients and get rid of the non-essential parts of the food. It is amazing how such small changes make such large differences. Likewise, never mixing high-carb foods with proteins helps the food to move through your system so much more quickly.

Best wishes for success as you begin your new, healthier way of life. Welda

[proud-armywife]

Thank you so much for all of your encouragement, it actually felt so good to just say what I was feeling inside, I try not to burden my family. I am grateful to you all and appreciate you sharing your experiences

[Wolicki]

Anytime! That's why we are here

[Wapondi]

I feel your pain. I was diagnosed about 6 weeks ago and after endless expensive tests, my doctor sent me off to a nutritionist who gave me a handout called "50 Things You Can Eat." On that list - Velveeta, Fritos, Snickers. ICK. So not helpful. When I emailed my doctor's PA to tell her that the visit to the nutritionist hadn't been helpful she told me to educate myself. So frustrating!!! I am really overwhelmed.

So I guess our experiences aren't that unusual, which is comforting in a way, but also frustrating that we all have to go through this.

Anyway, good luck!

[tictax707]

ProudArmyWife,

I am glad this place can help you. I hope the posts have given you some things you can work with to get you on the road to health and icnreased knowledge, and consequently power over the disease. When I was first diagnosed I felt like I was running around in circles because my doctor said to see a nutritionist but the ones I talked to didn't really know celiac disease very well. Neither did the dietitians. They said check with your doctor. And all this while you are totally overwhelmed and feel like crap... But previous posters are right - keep it basic for a while. I am not sure what the rest of your family is like, but it might be worth it to see if they could get on the gluten free boat with you for a little while (as long as they are in the house). Then when you get a better handle on it all, then you can work on assigning gluten & gluten free areas & tools in the kitchen. Just an idea... that may not be too easy in reality. But the bottom line is still that you need to give yourself the time to really get the hang of your diet and your symptoms. I wish you the best!!!

[Nor-TX]

I spend alot of time trying to figure out what to eat. I cannot eat fresh vegetables or fruits. My cravings run towards salad (especially from Olive Garden), grapes, cold oranges, watermelon, kiwi, blackberries... I cannot eat tomato products. I crave spaghetti sauce..

Those of you who can eat fruits and salads... I envy you.

I am limited because of the colitis, IBS, and GERD.

I am sticking to shrimp, grilled chicken, salmon, rice, rice noodles, glutino pretzels...

[tictax707]

Hey Nor_TX,

First of all, I am very sorry for the frustrations you must feel with the fresh fruits and veggies out of the question. I was wondering how long you have known about the colitis for? Is it "general" colitis or is it microscopic or lymphocytic by any chance...? I am just wondering because I too have colitis, but it's the lymphocytic kind, and I take meds to help keep it from flaring up. Without it, I can't handle fresh fruits or veggies either... You might have already been down this road for years on end, but I thought I would ask...

[Nor-TX]

I don't know what kind other than the GI calls it severe colitis. I have colonoscopies 2 times a year.. lots of polyps. I take Remicade every 5 weeks and on 12 Asacol a day.

I live with pain contantly. It is so hard for me to know at any specific time whether I am sick because of the gluten, the colitis, the GERD or the IBS... Pain and discomfort are constant.. just in varying degrees.

For lunch today I had a gluten free Thai Kitchen Mushroom Rice Noodle bowl with some extra sauteed mushrooms and 1/2 a coconut milk yogurt. My co-worker picked up a hamburger and fries at Sonic. *sigh* Need I say more?

[proud-armywife]

I am sorry about your other issues, I too have gerd due to a hiatal hernia-how could I also not know about this!! LOL It seems one more thing right now is too much! I admire your strength! And I hope one day I will be able to give the advice out. I made a decision yesterday. Not knowing how high my blood tests were, they are still at the hemotologists office. I am going to eat food marked Gluten free. Stay away from things I know are glutenous. But the cross contamination, I won't use the toaster or the same spreads, but I intend on eating foods that have no gluten ingredients. I have an appointment in 3 months. And when they draw blood, I will know if I need to pull back. The hemotologist said the test was "blaringly positive" but I don't know what that means. One step at a time so NO GLUTEN INGREDIENTS!! I just have to get through that for now.Thank you again I hope I can return the favor of reassuring words soon.

[tictax707]

oh darn... I do Asacol too, and 12 a day when things get out of hand. I'm so sorry I couldn't be more help. The hamburger and fries sounds a bit nauseating, but the freedom to eat whatever, whenever, is not...

[MartialArtist]

I get the frustration -- I'm all about that right now (new to this too).

I found a book online (and ordered it) called Gluten Free Grocery Shopping Guide. Go here Open Original Shared Link It'll help with the when-in-doubt items and it's a small enough book that you can just leave it in your car and have it even when you just stop by the store spontaneously. It's pretty comprehensive (though not exhaustive) and they print a new version each year to deal with changes in product ingredients. (You still have to read the labels for the obvious things, in case of a mid-year ingredient change, but it puts me at ease just knowing I can have some level of confidence about this stuff going in.)

If you're like me and just can't imagine avoiding all the carb things (though that does sound like good advice...), here's some info I've learned in my whopping 8 days of doing this:

Tinkyada brown rice lasagna noodles substituted perfectly into my lasagna recipe.

Bionaturae elbow macaroni tasted completely normal in another pasta dish.

Udi's bread (I chose the whole grain flavor instead of white), bagels, and pizza crust have been great (I got a tip to let prepared pizza sauce soak in a coffee filter for a couple of hours before using on gluten-free crust to remove some of the liquid and prevent soggy crust, which worked).

Pamela's brownie mix was quite good, though very rich and slightly more cake-like than regular box mix (will try the "fudgiest" recipe version printed on the box next time).

Glutino pretzels are very similar to Snyder regular pretzels in taste and texture (thick like that), so if you like that style, you're in luck!

Cinnamon Chex cereal is delicious!!!

Hope those detailed ideas/product reviews help a bit. Hang in there. We can go through denial/anger/frustration/acceptance/etc. together.