Brand New Celiac... Confused, Discouraged, Frusterated, And Not Happy

[EMSPrincess]

Hey all... I am very recently diagnosed, and have tried for 2 weeks to be gluten free, however the more I read the harder it seems to get, you have to check EVERYTHING its not just as easy as wheat, barley, and rye. I just can't figure what I can eat, what are good substitutes how I'm going to give up my favorite foods for good, easy restaurant eating, all this stuff, I just can't fathom how to do this. Its only been two weeks and I'm already sick of it. The more I read the worse it gets and the more confused I am as to what I can and can't eat. My dr. tells me one thing, i read another thing, I'm having trouble seeing a dietician... ugh....... I'm just extremely frusterated and sad to be leaving behind so many of my favorite foods. I NEED HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

thanks...

[wolfie]

Hey all... I am very recently diagnosed, and have tried for 2 weeks to be gluten free, however the more I read the harder it seems to get, you have to check EVERYTHING its not just as easy as wheat, barley, and rye. I just can't figure what I can eat, what are good substitutes how I'm going to give up my favorite foods for good, easy restaurant eating, all this stuff, I just can't fathom how to do this. Its only been two weeks and I'm already sick of it. The more I read the worse it gets and the more confused I am as to what I can and can't eat. My dr. tells me one thing, i read another thing, I'm having trouble seeing a dietician... ugh....... I'm just extremely frusterated and sad to be leaving behind so many of my favorite foods. I NEED HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

thanks...

Hang in there....it is a very tough adjustment to make. I have been gluten-free for almost 3 weeks and the first 2 weeks were VERY hard. I finally made some lists of things that I could eat (put them all in a binder that I take shopping with me now) and that has helped greatly. The people on this board are so helpful and if you have any questions, please don't be afraid to ask them. I was able to find some very comprehensive lists of foods that were okay on the Delphi forums....that really has helped me TONS!

Kim

[IronedOut]

This is the link to Celiac on the Delphi Forum. You'll need to register but it's free.

Open Original Shared Link

I was overwhelmed and eating nothing but lettuce after my diagnosis. The lists provide guidance on mainstream brands that have been identified as gluten free, but you will find that reading ingredient lists has become a way of life. Once I read through the product list, I felt a little better about being able to stay within the diet.

It takes time and planning but I've made an event of changing my favorite recipes over to gluten free and keeping all the flavor and texture that made them my favorites to begin with. I also admitted to myself that I could spend extra money in the beginning on the packaged gluten free products until I got a handle on the cooking.

Keep in touch with this forum. Everyone has been there and can help you work your way into the good life.

Julie

[skoki-mom]

Best of luck to you. I had a family member with it before my own Dx, so I was pretty much "up" on what the diet involved, plus I had some time to research things inbetween my + bloodwork and my biopsy. Yes, it is a very hard diet. I don't mean "hard" in terms of willpower. I mean hard in that there is really not a whole lot out there for us. Sure, you can have your meats and veggies/salads, but when you are eating out, you need to ask a million questions about how the food is prepped, marinades, seasonings, etc. I don't eat out much anymore. You do better at higher end places where there is a chef who can actually cook you something that is not on the menu. Because it is more expensive, I just figure it is making up for the fast foods I used to eat and I still get to enjoy a meal out once in a while. Eating at home is not so bad for me, lots of my favourite dinner recipes are naturally gluten-free anyhow, or I just leave out bread crumbs or use gluten-free pasta, stuff like that. It gets easier in that you find the stores that carry what you need, you become familier with "safe" brands (or at least brands that clearly label products), and frankly, I have learned how to just "shut it off" at social outings. I sort of just steer away from the food table and try not to think about it. I tell myself I don't want to eat that unhealthy crap anyhow (ok, I do, but I tell myself that.....).

Hang in there. It is the best thing for your health. When I get down, I just think about how much worse/scarier cancer would be, and that is basically what I'm trying to avoid. Lots of companies have websites now that will list their gluten-free food, I have also had a lot of luck getting e-mail responses from companies if I have questions about certain items.

[Guest cassidy]

It is very hard in the beginning. I think you have to go through a sort of greiving process until you accept things and that takes time. Once I started feeling better it made all the effort of finding safe foods totally worth it. There really is a lot of food that you can eat, but you do have to check every label and make sure it is safe. Good luck and hang in there, you will start to feel better soon!

[Carriefaith]

I know that the diet is hard at first, but it will get easier. I made a thread of recipes that you may find helpful. I've put suggestions for gluten free products in the recipes as well.

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[Guest stef 4 dogs]

It is very hard in the beginning. I think you have to go through a sort of greiving process until you accept things and that takes time. Once I started feeling better it made all the effort of finding safe foods totally worth it. There really is a lot of food that you can eat, but you do have to check every label and make sure it is safe. Good luck and hang in there, you will start to feel better soon!

Hi I'm also new at this! I feel like you. overwhelmed, sad, mad, sick, sick sick! The more I avoid gulten the more I'm aware of it. The more I avoid the worse I feel! Detox sister! Thats what I think were going through! Our bodies are rebelling. Everyone keeps saying hang in there it gets better, I just wonder when thats supposed to be? Just know your in good company. I don't feel like anyone understands how many parts of my body feel like crap! We'll get through this together!

Stef 4 dogs

[Carriefaith]

Hi I'm also new at this! I feel like you. overwhelmed, sad, mad, sick, sick sick! The more I avoid gulten the more I'm aware of it. The more I avoid the worse I feel! Detox sister! Thats what I think were going through! Our bodies are rebelling. Everyone keeps saying hang in there it gets better, I just wonder when thats supposed to be? Just know your in good company. I don't feel like anyone understands how many parts of my body feel like crap! We'll get through this together!

A dairy free and gluten free diet may help relieve some symptoms. Many people with celiac disease are temporarily lactose intolerant until their intestines heal. The enzyme to break down lactose is located in the tips of the villi, so when the villi are damaged, lactose cannot be broken down very well, if at all.

[StrongerToday]

It is very hard in the beginning, I also went Dairy Free - and Dairy is my favorite food group hands down!! It's very challenging at first. You have to read and question ***everything***. Did you know "regular" soy sauce has wheat? Also, wheat was in three different forms in my shampoo, in my hair spray and my foot lotion!!

Read as much as you can from this site and others. Good books are out there too (Wheat Free/Worry Free, Dangerous Grains, cookbooks) check your library too. Ask us any question, none are too personal or gross for us

My advice is to read, visit manufacturer web sites and/or call them, stick to a very simple diet at first and then take on more as you're ready to.

[KJohnson]

I agree wholeheartedly that you have to let yourself go through the grieving process when you start living gluten free. Don't give yourself a time frame of how long it is "appropriate" to grieve, but don't let yourself dwell on what your losing, either, because for everything that you are losing, you are gaining so much more. NOTHING is worth constantly feeling sick, exhausted, and unable to participate in daily/social activities that you enjoy! I was diagnosed last April, and I still have times where I long for the days when eating and going out to socialize wasn't so complicated. But when I have those moments, I always remember how sick and irritable I felt when my lifestyle wasn't so complicated and difficult to decode. Not to mention the toll that it took on my personal relationships!

Anyway, I definately empathize with the confusion and frusteration you are feeling- ESPECIALLY since I am a carb-addicted vegetarian! "WHAT?!?! NO BREAD?!?! NO COOKIES? CRACKERS?!?! NOOOOOO!!!" I went through a period where I tried to eat more meat, but that didn't make my body any happier. Fortunately, we live in a time when gluten-free alternatives are popping up everywhere. I don't know where you live, but if you have a Wild Oats, Whole Foods, or any local health foods store, SHOP THERE! You will find all sorts of gluten-free alternatives to the foods you are having to give up. I've gotten to the point where I am perfectly happy eating mostly fresh foods. Rice and quinoa are the only two grains I touch because I've realized I'm sensitive to corn and amaranth- but you should explore all the gluten-free grains (check out buckwheat too- sounds scary, but it's safe!) salads with garbanzo beans, sweet potatoes, celery and all-natural peanut butter, fruits, etc. But as far as processed foods go, here are some of my favorites:

Mary's Gone Crackers (especially the herb ones!)

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Pamela's Cookies- especially the dark chocoate chunk ones and the lemon shortbread! (Open Original Shared Link)

Bone Suckin' Barbecue Sauce (Open Original Shared Link)

Sweet Thai Chili Sauce- I use this on salads, stir-frys, drink it straight from the bottle (ok, I don't do that, but I might as well! )

(Open Original Shared Link)

DeBoles Rice Pasta (Open Original Shared Link)

Ener-G Tapioca Bread (Open Original Shared Link)

505 Salsas (Open Original Shared Link)

Those are just some of the things that I have found that have become staples of my diet, but you will undoubtedly find other things that you like! As far as eating out, try P.F. Changs and Outback Steakhouse- they both have gluten-free menus! Outback even has some tasty chocolate deserts that are safe for us! I personally don't eat at places that don't have gluten-free menus, because there is a good chance that your food can be contaminated by utensils or surfaces where gluten-containing foods have been! Many people feel comfortable eating out, so it's your call! The only exception I make is sushi, but even then I keep it simple by ordering sashimi, white rice, and edemame. I also bring my own soy sauce, because soy sauce has wheat in it! And I make it very clear that my food must be prepared in an area that has been cleaned and has not contacted any gluten. I've never had a bad experience, and have found that people are very happy to accomodate me! Also, look at going out as an opportunity to socialize in settings that don't revolve around eating! Instead of going out to dinner with your friends, suggest that you go out for a drink (Wine is always safe, as is Refresh tea from Starbucks!), or go to a sporting event, go bowling, take up dancing, etc.

So, to summarize, here are the four main rules I have come to live by:

1) BE PATIENT!! Be patient with yourself when you feel down and understand that it's normal to be frusterated, angry, and feel deprived. Be patient while you are bombarded with new and conflicting information.

2) BE GRATEFUL! You have found out what wrong with you, and that something can be done about it (however inconvienient it can be at times!) Be proud of yourself for making the effort to take care of yourself, because, believe it or not, a lot of people don't take it seriously when they find out they have Celiac Disease! Just try to look at this as an opportunity to try different and exotic foods and to expand your social life beyond just going out to eat!

3) ONLY BUY PROCESSED PRODUCTS THAT HAVE BEEN LABELED AS GLUTEN FREE! Not only is it easier on you, it supports businesses that support our lifestyle!

4) KEEP IT SIMPLE! When you find yourself overwhelmed by ingreedients that sound scary, and you have no clue what is gluten free and what isn't, go back to the basics! You can never go wrong with whole foods that haven't been processed at all- brown rice, white rice, potatoes, plain meats, beans, all-natural peanut butter, fresh fruits, fresh veggies.

I really hope this helps some, sorry it's so long, but you'll find that once you've been in to this for a while, you'll know more about nutrition, food, and human emotions than you probably ever wanted to know!

Good luck!

Karen

Hey all... I am very recently diagnosed, and have tried for 2 weeks to be gluten free, however the more I read the harder it seems to get, you have to check EVERYTHING its not just as easy as wheat, barley, and rye. I just can't figure what I can eat, what are good substitutes how I'm going to give up my favorite foods for good, easy restaurant eating, all this stuff, I just can't fathom how to do this. Its only been two weeks and I'm already sick of it. The more I read the worse it gets and the more confused I am as to what I can and can't eat. My dr. tells me one thing, i read another thing, I'm having trouble seeing a dietician... ugh....... I'm just extremely frusterated and sad to be leaving behind so many of my favorite foods. I NEED HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

thanks...

[tiffjake]

Hey all... I am very recently diagnosed, and have tried for 2 weeks to be gluten free, however the more I read the harder it seems to get, you have to check EVERYTHING its not just as easy as wheat, barley, and rye. I just can't figure what I can eat, what are good substitutes how I'm going to give up my favorite foods for good, easy restaurant eating, all this stuff, I just can't fathom how to do this. Its only been two weeks and I'm already sick of it. The more I read the worse it gets and the more confused I am as to what I can and can't eat. My dr. tells me one thing, i read another thing, I'm having trouble seeing a dietician... ugh....... I'm just extremely frusterated and sad to be leaving behind so many of my favorite foods. I NEED HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

thanks...

I know that it sucks but you can do it. I started by just limiting myself to the foods that I KNEW were gluten-free like fruits and veggies and meats. If I went out to eat, I had a steak and baked potato. I am a little more forward now and I ask to see the ingredients lists for the salad dressings or cheesecake. But in the first few weeks it is all about having control over your food, and the best way to do that is to eat at home and only buy things that you are sure about. I promise that it will get easier!!! And the people on this site are super helpful and giving with their advice!!

[Rusla]

I ask in Safeway to see the ingredients of dressings on their salads. I read every label and I have the greatest little book that the Celiac Association here gave me. I don't leave home without it, I do not fall off the diet ever.

However, I do get glutened by accident from desks etc but now I clean all of them at work. Every time I think I want something I shouldn't have, I remember the pain and the DH and I lose all urge to eat the wrong things. It doesn't take long before you become proficient at reading labels and knowing what you can and can't eat.

[lemonade]

Hi I'm also new at this! I feel like you. overwhelmed, sad, mad, sick, sick sick! The more I avoid gulten the more I'm aware of it. The more I avoid the worse I feel! Detox sister! Thats what I think were going through! Our bodies are rebelling. Everyone keeps saying hang in there it gets better, I just wonder when thats supposed to be? Just know your in good company. I don't feel like anyone understands how many parts of my body feel like crap! We'll get through this together!

Stef 4 dogs

I completely understand what you are saying exactly.....thats what everyone keeps saying "hang in there" well u know what IAM TIRED OF HANGING IN!!!!! i feel sick alllll the time and when is it gonna get better????

iam soooo depressed:(

lemonade

[aikiducky]

Hey lemonade, here's a big (((((((HUG)))))))) for you, we all understand! Unfortunately it will only get better with time. Wish it were otherwise. But just han... ok I won't say it anymore....

Pauliina

[KJohnson]

Hey lemonade, here's a big (((((((HUG)))))))) for you, we all understand! Unfortunately it will only get better with time. Wish it were otherwise. But just han... ok I won't say it anymore....

Pauliina

For what it's worth, we've all said at one time or another that we're tired of hanging in there! I still get that way too! After I was diagnosed, I was immensley relieved to have my symptoms verified by a medical diagnosis because I thought I was going crazy. It was also a triumphant "up yours" to everyone who thought I was making it all up. But after that wore off and the reality of this life-long committment set in, it was overwhelming. And when I didn't start to feel better immediately, I was really really grumpy and didn't see the point in "hanging in there." If I was to feel like poo, I might as well be eating the foods I liked that made me sick, right? Well, I'm telling you, it's worth "hanging in there," even when you are sick of it, because eventually you'll break through that phase of feeling sick all the time and all the inconvieniences will be worth it! In the words of Winston Churchill, "If you are going through hell, keep going!"

Karen

[Timber4est]

No biggie were my first thoughts after being diagnosed. I mean, all you have to cut out are gluten foods (wheat, barley and rye), how tough can that be right? I remember driving home in the car after being diagnosed feeling elated that at last all the strange illnesses and diseases I had at long last had a name to place on their ugly faces.

The honeymoon was over when I arrived home, went to fix the family meal. Pasta was out for sure, but I had thawed Italian Sausage for spaghetti and meatballs that night. Wouldn’t you know it, the sausage had wheat in it, the pasta had wheat in it, even the spaghetti sauce had wheat in it. So I tore apart the pantry, reading every can, every box, every package. To my utter disappointment, when all was said and done, the pantry shelves were empty and I only had a handful of items on my new “Celiac” shelf. Stewed tomatoes, packages of beans, canned fruits and the likes. The pantry was filled when I started; it now looked like a ghost town. Off to the internet and making phone calls to the suppliers of the staples that remained. Discovered that the beans were out as the manufacturer reported “Cross Contamination highly possible”. So now I was left with a few canned beans (wondered about cross contamination here), stewed tomatoes and a variety of canned fruit.

Went to the refrigerator and discovered I had all the fixings of a salad, but then was saddened to discover that I did not posses a single bottle of salad dressing that did not contain wheat. I will never forget that first meal, a salad with stewed tomatoes on top. Yuck.

Having torn apart my pantry, I had a good idea of my “normal” brands and was off to the internet once again to do my research. Found some company websites that listed their gluten free (gluten-free) products and some that didn’t, for those that did not list gluten-free products, I call their customer service lines. Some were helpful, some were not and others were quite rude. This went on for several days until I had a full database built in the brands and foods I was familiar with, so off to the grocery store I went. It took me hours to mull over all the labels, many were lacking in full ingredients. I had to find some new products, wrote down their names and brands, once again hit the internet and customer service lines to find out if they were gluten-free or cross contaminated.

The salads with stewed tomatoes, fresh fruit and vegetables were getting real old and I was nowhere near ready to really do any serious marketing for myself. I was sad, hungry, foul-tempered and overall really ticked off that removing three stinking items from my diet was proving to be such a daunting task.

I took the bull with both horns and decided that no matter what, I WAS GOING TO EAT A GOOD DINNER AND IT WOULD CONTAIN PASTA! Off to grocery store number one, the only flour they had was arrowroot, I didn’t think that would be good in pasta but purchased it anyhow. Off to the cutlery store to purchase a hand crank pasta machine and then to the department store to purchase those clear plastic drawer systems for my pantry. The drawer systems were the only way I could make sure cross contamination didn’t happen at home. In the end, it took nearly two dozen stores to track down enough ingredients to fill my “gluten-free” pantry shelf. I was too tired to make the pasta that night and loathingly sat down to have a salad topped with stewed tomato vinaigrette made from my newly purchased gluten-free vinegar. The next day I sat out to make some gluten-free pasta, it took many flops till I had a pasta flour figured out that tasted okay, but that night I dined on fettuccine alfredo and grilled chicken topped with mango sauce. Do I need to say how good it tasted compared to a salad and stewed tomatoes?

The local markets carry very few gluten-free flours, most will special order, but that takes a wait time of several weeks and I have to purchase a whole case at one time. Being Celiac and trying to cook has proven more frustrating then the thirty-five years it took to arrive at the correct diagnosis. One thing for sure, I realize that I can still eat what I want, enjoy what I want, I simply have to adjust the ingredients and adapt to my new limitations. Too bad the mindset isn’t so easily adjusted.

The next investment? My own grain mill for making the flours myself, now I just have to find suppliers that don’t have cross contamination.

[lemonade]

Hey lemonade, here's a big (((((((HUG)))))))) for you, we all understand! Unfortunately it will only get better with time. Wish it were otherwise. But just han... ok I won't say it anymore....

Pauliina

Does it really get better??? how long did it take you to feel better????

Im soo sick of this...

I wake up drained and exhausted every morning...not full of energy or refreshed and i sleep atleast 8 hours. does anyone else feel this too?

lem.

For what it's worth, we've all said at one time or another that we're tired of hanging in there! I still get that way too! After I was diagnosed, I was immensley relieved to have my symptoms verified by a medical diagnosis because I thought I was going crazy. It was also a triumphant "up yours" to everyone who thought I was making it all up. But after that wore off and the reality of this life-long committment set in, it was overwhelming. And when I didn't start to feel better immediately, I was really really grumpy and didn't see the point in "hanging in there." If I was to feel like poo, I might as well be eating the foods I liked that made me sick, right? Well, I'm telling you, it's worth "hanging in there," even when you are sick of it, because eventually you'll break through that phase of feeling sick all the time and all the inconvieniences will be worth it! In the words of Winston Churchill, "If you are going through hell, keep going!"

Karen

karen,

thanks for ur advice. how long did it take u to start to feel better?

lemonade

[happygirl]

It gets better, but it might get worse before it gets better! I was happy and devastated at the same time to learn my diagnosis. Grew increasingly devastated as I was so overwhelmed. Then, all of a sudden, I "got" it. Now, I made a lot of mistakes, and glutened myself numerous times.

Poor thing, I wish all the "experienced" people could just fast forward your calendar for you.

But, I promise that soon, you will be offering advice also.

I use tinkyada pasta and love it. I serve it to others and no one would know the difference.

I use a lot of McCormick's seasoning packets---many are gluten-free (but, certainly not all).

Keep it simple, learn the basics, and then go from there.

It took me MONTHS to feel somewhat normal. Your body has a lot of healing to do, and then a lot of replenishing to do. But any small, tiny amount of gluten I get sets me back and I am sick as a dog.

Any questions are welcome here....Good luck and we are all rooting for you.

[aikiducky]

Does it really get better??? how long did it take you to feel better????

Im soo sick of this...

I wake up drained and exhausted every morning...not full of energy or refreshed and i sleep atleast 8 hours. does anyone else feel this too?

Yeah, I used to have the fatigue as well, feeling like no amount of sleep would make me feel refreshed. And terrible brain fog. I can't really say when I felt better, I felt sometimes better and sometimes worse, up and down for the first year. I mean some days were definitively good ones, but then I would start feeling worse again, and it wasn't always because of a glutening, it was just because. Now I've been gluten free for 16 months and I feel just fine, for maybe the last couple of months now. BUT I wasn't very sick to start with, so if you have a very damaged intestine it might take you much longer to heal.

One thing that helped me in the beginning was taking a vit. B complex, it helped especially with the brain fog and sleepiness and depression, the "head symptoms" so to say. Eating broccoli and salmon would do the same thing I believe. And I drank peppermint tea and added cardamom and ginger to my ordinary tea, that helped a bit with the nausea. And I love cardamom in anything.

Pauliina