Tired, Frustrated, Scared

[Kit.DaMommy]

So as the topic suggests, I had a biopsy done Monday. My doctor is so sure that its celiac disease that he has already told me to stop eating gluten.

A little backround for you, I was a healthy kid. I had my first child when I was 16. Thats when things started going down hill. When I was 19 I was diagnosed with ovarian cysts. Which I am sure I have. But even when there were no cysts I was still in pain. I have since been told I have IBS, Anxiety issues, Nervous stomache, Abdominal pain of unknown etiology, and so on. Most of the time doctors don't give me the time of day anymore, they hand me a prescription for pain meds and send me on my way saying its just my cysts. I have had them tell me that 5 times even when the ultrasound showed no cysts. I am 22 years old and I don't want to live on pain meds the rest of my life.

So anyways, back to this week, I had the biopsy done Monday. I have been trying this diet. Which might I add is hard as hell. And I respect all of you out there that have mastered this. And though it would be nice to not have to worry about what I eat, I am more scarred that its going to come back negative and they still won't know whats wrong with me, I am sure many of you know the frustration of being misdiagnosed and ignored. But at the same time I can't afford to buy any of these gluten free foods I've seen in the mall here. I am stuck. Either way the test comes back could put me in a bad spot. Thank you for letting me have my moment to vent.

Love to all,

Be blessed

[ShayFL]

Welcome to the boards!! Many of us have been in your shoes.

I want to address the food/money issue. If you are accustomed to eating mostly processed foods, it will be a lot harder for you to adjust. However, eating gluten-free does not have to be more expensive than not. Im actually saving money because I dont eat out anymore.

Plain meats, eggs, veggies, fruit, rice, corn, beans are all economical. You just might have to learn how to cook more, freeze and budget your time. That is where we come in. We are happy to help. Let us know your regular foods, and we can suggest alternatives or gluten-free versions.

Most importantly I wish you well.

[Mtndog]

Welcome KitdaMommy. I think tired and scared is how many of us arrive at the board. I went gluten-free 3 years ago (seems like a lifetime ago) and the one thing that has changed is awareness! Before people used to look at me like I had three heads when I said I couldn't eat gluten.

Ask all the questions you need- there's a lot of good info and resources here!

[Kit.DaMommy]

Thank you for the words of encouragement. ShayFl you are so right though going from processed foods is hard. SOOOOOO hard! I had a sugar cookie today. It was just sitting there drove me nuts and I caved. I have never been good at dieting so this is going to be so hard for me to adjust to. I love breads and I have a horrible sweet tooth. The worst though is I love pasta. Italian foods are one of my favs! Oh, and I like arabic food come to find out even pita bread has wheat. its discouraging for me right now. And I love my fiance very much and he is extremely supportive, but he hasn't been adjusting to well to the diet either. That's how I ended up with the cookie today. He left them out and I found them. The hardest part like I said is actually finding the foods I can eat. And I have so many questions and worring about if my kids might have this if I should have them tested? How is my diet going to effect them? How am I going to go to family functions? (my family has never been over health concious with thier cooking). And many more things running through my head right now. How am going to find things that are gluten free that I can have, Can I have soft drinks, Can I still drink crystal light, etc.... I am sure you understand what I am saying. But its driving me nuts and after the cookie today I am pretty sure my doctor was right, I have only been gluten free for a few days, but when I had that cookie today I could have died. It hurt so bad. Anyways, this site has been extremely helpful, thank you all.

Love to all,

Be Blessed

[Adelle]

Ok to be honest, it's a hell of a transition. But if you just jump right in and accept that your life has changed, before too long you won't even think about it. I've been on the gluten-free diet for 2 years now and I don't even think about it on a daily basis. I think it's because my routines have changed and I've adapted to them (and my entire house is gluten-free, that seriously helps). Reading ingredient lists isn't a hassle now, it's just part of grocery shopping, I do it without even thinking. There's a gluten-free bakery not far from us, so I just buy bread (and treats if I'm craving) there. We don't eat out at all (well maybe once or twice per year we'll go somewhere), which actually makes up for most of the extra expense in the gluten-free diet (and we don't buy too many processed foods).

I think the thing you have to do is look at gluten as POISON. Would you have eaten that sugar cookie if it was dusted with arsenic? No. Same deal. Plus, when I went gluten-free, I told my DH that since I buy, prep, cook, store, and otherwise handle the food our house is going gluten-free. I have a right to be safe in my own home. Later he found out he needed to be gluten-free too, so it worked out well . But I think keeping gluteney foods OUT of my house kept me from cheating in the beginning. If it wasn't there, I couldn't eat it!! Granted, there are people who have mixed kitchens and if that's the way you want to go, they can probably help you out.

Welcome, and ask ANY questions you have, no matter how "silly" it sounds. Seriously, the people here are awesome!

[GFinDC]

Welcome to gluten-free! I found that there are lots of things to eat after a while. Rice and veggies and some kind of dead animal is good. Stew is good and easy to make in a pressure cooker. Whole Foods has some pretty good store brand gluten-free breads and things. Corn tortillas and corn chips etc... There is an article on this site listing safe and non-safe ingredients to be aware of that may help. Guacamole is good stuff for dips. Maccaroons are not so bad for cookies too and the Manachevitz Kosher brand are often on sale after Passover for cheapies. Chocalate cherry maccaroons, oh yeah!

[happygirl]

Thank you for the words of encouragement. ShayFl you are so right though going from processed foods is hard. SOOOOOO hard! I had a sugar cookie today. It was just sitting there drove me nuts and I caved. I have never been good at dieting so this is going to be so hard for me to adjust to. I love breads and I have a horrible sweet tooth. The worst though is I love pasta. Italian foods are one of my favs! Oh, and I like arabic food come to find out even pita bread has wheat. its discouraging for me right now. And I love my fiance very much and he is extremely supportive, but he hasn't been adjusting to well to the diet either. That's how I ended up with the cookie today. He left them out and I found them. The hardest part like I said is actually finding the foods I can eat. And I have so many questions and worring about if my kids might have this if I should have them tested? How is my diet going to effect them? How am I going to go to family functions? (my family has never been over health concious with thier cooking). And many more things running through my head right now. How am going to find things that are gluten free that I can have, Can I have soft drinks, Can I still drink crystal light, etc.... I am sure you understand what I am saying. But its driving me nuts and after the cookie today I am pretty sure my doctor was right, I have only been gluten free for a few days, but when I had that cookie today I could have died. It hurt so bad. Anyways, this site has been extremely helpful, thank you all.

Love to all,

Be Blessed

Pasta: Tinkyada (rice based) pasta

Coke and Pepsi drink products are all gluten free

All first degree relatives, regardless of symptomology, should be screened for Celiac (kids, siblings, parents)

Hang in there. Its a steep learning curve. But you have great resources here at your fingertips.

My best piece of advice is to learn to effectively read food labels. And never assume something is gluten free.

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

Some other good websites for your reading (besides this forum and www.celiac.com)

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

Let us know what we can do to help. Good luck!

[ohsotired]

Kit,

Welcome! I just scanned most of the replies, so some of what I'm about to say may be a repeat, but I wanted to offer you some support.

I was just dx'd in August, so I just hit two months of being gluten-free. And it has been difficult, no lie.

I went through feeling like "There's nothing I can eat." And then I discovered there's a ton of things I can eat, but I would certainly have to plan better, prepare most things myself, and not wait until I was starving to just "find something" in the pantry or when I'm out and about.

Then I went through a serious greiving process, not only for the foods I could no longer have, but for the CONVENIENCE of those foods (fast food, prepackaged foods). I felt very defeated by not being able to just grab anything I wanted.

So I started buying cookbooks, and spending part of my weekends pouring through those books and cooking and baking. I had quite a few failures - things that tasted horrible, baked goods that were more like bricks than food.....but I'm really starting to get the hang of it now. I'm feeling confident that there is nothing I can't make from scratch that's a gluten free version of all those foods I used to love. YES, it's time consuming, but this is the only body I have and I'm not gonna kill myself with food.

You can't look at this like a diet - diets fail. This is a total lifestyle change. If *I* can do it, *YOU* can do it.

(((HUGS))) Hang in there!!!

[lizard00]

Welcome!!!

I was thinking the same things as the previous poster. Dont' look at this as a "diet" in terms of a weight loss diet. Use the word diet in it's correct form: a compilation of what you normally eat.

Your diet just has to change, that's all. See avoiding gluten as avoiding poison, rather than feeling like not having the cookie is depriving you. It's saving your life. Besides, there are LOTS of delicious gluten free cookies to be had!

It's an adjustment, so don't think that I'm minimizing the effort it takes, especially in the beginning. But, you can do it!!! I have learned so much from the people here; how to swap things out, hidden sources of gluten, etc. So please feel free to ask away.

[Kit.DaMommy]

Again I just want to say thank you to all of you for being so supportive. I have been struggling, but I think I'll make it. I have always been told I am such a pain cause I am so persistant. All of you are wonderful and have given me great advice. I will definatly keep everyone posted on my progress. I might even need someone to talk me off the gluten ledge. Since the cookie I haven't had anything with gluten and am feeling better, just still trying to figure all this out. I have had lots of salads and grilled chicken, fruits and vegtables. Which is good for me, it has definatly made me realize that eating healthy is something I should have been taking the time to do anyways. I have two little girls, 6 and 2 and they need me and I have been using them for my motivation. And I have already made them appointments to get tested as well.

Love to all,

be blessed

[dhd2000]

One more quick tip regarding cost, our Super Walmart now carries some gluten-free things, like Gluten Free Pantry Muffin mix and brownie mix, (both are great and you can serve them to others who will not even know they are gluten-free) and Mi Del gluten-free Ginger Snap Cookies, both DeBoyles and Tinkyada pastas, corn tortillas for mexican night, many WalMart brand things are labeled Gluten Free. It is a new way of life, but hang in there, once you start to feel better, you really understand how much of a positive change this is in your life. My kids tested negative, but I will always watch them for symptoms. They do eat some gluten, a few snacks or sometimes lunch at school, but everything I make at home, including pizza/pasta, all meals, we all eat gluten free. They have adjusted easily. Good luck to you!

Dee

[ravenwoodglass]

Again I just want to say thank you to all of you for being so supportive. I have been struggling, but I think I'll make it. I have always been told I am such a pain cause I am so persistant. All of you are wonderful and have given me great advice. I will definatly keep everyone posted on my progress. I might even need someone to talk me off the gluten ledge. Since the cookie I haven't had anything with gluten and am feeling better, just still trying to figure all this out. I have had lots of salads and grilled chicken, fruits and vegtables. Which is good for me, it has definatly made me realize that eating healthy is something I should have been taking the time to do anyways. I have two little girls, 6 and 2 and they need me and I have been using them for my motivation. And I have already made them appointments to get tested as well.

Love to all,

be blessed

Welcome. It sounds like you are looking at this in a positive way. It is so tough at first. My DD refused to shop with me for a while after I was newly diagnosed when I broke down in tears and ran out of the store. It would be another year or so before I found this site and the great and supportive folks who are here.

Good for you for getting the appointment for your girls, do try and encourage other family members also. If their tests are negative please be sure to retest when they reach the teen years or if they start to have issues or there is a change in growth patterns or the development of learning disabilities or depression/anxiety. The rates for false negatives are still unfortunately high so if they have symptoms don't be afraid to try the diet even if testing is negative.

If you live somewhere that has a Wegmans they label all their gluten free stuff with a circle G so they are a very celiac freindly place to shop.

It is a big adjustment for us at first but the rewards are so worth it. Be sure to check meds, supplements and toiletries as well as foods. I hope your feeling better soon.

[ang1e0251]

[ I have a horrible sweet tooth.

You are describing me. The first thing I learned to make was Peanut Butter Cookies with no flour of any kind. If you haven't found the recipe, let me know I'll send it. It's a common one. The second thing was Death by Chocolate cake. The recipe was on the cacao website. It has 4 T. flour which I substitute with corn starch. It's amazing. I found I could make any adjustments as long as I had my desserts!! And I always have some on hand because as you found out, when you are hungry, temptation can take over. Do not food shop hungry. If I go hungry to the store, I buy something that I can have right away so I'm not tempted.

The worst though is I love pasta. Italian foods are one of my favs!

Ok that's me too. But another poster pointed out WalMart. I buy my pasta there. I can buy spaghetti and rigatoni that's gluten-free. Then make your favorite dish! Also if money is an issue, it is with me, I was even more broke when I started this lifestyle. I didn't even try to buy gluten-free breads or mixes, I just didn't have the money. I bought the 100 count corn tortillas at Walmart and I ate those as a substitute for bread. I toast and butter it with eggs, toast and spread PB & J, toast them for pizza crust. Now I'm just used to the flavor and enjoy it more than gluten-free bread.

How am going to find things that are gluten free that I can have, Can I have soft drinks, Can I still drink crystal light, etc.... I am sure you understand what I am saying.

What soft drinks do you like? Many are ok. I cannot tolerate any artificial sweeteners so watch that. If you start to react to those, drop them

You are in the right place. This is a very supportive group and no one knows the system more than the folks here. We're willing to listen to any problem. It's seems very hard now but as others have said, soon it will get easier and easier. When you go to family outings you may need to take your own food, I do. Just don't let yourself be sick, as you pointed out those 2 little ones count you and look up to you!

Hang in there, we are pulling for you!!

[Jenny (AZ via TX)]

I think one of the hardest parts is going to the grocery store. I didn't know about the list that happygirl mentioned until I was into this diet for a couple of months. I still take the list from glutenfreeindy.com which lists the brands that do not hide gluten with me every time I go to the store. I also bought the book Living Gluten Free for Dummies.

I'm cooking more than before which is good because we do eat healthier. I still have not mastered the baking, darn it! Hopefully soon.

There is so much info on the forum. If you are unsure about certain foods, use the search feature here. Chances are good that someone has already asked about it. Also, I changed all my lotions, makeup and such.

Good luck and hang in there.

Oh yeah, Italian was my favorite food too. I use the Tinkyada pasta. It's really good and my hubby (non-celiac) likes it too. So, you can still have some Italian. I add some shrimp or chicken to the sauce for protein. So easy and really good.

There are tons of recipes on this forum.