Please Tell Me This Gets Better...

[JustMeInMD]

Hi everyone,

This is just my second post here, and already I'm venting to you guys...

Anyway, for those of you who read my "Hi, I'm new..." post a few weeks ago, you know a little bit of my history (symptom-wise) and that I had started eating gluten again after a "trial" of the diet sometime last year.

Well, I have made the decision (actually, my roommate/best friend didn't give me a choice... she told me I had to do or she was gonna beat me up ...) to go gluten-free FOR REAL this time, and FOR LIFE.

To give a brief summary of my story/symptoms, for those of you who are just tuning in:

(most, if not all, of these symptoms have been present for the majority of my life)

~bloating, cramping, gas, D and C, tingly fingers/toes, rashes, depression (off and on), mild anemia and other nutrient deficiencies (off and on), rumbly tummy, pancreatitis, gall bladder surgery, indigestion, nausea, reflux, vomiting, spacey-ness, low-grade fevers~

Additionally, I have a strong family history of diabetes and tummy troubles, as well as lupus and non-hodgkins lymphoma. I don't have an "official" diagnosis, as my bloodwork was negative (only had it done once) and my doctor basically told me that blood tests are often a "false negative" and it wasn't actually necessary for me to have a biopsy/endoscopy, because I was feeling better being gluten free so I should listen to my body.

Great.

Anyway, the VENT part of this post is regarding my coming to terms with the need to be gluten-free and the subsequent meltdown I had in Whole Foods yesterday. I was shopping and I pretty much freaked out in the middle of the store because IT TOTALLY SUCKS that gluten free food has to be so much more expensive than "non-specialty" food. I am on a SERIOUS budget as it is, how can I possibly afford to buy all this this "special" stuff. And I have a pretty busy schedule, so how can i possibly have time to COOK anyway. Eating on the run is pretty much a staple of my life (yeah, I know, fast food is bad... but it's sooo convenient and yummy... mostly).

Please please please someone tell me that this will get easier. I'm a "bread girl". I absolutely love it and have been known to eat whole pans of it all by myself (that would be part of the reason why I could stand to lose more than just "a few pounds"... but I digress...). I LIVE on cereal because it's cheap and quick and easy to eat and a great snack/meal. So much for that now... my fave gluten free cereal (Gorilla Munch) costs way too much (in comparison to non-gluten free brands) to just eat all the time. I have to save it/savor it. THIS SUCKS!!!

I've been gluten free (for good) for 2 whole days now, and it's already "old". I'm sick of it already. So, what did I do today, you ask?? I had some Wendy's french fries (they aren't cooked in a dedicated fryer) and now I'm in pain.

Yippee.

I'm sorry for such a long, rambling, emotional post. It's just one of those days...

[Guest j_mommy]

It's bummer at first but once you learn the ropes and stick to it it'll get easier...I promise.

Ok Cereal......Trix(check label as sometimes they change) and coco pebbles...check teh off brand of these they may be gluten-free too!!!!

B/c i'm a single mom I'm on abudget too. I only do "specialty" stuff occassionally. Spegetti is my vice and the only good thing is it makes enough to feed me a few days.

I also get the eating on the run thing( I work FT, school PT and raise my son). Fast Food is now out for me...I get CC'd every time) So I cook on sunday afternoons....make a couple things to last you through the week.

THere's a banana bread recipe on here that makes a 20 muffins and that is what I eat for breakfast.

Buy more natural gluten-free foods...fruits veggies ect. I know this is hard b/c convience was everything for me too and it was hard for me to learn to plan meals/food inadvance...but I learned....the reward was greater than anything. I don't run to the potty every two seconds, I have energy to play with my boy and feel good! Not to mention I'm slowly losing weight and I'm not hungry all teh time!!

Vent anytime you need to!!! We've all been there or are there.

Keep plugging away!!!

[Aligray]

Hey there!

Okay, I COMPLETELY understand where you are coming from! Completely!

I have been glutenfree for SEVEN months now. Was it easy?? No! BUT i can TRULY say the rewards are SOOO much better!

Here's a few tidbits from my story....

I started glutenfree diet in January and I was sooo scared to eat anything! B/c I was starting to feel better from it and the second i would get ahold of something with gluten in it i would get sick again. So for the first few months i ate the same things almost daily. During this time i took the time to get to know the do and don't ingredients. I started reading labels which is difficult at first but TRUST me when i say, that seven months later i can read a label in 15 seconds and no if it's a go or not.

It just takes a lot of time. Once you start to stick with it and get to feeling better I promise you , you will not want to go back. You just won't! I have not cheated at all in seven months. The reason is easy....I FEEL SO MUCH BETTER! So i look at gluten stuff as poison. And it is to my body. I have lost 28 pounds and a whole size in clothes too which was good for me b/c i have over a 100 pounds to lose. But I feel so much better! That six month pregnant belly i had for ever (WITHNO BABY IN IT! ) is gone b/c it was just bloating from the celiac.

The money thing...i am a single mom too on a strict budget. I did spend a ton of money in the beginning but that is b/c i was new at this. You will learn the tricks, i promise. You will learn what you have to buy as a specialty and what you can buy at walmart. I just started shopping at walmart b/c i was so afraid to shop there but now that i can read ingredients it's a piece of cake.

I just registered to reply to you so i'm not sure if they have pm here but if they do you can pm me anytime. I would be glad to help you.

You can buy fresh anywhere too don't forget that! Fruits and veggies are gluten free! YAY!

Oh, i totally had the problem of eating on the go ...BIG TIME and snacking issues, going out of town, etc. I just took a trip this past weekend and did not bring my own food AT ALL! That is such an accomplishment!

I have to go. Hope i've helped a bit. This will get better. Stick with it. You will feel so much better and you WILL get the hang of it. I promise

-Ali

[Aligray]

I forgot to say that this website Celiac.com is the best! I have the do forbidden list and okay list printed out. So does my mom at her house. We use it all the time! Referring to these two lists repeatedly are what will help you learn the ingredients.

-Ali

[kevsmom]

Hi! I'm sorry I missed your last post. I would have welcomed you earlier.

I also live in MD. I have celiac disease and have had diabetes for 29 years. My mother was diabetic, and my brother has celiac disease and diabetes. My father had ulcerative colitis and had an iliostomy about 30 years ago. I would not be surprised if he also had celiac disease, they probably did not test for it back then.

If you live anywhere near Westminster, maybe we can meet somewhere for pizza .

There are a lot of mainstream foods that are gluten free.

The food on this site will list anything with gluten in the ingredients:

Open Original Shared Link

Kraft will also list any gluten in the ingredients.

Orida has a website with a list of gluten free products.

Newman's has a website that will list gluten free products.

...Just a place to start.

Cindy

[kiwiinoz]

Hi everyone im new to this too,

Im just thankful that i have found something like this, i now know that im not alone - thats how i felt

I was diagnosed 06/20/07 and am slowly getting used to this, thankfully my housemate is very understanding and has decided to eat gluten-free when at home. I am now going through all the gluten-free packaged food out there and ruling out the ones that dont taste very good - i am not brave enough to taste any of the pastas but i will do it this week!!!

Im not too sure if there are any members that are Australian based but could you please make yourself known? if you could give me some recommendations on a 'bread' tasting gluten-free bread?? i have tried a couple and they to tell you the truth medioce - even when toasted and slathered in jam!

I am a bread girl and miss it like mad, i am craving a sandwich! I too have dreams about bread rolls!!

The most frustrating thing is when you go out for meals at restaurants, I constantly worry what im ordering might have 'something' that is going to make me sick or they are preparing/cooking it on 'something' that might have contaminated my food, friends that i am out with can see that i am visibly stressed about it and it doesnt do anything for the mood of the table.

I dont want to give up going out etc - Going out for dinner to a nice restaurant was exciting - im over nightclubs etc so it was my social activity!

just to say again how happy i am to find this forum!

thanks for letting me vent

[Hollylou42]

I am a college student who lives off campus and is also on a serious budget. So heres what I discovered when I was gluten free (back to gluten now to get a proper diagnosis, but probably no matter what disease I have (GI thinks it could be Chrons) I am gonna head back to gluten-free)

-Coco Pebbles and Frutty Pebbles are common cereals in every supermarket that at gluten-free,and since they are not 'speciality' they are cheaper then the gluten-free ones in the health food section of the supermarket.

-Fresh fruits and veggies, filled my snacking void more cheaply then the gluten-free snacks I could have bought.

-Rice and potatoes are a godsend, cheap, filling and gluten-free! Try the potatoes baked whole, or sliced into wedges and broiled until crispy, pan fried, deep fried, mashed, stuffed, the possibilities are endless and cheap!

-For when you really are craving a bad for you snack, normal potato chips (check the label of course, especially on the flavored ones) but most are gluten-free. Fritos too!

-I used corn tortillas for a bread substitute for sandwiches.

-Being a student, I didn't have much time for meal throughout the week, so on the weekend when I had a couple hours I would cook up a few things and attempt to bake something gluten-free (cookies or bread or something) and then put whatever I made in tupperwares to last throughout the week when I needed a quick meal.

-If you do attempt to bake at any point, find recipes using primarily white rice flour. It is the easiest to find, and the cheapest alternative flour I could find. Also if possible try an asian food store because they use tapioca and rice flours normally in thier cooking, so they have it cheaper sometimes then our supermarkets.

Anywho I think thats all I have for you. I guess the last piece of advice I have is that a lot of things people eat everyday are naturally gluten-free. So by sticking to those products it is cheaper. And easier on your system to continue to eat those gluten-free things you had already been eating all along rather then introducing a whole bunch of new alternatives so quickly.

Good Luck

-Laura-

[laurelfla]

it gets better!!! i'm living proof. after two years i can still get teary-eyed in a room full of gluteny, pizza-eating people, but i've come a looooong way. i cook super fast meals now and have learned several mainstream, cheaper products that work for me instead of the stuff at the health food store (although sometimes i splurge there, there is nothing like a cinnamon roll you don't have to make yourself!). i feel you on the budget thing, it is super unfair that our specialty products cost more. i think one reason is that manufacturers try to kill too many birds with one stone! by making things organic and gluten-free at the same time, i figure the price goes up, but that's just my thought. (not that i'm not in favor of organic or whatever, i just don't have the moolah!) but hang in there and vent whenever you want. you won't find a group of more understanding people than your fellow celiacs.

[JustMeInMD]

Thank you everyone for the encouragement...

I'm feeling a bit better today, not quite as bummed as yesterday, but it's still a work in progress. I know that I have to do this for my health, and I'm taking it one day at a time right now.

Thank you all for all the tips, tricks and kind words and for letting me vent. I'm going to the bookstore later this week to pick up a cookbook and the Living Gluten Free for Dummies book. I know that eating on the go is going to be the biggest challenge for me (I'm a hair stylist and makeup artist who does lots of weddings and such, so I'm always running around the salon or running from wedding to wedding, etc).

Thanks again and hugs to you all!

[JustMeInMD]

I have lost 28 pounds and a whole size in clothes too which was good for me b/c i have over a 100 pounds to lose.

I just wanted to say congrats on your weight-loss! I also have about 100 lbs to lose, so your post has really inspired me. I know that some of my tummy is from the bloating, and I look forward to being able to get rid of some of that. I've struggled with losing weight all of my life (I'm 30 years old), so in some ways, I have also viewed being gluten free as a catalyst to help me lose some weight, as it will force me to eat better (since naturally gluten free foods [fruits and veggies] are healthier). I've never been a big veggie person, but I know that I will have to broaden my horizons and learn to love them...

[JustMeInMD]

Hi! I'm sorry I missed your last post. I would have welcomed you earlier.

I also live in MD. I have celiac disease and have had diabetes for 29 years. My mother was diabetic, and my brother has celiac disease and diabetes. My father had ulcerative colitis and had an iliostomy about 30 years ago. I would not be surprised if he also had celiac disease, they probably did not test for it back then.

If you live anywhere near Westminster, maybe we can meet somewhere for pizza .

There are a lot of mainstream foods that are gluten free.

The food on this site will list anything with gluten in the ingredients:

Open Original Shared Link

Kraft will also list any gluten in the ingredients.

Orida has a website with a list of gluten free products.

Newman's has a website that will list gluten free products.

...Just a place to start.

Cindy

Hi Cindy!

Yay for another MD girl!

I'm in Montgomery County (Silver Spring), so I'm not exactly close to Westminster, but I have friends that I visit in Baltimore County so, perhaps one day we can set something up! Thanks for all the info...

Hugs

[Karen B.]

Just a quick "head up" on one think you should know right off -- gluten-free baked products tend to be higher in carbs and calories than their normal, gluten-containing counterparts. Something I posted the other day...

Plain White Bread (regular gluten bread)

Serving: 1 slice, 22 g

Calories: 64

Carbs: 12g

Fiber: 1 g

gluten-free Sandwich Bread (from Whole Foods)

Serving: 1 slice, 50 g

Calories: 150

Carbs: 24g

Fiber: 0

OTOH, Tinkyada pasta is the best gluten-free pasta I've tasted (friends can't tell when I serve it to them) and it's about the same as regular pasta but it's higher in fiber.

Also, you may find this link handy. It's to the Hormel gluten-free list. All regular stuff you can buy at the grocery. Open Original Shared Link

You might want to see if you have a local Celiac group. Local groups have all the great info on where you can get the best gluten-free stuff for a good price. We can tell you what we've found to be good but not where to get it.

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

Also, once you identify the products you like, check out Amazon for good prices on them. A lot of their gluten-free stuff ships free if you order more than $25 and the prices on most stuff is cheaper than local places.

And if you find yourself ready to attack the next time you see an old favorite in someone else's hands, post something here and I'd bet people will have a gluten-free substitute. On second thought, don't wait until you're ready to attack. <grin>

[kbtoyssni]

At first the diet will seem more expensive because you're trying to buy gluten free substitutes for all your old gluten food. Going gluten-free takes some thinking outside the box if you want it to be cheap. Know your mainstream brands and which ones are safe so you don't have to buy the stuff with the "gluten-free" label on the front. I'm a huge shopper of sales - I'll buy 10 cans of beans at a time if they're on sale.

Corn tortillas (the mexican ones are $2 for 36) are a great substitute for things like bread. Or I do egg/tuna salad lettuce wraps. For crackers I often use corn chips.

Check out a local asian food store - they will have cheaper Thai-style rice noodles and rice flour. I can get rice flour for $2 for 4lbs - much cheaper than Bob's Red Mill!

For lunch I do baked potatoes or rice with cheese and salsa instead of sandwiches.

Cereal is a bit of a problem, but I've started eating more scrambled eggs (eggs are cheap!) or eating non-traditional breakfast food like fruit or soup or leftovers from last night.

I love tacos - you can make taco meat (or I make a bean salsa) for cheap and top it with your veggies or make a big batch of chili.

[pmrowley]

It does get easier with time. I was diagnosed 28 years ago; I have had enough plain rice cakes over my childhood years to fill a container ship! We've come a long way in the last couple of decades.

The trick is to find some gluten-free comfort foods and indulge yourself from time to time. My favorite store of all time is Trader Joe's. I have a couple where I live; if you have one within 30 minutes of you, it's worth the trip. Their prices are so much better than specialty health food stores, and even standard grocery stores, it's ridiculous. Gorilla Munch sells for about $2.95/box there. They also have AWESOME rice spaghetti and some incredible sauces, all gluten-free and very inexpensive. Throw some ground turkey in their marinara sauce, grab some spinach and their AWESOME caesar dressing, and you have a feast! Don't forget their Quatro Fromaggio chese mix for topping the salad and spaghetti!

They also have a lot of frozen ready-to heat foods (their frozen chicken tamales are to die for!) that are gluten-free, including frozen gluten-free waffles (regular and banana.) You owe it to yourself to make a trip. They have several stores in MD; not sure whether there are any in your specific area though.

www.traderjoes.com

I will say, the biggest mistake you can make is dropping off the diet, for a "binge." I read a lot of posts from people new to the diet, and their willingness to "cheat" every now and then, and it blows my mind that people would willingly do this to themselves. Under no circumstances, allow yourself to cheat! Find a gluten-free version of your special craving, and you won't be tempted. Remember that as your gut heals, reactions to gluten will become more and more violent, as your absorptive surface area increases.

My favorite treat: Trader Joe's Chili (great, and gluten-free,) a 1/4 pound uncured Fearless hot dog, and some grated cheddar on top. Wash it all down with some Blackthorn hard cider (okay, the cider is a bit pricey, but I got a taste of it during a trip to the UK a few years ago.)

Hang in there,

-Pat

[whitball]

I can assure you, this will get easier. I had a similar post a year ago. I was angry, depressed, sad. I even cheated just to see what would happen. Well.......I got sick, very sick. It's not worth it, so you have to make this work for you. I have problems with rice and corn also, so I really struggled for awhile. I have learned a a few things though:

1. There's beer!

2. Lettuce wraps are awesome. Fajitas are very good in lettuce wraps.

3. Pancakes are great to take on the road. I cover two counties and put 1200 miles a month on my car. They're easy to pack and I can put whatever I want on them.

4. Fresh fruit and veggies work fine for me

5. Individually packaged cheese convenient

6. Make your own trail mix with nuts, raisins, chocolate chips, mmmmmmmmm!

7. Oh, did I mention that there is beer?

I could go on and on, but I think that you get the idea. There are many things that you can make and buy. This website is full of good advice and is a great place to vent. Good luck to you.

[VioletBlue]

I've lost count of how many times I've had a meltdown in the supermarket. Once it was because I discovered Vons stocked gluten free items. I cried for joy. Then I had another meltdown when they remodeled the store and removed all the gluten free items. Another meltdown when the store was out of CF Diet Coke, the only soda I drink. Then there was a go around in the ice cream aisle once. LOL, I'm sure there have been others I've forgotten and I'm sure there will be more. I've been gluten free since last December. I'm convinced now that supermarkets are basically at their core evil places.

As someone else mentioned, comfort food is good. Find something that makes you happy and always keep it in the house. Mine is Haagan Daaz chocolate ice cream. Find foods you love that are naturally gluten free and indulge and reward. Buy the more expensive cut of meat or the fancy vegetables instead of bread or cereal.

The money thing I completely understand. I've spent the last seven years on a strict food budget. At first becasue I had to and then because it made paying bills and having savings easier. I pretty much avoid specially made to be gluten free foods now in part because of the cost. I stick to whole foods with the occasional gluten-free snack like rice crisps or something. I just can't afford the gluten-free stuff nor the gas to drive for an hour to get to a Whole Foods or the shipping to order from an internet site. And in the end for me the gluten-free stuff never tastes good enough to go to all the trouble and expense. Of course I went through a lot of different gluten-free crackers and cookies and breads before I decided it wasn't worth the expense.

In short, give it time. Try all the gluten-free stuff out there and decide what's worth the money and what isn't. And always carry tissue in the supermarket, LOL. That place will always make you cry.

Violet

[Trenten's Mommy]

Hello All!

I am the mother of a newly (1 week ago) diagnosed 2 year old son with Celiac Disease. I know that this might not be the right forum for me, but I wanted to tell you all that reading about adults with it, and the struggles that you've gone through, helps me understand what my son can not tell me yet. We do not know where this has come from yet, so we have absolutely NO idea of how our son really truly feels when he gets sick. We are just 1 week into this and have gone through so many emotions. It's easy for us to WANT to cheat seeing as we aren't the ones going through it,but just seeing the difference in him after only 7 days, make all of it worth it. I guess I just wanted to say thank you to all of you for sharing. It is so incredibly encouraging to meet others and hear your stories. Thank you.

Tara