Omg This Sucks...

[loneferret]

Hello, first time poster here.

Wanted to introduce myself, I have a feeling I'll be visiting this site a lot in the coming months.

I'm 35 and was diagnosed with Coeliac 7 days ago (July 6th 2011). For years, my parents would say most of my life, I've been having all those symptoms related to this disease. For years I was going to see doctors (on average once a year) explaining the pain when eating, losing weight etc. It's a point now that I just can't eat for most of the day and need to wait about 10 hours after I've waken up. Doctors have told me everything from lactose intolerance to "it's your imagination..." Well a camera stuck down my mouth, biopsy and blood work they finally found something! Whooray! There's a reason why I can't seem to go over 130 lbs (I'm 6 feet).

Now the fun part, being told that 90% of the foods I love I can no longer eat. :'(

I'm still under the shock of the news, and like a bad song, this is all I can think about right now. The more I research, the more I realise that this is going to be difficult. I love bread. It's part of every meal I eat. Fish, steak and pasta. If it's in a plate, there's a piece or two of bread not far from it.

My friends and family are very supportive. But the simple fact that this "diet" is for life is bringing me down more then I expected. They are trying their best to get my spirits up, but at the moment it's hard on everyone. Especially the wife. Our food budget is getting hit pretty bad too... The price of these things is incredible (well in Quebec Canada they are anyway). Also I live in a small and remote town. I need to drive an hour to a grocerie store that has gluten-free foods.

So all this accumulated is getting to me. Finding it hard to look at the positive side of this news. Eating now depressed me, everytime I see my plate it reminds me of Coeliac. Even if it's a gluten-free meal.

Ok, think I'm no longer making sense and I dom't want to rant so.

Happy to have found this forum, hope I get to know some of you...tips and tricks on how to over come this is my priority.

Have a good one people

[samie]

I understand about the food you miss. I have been gluten-free for 7 mths now and there's still food I miss but I know I dont need it. All it will do is make me sick. It has gotten better I have been able to avoid it and not give in. Also gluten-free is expensive here to in tennessee. Just know it does get better.

[notme]

it does suck alot at first, but you get better at it. you will also FEEL so much better. trust me, if you hang around this board long enough, we all still have rants and meltdowns. i am one year in (shy of a few weeks) and as much of a pain in the ace it is, i would never cheat intentionally. it amazes my friends and family b/c i have *zero* willpower but this thing i follow very strictly. in the beginning you will probably want to skip the dairy. i did for 6 months and then was able to digest hard cheese, yogurt, etc. ice cream still knocks me out (but i sneak some anyway if i have plenty of time for naps the next day) and soy makes my digestive system all messed up.

gluten free items are pricey! about the only thing i buy regularly is (udi's or rudi's) bread - all the other brands of bread i tried were 'crap' and tasted like cardboard and i buy (tinkyada) pasta. every now and again i splurge and get some glutino bagels but you can save alot alot alot of money by just reading the labels - some things i was surprised were always gluten-free. the brand of ketchup we have used for years <so i was going to buy it anyway, the mustard we like, canned veges, regular MEAT chicken fresh veggies, etc. at first it is overwhelming. i remember standing in the middle of the supermarket thinking in despair "i can't eat ANYTHING!!" like everybody on here says: shop the perimeter of your supermarket. just b/c they have it in the (lol) freak section doesn't mean the regular brand isn't gluten-free. and half the price or less! check the safe/unsafe lists on the homepage of this site and if you have questions, ask away. SOMEBODY on here knows the answer welcome to the best club you never wanted to join <also learned that on here lol

now i'm off to freak out about my trip to nj - ta-taaa! *skips away* LA LA LALALAAA

[loneferret]

welcome to the best club you never wanted to join

ROFL

Good one.

Thanks guys. I'm well aware of all the good that will come out of all this. Just I guess the first few months will be difficult.

Also need to get my kids checked, which is making feel bad. I know if one (or both) test positive it won't be "my fault", but I know myself well enough that'll be kicking myself for it.

I'll go thru the forum and see what I can find.

Any Canadians in here? From Quebec maybe? I see alot of product names that just aren't available here.

[notme]

I understand about the food you miss. I have been gluten-free for 7 mths now and there's still food I miss but I know I dont need it. All it will do is make me sick. It has gotten better I have been able to avoid it and not give in. Also gluten-free is expensive here to in tennessee. Just know it does get better.

hey i'm in tennessee knox-vegas - sometimes i think i'm the only celiac in the state LOL although we do have an earth fare store that i go and stock up at. actually found BREAD CRUMBS (glutino $3 bucks) which is great because i hate to grind up a 6 dollar loaf of bread just to have meatloaf haha

[mbrookes]

Hey Loneferret,

I have been gluten free for three and a half years now, so it is second nature to me. I DO understand your frustration! I'm probably old enough to be your mother, so listen to me like a mother.

You can eat almost everything you ever did, with modifications. Remember, as already said, most food is naturally gluten free. It's the preparation that makes it poison to us.

I watch my budget carefully (I'm a retired schooltacher) so I don't buy much prepared gluten-free food. Bread is an exception. Udi's is a good substitute. Toast it for sandwhiches. The toasting makes it taste more like what you are used to. Tinkiyada is a good pasta. Use highly flavored sauces for a while until you sorta forget the real pasta taste. Budget for treats. There are some really good cookies out there.

Remember, we are here for you. Among the bunch, one of us can usually tell you how to safely fix anything you want to eat. After a while, your life will be so much better you will stop resenting the few restrictions. No, you are not like everyone else anymore. But then, you never were. (Actually we are superior to all those "Ordinary" people)

[organicmama]

I made my own bread a couple of days ago and it was truly amazing. No one, gluten-free or not, could tell it was gluten-free bread. The ingredient list seems long, but other than assembling the ingredients, it was super easy to make. You should definitely try it out.

Open Original Shared Link

[Fairy Dancer]

I think it can be a case of what you are used to or what you get used to. At the moment you are in the process of accepting your diagnosis and are mourning the loss of some of your favourite foods, so how you are feeling is understandable.

I am not diagnosed with celiac as I have never been tested but have been getting symptoms that resemble it. As there is a celiac in my family (my brother) I decided to try a gluten free diet and see if it helps at all. But because I have a celiac brother I pretty much grew up on a near gluten free diet as a child (when he was living with us) as family meals where usually gluten free so my brother could eat it. Although I did eat some gluten containing foods when my brother wasn't eating with us. I only really started consuming a lot of foods like wholemeal bread and pasta etc after I left home because that is what healthy eating guidelines recommended. The problem was the more of those foods I ate the worse I started feeling so I have returned to my roots and gone back to the kinds of foods I would have eaten as a teenager and child (meat, fish, vegetables, fruit, potatoes, sweetcorn, dairy (as I seem to be ok with that especially if it's live bio yoghurt, however I have a question mark over cows milk as last time I had a glass it did upset my gut a bit) and things like nuts. Because I like those foods and grew up on them I am not really mourning the loss of bread or other gluten containing products.

As I said I think it's a case of what you are used to but eventually you will get used to the foods on your new diet and start to enjoy them. They can be just a delicious as the gluten containing foods if not more so and there are a lot of gluten free substitutes. My brother used to have gluten free bread on prescription many many years ago and I actually used to be prone to trying to pinch it because it actually made nicer toast than regular bread!

Being gluten free seems hard now, but in time it will get easier.

Hugs

fd

Edited to add that in regards to the cost I have found it has not changed much but that is because I moved away from heavily processed foods and chose to eat more things like fruits, vegetables, potatoes etc (although I always did prefer potato over things like pasta or bread anyway). I find they are often quite cheap in the UK whereas eating a lot of processed foods actually works out more expensive. When it comes to heavily processed foods you pay a lot for relatively low nutrition and an awful lot of additives.

[loneferret]

Holy cow... thanks for all the great replies. I actually laughed today, which is something I haven't been doing much these days.

Guess I have lots to learn, although I know I'm not alone in this. Nice to be able to communicate with other living with this condition. Knowing that what I'm feeling (depressed, sense of morning) is normal.

I'll try that bread recipe for sure. I've made 2 loafs using another recipe already. Better then the store stuff, but still not great.

Listening to teachers is something I'm used to. My mum is also a retired English teacher

Some good news today; I ate gluten-free mac & cheese this evening (added Tabasco). Found a gluten-free store that actually delivers in my area. Expensive, but the quantities are larger then what the groceries offer: 2.2kg vs 600g. And I found some potato chips, that according to the ingredients, have no gluten. Ice cream and some chocolate syrup. Labels seem good. What's funny now, is I notice what other people are buying at the grocery line up. Like that woman behind me earlier this evening getting 5 baquettes, buns and other wheat products.... oh the smell. lol

Words of encouragement is something I need right now and I'm getting those.

Again thanks

[Diane-in-FL]

hey i'm in tennessee knox-vegas - sometimes i think i'm the only celiac in the state LOL although we do have an earth fare store that i go and stock up at. actually found BREAD CRUMBS (glutino $3 bucks) which is great because i hate to grind up a 6 dollar loaf of bread just to have meatloaf haha

I crush up Rice Chex to put in meatloaf and meatballs. Try it sometime.

[txplowgirl]

Hi Loneferret and welcome to the forums.

My question I have for you is do you know about the cross contamination stuff? If you don't it dosen't matter how you eat you will keep getting sicker if you don't avoid it.

Is the wife and kids going gluten free with you? If not then you need separate cutting boards, toaster, teflon pans, unless you use cast iron or stainless steel. Strainers, anything wooden as in cutting boards, spoons, bowls, etc. You need your own separate condiments, Ketchup, mustard, peanut butter, etc. A bread crumb in any of these can make you sick and keep your antibodies active. If you have household pets, to be safe they need to be gluten free too. I learned the hard way on that one.

Wifey, if still eating gluten needs to brush her teeth before any intimate kissing. Yep, that'll get ya too. Doorhandles, refrigerator handles, steering wheels, knobs, remote controls, yep all need to be cleaned. You will need to be almost OCD about this. Anyway, that's just a little bit. Look up cross contamination in the search box and you will get a LOT of info on this one.

Yes, it's normal to mourn, but it does get better. It just takes time. Hang in there and ask questions, lots and lots of questions.

Have fun.

[GFinDC]

You'll get used to eating gluten free after you have done it awhile. It can actually be a much healthier diet if done right. Eating whole foods cooked from scratch is the way to go. Avoiding processed foods is a good idea anyway, as you don't get all the preservatives and food colorings and such that they load them with.

It sounds like you are really underweight, which is a classic sign of celiac disease. The autoimmune reaction destroys the villi lining the small intestine. Without them the ability to absorb nutrients, including vitamins and minerals is severely reduced. That can lead to short stature, brittle bones, and other malabsorption issues.

It is often recommended here to load up on protein and limit carbs. Eating at least some protein with every meal. You will need to check everything you consume though, including vitamins and medicines, and any drinks including tea or coffee etc. Spice blends can be a problem also. Single ingredient spices are usually fine.

A good way to go is to simplify your diet at the start. You may have cravings at first related to gluten withdrawal, but those should ease up after a while. Also you may be hungrier than normal as your body starts repairing damaged tissues. That's normal and not a problem. Just be sure you are eating healthy foods and not empty calories.

Some vitamin pills may help and some pro-biotics. Check carefully for gluten though. Also, cutting down on sugar or eliminating it for a while may help.

[Sammyj]

Chocolate may not be your thing, but

[navigator]

In Britain we have an organisation called coeliac uk and they publish a food and drinks directory every year of brand names and supermarkets own labels which are gluten free and with no cross-contamination issues. If you're diagnosed they issue it free every year (non-coeliacs can purchase it). They also issue monthly updates of any changes.

It would be worth checking if there is a similar organisation in Canada. I was diagnosed on 6th May this year and when I received this book in reduced my shopping time significantly. At first I felt as if I was spending hours doing every shop by the time I read through the list of ingredients on everything.

Like some of the other posters I cook from scratch and stay away from processed food as much as possible but I've found a terrific gluten free ciabatti roll by a company called ds. I don't know if you can get them in Canada.

It is a lot to get your head round but once you start feeling the health benefits it will be so much easier. My husband has chosen to go gluten free at home which makes things much easier in terms of cross-contamination. As he's a real meat fan and not keen on pasta, he hasn't felt that he has had to make any adjustment. He still has beer in the house as the only cross-contamination issue is he has to brush his teeth before kissing me.

Stick in there. Good luck

[loneferret]

As far as help from the Canadian gov. there's not much there besides a tax credit for gluten-free foods. Doesn't mean they don't help, but I haven't found much at the moment. I did however signup to the Quebec Association for celiac disease, should be getting a few books and info on how to cope, live etc etc etc.

All this research is overwhelming I must say.

As far as CC goes, well having been a tattoo artist at one point I'm well aware of it. Very easy to contaminate something if one is not careful, and all precautions must be taken I agree. But at this time, I won't be going RAMBO on CC in the kitchen (and the wife). Not until I know how sensitive I am to Gluten. So far we're being careful preparing meals, and I do have my own toaster. Everything is separated in the kitchen. I have the foods I can and cannot so as to make sure no one mixes. We are getting a dish washer...

Must this forum is very active, and this calms me down a bit. Knowing that there's always someone logged in and ready to jump in with a comment, suggestion and/or kind word.

[Menic]

I absolutely recommend reading The Gluten-Free Bible: The Thoroughly Indispensable Guide to Negotiating Life Without Wheat by Jax Peters Lowell. It's a little out of date but it's got a lot of good information and personal experiences. I read it cover to cover after getting diagnosed and it made me feel better.

Also, when in doubt, post here!

[Takala]

Chocolate may not be your thing, but

[loneferret]

Jeez... I'm not a huge chocolate fan, but I do enjoy it from time to time.

And yes, it seems that US and CAN foods aren't automatically the same. That goes for distribution/manufacturing of products.

For example, Kellogg's Gluten Free Rice Krispies. According to an email I got, there's no market for it up here so they won't make it available.

So in keeping with the title of this thread.. man this sucks. At least now I know that special attention needs to be given towards chocolate.

[loneferret]

Well been off gluten for almost 2 months now... and guess what? I'm in no mood to continue.

My general attitude towards everyone is bad going to worse.

So I've taken a step in keeping my sanity in check: Back to the food I love.

Unless my children are diagnosed with Coeliac, I'm sticking to my decision.

I've lived with the pain most of my life, I can deal with it for the rest of it.

[angel9165]

Well been off gluten for almost 2 months now... and guess what? I'm in no mood to continue.

My general attitude towards everyone is bad going to worse.

So I've taken a step in keeping my sanity in check: Back to the food I love.

Unless my children are diagnosed with Coeliac, I'm sticking to my decision.

I've lived with the pain most of my life, I can deal with it for the rest of it.

So sorry to hear things haven't gotten better. As I was reading through all the positive feedback from other members I was thinking how tomorrow will be exactly 1 year and it has gotten better. I don't crave bread anymore and like you, that was a staple for me. I do have Udi's most days for lunch as I like sandwiches but no other bread. I have good days and bad ones too. Sometimes I'm still very angry...like just now when my co-worker walked in w/ a huge brownie and was offering to share. Or the days they cater Valentino's (very yummy italian food restaurant in these parts)...I can smell it from my office. But from where I was last year...I cried when someone walked by w/ lasagna and a breakstick...I'm doing so much better. I wish only the best for your health.

[long silver hair]

Dear Loneferret,

Fret not. 99% of normal food in the grocery store is already naturally gluten free. You are just used to eating lots of the stuff with gluten in it. When I told my boyfriend about it, he freaked! You'll have to eat WIERD food from now on!!!! We won't be able to eat out!!! No, Hon, fruit, meat, veg have no gluten. That's most food. I can eat in ANY restaurant. Breathe. Its going to be ok.

There's more and more really delicious food available in grocery stores that have no gluten in them. Betty Crocker gluten-free cakemix OH MY! AWESOME!!! There's Lots of bread recipes without wheat rye or barley that look and taste and feel like real wheat bread. Peanut butter cookies and choc chip cookies and cupcakes that my buddy can't tell are gluten-free, hahaha. Now that I've got my deary calmed down, I am going to dive into the gluten-free cookbooks for noodle recipes and more bread recipes. )) Its been a long long time since I've bought store bought bread and was surprized to find "normal" bread is already 5 bucks a loaf OMG. gluten-free specialty breads are about that, so no big deal. I'll just make my own for less cost.

CAn't wait to make eggrolls again, and sourkraut dumplings YUM. So read the labels, and wander through this fab site for specific foods that hide gluten in them.. like instant coffee.. who knew!!!? Friends with years more experience living gluten-free sent me a package Starbucks instant "ready brew VIA" French roast instant coffee. When I don't have the 10 minutes to make real coffee, I can nuke a cup of water and have one of these, knowing I'm safe from days of gut wrenching that gluten gives me. You'll find your favorites, and make a few mistakes, but it will be ok.

[Poppi]

Well been off gluten for almost 2 months now... and guess what? I'm in no mood to continue.

My general attitude towards everyone is bad going to worse.

So I've taken a step in keeping my sanity in check: Back to the food I love.

Unless my children are diagnosed with Coeliac, I'm sticking to my decision.

I've lived with the pain most of my life, I can deal with it for the rest of it.

Loneferret, we have all felt like you do right now but you really need to take a look at this decision.

It's hard. Really hard. I sat in the car and cried the other day because my one safe takeout restaurant was closed and I was hungry and exhausted and didn't want to go home and cook a gluten free meal for 7 people but I did it anyway. Because my health is not just important to me, it's important to my kids.

Why would you condemn yourself to a lifetime of pain because you miss bread and beer (or whatever it is you are missing)? Over the course of your life the pain can (and will) get worse. You could suffer serious nerve damage, multiple types of digestive system cancers, depression, chronic pain, fatigue and more other health problems than I can list right now.

Your kids deserve better. Your wife deserves better.

I am the only confirmed celiac in the family and all 7 of us eat gluten free. My house is a completely gluten free zone because it makes my life easier and when I am healthy I can better care for the needs of the whole family.

Are you the main income earner for your family? If you had to go on disability how would your family get by? This is a real possibility. I am 35 and have osteoarthritis in my feet and extensive nerve damage in my neck and back from celiac. I will never be able to earn a full time income.

Plan on growing old with your wife? Want to do it with an ostomy bag?

I'm sorry if this all sounds harsh but this is the reality. This disease kills you slowly. Eating gluten is just not worth it.

[livelifelarge24]

It helps me to focus on what I CAN have & just try to forget about the rest. It might sound dorky but I literally say to myself as I walk through the grocery store "I can still have that!" I do it in an over exaggerated way. But I make an effort to point out to myself all the things I can have, especially the junk food I also make a point not to even go near the bakery section because that's just unnecesary torture. There really ARE many great foods out there. And if you are a die hard bread lover (like myself) you should really try UDIs bread. They also have muffins and hamburger and hot dog buns and pizza crust... The stuf is so amazing I would still eat it even if I could have the poison bread again.

[ENF]

Well been off gluten for almost 2 months now... and guess what? I'm in no mood to continue.

My general attitude towards everyone is bad going to worse.

So I've taken a step in keeping my sanity in check: Back to the food I love.

Unless my children are diagnosed with Coeliac, I'm sticking to my decision.

I've lived with the pain most of my life, I can deal with it for the rest of it.

Good luck, if this is your final decision on the matter - but quitting the gluten-free diet, as others have mentioned, could have dire consequences for anybody with Celiac Disease.