New Here -diet Question

[grandmae]

Hey Susan, I just found out last week that I am a celiac and I was overwhelmed with the idea of what I had to do with my food for the rest of my life. When I found this web site and started reading what everyone had to say, I started feeling better about what was happening to me, and I am 47 yrs. old. I did go out and spend $43.00 in two days because I was not sure what to do or how to do what needed to be done with my food. I have been on the diet now for 4 days and I can already feel a difference with my body. I am 70 lbs. over weight and already diabetic type II, along with a list of other medical problems. If I were you I would not keep thinking about what I am missing as far as what I use to eat, but think about the good tasting food that is yet to come. It is a total mind set and it is up to you.

For myself, I want to be around for my son who is 26 my grandson who is 6, my dad who will be 80 this year and my husband. I love them all and don't want to miss being with them. I just lost my mom last August to cancer and I will find out next week I think if I have cancer myself.

One of the other members of this board told me to start with the basics. Eat what ever protein that you can eat and include vegatables and fruit.

Do yourself a favor and do the diet. I know it is different but you will be so glad that you did.

Ellen

[VydorScope]

That sounds more honest. Ok, maybe there will be some trial and error involved and not everything is easy and perfect like the initial posts sounded. I guess I just don't have any grasp on how to begin. I know that 90% of what I eat has gluten in some form. Can I still have diet coke/diet pepsi? I wish I knew someone on the diet who could coach me some.

The cafeteria. Yes, everyone eats there 1-3 times per day every day. There is no where else to go to get food. I really can't explain it more without risking my job.

We dont need to know your job (though its not hard to guess at this point, at least for me), but we cant help unless you tell us what kind of choices you do have in your cafeteria.

Yes your job is at risk if you say you have celiac disease but what if you just said you an a food allergy? I know the rule about celiac disease.. but not sure if it aplies to allergies too?

And yes Diet Coke/Pepsi are gluten-free, infact I have yet ot find a soda that is not.

As for all the ppl suggesting she brings a meal, forget it. We need to work with in the confines of what is offered to her.

We all want to help you, but you need to give us SOME info to do that.

[IronedOut]

I wish I knew someone on the diet who could coach me some.

You now know 7,400 plus people on this diet, all with varying degrees of symptoms, successes, setbacks and skills. Bring your questions here and chances are someone will have an answer. As you can see just from the responses to this post, more than likely you will get more information than you thought was out there!

[SusanRachel]

We dont need to know your job (though its not hard to guess at this point, at least for me), but we cant help unless you tell us what kind of choices you do have in your cafeteria.

Yes your job is at risk if you say you have celiac disease but what if you just said you an a food allergy? I know the rule about celiac disease.. but not sure if it aplies to allergies too?

And yes Diet Coke/Pepsi are gluten-free, infact I have yet ot find a soda that is not.

As for all the ppl suggesting she brings a meal, forget it. We need to work with in the confines of what is offered to her.

We all want to help you, but you need to give us SOME info to do that.

Please don't even try to guess, especially not out loud. It will just make me have to leave the board before I've learned what I need to learn.

First good news all day! I can still have diet coke!

What's in the cafeteria? Nothing healthy except the salad bar. Burgers, fries, pizza, various mysterious casseroles, mexican... The problem is that I don't know what they put into the foods they serve, so I have no way of knowing what's "safe" if it isn't bunny food. I'm not sure what to do about that.

SR

[StrongerToday]

I wonder if you can't talk to your supervisor and/or H.R. person?

And I can promise that while none of us jumped up and down at the thought of being on a gluten free (and some are soy free, sugar free, dairy free, corn free, potato free...) diet we are all greatful to know how we can feel better. It's not called the "gluten free CHALLENGE" for nothing. When I find new foods to eat, or recipes, or oreo-style cookies (and yes, the donuts are great too!) then hooray for me

I'm eating healthier, have lost 46 pounds, feel so much better then I did six months ago! You're in control and you are worth it!!

[IronedOut]

Please don't even try to guess, especially not out loud. It will just make me have to leave the board before I've learned what I need to learn.

First good news all day! I can still have diet coke!

What's in the cafeteria? Nothing healthy except the salad bar. Burgers, fries, pizza, various mysterious casseroles, mexican... The problem is that I don't know what they put into the foods they serve, so I have no way of knowing what's "safe" if it isn't bunny food. I'm not sure what to do about that.

SR

Can you ask what's in the food without saying why you need to know? Maybe you're just the curious type?

I'm with you on the bunny food thing. I didn't fight my way to the top of the food chain just to eat lettuce! But I'm learning to like it a lot more when it's all there is to eat. I think I like more vegetables now than I used to so I guess that helps.

[pumpkin]

I have to say in response to your concerns about giving up the things you love...pasta, sauces, etc. I thought I was going to have a hard time saying good-bye to those but once I got gluten free and started eating safe I found I craved the fruits and veggies over the sweets! I do have my set backs and I'm still trying to figure things out but all in all it's been a very positive thing for me. I have to say too that this board has been VERY helpful to me in my search for all things gluten free. Hang there, you can do this!

[frenchiemama]

I think I have a pretty good idea about what you do and why you can't bring it up. It sounds like it might be time to make a choice between your career and your health, since it sounds like you can't have both.

For years I had very mild symptoms, so mild that although I knew I was "sickly" it never seemed abnormal and I had no idea that I had this kind of disease. Then in the months before diagnosis everything started to just go downhill. My health is now improved, but I will never be like a "normal" person or even back to where I was in the years before diagnosis. If I had waited another year, or probably even several months, my health might have completely unravelled leaving me without the chance of ever recovering.

Think about the consequences before deciding that your job is more important than your health.

[par18]

I might be about to be diagnosed with Celiac disease. My doctor ordered the tests because I had iron deficiency anemia. My Gliadin IgG and IgA are high, TTG IgG is normal. I have a few very minor GI symptoms - mild lactose intolerance and more frequent than average stools, but nothing that bothers me. Reading about the diet, I can't imagine being on that for the rest of my life. How many of y'all choose to just monitor your calcium/iron, etc and skip the diet? Yes, I know I'd have increased risk of lymphoma, but a 1% risk of lymphoma is better than a 100% risk of being miserable.

Thoughts?

SusanRachel

Yes I think you don't have enough "miserable symptoms" to be committed to this lifestyle. I went years with minor symptoms and did not even know what Celiac disease was or that this message board was available. If you choose to wait until you really get sick (if in fact you do have celiac disease), I'm sure you won't have any question about which path you will take. Good luck.

Tom

[SusanRachel]

I'm eating healthier, have lost 46 pounds, feel so much better then I did six months ago! You're in control and you are worth it!!

Lost 46#?? If I lost 46#, I'd disappear! I like the weight I'm at now. That's going to be the real challenge.

[StrongerToday]

But it doen't have to be. I've lost the weight because for once I am eating healthy meals all the time. I'm a single mom who relied way too much on fast food, frozen dinners, pre-packaged meals... (although I would practically sell my soul for a Pizza Hut pizza right now). Also, because I wasn't feeling well most of the time, I was never exercising, or even have enough energy to play with my kid, clean the house, etc.

I was also dealing with a Candida issue (intestinal yeast overgrowth) and my dietitcian had me on a strict low sugar diet for a while. I totally lost my sweet tooth... I used to have a Pepsi at lunch every day, now it's a treat once in a while. I used to have ice cream or frozen yogurt every day for desert... now I'm letting my GI heal and having NO dairy (sigh). I do hope to introduce dairy again soon and am praying for a good reaction. But for now, I can deal with it. I do have to plan ahead a bit by making sure I've got something to cook for dinner and bring for lunch, etc. - but other then that, if you try to take this as a "one day at a time" it's much easier to tackle.

You may or may not loose weight, a lot of people are underweight from malnourishment and actually gain some weight.

[SusanRachel]

You may or may not loose weight, a lot of people are underweight from malnourishment and actually gain some weight.

I'm kinda hoping I don't gain either. I like the weight I'm at. I know. Strange for a woman to be perfectly happy with her weight, but I really am. I exercise a lot and feel good doing it. I run with a few friends and they have trouble keeping up with me. Now that I'm not anemic anymore, I feel awesome all the time. That's part of the problem I have with getting myself to believe the diet is important/necessary. I'm still trying to get my brain around it. The good thing is that I can't even think about starting the diet until after my endoscopies, so I have a few more weeks to adapt to the concept before it might become a reality.

I really appreciate all the advice and information people here are offering. Thanks.

[VydorScope]

Susan,

I am guess your young, prbly under 25? You dont have to answer fo course... but you should know that celiac disease very often hides most symptons from teens till early 30's. That happened in my case. They are not sure why, prbly a horomone thing.

As far as your cafateria goes, if you choose to stay in your job, then do the best you can. Start with the bunny food, and look to minimize gluten in other foods. YOu siad mexican? Look for corn toritlas, and the like instead of wheat. If they do meat, look for pure meats with as little added as they can. The protien is good engery for your work outs to. If you choose to stay where you are, then you need to do what you can with what you got.

In general Fruits, Veggies, Meats and Dariy are normaly safe(unless added to of course). After that your gonna have to do some educated guessing on whats left.

You can keep the wieght on, just pile up on different foods.

[happygirl]

Susan-As there is no 'standard' symptoms for people with Celiac-some are overweight before diagnoses and going gluten free helps them shed extra pounds. Others, like myself, had lost weight (usually, the losing weight is what you hear more of in the media and common literature) because I was so sick. Once I went on the gluten-free diet, I evened out again.

[key]

Susan,

I liked the weight I was at before going gluten-free. I am 5'2 inches and 105lbs. I run and exercise all the time. i try and make healthy choices as to what I eat and what not still. It is a bit hard sometimes, because I am vegetarian and everything I believed before just went out the window. I didn't gain or lose weight on the diet, but it is important that you try and learn a bit on where gluten is and isn't. There is no point to being on the diet if you just "guess" what you think may be gluten-free. I think you will eventually get sicker if you don't follow the diet. If that is what you choose, then it is your life. I am 31 and I honestly felt pretty fatigued, bruising, Irritable bowel symptoms, anemia, etc. by the time I figured it out. I know I had symptoms long ago, but they got much worse all of the sudden. My point is that most of us here felt SO cruddy, we were thrilled to find out why. I hope it doesn't take you hitting rock bottom before you decide to do what is best for your health, but at the same time, I think it would be very hard to follow the diet when you don't feel bad and can't tell a difference whether you eat it or not. THere are people here like that.

I think you can try and eat in the cafeteria where you work. EAt salad and try and eat mashed potatoes, mexican food, etc. Giving up eating what you like around your friends and family is the hardest part of this disease. WE have all talked about it here. We don't like being different, but we like the benefits to our health.

Good luck and ask as many questions as you want. I do think that if you follow the diet ,you may be surprised that you will feel better then you do now.

Monica

[skoki-mom]

SusanRachel, I know how overwhelmed you feel. Lots of people here seem to love this diet. I personally am not one of them. However, I do it. I try to keep positive about it. I keep my goals in mind. Really, what I am after is not symptom relief (I do not have any symptoms), but a long and healthy life. I have 2 beautiful little girls and I not only want to see them grow up, I want to LIVE my life to it's fullest, I want to be there and be healthy for all the things they have yet to experience. This diet is hard, at least it is for me. At times I can't fathom that I haven't eaten bread in 5 months now, or chinese food, or chicken fingers, or (my favourite) a hamburger. But, the longer I do it, the more "natural" it is for me. You learn ways to deal with it. Hell, I have 50-60 years to go like this, better get used to it. Really, it comes down to....does the disease control you, or do you control the disease??? I'd prefer to be the one in control. So many people here are sooooooooo ill, I look at my own situation and am grateful I got a warning to make myself better before I got really sick. Hang in there, you CAN do this.

As for your job, I find it shocking that in America today an employer could make you eat 3 meals a day in their cafeteria, not allow you to bring your own food, yet not provide a MEDICALLY NECESSARY DIET! That is, to me, akin to telling someone with diabetes they can't use insulin on the premesis, or telling a person who suffers from a life-threating allergy (say to nuts or shellfish) that they have no right to know what is in thier food. That is unacceptable. I agree that if they will not do it, you have a choice to make. Is your job worth dying over?????

Hang in there.

[VydorScope]

As for your job, I find it shocking that in America today an employer could make you eat 3 meals a day in their cafeteria, not allow you to bring your own food, yet not provide a MEDICALLY NECESSARY DIET! That is, to me, akin to telling someone with diabetes they can't use insulin on the premesis, or telling a person who suffers from a life-threating allergy (say to nuts or shellfish) that they have no right to know what is in thier food. That is unacceptable. I agree that if they will not do it, you have a choice to make. Is your job worth dying over?????

Hang in there.

Umm in her case they do.. and please dont draw attn to it. She knows she has to decide, lets not get her in uneeded trouble. I cant say more, but please lets just work with what she has to work with.

[SusanRachel]

At times I can't fathom that I haven't eaten bread in 5 months now, or chinese food, or chicken fingers, or (my favourite) a hamburger. But, the longer I do it, the more "natural" it is for me. You learn ways to deal with it.

I can't have chinese food?!!!! Why not? I thought veggies and meat and rice were all in the "In" crowd! Which of those three can't I have?

I went shopping today and discovered that I'm an idiot. I looked a zillion labels. I wound up buying two products: parmasan cheese and onion dip. Why only two? I have no idea what soy lecithin and vanillin and carageenan and a score of other ingredients are. I couldn't find a section of the store that had health food or gluten free stuff or anything. The only other products I could find were plain rice (that's ok, right?) and plain oatmeal. Even the flavored oatmeal had some suspicious-looking ingredients and the flavored rice had WHEAT in it. I can't have potato chips and onion dip for dinner.

[ianm]

Oatmeal is off limits and I have never had problems with Chinese food. I guess it depends upon the restaurant.

[SusanRachel]

Oatmeal is off limits and I have never had problems with Chinese food. I guess it depends upon the restaurant.

Oatmeal is off limits too? I thought I read it was ok. Is there a list somewhere of the really basic foods and brands that are ok to eat?

[frenchiemama]

Ok, here is my food info. The tinyurl is a link to my online storage space, so I would advise you to save the documents that you want in case I ever change it or close the account.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Here is a list of the "mainstream" brands that don't hide gluten under any other ingredients (like "natural flavor" for example). They will clearly list any wheat, barley, oats or rye:

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Klondike

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

I can't have chinese food?!!!! Why not? I thought veggies and meat and rice were all in the "In" crowd! Which of those three can't I have?

Generally it's the soy sauce. There is gluten free soy sauce that you can buy, and I have eaten plenty of things with a white sauce at chinese places with no trouble.

[tarnalberry]

I appreciate everyone's input. Seems that I'm alone in my thinking. I just can't imagine a life without pasta, pizza, muffins, stuffed mushrooms, bagels, chocolate, bread, stuffing, spinach balls, blueberry pudding, cookies, and everything else I love and to and instead be relegated to eating bunny food and rice for the rest of my life. It's too overwhelming of a concept to cope with. Not to mention, how to you manage when you have to eat in a cafeteria environment every day? Before anyone asks, no, I can't bring my own food.

you don't have to not have those foods - as many people have pointed out, there are tasty 'imitations'. additionally, you only think that you can't live without them because that's what you're used to. as you add new foods into your diet, there will be other, gluten-free, things, that you'll feel the same way about. it's not even close to just being 'bunny food and rice'.

Nice that there are things like that that you can cook, but how do your brownies hold together without flour? And what can you possibly bread something with without bread? Sorry if I sound disbelieving, but this is just blowing my mind. Ultimately, I don't have time to cook every night, or even most nights, so I rely on stuff that's ready to go, so I'm thinking if I do the diet, I'll be living on baby carrots.

since we can't have wheat flour, we use rice flour, or bean flour, or sorgum flour, or quinoa flour, or potato flour, or corn flour, or millet flour, or buckwheat flour, or amaranth flour, or nut flour, or soy flour, or one of the other types of flours we can have. besides, there are a lot of decadent recipes, not designed for the gluten intolerant, for brownies and cakes that don't have any flour anyway - because that's how they are designed. I make a killer brownie from dates, nuts, and cocoa, and that's it. you don't have to cook every day - cook once a week and refrigerate/freeze, and you're still set.

They may have made it, but how did it taste? I'm guessing if I do the diet thing that I'm going to lose a ton of weight because if I don't like the taste of something, I won't eat it even if I worked for hours to make it. Then I'll just get frustrated and not eat at all. I still don't have a good answer on how to handle the cafeteria. I can't talk with the manager about what I can eat because if word gets out, I may well lose my job. And don't ask why. I can't explain. ADA doesn't apply.

like ANY food - specialty or not - some tastes good, some tastes bad. you explore until you find things you like. there's a LOT of food you can eat. A LOT. as for the cafeteria, well... it sounds like you can get food outside of the cafeteria during non-work hours. so eat plenty before and after, eat the 'bunny food' (gosh I hate that term!) while you're there, and go from there. though, this is an imcompatibility between you and your job, and you will need to consider the long term ramifications.

That sounds more honest. Ok, maybe there will be some trial and error involved and not everything is easy and perfect like the initial posts sounded. I guess I just don't have any grasp on how to begin. I know that 90% of what I eat has gluten in some form. Can I still have diet coke/diet pepsi? I wish I knew someone on the diet who could coach me some.

How to begin? Look at the four links on this page for a list of what to avoid. then eat anything else.

I can't have chinese food?!!!! Why not? I thought veggies and meat and rice were all in the "In" crowd! Which of those three can't I have?

I went shopping today and discovered that I'm an idiot. I looked a zillion labels. I wound up buying two products: parmasan cheese and onion dip. Why only two? I have no idea what soy lecithin and vanillin and carageenan and a score of other ingredients are. I couldn't find a section of the store that had health food or gluten free stuff or anything. The only other products I could find were plain rice (that's ok, right?) and plain oatmeal. Even the flavored oatmeal had some suspicious-looking ingredients and the flavored rice had WHEAT in it. I can't have potato chips and onion dip for dinner.

there's more than veggies and meat and rice to chinese food - there's the sauce it's cooked in. same goes with most other food too, and you can't ignore what's in the sauces. and while oatmeal is out, there's a lot of other stuff you could have gotten at the store: plain chicken, prepacked deli meats from safe companies, cheese, yogurt, eggs, avocados, zucchini, beets, apples, oranges, beans, onions, rice noodles... yada yada.

Oatmeal is off limits too? I thought I read it was ok. Is there a list somewhere of the really basic foods and brands that are ok to eat?

See the link I posted above, and the posts by everyone here. Googling "gluten free foods" will get you a lot of links as well.

[skoki-mom]

I can't have chinese food?!!!! Why not? I thought veggies and meat and rice were all in the "In" crowd! Which of those three can't I have?

The problem with Chinese is manifold, but the big "hidden" culprit is the soya sauce. You just don't know what brand they are using, very few brands are gluten-free and you can bet the cheapo take out place is not using organic soya sauce. As well, the noodles are off limits, as is all the breaded/coated stuff. AND, even worse, even the veggie stuff is probably often cooked in the same wok/pan, so cross-contamination is definitely a concern with Chinese, as it is with most fast or take out foods. Sorry to be the bearer of bad news. I am intending on learning how to cook Chinese myself, just haven't gotten around to it yet. FWIW, the 2 brands of soy sauce I know to be gluten-free are Tamari and VH.

Re: the oatmeal..... oats are believed to be safe in theory, but due to growing/harvesting/processing methods, tests have revealed them to be heavily contaminated with gluten. Look up a thread called "It's official, we can eat oats!" for a discussion and a link to a company that has just started marketing gluten free oats. I have not tried them myself, but probably will place an order one of these days.

SusanRachel, your despair comes through so clearly in your posts. Please, give the diet a chance. I *know* how hard this is, it is truly life changing, and I my thoughts were consumed by it when I first got my Dx. Now, it is just a part of my life and I deal with it one meal at a time. It *does* get better!

[DianeByrd]

Excellent fact sheet. And more than enough evidence to go with the good life.

Do you know if there is some documentation out there that states in plain english the fact that whether you are asymptomatic or not, any (and all) gluten is damaging? I need some help dispelling the notion that a little won't hurt.

Excellent fact sheet. And more than enough evidence to go with the good life.

Do you know if there is some documentation out there that states in plain english the fact that whether you are asymptomatic or not, any (and all) gluten is damaging? I need some help dispelling the notion that a little won't hurt.

This is a great question! I've been wondering the same thing. I don't see an answer to the question, though. Has anyone replied? Even if there isn't any documentation, I'd love to know what others say to people who question them about avoiding even the smallest contamination.

Our family has been gluten-free since January 26th, except for a couple known accidental glutenings (one on February 5th - malt in the chicken broth, and one on February 12th - communion). Does that completely wipe out all our previous efforts to stay gluten-free? It is so hard to move forward in the dark, since our symptoms are not obviously celiac related. I've thought I've noticed improvements in myself (less fatigue, fewer little bumps, maybe a little more weight) only to find another day my bumps just as prolific and itchy (They've never itched before!) and headaches every few days (not at all typical for me). We can't tell yet if our daughter is gaining weight and she is the whole reason why we started the diet again. My husband thinks he's noticed a slight improvement digestively, but since he still consumes milk products here and there and he's stopped taking lactase pills because we don't know if the ones he has are gluten-free, it's hard to tell. I'm also not sure about my son. He has still complained about headaches some.

I was VERY tired and had a headache today after eating at Olive Garden off their gluten-free menu. I don't think I'll do that again. By the way, I read a very helpful tidbit off the Gluten Free in San Diego website in case any of you choose to go Olive Garden: the brocolli is blanced in the pasta water! I was glad that I knew that ahead of time so I could ask for it to be cooked separately. I wonder if the seasoning on the brocolli or Salmon had gluten. Last night we ate at Outback Steakhouse in Oceanside, but the manager there was very reassuring that their staff knew how to avoid cross contamination and had already served three other gluten-free tables just that night. Needless to say, if my fatigue and headache were gluten induced, I think it was more likely to be Olive Garden than Outback. Personally, I think it's best for our family to avoid eating out for the next couple of months, just to be sure we're really getting the gluten out of our systems. These two restaurant outings were social events, so I'm not sure how to handle this is the future without becoming hermits.

I digressed from the original question. I still would really love to know how to answer people who question the small contaminations. Is there no benefit if we've eliminated the vast majority of the gluten? I inadvertently offended a friend when she borrowed my knife off my plate (she had bread on hers) and I asked her not to put it back on my plate.

Thank you everyone for all the helpful information I've read here. I only wish I could be 100% sure that we do or don't have celiac disease and that we're truly gluten-free while were trying to figure it out.