kbtoyssni

It took me a long time to build up my strength after going gluten-free. I was pretty much bedridden for six months. I started off taking five minute walks everyday. I'd walk as far as I could everyday. Sometimes I'd have to sit down and rest halfway. If I tried to push myself too hard, I would get worn out and not be able to do anything the next day. So I learned not to overdo it, to do only as much as I could handle. It took me 2-3 months to build up to walking a half hour and then everything fell into place - my body healing from being gluten-free, my endurance level and I could do pretty much everything I wanted at that point.

It's a frustrating process. I was very active before - doing an hour of elliptical a few times a week, lifting weights three times a week, spinning, racquetball, pilates. I spent at least an hour in the gym everyday so not being able to make it around the block was torturous. You just have to give it time. I don't know how long you've been gluten-free, but you may not make any major progress in the endurance area until your body has done some major healing.

This time, I thought I will just bring my own meat, hope there is a clean place on the grill

Cook your meat in foil. There's no way you can guarantee a grill won't be contaminated, especially if you're only using one set of tongs and someone else is watching the grill. Plus some charcoals contain gluten which can contaiminate your food.

I always bring my own food "just in case". It's inconsiderate of your stepson not to tell you that there would be things you could eat when everyone contained gluten, but even the most well-intentioned people accidently contaminate food or serve stuff that contains gluten. Think of how much time you have spent researching the diet - do you really want someone new to be doing trial-and-error on you? Don't feel badly if Susie is offended by you bringing your own food - it's your health and you have to do what's best for you.

What a progressive attitude! What college?

He goes to the University of Wisconsin - LaCrosse. It's not too big (maybe 6000 students?), but there are about four celiacs who go there. I have no idea if it's just UW-L that has gluten free food or all UW schools. I went to UW-Madison, but wasn't diagnosed until after I graduated.

I'm glad everyone's already convinced you not to make two separate meals! That was the first thing that jumped out at me about your post. Not only is it draining on you, but it increases the risk of contamination and I think it makes you feel left out or different or something. Gluten free food is normal food, there's no reason why non-celiacs can't eat it, too. Making one gluten-free meal might hel your husband understand the seriousness of this, too.

I definitely don't think of this disease as inconvenient. What's inconvenient is not being able to live my life because I'm too sick. Get a bunch of gluten-free snacks and keep them in your car and at work so you'll always have something around in an emergency. In my desk drawer I have Dove chocolates, apple sauce, gluten-free pretzels, tea, gluten-free rice bars. I bring my lunch everyday. I used to check for my keys and wallet when I left the house; I now check that I've got my snack with me, too. It takes a bit of a shift in thinking, to always have food with you, but it's worth the extra five minutes I spend in the morning getting lunch ready.

It sounds like you might be pressed for time. When I get home from the grocery store, I slice up all my cheese so it's ready to put on sandwiches, I wash my apples and put strawberries in mini tupperware so they're ready to grab. There's lots of stuff you can do to speed things up.

As for going out to eat - think of some "safe" foods that most restaurants have. Things like baked or mashed potato, salads, chicken, etc. Ask people where they're planning on going before you go so you can plan ahead. I like to look up menus online and call the manager before I go. That way I know exactly what I'm going to eat before I get there. Don't be afraid to suggest a different restaurant if you don't like the one everyone's going to. Know some "safe" restaurants around where you live so you can suggest those when you're going out to eat.

If you learn to plan ahead a little, the diet isn't that inconvienent.

Hey 2wheels4eyes! I live just north of St Paul so if you ever need a real-life celiac buddy, let me know! We can start our own little support group. (Actually, now I'm wondering if you're the person I emailed a few weeks ago about the diet when a friend gave me your name?)

Things do get easier. At first you feel completely different because so many things in your life have to change. And you don't know how to explain it to people and you don't know which brands of food are "safe" and everyday you discover something new that has gluten that you've been eating without realizing. But eventually it become second nature. I'm lucky that I never went through that mourning period for gluten. I was so excited that I could start living my life again. I did figure out that I was intolerant to peanuts a few weeks ago and that was the closest I came to a breakdown. I have to keep reminding myself that I can eat peanuts if I want to, no big deal, but I also have to deal with the consequences and it's not fair to my friends and my job and my life if I can't function just because I wanted a peanut butter cup.

I'd also like to say that there's a lot of really bad gluten-free food out there. But there's also a lot of really good food. It takes time to find it, though. If you want any tips on specific foods, let me know. I shop at the Fresh and Natural Foods, so I know the brands there pretty well.

Welcome! It's possible you do have some symptoms and don't even realize it. There were so many things wrong with me that I didn't know weren't normal until after I went gluten-free. Hopefully after a few months you'll see some positive benefits.

Rice Crispies have malt in them in the states, too.

I'd maybe give the dietician a call before you go and ask if he/she has experience with celiac. I never went to one when I got diagnosed, but I've heard lots of horror stories from people who have. It sounds like there are a lot of dieticians out there who don't know much about the disease. It takes a long time to figure out everything that contains gluten so unless he/she has spent some time doing research, he'll probably just hand you some printouts. If you are just starting the diet it might be useful, but after a month or two you'll probably know more about it than the dietician. Especially if you're reading this board.

I usually refer to celiac disease around new people as dietary restrictions. That way I'm not going into detail, but I'm also not being incorrect by saying it's an allergy or something. If the person is really interested, they'll ask questions and then I get into celiac disease. I'd tell the guy about it and bring some of your own food that you can share with him. I'm very open about the disease with everyone I meet and I always bring food to share - partially for myself so I can be part of the mass-food eating and partially to educate my friends on what a celiac can and cannot eat. They are often surprised by the really common foods I bring along - they often assume the diet is so restrictive that they don't realize all the stuff I CAN eat. At first I felt like anytime I went out the conversation revolved around me and my food, but now it's so natural for me to talk about it. It's very matter-of-fact for me, this is the way it is, this is what I eat, no biggie. If you don't make a big deal of it, hopefully he won't either. If he does, he's probably not worth it. Good luck

I have a question. If the pans are washed throughly or even put in the dishwasher, how can you get cross contamination? I understand using the same pan someone has made a grilled cheese sandwich and rinsing it out and using it to make gluten-free foods, but I would think a through washing would solve the problem. Any andwers out there?

Most of the time a good washing is fine, but if the pan is scratched at all, gluten can get stuck in the scratches. I do, however, remember how dishwashing worked when I had roommates in college, and there is no way I would trust anything in the kitchen to be gluten-free. Nothing ever got washed throughly!

Have you talked to someone in food service at your school yet? My brother's college is very celiac-friendly. They have a separate fridge in the back filled with gluten-free foods and a microwave that the gluten-free kids can use at any time. Everytime I visit, they're very good about getting me clean pans, showing me ingredients, giving me actual eggs instead of the egg-powder mix everyone else has to use.

It sounds like you're just going through the normal healing process. I did really well the first month on the gluten-free diet, then I got a slight cold and was out of commission for the next month. Give it time.

"I also take mobic for days when the pain gets really bad."

I am very confused about this. Mobic is an anti-inflammatory, right? Fibromyalgia is NOT an inflammatory illness. So what is the mechanism by which Mobic helps? All recent research has indicated that our pain has no relation to inflammation, although injuries or other conditions that cause inflammation can trigger FMS pain. So why would a doc put you on mobic for FMS? Do you also have RA or some kind of inflammatory illness?

I'm always interested in learning about new meds. Currently Ultram ER is what's giving me a life but I've tried lots of others.

I was always really confused by this, too. Mobic is an anti-inflammatory so I never understood how it helped my pain. I asked my doctors a few times and they weren't able to give me a good answer. All I know is that mobic works. I had to break down and take some yesterday, and I went from being miserable and barely able to walk and considering leaving work early to being fully functional and able to do my job again.

I do feel a bit itchy after glutening. I never get a rash and luckily the itching isn't too bad for me.

Maybe you should give her a copy of Dangerous Grains to read. It's an easy read and it gets the point across.

I'm sure you could get padlocks and the metal bits to attach them to at a hardware store.

Good luck! I live alone so luckily I haven't had to deal with the roommate-with-gluten situation.

Does anyone here have MCS (multiple chemical sensitivity) or any chemical sensitivities? I used to be really sensitive to chemicals pre-gluten-free, but once I stopped eating gluten I didn't seem to have any problems. So, I got glutened last Thursday, I still feel like crap today, and yesterday was the day they decided to re-wax the floors at work. It stinks around my desk and I have a headache and I'm thinking of vacating for the day. I also got sick when I cleaned my bathroom this past weekend. I'm going to buy some of that natural chemical-free cleaner next time I'm at the store. I think I wouldn't be having so many problems if I hadn't gotten glutened. Is there anything I can do to make me feel less sick? Why couldn't they have done this last week when I was feeling fine???

hineini - I agree with you that if the fibro symptoms only appear when glutened, you don't have FMS. Now that I'm gluten-free, I don't think I have it, but I figured I'd still reply since I was diagnosed with it. I guess I'm a FMS sucess story - got diagnosed and figured out the root cause of it. For a long time I referred to joint pain from glutening as fibro flares, although I now know better.

My pain usually moves around. Right now I have pain in my forearms and legs, right hip and right elbow (got glutened last Thursday). But yesterday the pain was in my knee and ankle and left elbow. I have joints that tend to hurt more than others (like my elbows and forearms, they nearly always hurt when glutened), but joints like my hips and ankles only hurt occassionally.

I also take mobic for days when the pain gets really bad. Ibuprofen doesn't seem to help me (this might have something to do with me taking it for two or three years for a bad knee - I think I've built up a tolerance). I've tried a few other drugs, but mobic is what works best for me. Unfortunately, it does not come in a generic form, so it's a bit more expensive than other drugs.

The FMS diagnosis is what lead me to celiac disease. I read a ton of books on it and many of them suggested an elimination diet. And when I ate wheat again, oh man, was I sick! I'd heard of celiac disease before, so I tried eating barley a few days later. I went gluten-free five days later without even bothering to go through testing for celiac disease. It made that much of a difference to me.

GFAngel - I also like to read everyone's medical history. It really helps me understand where they're coming from and what experiences influence their advice.

My pain also moves around. Sometimes it's my stomach, which usually feels like I've swallowed some razor blades and makes me want to curl up in a ball to stop the pain. Sometimes it's more in my intestines, which feels more like bloating/gas and a dull ache.

Over the counter. If you're taking meds, you might ask the pharmacist if there's a problem. I know it conflicts with some. I buy it at the health food store though for quality, but the pharmacist would know.

I wanted to add that I was taking St. John's Wort before I went gluten-free. It made such a difference that people who didn't know I was taking it even remarked on my change.

St Johns Wort can interfere with birth control pills.

Red Robin and Dino's (a greek fast food place) have gluten-free french fries. I *think* all Ore-Ida fries are gluten-free, except for maybe the seasoned ones. I know there's a list of their gluten-free products on their website, so check that to make sure. French fries were one of my favorite things to eat and I get a bit grumpy when I can't get them at a restaurant. I almost always come home and cook myself up a batch of Ore-Ida fries so I don't feel left out.

I ate so many things without realizing they contained gluten when I first went gluten-free. It takes a long time to figure it all out. The fact that you're on here reading everyday will help you find all the sources of gluten in your life much faster. I also don't put anything in my mouth that I'm not sure is gluten-free. I'd rather not eat than risk it. And I always bring something to snack on with me so I won't be put in the situation of having to eat something questionable when I'm starving. I've got gluten-free food stashed all over the place - my desk at work, my purse, my car, my friends' houses...

I was diagnosed with fibromyalgia before I went gluten-free. Initially it took about two months for my symptoms to lessen to the point where I could function again and probably six months for them to go away entirely.

Now that I've been gluten-free for nearly a year, I find that I only get mild joint/bone pain when I get glutened. My symptoms of glutening are pretty mild, though. This mild pain lasts maybe a week or two weeks at the most.

You may be able to bring your own lotion and nail polish, too. I had a hair consultation at an Aveda salon once, and I asked about this because most of their hair products contain gluten. They said I could bring my own shampoo and that a lot of their clients with allergies do. I'm sure it depends on the salon, but I'd imagine most would be accomodating of allergies. Most will also set up consultations with potential clients, so you might want to do that and ask them about ingredients in their products before you make an appointment.

I'd bring my own food, too. You need good brain food to do well in school. I always had trouble studying and paying attention if I hadn't eaten well.

Just act like yourself. I doubt you'll seem like a nerd. Everyone in your classes is taking them because they're interested in the subject, so it's not like you're going to be any more nerdy than anyone else. Try to meet some people in the first week so you'll have some study buddies. I know it can be hard to introduce yourself to random people. Have some questions ready to ask people so you can strike up a conversation.

Good luck! Let us know how it goes.

I always remember I have celiac, but that's probably because I'm so grateful for my diagnosis. I got my life back when I got diagnosed so it's not something I want to forget. I never want to lose that feeling of being so thankful everyday that I can get out of bed and live my life. I'm reminded of my celiac not only every time I eat, but also everytime I go to work, workout, go out with friends, stay awake for a full day without a nap, balance my checkbook, read a book - all the things things I couldn't do pre-diagnosis.

I was 23 when I got diagnosed. I've had mild symptoms for about eight years with things getting really bad about a year before diagnosis.

Looks like I'm the only one whose symptoms have gotten better since going gluten-free