NicoleAJ

Kody,

It's a good idea to take some time off, and I'm glad that you're quitting your pizza delivery job. As far as MS is concerned--please don't worry yourself about that now. Make sure that you give yourself time to recover from the celiac diagnosis and figure out if there are any other food intolerances or allergies. MS is mostly diagnosed a bit later in life than your age, and you don't want to go through all of those invasive tests for nothing because all of those symptoms can occur with celiac disease. I was tested for MS this summer, and doctors, nurses, and technicians all implied that I had it. I was completely terrified because despite the fact that MS can be manageable at first, it is a degenerative disease that can cause serious complications in the future. Don't put yourself through all of that worry when it's likely that there's a simpler explanation for all of your symptoms. For me, it turned out that I had pernicious anemia, and a simple B12 shot every two weeks was enough to prompt my recovery. Get your vitamin levels checked, and try eliminating common offender foods one at a time to see if you have secondary dietary issues. If you don't see results after that, then you can start to worry about other things, but don't get yourself panicked right now.

When I was in third grade, one of my friends, a fellow classmate, was diagnosed with brain cancer. She had to miss the second half of the school year and stay back a grade, but as far as I know, she's still doing well, and we're in our late twenties now.

I wish all the best for your friend's recovery.

What prep has the doctor given you? I've had 3 colonoscopies unfortunately, so I've had several different types of prep. I hated the one that you mix with Gatorade because it made me unbelievably ill (vomiting in addition to D)for much longer than it was supposed to--10 minutes before the exam, I was still using the restroom. The gallon of stuff is by far the best, but it's basically soapy water, so when it's cold, it's totally palatable, but when it got warm towards the end, it made me vomit a good deal, but it was also the most effective and quickest way of clearing the system. At a certain point you will no longer be able to leave the restroom. So bring into the bathroom a few different glasses--it will take you a while to get through one, and then you'll have to start measuring the next one. Then bring an ice bucket in there so that you can make sure that the liquid stays cold. Be sure to bring some good reading because you'll be there for a while.

The prep is the worst part. The procedure is a breeze, and if you're doctor is any good, you won't even remember a thing.

I had irregular periods before diagnosis, but it went in the other direction. I'd have my period very heavy for two weeks straight, and then I'd get two weeks off before it came back in full force for another 2 weeks. My PMS symptoms were always severe, and I'd often have to stay home because even maximum absorbency tampons and pads weren't enough to slow it down enough for me to stand up for more than a few minutes at a time. At 15, the doctors needed to put me on the pill for hormone control (I was far from needing it for prophylactic purposes). After diagnosis though (when I was 24), I started getting normal periods after only a few months. It's nice to be normal now, but the PMS is still a killer if I don't use medicine. I have no idea what caused this, but I'm glad that it's back on track because I spent so much time anemic in the past.

I just wanted to jump in on the instant grits issue--they're certainly a great idea. Just make sure that you don't get the Quaker Oats ones; I called the company about them a few months ago and they said that they have cross contamination issues with them (though their plain rice cakes have been tested as gluten free).

I'm a grad student, but I was surprised that my very large, public university does not have a lot of resources for celiacs. I went to the school nutritionist and tried to get some info on eating in the commons or at the food courts (hoping that they'd be so accomodating that I could have most of my lunches there since I'm always on campus with teaching and office hours), but they had no clue. She told me to go around to them individually and ask, which seemed like such a waste of time, particularly if they are not all informed about the gluten free diet. Consequently, there is a fridge and a microwave in the office, so I just bring my lunch and heat it up, or I eat at home. It's too bad that they're not more accomodating--I'd have such trouble dealing with this if I had to live in the dorms at this school.

I'm so sorry to hear that you're going through this Marlene. It sounds as though you're really in a bind. I hope that you can find a way out of it soon enough. At the same time, if your family must really rely on you to work full time, then you don't want to work yourself so ragged that you get too sick to do anything. It might not be a bad idea to look into alternative options, such as disability insurance. I hope this all works out for you. I'll be keeping you in my thoughts and prayers. Good luck.

gf4life--thanks for posting. I won't be able to watch today, but please let us know how it goes. Also, Nantzie, thanks for posting the biography. I've actually seen her in movies without knowing who she was. It's interesting that she'd play a young Audrey Hepburn considering that there's been a whole segment about speculation of Hepburn's possible celiac disease on the celebrity thread.

Thanks for the recipe link--I'll have to try this. I bet I would like quinoa better toasted than plain. Also, I didn't rinse it before cooking it either.

Congrats on the job. San Francisco is amazing, and it's especially wonderful for people with celiac. My boyfriend is originially from the bay area, so we spend a lot of time there visiting, and I have not had a single problem finding food there. I'm actually going for another 10 days over Thanksgiving. I can't wait because so many restaurants and stores there are extra gluten conscious.

Yes, I did go to Risotteria, and I nearly cried when I saw the gluten free breadsticks on the table. I had such difficulty ordering because I wanted to order everything on the menu. I finally settled on pesto, mozerella risotto, which was absolutely amazing. I want to go back to the city just for the pleasure of going to Risotteria. It made my weekend.

I also went to Marseille on West 44th and 9th because I saw on CeliacChicks.com that a bartender/chef had marked up a menu, indicating which things were gluten free and which were not. I decided what I wanted to eat before I even showed up--the lamb. It was delicious, and then I had the best creme brulee for dessert. I just showed them my Triumph dining card, and the kitchen staff and waitstaff was already informed about what gluten free meant and how to cook the food. It was absolutely amazing! A bit pricey, but worth every penny.

I would highly recommend Marseille for those of you who haven't been. It seems that everyone has already discovered Risotteria, but that was my absolute favorite because I was able to eat with complete confidence.

Thanks for the kind words. This evening I was finally able to eat without feeling completely ill, so I'm definitely on the mend.

Thanks so much Laura. You certainly know what it's like to be a student at a big school like this where you can find great friends, but if you're going through a difficult situation, you can also feel really lost.

Also, thank you smilemaker. It's great to hear encouragement because I feel anxious about following professional standards in extreme cases like this. I figure that I'll never regret following my heart, but then I second-guess myself as well, so I appreciated your comment.

So I went to NYC this weekend to visit a friend, and I had some fantastic meals and had no problems anywhere except for this place (I think it was on 16th and 9th in Manhattan). We called ahead and asked if they could do gluten free, and they said yes, and then I did everything right. Careful explanations, use of the Triumph dining card for the cooks, lots of questions and double-checking. It was just a simple salad with some goat cheese and plain pistachios with some balsamic and olive oil drizzled over the top. Annoyingly, they had actually stapled my order to the dining card and then thrown it away because I had to ask for it back, and it was filthy with holes in it--I've never had the experience where a waiter hasn't just given the card back without asking. But the real problem was that I was ill within five minutes of finishing the meal. I was sick for several hours, and I'm still feeling really sluggish today as well and my stomach is still off.

Though this restaurant claimed to be accomodating, they clearly had no idea about how to cater to gluten free needs. My confidence was so high because I hadn't had a single problem eating gluten free for the entire weekend, but I was sorely disappointed by this meal. There weren't many things on the brunch menu that could even be converted to gluten free meals, so I hoped that the salad would be ok. Obviously I was wrong. The truly unfortunate thing was that there were very few restrooms around, so it made that part of the illness very difficult to deal with, but the nausea, exhaustion, and all the other symptoms were just overwhelming. It's been a long time since I've experienced a glutening of this magnitude.

My costs went up as well. My boyfriend and I spend about $125 per week on groceries--sometimes less, sometimes more, but that's what we've budgeted. I try not to buy too many of the specialty items, but I'd rather spend some money on specialty items than go somewhere with other people and feel deprived when I see them eating things that I can't have. I also make as many naturally gluten free dishes as possible and then eat the leftovers as well--we actually spend more, though, on leaner meats, lamb, etc (we splurge to avoid dinnertime monotony). I basically transferred my entire eating out budget to the grocery budget, so if I do eat out it is a special circumstance that comes from my personal weekly money, which I'm not as willing to part with. The great thing is that not wanting to spend money on going out to eat also saves me from potential cc nightmares.

Thanks for all of the kind words. I know this student feels really isolated right now, so the prayers are much needed. I've definitely given this student more attention and more "breaks" in terms of the work that I've asked her to do, but she genuinely deserves it.

Karen, I also had an instructor who changed my life very early on. None of my teachers ever knew I could speak before I got a perfect score on the California achievement test. The teacher running the gifted program literally came to my house and had coffee with my mother when my mom refused to answer letters inviting me to the program. I went from a shy, introverted person who wouldn't speak in front of others to a confident student, happy to present my ideas publicly--in a lot of ways, I became a teacher because this person was able to bring this side out in me, and I'd like to help other students in return. My mom was so moved by this woman's influence on my life that she actually went to work for her on this gifted program.

The unfortunate thing is that this student is someone who had realized her potential, but then it all fell apart because of something that happened to her. I truly hope she can overcome this--I've told her that I'm confident that she will, but it would be so easy for her to fall into the patterns of her home environment.

In the spring semester my star student stopped coming to class and turning in assignments. I contacted her to see if she was ok, and she came into the office to speak with me about her performance in the class. We, as university instructors, are not supposed to speak to students about their personal lives in almost any capacity--because of issues of legal liability. Nevertheless, this student, embarassed about her performance, knowing that I had reached out to her, told me that she had suffered a particularly horrendous trauma. It was crushing for me to hear her story, and I did not, by any means, press her to tell me anything about her personal life. At first, I gave her the standard line about the need to seek psychological counseling, which could be provided through the university (i.e. what we are told to say in these situations). Nevertheless, being a human being, I simply could not help but try my best to comfort her and encourage her--I looked at her and saw myself as a junior in college and just thought about what I'd want to hear from someone who was willing to listen.

Eventually, she could not hold it together enough to attend class at all, and I offered to defer her grade, giving her the maximum amount of time to make up the work she'd missed (something that I've only done on one other occasion). Though she didn't complete two minor assignments, she produced "A" work on the final project and she handed it in to me on the last possible day (yesterday). She also thanked me, via email, for being understanding and said that she was seeking treatment but that it wasn't working, so she was just going to try to push through the rest of college before seeking more in-depth treatment options. In response, I was as encouraging as possible, and I told her to feel free to contact me in the future.

I understand why universities have these rules in place--personnel completely untrained in counseling should not be trying to diagnose/advise students in crisis--they need professionals for that. At the same time, it just breaks my heart to see this excellent student with so much potential suffering in this way. I know from previous conversations that she comes from the inner city and is supporting herself through college both financially and emotionally. I guess I just feel powerless in this situation. If any of you pray, "Sarah" could sure use some divine assistance right now.

I really like the idea of getting them something that they already wanted but personalizing it too. I know that they both love massages, and despite the fact that my brother argues to the contrary, he's just as much of a romantic as the bride. I think I will include some nice goodies for them along with the other gift, either for the honeymoon or directly afterwards.

Mazel Tov!

I've not eaten at Red Lobster since diagnosis, and I don't plan to either, but another suggestion: I've brought a small disposable container of sour cream to a restaurant where I want a baked potato. It's just easier for me to feel that I'm getting the potato I want without playing Russian roulette with my health. In addition, as broncobux says, salad are often mixed in big metal bowls that have dressing bits and croutons all over them--I try to avoid salads or specifically ask that they be mixed in a clean bowl. I've also brought packets of gluten free dressing with me to the restaurant--of course you've got to plan ahead, but, unfortunately, we have to plan our meals often long before our non-celiac friends do.

Where on earth did you find gold boots? or did you paint them?

Thanks for the suggestions. That's funny...I'd actually thought of Cleopatra and Anne Boleyn, but I hadn't really gotten any further than that. These are some great suggestions. Marie Antoinette is bound to be popular this year because of the Kirsten Dunst movie coming out--I actually saw it in Paris this May; it was totally wretched but thoroughly entertaining. I don't think the French were too impressed with it.

I think Jem is a great idea--I used to have a Jem doll with light up earrings when I was little. One more suggestion--my favorite costume (one that I've actually worn twice) has been easy to do--I've been Audrey Hepburn's character, Holly Golightly, from Breakfast at Tiffany's. I just put my hair in an up-do, got a small tiara, wore a long black dress and some big shiny costume jewelry with large black sun glasses and opera gloves. Then I made a makeshift long cigarette holder. People always recognize it instantly and comment on the movie.

I'd actually like some advice on costume as well for a theme party. This year the theme of my department's grad student party is "Only the Good Die Young," so you are supposed to come dressed as someone famous who met a tragic, early end--I know it's a bit disturbing, but not any more than last year's theme (childhood fears). It's an English department, so they can never have a simple theme.

I really integrated everyone's ideas when I tried out my first batch of gluten-free meatballs, but I did had some Perky's Nutty Rice cereal that I didn't really like, and I didn't have gluten-free bread on hand, so I decided to smash up the Nutty Rice as the binder, and it turned out really really well. The meatballs were delicious! Thanks for all of your help everyone. I'm sure that they'll come out even better when I use gluten-free breadcrumbs, but this was a great first start.

Kathy,

I'm glad that you had such a positive experience. I've eaten at the Cheesecake factory in the Aventura mall a few times, and though I've never been glutened there, I haven't the experience you've described. Did you ask for the manager before sitting down?

I'll be staying with a friend next weekend on the 400 block of West 44th Street. I've looked into the archives here and found great info about restaurant through the Gluten Free Restaurant Awareness Program and CeliacChicks.com, so I know about Risotteria and a few other places, but I was wondering if anyone knows of anything good near that part of town. I'm also going to be arriving and leaving the city from 153 Lafayette downtown, so if you know of a good place to get a bite before shipping off on a 5 hour bus ride, I'd be much obliged. Thanks!