NicoleAJ

Thanks for all of the responses--I hadn't found any definitive answers on the topic, so I assumed that this was a sort of gray area.

I honestly don't know the answer to this question, and I don't mean to anger anyone with this question--I'm just genuinely curious about the legal definitions and ramifications of our disease. When potential employers ask you to check off boxes about your minority or disability status, what do you do? Technically, unless we have other complications, we are all vibrant, able-bodied, functioning members of society, but the effects of gluten contamination can be both temporarily debilitating and pose long-range problems for our health. In some jobs it's completely easy to maintain a gluten free lifestyle, but in others, it is very difficult to have access to the foods that we need to remain healthy, and things would be a lot easier if our employers made *reasonable* efforts that would help us to assure our own safety in terms of food.

I had one strange encounter with the supposed trendiness of the gluten free lifestyle. I was at a friend's house, and everyone was eating cookies. An acquaintance offered one to me and I said no thanks, and, strangely, she continued to try to push it on me like a street hustler (i.e. "all the cool kids are doing it"). Finally, I just said, "I can't eat gluten," and she responds, "oh, yeah, I try not to eat gluten, but sometimes you just need to indulge." This is a person whose gone back and forth between being vegetarian, vegan, macrobiotic food only, etc, and the way she spoke about it, she made gluten seem like an ethical issue rather than a medical one--I can't possibly think of why anyone would be politically opposed to gluten. It made no sense to me--I think she just saw the word in nature food stores and believed it had to be some sort of cause, like "save the rainforests" or something. As if gluten is this pernicious critter going around and strangling the endangered animals rather than a protein that poses a threat to people with celiac disease. What the heck?

As far as the "intolerance" issue, I know that it is correct to describe it as an intolerance rather than an allergy, but I think that people don't really take the word intolerance seriously, thinking that a little bit is ok. I always just say I have celiac disease and then explain what I can't have. People never know what that is, but when they hear the word "disease," they immediately believe it's serious. I've had a few waiters and waitresses look at me like I've got six months to live, but I'd rather have that happen and have them take me seriously than having them think I'm on the latest fad diet. I think that people who are not on those diets resent them and think they're silly, so they are less likely to regard the seriousness of our dietary restrictions.

Make sure you ask about how the sushi rice is prepared. Some places prepare the rice with rice vinegar that has been brewed with alcohol--you just have to check if they use the vinegar because it might not be ok.

Personally I always avoid the salad, partially because the only dressing I'd really like to eat--the tomato viniagrette--is not gluten free. I find that they're always willing to do substitutions, so when I get the sirloin; instead of getting salad and a side, I get two sides--steamed veggies without seasoning and a potato with sour cream and butter.

By the way, does anyone know if the bacon they use on the potatoes (for loaded baked potatoes) is gluten free?

Back by popular demand, I made this cake again. This time I was sure to whip the eggs for 8 minutes, which made it really light and moussy--even better than it was the first time. It sunk a little in the middle, but oh well--it tastes delicious. Try this addition.

Ingredients

2 pagkages of 12 oz frozen raspberries

2/3 cups sugar

1/4 cup water

Bring ingredients to a slow boil, stirring frequently. Puree and then strain out the seeds. Serving this hot over or next to the cake is unreal!

I got a great response from Cointreau, if you want to jazz up your margaritas with something other than triple sec or Grand Marnier.

Dear Nicole,

We greatly thank you for your interest in Cointreau liqueur.

We are pleased to inform you that Cointreau does not contain any gluten.

Cointreau does not contain either any wheat, oat, rye or barley (or tannines, yeast or corn or nut).

You are free to enjoy Cointreau !

Cointreau is a crystal-clear liqueur with a 40% alcohol content which is made from the distillation of sweet and bitter orange peels, blended with natural alcohol, sugar and water, all selected for their absolute purity and neutrality of taste. It has been enjoyed by millions of people worldwide for well over a century, and is firmly established as a stylish drink for different occasions.

Find your favorite drink and discover how Cointreauversial you are on www.cointreauversial.com. And feel free to contact us with any questions you may have by clicking on the link below.

Yours sincerely,

Chantal Breuil

Cointreau Consumer Service

If you want to answer directly please use this link :

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Oh my goodness! Thanks for telling us. I wondered why they had been taken from the shelves for quite some time, but when they did return the ingredients list was the same, and they did not have that card displayed at the WF I went to--I have been feeling sick quite a bit lately--I guess this solves it. Thanks again.

Some of you have mentioned prescription foods in the UK--how do you obtain these? I'm curious--I wish we had these in the states.

I'm an American, and I'll likely be visiting Oxford and Leeds this summer for a few months. If anyone has any recommendations for restaurants or grocers, I'd really appreciate it. Thanks!

Nicole

Since Grand Marnier is derived from cognac, I figured that it would probably be gluten free, but I noticed online that the part that comes from oranges is distilled before the brandy and cognac is added, but I contacted them today about whether it is gluten-free and if there are any potential issues with cc in their production, and this was the response.

"You can rest assured as Grand Marnier products are certified Gluten free."

Best regards,

Gilles Coury

Internet Director

www.grand-marnier.com

I'm going to make some sangria with this--if it turns out well, I'll post the recipe.

I actually just called Arm and Hammer today about their detergents and got quite an equivocal answer--they cannot guarantee that their detergents are gluten free, so I switched to Purex Free and Clear because they were adamant that their detergent is completely gluten free. It may seem over the top to worry about detergent--I can't be certain that it causes a reaction, but I am a stomach sleeper, so who knows how many times I've inadvertently slobbered my pillow in the middle of the night.

Make sure you're careful with MAC--I had some problems with my shades. I had to donate them to friends and hear them rave about how great they were.

By the way, does anyone know about MAC studio fix powder or concealer--I've invested so much money in my MAC makeup that I'm afraid to call them to see if it contains wheat, but I really should find this out. I've started to worry when my boyfriend kisses my cheek and then kisses me--what if I'm getting glutened from the makeup?

I have a similar response--I wouldn't say that I get actual clinical depression (i.e. tell-tale symptoms that last for over two weeks), but I do get very emotional--sometimes weepy, sometimes very angry. I've tried to work on the anger lately because I still want people to like me when I emerge from my emotional gluten-induced haze, but, at the same time, I don't want to turn that anger inward.

I was doing so well not getting glutened for a while, but I've been on several business trips where I've been unavoidably at the mercy of people bussers, waitresses, linecooks and other people who don't understand the subtleties of cross contamination. I finally just had to stop eating meals with the groups and go back to a hotel room full of food from Whole Foods. I just try as much as possible to focus on other things that are more important and then I try to reward myself when I do well. It's never fun to deal with the physical or mental side effects of gluten contamination.

Well, you never know whether or not there will be enough people unless you try. You could always leave a posting on a community board or newsletter for the local hospital, at the local grocery store, and you could take out a small classified ad in the local newspaper. This sounds like a great idea, and maybe when I have a bit more time on my hands I'll try to start one in my area--let us know how it all works out.

It will get better as long as you're 100% gluten free. Your body will take a lot of time to heal (it's different for everyone), but symptoms will slowly go away over time as long as you're committed to the diet. When I first went gluten free I still had some symptoms because I hadn't made calls to all of the manufacturers of foods I was eating and I didn't do enough to separate my own utensils from gluten-containing ones. You'll get the hang of it though and then the gas will begin to go away--just be patient and know that the lifestyle change is difficult but it is working towards making you feel much more energetic and alive--you'll never believe that you were able to tolerate all of the suffering you endured before your diagnosis.

Congratulations! This is really exciting news. I've actually thought about this issue quite a bit since my boyfriend and I have been talking about getting engaged sooner rather than later. I have no idea where I'd find a bakery to do an entirely gluten free cake, so I like ChelsE and jkmunchkin's ideas quite a bit.

odcdinah, if you're not really symptomatic, it might be nice to indulge in a few bites of cake, but take into consideration that once you've been off of gluten, your symptoms will become much worse if you have any gluten at all. This past weekend there was a crumb of pastry floating in my tea at a professional conference, and I didn't notice it until I was half way finished. Of course I stopped drinking as soon as I saw it, but I was violently ill for the entire day and have not felt healthy ever since. Even if you take imodium beforehand to prevent the D, you could still experience extreme fatigue, nausea, brain fog, gas, etc at your wedding and throughout your honeymoon. If you are an asymptomatic celiac and totally attached to the idea of eating a bite of wedding cake, you should test it out beforehand to see what your reaction will be. It's not really a matter of being a purist but, instead, of being a realist--you wouldn't want to ruin your "once in a lifetime" moment with extreme illness.

Yes, Planter's are fine (unless you get into the fancy schmanzy ones as tiredofdoctors and tiffjake mentioned)--I've been eating them since my diagnosis. In fact, I make my own trail mix with Planter's heart healthy mix, unsalted cashews, craisins (also gluten free), raisins, and dried apricots (right now I can't remember the brand I use, but you do have to read carefully and call). I'll try to check on my brand and get back to you. The only thing that you really have to watch out for is never to buy trail mix out of those bins at the grocery store--huge possibility for cross contamination, especially if there are limited scoops. In fact, a lot of standard trailmixes will say that they are processed in the same facility as wheat since some of their varieties include weird things like cheese balls or little cracker-type sticks. Actually, making your own trailmix works better because you can choose what you want, and you may need to spend $15 on it all initially, but you'll have a healthy and energy-boosting snack everyday for almost a month.

I also had a capsule endoscopy done. My insurance covered mine because I had already had a few colonoscopies and an upper endoscopy and they just couldn't get to the parts that they wanted to see most with these tests. My insurance covered it for this reason--as a last resort. The only thing that I didn't like about it is that my doctor only kept the pack on for 5 hours or so, so they didn't get to see my entire digestive system (leading to inconclusive results). In addition, if you go through an Xray or strong metal detector while its in your system, the capsule could burn your innards--so don't plan Xrays or flights for the day or so after your procedure.

Tanya,

You are a lifesaver! I'm traveling to Paris on May 24th, and like you, I've done all of the research with dining cards, french lycos search, gluten free travel, you name it, but I've still been nervous about my visit. I would really really appreciate any insights you might have into restaurants, stores, etc. I'll be staying in a Hilton about 20 minutes outside of the city center, but I'll be spending most of my time around the city. Here's my email address if you have any advice that you don't post: naj121@psu.edu

Nicole

Laura,

I'm a grad student at Penn State--I saw your post about Penn State and added to it a few weeks ago. If you need any advice about State College for when you return for football games, just let me know. But also, if you have any advice about where you usually go in State College, please share--I usually limit myself to the same 5 or 6 places, so I'd love to hear about more.

Ruth,

If you go to Georgetown, they have a Chipotle, and many things there are gluten free--the list can be found on the website. As always, though, you need to ask them to change gloves and you need to be aware that the spoons may have touched the flour wraps and could make you sick. I had a great experience the first time I went to Chipotle in Georgetown and an aweful one the second time I went.

One thing you may want to consider doing for lunch is to simply go back to the hotel and have a fridge stocked with microwaveable gluten free foods, or a lot of grocers in the D.C. area sell Boar's Head coldcuts. I've gone into stores and bought some Boar's Head turkey and cheese and made little roll ups of turkey and cheese, gotten a bag of carrot sticks and a jar of olives, and it makes a very nice lunch. Just a thought.

Also, my French is pretty bad so I had some difficulty finding it again, but here are some stores in France that sell gluten free products.

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I found this link, which I think is really helpful--its just like our lists of foods we can eat and cannot eat, except its in french, so if you see the forbidden things (in the right column) on menus or product labels, then you'll know to steer clear of them.

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I'm going to Paris next month, so if anyone sees any good info that's not already listed on the boards, please let me know.

A fruit plate is a good idea--I hadn't really thougt of that before.

No I certainly didn't go back to that lousy restaurant--if I could remember the name right now, I'd add it. I've tried to repress the memory, but I'm sure my boyfriend would know. He was definitely thinking more clearly than I was at the time.