hsd1203

try san-j soy sauce, one type of it says wheat free right on the bottle and is really good. (or it was, before I gave up soy

hi! I'm a Heather Ann too.

My face used to be all red and irritated around my nose and mouth all the time, but it went away after I stopped eating casein and soy (as well as gluten of course). Just my 2c. Be really careful about what you're putting on your face. I basically just use cetaphil and it is pretty much the only thing that is mild enough not to cause any issues.

a couple of ideas,

one could be the tea (watch out for starbuck's tazo teas, too, as most of them are "contaminated" according to their company)

two, one time I ate at PF Changs I did get a stray noodle in my non-noodle dish. Could've been a wheat noodle, could've been a rice noodle, I don't know... but I do know I got sick (see #3). The company says that they have guidelines to prevent cross-contamination, but I have to say this made me a little wary.

three, I thought that I was getting cross-contaminated too for a while until i figured out that I am sensitive to soy as well and that for me it is VERY similar to my gluten reaction.

best wishes on figuring this one out and staying healthy

unfortunately this may be out of your hands as I know several people who have been turned down from the peace corps due to medical reasons (one orthopedic, one mental health). I would see if you could check with them and see if it is on their list of exclusions, just to be on the safe side to gove yourself time to make alternate plans for your life if necessary. I'm sure there are similar options out there if you get turned down for this. best of luck.

if you're one for baking, Bette Hagman has an amazing vinegar pie crust recipe in her "comfort foods" book, just be careful to use soy free shortening b/c most have soy. (this book has all sorts of other yummy things, too). Trust me, the recipe is worth the trouble, it is super yummy.

I haven't really found a good premade pie crust and mixes without soy can be tricky to find.

if your doctor thinks that temporary meds might help, though, there are some old-style drug stores out there that will mix your meds for you... aka you can have anti-anxiety drugs made for you without corn (just so you know this is an option).

also, there are internet drug stores that will do this too.

Gluten daoen't give me headaches, but casein and soy especially sure do! THe second one is a little tough b/c soy is in EVERYTHING, but not feeling like my head is in a vice is worth the extra label reading.

Just my experience.

nuts have no casein, but careful with anything pre-made that isn't even something you'd consider to be "dairy" lots of margarines and dairy-free cheeses have casein as an ingredient, and they even add it to white wine sometimes (yikes).

Soo... always read the label! Living without magazine has a really good page in every issue (comes out 4 times a year I think) that lists all the things that casein hides as... although I'm sure you could find a list like it somewhere on line too. And bring it to the store with you so you're not standing there scratching your head trying to remember the 50 things you can't have!

If you're really missing yogurt (and not soy sensitive) they do have a soy yogurt. I personally never really liked it even back when I could eat soy... but might be worth a try... everyone has different tastes

You will learn and this does get easier, promise!!!

I really like cetaphil cleanser for my face and have had no problems with it. And for bath soaps I splurge and buy locally made ones with just oils and stuff like that in them. Still looking for a good body moisturizer, though.

Also, if you really want a salon style gluten-free shampoo/conditioner, I use Kenra (I read every last stinkin' shampoo and conditioner bottle in ULTA one day). I have found it helps for me to alternate between that and fructis, I'd hate to become sensitive to one of those.

Laurie, first of all welcome! Next, do a search (look in the blue box right above the postings) on maui and about half a dozen posts down you'll find a long one from me and another from manabbe with a whole bunch of good food info for maui.

Have fun!!! Heather

first of all, what a lucky girl to have someone like you to help take care of her right now, and to have had a doctor who was on the ball. next...

this is a HUGE adjustment, give her some time, expect to have to pick up some of the slack in the relationship right now, including being the one who chooses what's for dinner. bring tissues to the grocery store and out to eat, but also expect lightbulb type positive moments about this from her at random times. know that most likely things will get better once she feels better, but will go in cycles, especially if this diagnosis is out of the blue for her. I grew up with a celiac mom and always knew I could end up with this and am still struggling with the whole thing after about 4 months gluten-free. it is a process.

also, although I always thought I pretty much knew how much it would stink to have this (sympathizing with my mom), once I was diagnosed, I realized what I thought was nothing compared to how much it actually does stink to have this. it has a huge impact on the way you think about a great many everyday things (as I'm sure you're starting to realize) and while totally do-able, can seem oevrwhelming at times (especially to someone who is still feeling icky or has just screwed up... intentionally or accidentally). that said, hopefully soon she'll start feeling so much better that she'll realize that the extra effort of a gluten-free diet / lifestyle really is worth it.

good luck, best wishes, and happy gluten-free baking

Jen,

Don't know when you were diagnosed but if it was recent, you might want to just try cutting way back on anything high fat for a while... difficulty with nuts was something I had increasing problems with before going gluten-free (those pb+j sandwiches were sure making me ill) and I am just now (months later) able to eat a couple of nuts once every few days without getting queasy (same goes for other high fat foods). So my suggestion would be to take it slow and stay low fat for a bit.

Just a thought, Heather

Okay, just got back from Maui and here's what I have to share. Sorry it is so long but I learned a bunch (and couldn't resist including some non-food info)

Right outside of the airport:

McDonalds, of course, and a Super Kmart where food is supposedly pretty cheap (didn't make it there to check it out, though). Be glad you rented a car with good mileage 'cause gas is 2.50 a gallon here.

In or near Wailea:

Hawaiian Moons Natural Food store (theres one on S. Kihei road... and there may be more than one on the island, check the phone book) has a few yummy gluten-free things... including some limited gluten-free cereals (hot), pastas, and even brownie mix if you're feeling so inclined.

Outback steakhouse between 31 and S. Kihei road, on Pi' ikea. There is also a decent safeway foods on this road (and another Outback at 4405 Honoapiilani Hwy #218 Kahana )

Harry's sushi near the grand wailea was excellent, if you don't mind double checking with the waitstaff about the fancy kinds (some of the fancier ones came with some kind of sauce drizzled on top, just a warning) and if you're ok with having the whole experience sans soy sauce, no gluten-free choices for that here.

Some of the beaches near here were amazing, check a lonely planet or a maui revealed for the ones the locals go to.

On the way to Hana (such a beautiful trip... take your time exploring):

Mana Foods in Pai'a. Take a right at the stoplight and it will be a little ways down on your left. gluten-free breads in the coolers, and what looked like a decent selection of health foods and the like (didn't go till my last day but would be worth stopping for anyone at the beginning of their trip).

Also, the guidebooks suggest picking up a picnic lunch in Pai'a (supposedly the food in Hana leaves a little to be desired) also, this way you can eat wherever you get hungry, instead of rushing to Hana when your tummy starts grumbling. There are a bunch of options for lunch there, but we went to a place called the Maui Grown Market (on the left in the middle of Pai'a... if they're closed in the am they have another location about 8 mi... I think, but it will say on the door... up the road on the right). The woman who made my salad for the day was totally unsurprised by the "wheat allergy" thing, and was happy to discuss ingredients, make suggestions, and let me read the ingredients on the salad dressing bottles. They'll let you borrow a cooler and a Hana tape or celiac disease for a deposit, and even have dogs you can borrow for the day if you're missing yours at home. So funny.

Also in Paia... some yoga, some really neat craft and souvenir stores (with stuff we didn't see elsewhere) and a huge really cool bead store (random, I know, but a fun surprise for me).

In Old Lahina:

We went to Kimos, and my waitress was great. She got me a plain salad (dinner usually comes with a premade caesar)... now that I think about it you might want to ask for plain rice (it comes seasoned), and helped me through which fish choices were safe. Super helpful. Beautiful place to eat while watching the sunset and having a fruity drink.

Get there early enough to see the museums and such... we went late in the afternoon and missed out on some interesting things. Also not a bad idea use the afternoon to stake out a place to talk to waitstaff/chefs and make dinner reservations, especially if you don't want to get stuck eating in the bar or waiting until 9 to have dinner.

Overall, almost everyone was super helpful, the island was just so beautiful, and I ate well (hooray first gluten-free major vacation). Do stock up on snack bars before leaving home, just in case. No one gave me any trouble about carrying them, and they came in handy the morning of a snorkeling trip (pacific whale company does a pretty great eco-conscious job with interesting tutorials on what you're seeing and even some games for the kids while you're on the boat) where breakfast was muffins, and whenever my travel buddies stopped for pastries and such. All in all, though, just have fun. If you're staying in a place with a kitchen or a grill, buy your own and cook it. Those were some of the best dinners we had (the super expensive restraunts were a little out of the budget, and like any place where the tourists are trapped, some places are sadly lacking some of the incentive to make really good food, but read your guidebooks, because there are a few good ones).

Aloha and mahalo (thank you) for reading all this,

Heather

Kelly,

Do a google search for edema and malabsorption (also try hypoalbuminemia and malnutrition) and you'll get all sorts of sites with explanations on how celiac (if this is what you have) could cause edema.

Basically, if you're not getting enough protein, either taking it in (think of what starving little kids look like) or absorbing it (celiac), your blood can't hold water so it leaks into other tissues. Also note in these articles that you can be normal weight and be protein deficient.

Happy reading!

Heather

Kelly (and others with GI suspect kids),

Not to make your life more complicated than it has to be, but thought I would pass along a related personal story just 'cause I hope it might help someone.

I was tested (biopsy) when I was 6 (some minor tummy troubles, really bad temper, never slept, etc. sound familiar?), and it was negative. So of course I and my family assumed I was out of the woods for good.

Until, that is, about 20 years later when I was finally so sick I couldn't see straight. I cried at absolutely everything, picked fights with my husband, couldn't remember anything I studied for school, thought life was horrible, had no energy, got hypoglycemic and super grumpy (and that's putting it politely) if I hadn't eaten in the last 5 minutes, etc, etc. Trouble is, in retrospect, these symptoms had probably been building for years (even with minimal GI trouble) but noone in my family, including me, really suspected celiac as the culprit, since I'd been negative before. Finally it sunk in that this might be ceilac anyway. A week into a gluten-free diet, I felt better. A few months into it, I literally feel like a new person, I am so much better able to function.

So, the moral of the story is... even if your kids test negative now, you don't have to watch them like a hawk, but please keep this somewhere in the back of your mind for the future.

Heather

Christine,

Don't know how you feel about mixes but my favorite for super easy muffins is the gluten free pantry muffin and scone mix. (at www.gluten free.com). You can get a cookbook (not sure if they sell it or it comes with the muffins, but I have one from somewhere) of all the different add ins and such and in what proportions. It is super versatile and can make corn, fruit (including morning glory ones with all sorts of yummy fruits and nuts and stuff piled in - my favorite), and even peanut butter chocolate chip (my mom's favorite). Some of the recipes in the book even have low fat versions.

Best wishes,

Heather

Good call Judy, I also like the Bob's Red Mill "homemeade wonderful gluten-free bread mix" it tastes great and will even come out well in a bread machine. It is made with garbanzo flour, potato starch, corn starch, sorghum flour, tapioca flour, fava flour, and potato flour... and it even comes with its own xanthan gum and yeast! I take a bag or two with me when I'm travelling to stay at someone's house where I know all these fun flours won't be available. Makes life a lot easier! You can make it with cow or soy milk or water, my family and I have tried it all 3 ways and it comes out great and (as we accidentally found out) it is great lumped onto cookie sheets and baked as rolls too. Yay Bob!

Also, on the same vein, Bette's sesame bean bread is pretty stinkin' yummy too. A gluten-free friend and I ate, ahem, half a loaf of this (oops ) in an afternoon while cooking (something else I recommend for single-living gluten-free people, if you have a gluten-free friend or even an adventurous non-gluten-free friend who's into healthy eating, have a cooking afternoon once a week or 2 weeks and make a ton of food together and freeze it so you have dinners / lunches for the next week or 2... it saves a ton of time and money, and helps fend off bad take out decisions).

Happy bread eating (speaking of which, I'm getting kinda hungry)

Heather

I kind of feel as though I'm walking into a lions den here, but I thought I would step in with the medstudent point of view. I have to admit that they probably didn't spend more than 30 minutes on celiac during my gastro course this year... however... if you think about how many diseases there are out there and the fact that we have only 4 years to learn all of them (and only 2 of those are in a classroom) then you have to figure that it is getting its fair share of lecture time.

For better or worse, it is the doctors who are in hospitals now who teach the medical students which of the 6 million diseases we learn about in lecture actually exist in real patients in the clinics. And since many of them never learned about celiac, we don't get to see their celiac patients because they don't think they have any.

This is not a defense, but I just thought I would say a little something about the way medical training works. It makes for slow change, but with all the new research out about celiac disease and with patients being more proactive, it pushes it further into the forefront for docs who can then share with their students.

Now my medical school class, with 2 gluten intolerant classmates, are all getting a firsthand education about this, which is great! And several of my classmates have asked for personal tutorials on my symptoms and other ways the disease can present so they can learn how not to miss it in their patients. In short, we really do care about learning as much as we can to help people. Promise. And while there is no way to get back the many years that too many people have lost, there is hope that it will get better.

Heather

Guess the old "misery loves company" is true sometimes, but thanks for starting this thread as it makes me feel better that I was almost in tears at the grocery store tonight at all the things that looked yummy but I couldn't have... the worst are the foods that there is really no reason to put wheat in them but the companies feel the need to throw a handful in anyway (like my pre-celiac favorite kind of potato chips, for goodness sake) .

But on a happier note, I came home to find my (celiac) mommy had sent me super yummy gluten-free macaroons in the mail. Such a nice surprise and made me feel sooo much better.

So best wishes to everyone and hooray for the help this message board gives in keeping our chins up.

kati, unfortunately, semolina, spelt, kamut, club, durum, bulgur, and einkorn are just some of the names wheat can come under... so sorry, no couscous.

but maybe you could try some brown rice... it is tastier (and healthier) than the white stuff and has a more couscous-ish texture to it. and can be mixed with a lot of the same stuff you would put in a couscous dish.

also there is a really yummy breakfast cereal out there that is gluten-free and couscous-esque (ie you could definately eat it for meals other than breakfast), it is called bob's red mill mighty tasty gluten-free hot cereal and is made from rice, corn, sorghum, and buckwheat (which, confusingly enough, is not related to wheat and is gluten-free)

hope this helps!

yay Laurie! Thanks so much for passing that along... I am heading to Maui in early April as well, but was getting frustrated as I had not been having any luck trying to find places to shop for food or eat out there. This info is sure to make for a better trip. I promise to pass along any extra info as well when I get back.

Aloha, Heather

Hi... this is my first post here but I wanted to write and say that you are definately not alone in feeling depressed. This was one of the major symptoms (in addition to worsening stomach problems) that made me finally try the diet in the first place (I have some family history of celiac, so I thought it would be worth an attempt). Now a few months into it I can't even believe the difference it has made in my mood / ability to deal with the world. I have to say too, that even minor accidental ingestion does have a large impact on my mood, and this, more than the stomach problems, helps keep me on track with the diet.

So be kind to yourself in this difficult time, know you're not alone, and try to learn all you can, as it will only help you be as healthy as you can be. And (advice worth repeating from my gluten-free mom) do your best to be patient, keep in mind as well that just like you didn't get sick overnight, it takes time to heal as well and most people keep getting a little better every day for many months into the process. Best wishes.