This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
InterestsI happily accept the fact I'm an odd bird. Interests range from gardening to firedancing - I can climb a tree in a corset, and have been known to do so in order to find a good nest to curl up and read a book. My husband is a geek, I'm a nerd, and we are learning how to blend our lives - think neo-techno-elven.
You might not be able to see it, but you are all making me blush a bit here.
The writing thing... I'm working on it actually. Starting a new website that should finally get off the ground on Monday (not going to put the link here - I don't want to annoy the powers that be . If someone really DOES want to read more of my babblings, drop me a line and I'll email you the address.) and slowly getting things pulled together to see if all the random writing I've done all my life, and the time put in as editor for other writers works out to making a quiet go of it.
But honestly, it sounds like I've actually gotten off lucky in a lot of ways. It's my mother in law that is the issue - a pretty standard position for antagonistic stances. My own family (parents, my husband, my brother and his family) have been incredibly supportive (helped by how MANY folks in both my immediate and extended family have bother allergies and celiac) over food and food safety. Even my friends have been really great - the general (and very sweet) consensus amongst them was "If anyone can make it tasty - it's you!" The first week after my biopsy, I even had 3 couples over for dinner - all champing at the bit to try the "new" foods out. A few nits at my husband's job, a few irritations, but really, nothing but support from the core people in my life. My mother in law? I knew she was nutters when I met her - so I can't be too shocked when she acts true to type.
I don't know if I could have managed if my MOM had acted like that. I don't think it would have broken me (I'm a rather tough bird) but it would have been one heck of a body blow. Same with people I had viewed as close friends - that kind of ignorance and outright nastiness... that just makes my stomach clench to even think about!
There are some VERY strong folks on this board to manage dealing with people like THAT in their lives!
It's a simple enough answer, hon. At least in my case.
My mother in law is absolutely, 100%, completely cracked.
It started, I think, simply from the sad fact she is also quite possibly the stupidest person wandering the planet (not being a b... brat here. That is her son's view. She is addicted to prescription pain killers since the age of 22 and it's addled the brain pan more than a tad. Now in her late 60's, this 4 foot 6 inches tall woman uses enough oxy, darvacet, and duragesic pain patches to fell a water buffalo on a daily basis.).
She likes shrimp - ergo, everyone on the planet must like shrimp. And if they refrain... well. They are just being silly. The first year of dating my husband was filled with meals where she would try to shove one into my mouth, drop one onto my plate, etc... all the while insisting "Just try one. Why be so difficult?" She really honestly could not GRASP it would kill me. She "forgot".
After a year of dating though... it got more intense. I think because she was finally realizing, I wasn't going to go away. My (now) husband had taken over the role of caregiver to his two rather.... self absorbed parents from a young age (he is an only child and adopted) - even to the extent of paying for a large portion of their home. Her belief that he was going to be her whipping boy for eternity was... starting to shake. From there - DEMANDS of weekly (I got it finally DOWN to weekly. The woman has never cooked a day in her life, and before I came along, they all trooped out to eat 3-5x a week.) "family" meals became the nagging norm.
All at seafood restaurants.
I was okay for a while, but the bad thing with shellfish allergies... there comes a tipping point where your body goes from "this is gonna SUCK for a bit." to "No. No more. Game over." Her son had just explained (as I rushed to the bathroom to down an entire bottle of children's benedryl because the whole breathing thing was becoming a serious issue) that we could no longer attend these meals. Too dangerous for me, if she wanted to see us, it was going to have to be somewhere else. It wasn't enough to just not order shellfish at Red Lobster, the fact it was all cooked on the same grills, in the same pans, with thousands of pounds of shellfish each week aerosolizing into the air was making just walking INTO the restaurant dangerous. I'd go red, start to itch, and breathing would become a real issue if I stayed too long.
15 minutes later, when I was out in the bathroom again - she pulled the shrimp trick. She claims it was to prove I wasn't allergic... the emergency bolt to the ER with my husband proved otherwise.
It's not so bad these days - and we have drastically cut back contact (her recent bout with cancer sadly dragged us back in for a while) and my husband stands firmly by me. The resulting battle of "I have no problem having you charged with attempted murder you self-centered psycho she beast" shocked her into quietness, at least for a bit.
Ultimately - I know not to trust her. I know how to manage her. And I have my husband backing me up. Added light spot is the fact every member of her family - her own husband on to her sister - have all said regarding the future and any kids we might have "Oh, of course you can never leave them around her. That would be deadly!" So I won't have to fight that battle alone when/if the time comes.
On the other hand... maybe I'll luck out and she'll just die before that happens. (Yeah. I know. Harsh. But after 7 years... heartfelt too.)
Sorry about the novel... it's a thing I've been dealing with for a while (my husband can never never EVER think I don't truly love him. I knew his mom was this crazy and I STILL married him. Granted... I made him show me his adoption papers first - because those genes just need to STOP.) and it can be a bit.... itchy to talk about. On the upside... beyond stunned horror and a serious desire to do the woman harm, my mom has been taken out to eat for years by her friends for stories of this nutjob. No one really believes... and than they meet her. In the abstract, it can be entertaining as hell. I figure one day I'll write one heck of a book about this!
I can't speak to their tastiness - but there are quite a few gluten-free beers out there now (didn't like it before I was diagnosed, and happily use the "Oh, sorry, can't alas because of the celiac" excuse when it's waved about now ) if you are needing a quick tipple on the weekends.
Hard ciders are lovely, and if the fruit malt drinks were your vice before you can come rather close with a shot of schnapps or flavored vodka mixed with either fizzy water or a lemon lime soda.
You WILL be okay, honest. Lots of amazing things to eat - plenty you can even share with your coworkers. Promise. And the whole not feeling like hammered horse hooey is a definite perk too!
Gluten? Thus far not in my case. However, my mother-in-law got caught rubbing shellfish all over my plate one night while out at a restaurant (deathly allergic) "because she wanted to prove I was just trying to ruin her night out". So... yeah. I'm sure there could be some evil sons of biscuits out there who might try.
Just hoping no one here as any particularly evil family members.
Honestly? While I'm thrilled those days are gone (for the most part, the odd stomach bout still hits from time to time), and will be honest and say it certainly wasn't a fun way to have to live... it wasn't such a horrible thing either for me.
I have a WEIRD sense of humor, and come from a family who ALL have one serious health issue or another. After a while, I just learned to shrug it off and try to see the funny in it. There are some other health issues in my life, and I had to either learn early on to roll with it or give up. I don't do giving up real well.
It was hard. It was tiring. But I still managed to live a pretty (odd, granted) good life through it - and it taught me some serious adaptability skills! I'm pretty hard to shake now, and if the worse thing that happens is I make a fool of myself, well. Been there. Done that. Had to throw out the tshirt AND the pants!
There were parts of celiac before the diagnosis that were harder than others, some that nearly caused me to check myself out early. But the stomach issues? Not so bad, even at their worst. For example? Boy scouts look like unprepared flibbertigibbets compared to me. My purse/car/pantry are practical Aladdin's caves of readiness. Someone needs tp? Got it. Spare knickers? Size/cut preference? Advil? regular, extra strength, or generic? It's all worked out in the end, and like I said. It certainly wasn't something I'd WANT to have to deal with, but on the other side, it's made me who I am.
Which, granted, is a slightly off center odd bird, but hey. It works.
Now, in my case, this came LONG before the celiac diagnosis - but like many, I've spent my life developing some serious Potty-Fu skills. I'm the gal to ask where the bathroom is - even if I've never been in the building before. Desperation will point the way. (Weirdly, the longer I'm gluten free and feeling healthy, this skill is atrophying!)
I also, by 17 (30 now) had completely burned out any sense of embarrassment or shame in diving for random lumps of greenery if all failed. (If asked which is preferred - Wide leaves in an open field or hay in a private bush? I always say go for the big leaves, you don't HAVE to ever see that farmer again if you don't want to)
One day about 8 years ago, I was driving home from a long day of work and classes and had THAT moment. That... "Oh... crap!" knowledge that will tell a practiced soul they have 5 minutes to make some VERY serious and precise choices in their life.... or have the choices taken away anyway. And ruin your upholstery.
Busy town street. But no stores. Alllllll private homes. Not one with a soul...wait, wait! In the front yard of one was a tiny white haired old lady (if you read British mysteries, think Miss Marple) tending her lovely rose garden.
Into her life fell a squealing of tires and brakes, as my not too small backside dropped my car into her yard (no doubt tarnishing her golden years a tad. I'm 6'2 and built like a 2nd tier Valkyrie) and I pelted up to her in desperation.
All I could manage was a choked out "Ma'am, I SWEAR I'm not a serial killer. Here is my wallet, my mom's phone number is in the front, it's your call. Your roses... or your bathroom, and we don't have TIME to argue about it!"
She weakly pointed up the front steps, murmured something along the lines of "Top of stairs, left door???" before I bolted past her (Positive I would have a few moments of relief before being hauled away by the police.) 20 minutes of being sicker than I can tell (let me put it this way. Jeans - salvagable. Underware? Double wrapped and pitched. I ended up leaving in my emergency skirt I kept in my bag.) all the while waiting for the sound of sirens. I think I practiced my "Hello, officers. Of course I'll come quietly, but you might wish to put some newspaper down on the seat first" speech a few dozen times. I momentarily considered praying for : death/lightening/the Rapture/dimensional travel... but no. If the prayers in the car hadn't held this off, I wasn't going to be in much luck for any of those.
I cleaned the bathroom. Scrubbed it really. And when I couldn't put it off any longer (and realized the window was sealed so I couldn't just scarper) I went out to face the music...
It was a lovely mug of tea, really. And the cake was nice too. She told me my mother was worried and would see me at home.
8 years later and I can't pass a rose garden without blushing flame red... and giggling just a bit.
After trying tinkyada over and over again because so many people spoke so highly about it, I was about to just accept I wasn't going to eat pasta anymore (I know folks love it, but I can't stand the stuff) until I found a new brand. Or at least new to me.
Bionaturae Organic Gluten Free Pasta - lots of shapes available, and works beautifully both cold and hot. They use a rice, potato, and soy flour mix that keeps it from tasting gritty or being really hard after it cools - it also doesn't need to be rinsed. I LOVE this brand - to the point I'm planning on putting in an order for a case in a few weeks (I'm putting aside a few bucks each week from the grocery budget to stock the pantry). I'm weird, pasta isn't just a conveyance for sauce for me, I prefer to be able to dress pasta simply and enjoy the taste and texture of the pasta itself. Tinkyada just didn't work for me. (And since I cook so much, it kinda makes sense - real gluteny pasta isn't just flour and water if it's good. It's two kinds of wheat flour, salt, eggs, sometimes oil, and water. Expecting something that is just rice bran and water mushed together to be the same... just doesn't work.)
For the mornings, can't go much easier than Chex cereal - rice, corn, cinnamon, and chocolate are all gluten free AND can be scooped up on sale for usually between $2-$2.50 ( at least around here ).
Salsa and corn chips, fresh fruits & veggies, cheese, even nutbutter on a corn tortilla will work.
Plain rice (gussy it up with some salsa for spanish rice, add velveeta cheese for what my husband insists on calling "Ghetto Risotto", or even stir in milk, sugar, and cinnamon for a nice dessert or breakfast) cooks pretty easily in a microwave with no special equipment required.
Hope you get out of the situation quick - I can't imagine having to live on frozen dinners!
Hate to say it, but this seems to be the more common reaction I hear of after diagnosing a patient with celiac.
In my case, the doctor came out after the biopsy, shrugged and said "Well, looks like celiac after all" and tried to walk away. My husband literally had to STAND IN THE DOORWAY (my wonderful husband is a former powerlifter - when he blocks a door, it stays blocked! ) to force the man to expand on that and give up more information.
I had to hound the office for the final results - and once those came in... I got "Eh, yeah. It's celiac." and nothing else. Not even a referral TO a nutritionist. (And it wasn't for lack of insurance - my husband WORKS for an insurance company, ours is pretty much the gold standard.)
I know there ARE good doctors - but sadly in my case (and in yours it seems) once it becomes clear there is nothing to make $$ on (no pills, no procedures, nothing a drug company will be funding) just a radical diet change, a lot just wash their hands of the whole thing.
The reason I'm still as annoyed as I sound is the same doctor actually had the gall to call me outright a hypochondriac and stupid when I forced the issue of getting the biopsy (because really, every gal just wants to spend the day with a hose up her backside! ) and when I finally found out WHY I had been sick for so long he just shrugged it off and was even ruder.
There is a reason I'm pretty hard to get into a doctor's office anymore.
I took me awhile to get into the groove, but honestly, cooking/eating gluten-free does become 2nd nature after a bit!
Breakfast for me is, most days, either a smoothie (yogurt, fruit, whizzed in the food pro), some Chex (rice, corn, and chocolate are all Gluten free - and far far cheaper than the "specialty" gluten-free cereals.), or a muffin (homemade pumpkin or english. On the weekends, pancakes, bacon or sausage are a usual treat with my husband. (If you can get a copy of the Carol Fenster 1000 gluten-free recipes from the library, the first recipe in the book is for pancakes. They are AMAZING.)
Lunches - sandwiches on English muffins or corn tortillas. rice salads. lots of fruits. I also make fruit rolls with chopped fresh fruit wrapped up in spring roll wrappers. Pancakes rolled up with cashew butter (sometimes spiked with chocolate for a homemade version of Nutella!).
If it is snacks that are the hard thing - I really suggest going to the library and looking for books based on building kid's lunches and snacks. It may sound funny for an adult, but quick tasty items that are grab and go are what WE need too - not just kids! Substitute rice paper wrappers, corn tortillas, corn chips, gluten-free bread etc in the recipes - but find fillings and fixings that sound good to you.
It can be a bit overwhelming at first to get started gluten-free, but I promise it all smooths out.
Are you getting everything your body needs now that you aren't eating gluten? I ended up being told by my doctor to start taking B complex vitamins because I was so tired all the time - most Americans apparently get their B vitamins from enriched cereals and processed foods (not a whole lotta liver and shellfish being eaten! lol) and with those gone, it can whomp your body.
I've been taking just an over the counter B complex vitamin for about 8 months now, and it seems to really help my energy levels. YMMV
Thanks all. As my head clears (and my stomach settles - soon... I really really hope soon) I'll be taking all the advice and suggestions and putting them into effect.
My husband has already spoken to several folks at HR and they are moving things up the ladder on their end - I just need to tackle Royal Caribbean on my side next.
I think one of the hardest things to deal with on the ship was the "Eh, sucks to be you" attitude given by the staff higher up the chain. I have NO complaints about the cabin crews (the wonderful gentleman who cleaned the room was amazing for example. The little girl who tried to help me? She was as devastated as I was to send me back to my table without a meal.) but guest services, the maitre de, those higher up the chain of command where just TERRIBLE. Rude, snippy, and generally shrugged off any questions or requests. Telling me to just ask the kitchen crew to 'figure something out' doesn't work if you DON'T BUY THE GROCERIES BEFORE YOU LEAVE SHORE. Just WHAT the hard working crew was supposed to manage to find when they didn't bother to stock the stores like they do on non-corporate sail out was beyond me.
There came a point, round about the 4th day where honestly, if I had been given the options of A- a hearty meal, B- $5,000 in cash, or C- popping the head of guest services in the nose without worrying about being arrested.... it would be a hard call to make.
But I'd likely end up hungry, still broke, and soaking a sore hand!
It's also a little heartbreaking to have our one and only trip this summer be so royally screwed. I was seriously ill all winter and the plans my husband and I had made for this summer really was what got me through. We didn't plan for this trip, and while it is great for his future career.... it was a hardship to make it work. Both financial and time-wise. Essentially - all our plans for the summer got scrapped for this little piece of floating hell. That makes it a doubly bitter pill to swallow.
I'm also more than a little peeved to have made it for MONTHS without problems with the celiac - happily trit-trotting along (even found a few local restaurants to go to with friends, had company over who loved the gluten free meals I made, etc) but now I'm getting the joys of being sick, even almost a week out from the trip! It's like I can't SHAKE the dratted ship!
If I'm going to be THIS ill - I can't help the rather childish thought in the back of my addled brain that thinks that if I have to be sick, it should have been for something WORTH it. Like, a GOOD pizza, a slice of my mom's lasagna, or a thick slab of my dad's homemade bread. But NooooOooOo. This is from CC'd watery lettuce and dried out carrot shavings!
Like others have said - a sweet potato steamed and mashed works almost exactly like pumpkin in recipes, but UNLIKE the others.... I happen to be in Northeast Ohio (Akron) and might have an idea for you to GET pumpkin!
The local Aldi's have started carrying canned pumpkin (plain AND pie filling) at least around here, again. I had been getting a tad bit worried myself, as I practically LIVE on pumpkin muffins for breakfast - and the pumpkin I had canned and the cans I had stocked up on at the holidays were starting to run a wee bit thin on my shelves. To my relief, I finally found it again - and in one of the cheaper stores in the area. If there is an Aldi's near you, might be worth a quick check. (And if not... Akron is a pretty spiffy town to visit. Heck - we have a gluten free pizza shop nearby, worth the trek? )