Travel to experience different cultures, cuisines, architecture, gardens, history, etc.; food - I instruct cooking classes which can be challenging with celiac; gardening (I am a Master Gardener); reading and walking.
It is a huge dilema and I feel for you. My husband and I have a house in Europe and will eventually live there. We love it so very much - the slower pace of life, beauty, intriguing culture, history, climate, etc. It is our dream to live in Europe rather than visit. So, I'll be facing some of the same challenges. Perhaps by then things will have improved!
It is so true that you need to be healthy. Let me also add that you must also LIVE life but of course without risking your health at the same time. Let me explain. I have a major back injury that is debilitating - very difficult to sit, stand for prolonged periods of time, and so on. However bad it is I refuse to allow it to prevent me from doing things I enjoy. But it is different from living in constant fear of causing serious internal problems in your future.
Yours is a tough decision and I totally understand where you are coming from. However, you do want to have a life to live. You are young and have lots of time to consider living elsewhere if you want, too. Some countries are better equipped, informed and more knowledgable than others. I still encourage you to pursue your dreams - just maybe somewhere more gluten-free friendly!
As requested am posting my favourite gluten-free focaccia bread to date. Note that the second day it becomes very dry so try to eat it the first day (only makes one small loaf, anyway). Incredibly easy to make. Good to dip in olive oil and balsamic, too.
Bread Flour Mix (makes 2 cups but I triple to have on hand):
2/3 c millet flour
1/3 c sorghum flour
1/3 c cornstarch
1/3 c potato starch
1/3 c tapioca flour (or may be labelled starch - same thing)
1 1/2 cups of above
1 t xanthan gum
1/2 t salt
1 T granulated sugar
1 t gluten-free onion powder
1/4 oz dry quick-rise yeast granules
1 t olive oil
3/4 c plus 1 T water at 110F
coarse sea salt
Spray 8 or 9" round cake pan with spray (or grease as usual) and sprinkle with cornmeal (or simply dust with some of above flour).
Mix all dry in bowl of electric mixer. NOTE: I added finely minced fresh rosemary to the dough as well for more flavour. Pour warm water and olive oil into bowl; mix just until blended. Scrape bowl and beaters and beat on high 2 min.
Spoon dough into pan and spread to sides. Cover and let rise for about 40-60 min. (should be double in height).
Preheat oven to 400.
Sprinkle olive oil over top and spread into a THIN film over the bread. Sprinkle liberally with fresh rosemary and sea salt (and whatever else - garlic cloves, onion, sundried tomatoes, etc.). Another nice addition is caramelized onions on top. MMMMM!!
Bake 20-25 min for 8"; 15-20 min for 9".
*Note that "t" is tsp; "T" is tbsp.
(This has been taken from Annalise Robert's book.)
Pork Chops Brined in Apple Cider, Juniper and Vanilla Bean with Caramelized Onion Apricot Chutney
White Rice Infused with Apple
Leek Gruyere Gratin
Double Layer Coconut Cream Cake with Coconut Buttercream
Speaking of toast, has anyone tried the toast bags you slip a piece of bread or bagel into to toast in a glutenized toaster/toaster oven? They are really cool. They come in a set of four and each bag is good for 50 uses. The reason I bought them is to take them with me when I travel as my husband and I stay in B&Bs. They are also good for use at family meals or other peoples' homes. So, I will still be able to safely have my toast.
You always need an acid in vinaigrettes so if you cannot have vinegars try orange, lemon, lime or grapefruit juice (and zest) with your neutral oil. You can also use some apple cider. You'll also need an emulsifying agent such as dijon mustard. Some finely minced shallots are also lovely in vinaigrettes. Add a touch of honey, agave or maple syrup or sugar. Some fresh herbs, S&P and voila - done!
Can you tolerate buttermilk powder? If so, you can use it to make many creamy dressings
Y'all are breakin' my heart! I know how frustrating it is. I swear. I'm sensitive enough that I can't even have a crumb (though I don't believe I've had issues with airborne gluten...yet, anyway). But please remember something: folks everywhere have something. I feel like some days: do I need one more thing to complicate my life?! Really?! But then I see someone with severe arthritis or cancer or some other godawful disease, and I think, you know what? This is easier. Yes, it stinks. No doubt. But if you let it, it will force you to try other foods. You'll discover the joys of ethnic foods. You'll try vegetables and fruits you'd never consider, and you'll no longer zone out on eating too much bread before the appetizer even arrives (raise your hand if you done that a time or two...) You can grab a bag of chips at the convenience store, and no one can make you feel bad for not buying the bag of pretzels, instead... This is your frustration and annoyance...no doubt. But part of what helped me accept it was trying other foods that I wouldn't usually try, and discovered that I love Thai food and sushi, and as I find local places that know me, they'll cook things just for me. And I've talked my local health store into carrying other brands of gluten free items, as the call for them is even greater than before.
I'm not trying to sound all sunshine and roses -- you are right to be angry and frustrated. Feel it and get it out. You need to. But when you can, find the reasons to embrace this as part of your life. It will open doors you never considered, and it will make you so much more sensitive to people who struggle with other maladies and diseases. My compassion level, which I always thought was high, has gone through the roof since I've discovered I have celiac's.
Any way....(((((BIG HUG))))) to those of you who are really struggling through this. You are not alone, and you will get through it. You found a family here -- and more information and help than you can shake a stick at. Use it and be well.
Thanks for putting things into perspective! I needed that. My rant (above) really shocks me - it's not like me and I am embarassed. Must have had an extra selfish day. In fact, yesterday I was thinking that I would far rather have celiac disease than my debilitating back injury pain and OA. But, alas, I have all. You are right - I do not have cancer, I am not a quadriplegic and I do not have ALS. And at least with celiac disease there IS something you can do about it so you can feel more in control of things rather than being helpless.
Although my life is all about food, it still can be - I do NOT need to give up that passion and for that I am grateful. I am still amazingly blessed.
Surprised no one has mentioned risotto yet! There are so many combinations it's not even funny, from wild mushroom with pesto to Milanese to fresh herb and toasted pine nuts and on and on... I really like rice but ADORE risotto (only with carnaroli or arborio, though, because of the starch content). It is an awesome side or main.
As far as plain rice goes, my favourite is jasmine. When I cook rice I like to add aromatics to the water including bay leaves, kaffir lime leaves, fresh lemon juice, curry leaves, and so on. Makes a huge difference to your plain old everyday rice!
Lamb tagines with rice are also lovely. Another favourite of mine is paella with all the crunchy bits on the bottom!
There was a recent symposium in San Diego (I think) and they discussed this very issue. I think the average for side effects is 50 mg of gluten, but one person was affected by 10mg. I can't remember if this was looking specifically at villi damage or at just outward symptoms, like nausea, cramping, etc. I would expect that if it's an immune system response that it shouldn't matter the amount because any contact would trigger it. I mean, a virus is pretty freakin' small and it triggers the immune system. I'm no immune system expert, though, so who am I to say one way or the other.
I do agree though, that it is serious for everyone. I think the one poster said it well with the silent celiacs having it harder. They can't outwardly tell if they're being glutened on a regular basis since they have no outward symptoms to tell them so. Whereas, someone who is particularly sensitive will be able to know quickly if they've been glutened with even a small amount and can take measures to avoid the source in the future. Although both subjects will have and autoimmune response against the villi in their small intestine, only one will know about it and be able to avoid it in the future.
That is my understanding as well - it is severe for all of us. I am one of the silent celiacs who finds it very difficult - what if I am using a product that is causing serious internal damage and I have no idea? Scary and sobering thought.
I know that some people are really gung-ho into the gluten-free lifestyle. They get really into it and inspire their whole families to join in...
Unfortunately, that's NOT me. I honestly find the diet to be the most restrictive and annoying thing ever. I hate not being able to go into a restaurant and order whatever I want. I hate having to pay twice as much for snacks and breads when grocery shopping. And I hate having to be the difficult one that people have to make special meals for.
Surprisingly, I don't even miss normal food. I just hate the inconvenient, expensive, pain in the ass lifestyle. I hate having to be "special."
I do it because I have to, but I don't think I'll ever like it. I hope and pray that my future children won't have the disease. Nothing about it is fun. At least not to me.
I'm definitely not in the gung-ho category, either. Like you I miss the convenience. Food is my life in many ways as I teach cooking classes, test recipes for various magazines, and cater (or USED to cater). It SUCKS!!! I also hate being in the spotlight in a bad way. It is expensive and it seems unfair. If I had a choice I certainly would not be doing this, either, especially as I don't have the glutened symptoms. I do it because I have no choice. Stupid dumb positive biopsies!
Going to Paris this year will be interesting (my husband's AGM and spouses are invited). I want to go but this time will be so different as my first time there gluten-free. We'll be on a few bus tours (packed lunches) and going to the top restaurants in the city (will have to plan ahead for that, too). I was so looking forward to trying such and such but now never, ever can. We're also going to Italy and Croatia in 8 weeks which is tough. We used to travel for food but now that, too, is restricted. Going out and worrying about every morsel that goes into my mouth is my focus and I wish it weren't.
BUT I try not to allow myself think of anything beyond tomorrow as forever seems well, forever! Can't fathom living like this for the next 40 or 50 (whatever) years but am also hopeful things will improve drastically. And as I've mentioned elsewhere, I am making some really good gluten-free baking but it is not the same!
So, I honestly understand. It is a terrible, horrible, daunting, and frustrating stupid dumb disease.
I know just how you feel. I've been at this for a year in April and I am still angry. My family is tired of me calling them "tribe Wheaterites" in an joking/antagonistic manner. I thought it was time for me to particicipate in the support forum because I need it really bad. Your post and the replies made me cry cry cry.....I feel like I found my tribe, "the Gluten-free-darites"
This is part of an email I wrote to my sister on Sunday. Sunday, I was at my lowest point so far in this journey. She has Reumatoid Arthritis, so she understands, and we vent to each other.
By the way, I have a wheat allergy. It's hard to find other wheat allergy peeps, am I welcome here?
To my sister on Sunday:
I am very depressed today about my wheat allergy. I got glutened all week by Splenda. It use to be a safe food, but I think they must have changed their maltodextrin supplier to one that is not in the U.S, because the bag I opened last week has been breaking me out in hives and migraines all week. I thought it was the coffee, but I eliminated splenda first, just this morning and did not break out. So, raw sugar it is for me. Maltodextrin made outside the U.S. is not safe.
Then I had to be a pain in the ass at church with communion. They have you dip the bread into a large goblet of grape juice. It did not occur to them that the rice cracker dipped in the grape juice full of wheat crumbs was a problem. But they were so nice and rinsed out the cup and put fresh juice in it for me......while 20 people waiting in line.....once again, I was a pain in the ass.
Then I went to my weight loss meeting, where they were all sampling this wheat bread. but, Jessica's fiance' made them take the bread into the kitchen to try. He's a chef and somehow knew that I would get sick from it in the air. I didn't have to say anything. That was nice...however, I was a pain in the ass.
Then we went to a neighbor's BBQ. I had to ask about every single ingredient in every dish before I found something to eat.....The host had to ask people things like "what brand of mayo did you use in the potato salad?" Did you make the Spanish rice from scratch or did you use a box mix?"
Again....I was a pain in the ass.
And I still got sick. It happened at the BBQ with all the cakes, wheat products, beer and wine in the room. I get sick from wheat in the air. I have a migraine.
I need a support group. My family is soooo sick of hearing about the wheat allergy, and I'm tired of being a pain in the ass.
I'm angry about this wheat allergy. I'm so sensitive now that I can't even be in a room with wheat without breaking out in hives.
I learned that the reason I cannot handle fragrances is because they have wheat in them. The manufacturers do not have to declare it. I saw that on "The doctors", believe it or not. They said if you have a wheat allergy and can handle certain scents (me) chances are that they are wheat free, but most have wheat ingredients and therefor make me sick!!!!
I hope I can be a part of your group as I am still working on coping...........
Oh, I am SO sorry for all you are going through. At first it seems impossible and overwhelming and you definitely do go through a grieving phase. Emotions run high (speaking from experience). We understand what you are going through - we really do. Last week I had some corn tortilla chips after checking the ingredients and website. However, today I received an email from them in response to my email last week telling me that they apologize but the product DOES now contain gluten. I was being SO stringent! Thank God I do not get GI issues when glutened. However, as a silent celiac I have no clue when it happens which is very scary.
Unfortunately it can be far easier to just stay home and avoid potlucks, BBQs, restaurants and so on. But then you also have to have to live in order to have normalcy. At our church there are three of us with Celiac who go to the front to get our rice crackers for communion before the bread is passed around in the congregation so I am happy they are aware. BUT there are no gluten-free friendly restaurants in town at all.
I can relate to grilling people on ingredients they put into their food before I feel safe to eat it. I feel like a dork for having to do it but I have become more assertive! It seems as though more people "get" other diseases such as diabetes.
So, I have been doing things that I enjoy, such as continuing to cook and eat very well at home. I'm actually having fun experimenting with all sorts of flour blends for yummy coconut cakes, cookies, pies, brownies, breads, English muffins, tortillas... Sure, some things SUCK but some actually taste remarkably good. Sometimes you need a treat. Unfortunately when I hear "treat" I think FOOD.
Keep hanging in there. Be kind to yourself! And WELCOME! You will find a lot of wisdom here. And don't forget - we UNDERSTAND.