As I mentioned in my blog post on Tuesday, I get emails from fellow celiacs asking for help. Your response on Tuesday was nothing short of incredible and it helped Denise (aka Mary) so much. She was beyond appreciative.
For that, I thank you.
I also realized that for every celiac that reaches out for help, there must be 100 more who suffer in silence; who are afraid to ask for help. So your contributions are also helping them.
Again, kudos to you. Our community seriously rocks!
Which brings me to today’s call for help. I will call her Susan. Her email to me is below. Her family thinks celiac is good because now she’ll be skinnier. You just can’t make this stuff up.
If you can take a few minutes and respond to her letter, you’ll be helping her and countless others.
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Hey Gluten Dude.
I don’t really know how to start this. I guess I’m just sending you this email because I haven’t talked about this to anyone.
I am 21 I’m a student nurse and when I was diagnosed with celiac a few weeks ago I didn’t know how to react.
The response from family and friends was “its ok you’ll be fine you; it’s just like any diet and the good thing is you’ll be healthier and skinnier.”
Not really knowing what to do I turned to the Internet and I found you.
The time when I found you, you had that article up and your thoughts on celiac and death. And in the attempt to think like my family, I realized how important this really is and that it’s a way of life, of survival.
I can’t say I haven’t been struggling. I haven’t told all my friends so I haven’t really gone out or gone to their houses.
I have lived life till recently with incredible tummy aches, various runs to the toilet, anxiety and depression because of this and the feeling of total exhaustion throughout the day. I have also had lactose intolerance ever since I can remember. I remember my mum trying to force me to have my daily dose of calcium through a huge glass of milk, it would totally kill me.
I would also be called lazy as I was constantly tired and couldn’t concentrate.
Now that I know where all this is coming from. I don’t actually know how to take it.
I would like to know if you have any advise to give me.
I would also like to know if you know anyone living in Australia with celiac that I could talk to.
What I liked about your website is the fact that there are people like you talking on behalf of us and that there are other people just like me everywhere. I am not alone and at least this makes me happy.
Thank you for your patience in reading all of this and thank you for your blog.
Hope to hear from you soon
Sincerely
Susan
Hello Susan! Check out http://www.glutenfreescallywag.com/
Not only is she from Australia…she has beautiful recipes and stories!
Good luck! And here’s to (soon!) feeling better!
-Emily
The cupcakes look phenomenal!!!! BUT…can you change the recipe to like “Cups” and “Tsps” and the like? Thanks for sharing!
Susan,
I was diagnosed with Celiac Disease around 2004. It has been and always will be a long and arduous road! Things have changed tremendously since I was diagnosed! There are TONS of food stuff that is now marked “Gluten Free”. My advice to you is…even if it says “Gluten Free”…STILL read the ingredients!!! I read the ingredients on EVERYTHING that goes in my mouth as does myhusband!!!!!
Please join the “Celiac Disease Support Group” on Facebook. We are all very supportive and it is an awesome site to run things by people when you have a question or have something to share!
When sharing with people that don’t know what CD is there is a PERFECT answer that a very dear friend of mine shared with me. She said, “How would you like to eat rat poison? That is what happens to me when I get glutened!!!” That makes it a little easier for them to understand! My mother in law once told me, “The flour is only on the top…just scrape it off!” OMG…what is wrong with you woman??????? So…I purchased her a bag of GF flour and sat down and TOTALLY explained what CD is and what being glutened can do to you! I still don’t believe that she understands, but she tries a little harder. There was one point when all I could eat was fruits and vegetables, yogurt, soup…etc. Pretty much a liquid diet until my insides started to heal!
I guess my point is…it is always going to be hard, but there are people like Gluten Dude and our FB support group that are here to help and support!!! Good luck and have a great day!!!!!
Susan…this comes from a woman on my Facebook page:
Wow, it is amazing how isolated people can feel who should have access to so much information and, after all, to a fairly large community. You could point her to the Global Celiac Guide group right here on Facebook, or two http://www.coeliac.org.au/ – both are ressources where she should be able to find people to talk to in no time.
I feel for you. Go to my site and you can contact me if you would like to talk.
The best things I have done are google “GF blog Australia” and subscribe to the posts. The other thing I did was search Facebook for “gluten free” then “coeliac” and hunted out the Aussie contacts.
There is a great support page called “Aussie coeliacs support” in groups too. They way to create a bond is to ask loads of questions and read lots 🙂
Which state are you in? Join the coeliac Society for your state.
There is heaps more I can help you with… Restaurant/cafe sites, foods to look out for even share some of my recipes if you need 🙂
Chin up. Take heart and get ready for your ride to feeling much better!
Lauren
sorry site is
http://gfcc.info
Hello Susan
IM thrilled that you finally have the roadmap to living pain free..
Know that you are NOT alone and even though some of us live half a word away geographically we truly are a global community filled with love experience and resources.
Dude and Mrs Dude are a fine place to start your journey, please feel free to contact myself as a resource if you would like
Lots of love Lesley.
Susan,
First of all, I send you hugs and positive vibes to you. Second, let yourself feel whatever feelings you feel. Cope with those feelings in a positive manner and start your new life.
You’ve come to the right place. You’ve done the right thing by seeking information. I hope your doctor gave you information in regards to what you can eat. Here are some real helpful sites to inform you about your journey:
http://wtfceliac.com/
http://www.celiac.org/
I googled some Australia stuff for you, I hope they help:
http://www.coeliac.org.au/
http://itunes.apple.com/au/app/coeliac-society-australia/id385684649?mt=8 (I thought this was neat)
Lastly, you are no longer alone. I know I’m far away from you but if you ever need to talk or need information please know that I am here for you!
-J
Twitter: iamjtheblog
wordpress: iamjtheblog.wordpress.com
Ps. Dude: I’ve been meaning to tell you that I enjoy the simple math as the security question. Works out the brain LOL
Susan I’m sending you the biggest HUG across the world from Toronto, Canada. Be Strong!
xo.
Jen
Hi Susan
It gets easier.
I suggest reading, reading and more reading until you are comfortable saying the words: I live with celiacs disease and that means that I cannot eat anything containing gluten or else I become seriously ill. Then you need to become comfortable answering all the questions that naturally stem from that.
The biggest thing I taught my kids about our disease is that they need to advocate for themselves which means we all need to be able to explain what we have, why we need a special diet and what we cannot eat. Not everyone will question you, but many of your friends and family will so you need to prepare yourself to answer the inevitable questions and you need to learn common ingredients and common places that gluten is hidden in order to ask informed questions of those preparing food for you and to read food labels with ease.
it really does get easy. Until it is easy, make yourself some cue cards to remind yourself how to answer those prying questions and other cue cards to support yourself in advocating for yourself while you dine out and shop.
Tracey
Fortunately Australia is one of the best countries in the world for gluten free and celiac friendly options. I’m not sure where in Oz you are but I have some good information on my website on shopping and eating out as a celiac in Sydney and Australia in general.
http://glutenfreetraveller.com/category/gluten-free-australia/
If you join Coeliac Oz they can provide you with fantastic information and help. They also have coeliac help groups around the country which are perfect for newly diagnosed coeliacs.
http://www.coeliac.org.au/
Susan,
Everyone’s advice above is great. What I might add is that I keep reading across all the forums, blogs, tweets, etc. is that the first year is absolutely the hardest. I am in still in my first year, but I can tell you that even after only eight months in, this disease has really toughened me up and forced me to be a better advocate for myself.
Since I’m a fan of lists, below are a few things that I’ve determined make the first year the hardest in general:
1. There is a massive learning curve about what is actually gluten free (even items labeled GF are not actually GF sometimes), what your body personally can tolerate during the healing phase, and gluten cross-contamination (it IS a huge deal). The resources above can help with this. I also suggest checking out the University of Chicago Celiac Center’s website for very helpful one-pagers (to educate yourself and loved ones) and an e-book in PDF that helps with the lifestyle changes you are going to need to make. You’re also going to have to be super observant through the learning curve to see how “sensitive” your body is.
2. Getting comfortable with being your own advocate–at the doctor’s office, at work, at school, with family or friends–can take some getting used to. You must learn your body and this disease very intimately so you can do so. Tracey’s cue card idea is GENIUS. I will be using it even eight months in. Also, it’ll be helpful to start a journal so you can organize your thoughts before doctor’s visits, in case you need follow-up appointments for any ongoing issues.
3. Patience is key–it’s going to take a while for your body to heal–longer than you’d like probably, and people are going to say stupid things or be insensitive because celiac is largely misunderstood. The tough thing about this one is that having patience while you’re well can be hard…let alone when you’re feeling crappy. These frustrations have been almost as hard as the painful symptoms and fatigue for me sometimes. But the good news is that I feel like I can see the light at the end of the tunnel. And I can say that I’ve really learned a lot about patience during this process. 🙂
4. Nutrition is essential. If you haven’t seen a specializing nutritionist or researched nutrition specific to celiac disease, this can be REALLY helpful. It’s not enough to eat a bunch of GF junk food just because it’s GF. Your body, more than ever, needs serious nutrition to help it heal. I wasn’t a big fan of healthy eating before this ordeal so nutrition has been a major part of the first-year challenges for me. But based on what I’ve read in the forums (mostly celiac.com), this can be a challenge for EVERYONE. In fact, I’m attending a webinar in June called, “Yes, you can eat” put on by the NFCA that talks through how to deal with additional food intolerances as a celiac. I think this is going to be an ongoing learning process for me now, as it should be for everyone, really. (I was just too stubborn to accept that pre-celiac. ;-D)
5. Rest is a TOP priority. Take naps, go to bed early. Get rest whenever you can. Nuff said. 🙂
6. Stress management is a component in healing from all auto-immune diseases (and illnesses in general). Meditation, hot baths, light exercise (depending on what you can tolerate), reading before bed, breathing exercises, relaxing music, walks through nature, therapy/counseling, talking to a friend or loved one who totally gets it, watching a movie at home with your pet, support groups, knitting–whatever gets you relaxed and helps you manage stress, do it–as long as it’s healthy. 😉
Some of these things are basic, but I have to remind myself of them (and my husband has to remind me, too sometimes). Anyone else can feel free to add to this. I’m sure there are some challenges or tips I’m missing that could be helpful for other first-years. I’m trying not to get too granular because I know too much information can be equally overwhelming. And because I know I’m still learning!
And from I’ve also read and am already starting to notice during my own healing process at this point is that it DOES GET BETTER after the first year. I don’t want you to feel like its always going to be painful, confusing, depressing or isolating. I’m a fan of giving the facts because I like knowing to expect and I wish I could’ve known all of the above on day one!
I’ve been celiac for over a year and I can tell you that it does get better. Get a cute lunchbox and don’t turn down invitations because of food. Don’t be embarrassed about being celiac because that’s who you are. I’ve had the brain fog, fatigue and self pity. This is a big adjustment – life changing. You’ll eventually find yourself smiling and laughing again.
Out of the five foods in the major food groups four are naturally gluten free. In the grain category you can substitute with rice, quinoa, nuts and certified oats. There is plenty to eat but you will be cooking more and thinking about food choices more. As a future nurse you may find a specialty and help many other celiacs.
My adult son ended up with some major health problems which accounted for some of his “lazy” behavior. It’s a parents job to worry and analyze. Your family will come around. My son told me once – “you don’t know what it’s like to be me”.. That woke me up.
Good luck. There is a lot of good advise here!
Donna, I just now got a cute lunchbox (well, insulated, large bag, really), and it’s kind of signified the acceptance phase for me. 🙂 This is such great advice. I call it my “celiac bag.” It has big comfy straps, plenty of room, a cute floral pattern and it’s insulated. 🙂 It’s supposed to be for taking drinks and snacks to the beach I think (it was in the seasonal section), but it’s perfect for my needs! I can fit everything for a whole day at work in there, including drinks and utensils.
Now if I could just come up with more ideas of what to pack! 😉
Hi susan,
I’m also recently diagonosed, in Australia. and there are losts of us here in aussie, so don’t feel you are alone. there is a Coeliac society, and lots of help and advice no matter the problem. We are lucklier than most of the rest of the world with good products for gluten free. go on facebook, and search for australian coeliac pages my e.mail address is adriannegentleman83@iinet.net.au if you need someone to talk to
Susan,
Take your family’s comments for what they were meant to be — supportive — realizing for yourself that they don’t understand. The understanding will come with time. My sister is the one with celiac and my father the doctor is still trying to comprehend what this really means. My role has been to reach out and try to make the family gathering time easier and more inclusive — and boy am I learning a lot! I keep a separate box of cooking supplies and gear, just to ensure that I don’t contaminate the brown sugar, use up the GF soy sauce, or forget to wash the measuring cups.
As with all things of this nature, “coming out” will get easier with time. You will learn the questions to ask at restaurants (my sister usually calls before deciding it’s OK to go) and sites like this will help you to identify the safe GF foods and those that are labeled GF but are not really safe. And you will become more comfortable with your friends as they learn about and better understand the disease.
I am so glad that you are looking for someone to talk to and give support to you. That is a great first step. My best wishes for you as you start on this new road. Take what comfort you can, for now, in the assurance that you will begin to feel so much better! The changes I have seen in my sister are phenomenal.
Donald
PS. I don’t know if you have Pamela’s brand in Australia. If you do, I have had great success substituting Pamela’s Pancake and Baking Mix for flour in various recipes when cooking for my sister.
HI Susan,
My 15 year old daughter is a coeliac, we are in Sydney and we have found that lots of good gluten free food is available here.
My daughter finds it depressing thinking of all the things that she can’t have anymore, so we try always to focus on the positives.
The Coeliac Society runs supermarket tours regularly, where a coeliac dietitian takes you around all of the supermarket aisles and shows you all the food you can still eat. We found that really helpful.
Best wishes, Lisa
Everyone has offered great advice already, but I would like to add that there are MANY Aussies on Celiac.com. Maybe you could take a look on there as well?
Under the COPING section, there is a thread called NEWBIE INFO 101.
(I admit it, I wrote it– but it may give you some starting tips?)
I wish you well, hon. You are never alone–the celiac community is large and even though many of us are blessed with supportive family members—no one gets it like another celiac. It’s a bond you cannot explain.
If I can help in any way, please, call on me.
You’re going to be okay!
Cheers and a cyber-space hug,
IH
I was diagnosed 8 months ago. My doc just said “You have celiac disease and handedme a sheaf of papers. It was several months before I was completely compliant. I have come to realize that there are a huge number of fooods availaable that are really good. I have found a good pasta (Heartland), but still cannot find a bread that has a decent texture. I don’t generally buy “gluten free” packaged foods. THere are lots of naturally gluten free foods. Carol Fenster has a great recipe for cake. There are lots of good brownie recipes out there.
Realize that you don’t have cancer that requires surgery abd months of chemotherapy. You have a disease that can be managed with delicious food.
Hey Susan
there are plenty from Australia who deal with Coeliac Disease, myself included! I don’t know any others in my circle of friends who are Coeliac, though my close friends understand and generally accommodate me 🙂
Here if you want to chat…
I have notice on celiac.com they have celiac disease and gluten intolerance as interchangeable terms. THEY ARE NOT THE SAME THING!! Celiac(Coeliac) disease is an autoimmune disorder, gluten intolerance is not an autoimmune disorder. They involve different reactions in the small intestine. Be aware.
Hi Susan,
I know that this article was written last year but I am also a student who was diagnosed with celiac last year. I am an 21 yr old Aussie who lives in Melb and understand everything your saying. A suggestion to going out with friends, if they are going out somewhere that does not cater for us, eat before hand and have a drink while they are eating. Its hard, but your friends will understand. If you want to contact me my email is chiara.rose.k@gmail.com or you could message me on fb https://www.facebook.com/chiararose.kemp
Hi all,
We are a newish gluten free website in Australia. Interesting to see that some many Aussies need to go global in the search for information and support. We would love to hear from all of you. We want to know what you are missing here that you can see is happening elsewhere in the world. Diagnosis of coeliac disease or living gluten free for other reasons can be testing. We are here to help with information, research and support.
http://www.deglutenous.com
All the best.
There is a fantastic facebook site in Australia called Coeliac Disease in Australia. Great camaraderie and very helpful.