WIN-It-Wednesday: “Real Life with Celiac Disease: Troubleshooting & Thriving Gluten Free”
Do you have questions about celiac disease or the gluten-free diet that you need quick and easy to understand answers? Do you wish that for once a doctor and dietitian 
were partners in helping you solve problems and issues concerning the gluten-free lifestyle?
Well fret no more my gluten-free friends! Dr. Daniel Leffler, MD, MS and Melinda Dennis, MS, RD and LDN have teamed up and co-authored a new book published by the American Gastroenterological Association (AGA) Real Life with Celiac Disease: Troubleshooting & Thriving Gluten Free
In their book, Dr. Leffler and Ms. Dennis, both from the Beth Israel Deaconess Medical Center in Boston, have teamed up with over 50 international experts on celiac disease that share stories of patients who have questions or problems related to celiac and gluten-related disorders.
Even though I read this book while laying on the Rhode Island beach side, the wealth of knowledge and useful information included in this book made me feel as if I were attending an international celiac conference, where each contributor on the agenda speaks about engaging and important information about celiac disease in easy-to-understand terminology.
Dr. Leffler is also currently conducting a research study involving having first-degree relatives of celiac disease test themselves for celiac disease using a new “finger-stick” blood 
test kit. Research results of this testing will hopefully be beneficial in two ways: First, family members who tested positive for celiac disease will be assisted in arranging appropriate medical follow-up to lead to an earlier diagnosis & care of the disease; and second, this research will allow the medical community to more readily reach & treat more potential people with celiac disease, and also allow these medical researchers the ability to conduct more efficient studies of the disease. The test kits being used in Dr. Leffler’s test are distributed by GlutenPro and is called Biocard/CeliacSure. It is similar to the standard celiac blood test TTG used in doctor’s offices, but is super consumer-friendly. It involves using just a fingerstick blood test and is able to be read directly by patients in less than 10-minutes right in their own homes.
Good information from fantastic contributors all compiled into one fabulous book are the reasons why I am so happy to have GlutenPro sponsor this week’s WIN-It-Wednesday on BeFreeForMe.com.
How can you win?
Easy!
Reply to this blog and tell us a little pointer, piece of advice or inspirational tidbit you would pass along to someone just diagnosed with celiac disease to help them troubleshoot and thrive with their new lifestyle (or if you are just diagnosed, something you would love to learn about). My tidbit? If celiac disease runs in your family… Get tested! Symptoms or no symptoms!
A total of SIX (Yes… 6!) BeFreeForMe members will be selected to win a copy of Real Life with Celiac Disease: Troubleshooting & Thriving Gluten Free
Good luck, Keep thrivin’… and as always…
Be Free!
Tags: Dr. Daniel Leffler, GlutenPro, Melinda Dennis, Real Life with Celaic Disease: Troubleshooting and Thriving Gluten Free, Win-It-Wednesday
June 7th, 2011 at 9:58 pm
I’m still trying to get a diagnosis. I’ve had to add gluten back into my diet, had blood tests run yesterday.
Wondering what to do if it’s negative, because I really feel it’s an issue.
June 8th, 2011 at 7:08 am
My first response after being diagnosed Celiac last November was the panic of losing my ability to eat whatever I wanted. After having only 7 months of living GF under my belt, I now see there was no need to panic. I’m actually enjoying the tastes of all those “new” flours better than the same old wheat standard that I was so use to. Would I like to be able to go to any pastry shop and indulge? Oh, yeah. Do I feel an overwhelming sadness because I can’t anymore. NO! I thank all those who’ve gone before me to create and share GF recipes and for trying to get this nation to finally start recognizing the huge population of those who are GF (and also those with food allergies).
June 8th, 2011 at 8:12 am
I often tell people that finding out I couldn’t have gluten wasn’t a devastating event in my life, but a miracle and blessing in that my health improved so much after changing my diet – I lost 70 pounds, got off blood pressure medications, got off Nexium, got off migraine preventatives and have only quarterly migraines over weekly. I feel soooo much better.
June 8th, 2011 at 8:51 am
Don’t feel overwhelmed by “I can’t eat anything”, there is so many things you can eat and it so much fun to try new things.
June 8th, 2011 at 8:52 am
So TRUE, Lisa! =)
Be Free!
Kathleen
June 8th, 2011 at 9:11 am
The two things that helped the most were number 1: reading everything I could find in the library and online from reputable sources about Celiac Disease and making nutrition decisions based on accurate, up to date information and number 2: buying several gluten free cookbooks and finding a mentor to bake with several times until I was comfortable using gluten free flours. My Celiac was found before I got sick, I had very few symptoms which I thought was caused by my food allergies. Finding out that I had Celiac was a devastating and life changing event for me and the nine immediate family members were also diagnosed with Celiac over the next year. We have learned to eat well, we travel, eat in restaurants, host parties, weddings and over-all we live well. Not to say that this isn’t hard but it is what it is and who I am.
June 8th, 2011 at 9:40 am
My advice to a newly diagnosed celiac is to subscribe to blogs – such as this one. I have found them to be so helpful in learning the latest medical news as well as recipes and reviews of new gf products.
June 8th, 2011 at 10:02 am
The key is to arm yourself with information. The more knowledge you have the easier it is to manage your health.
June 8th, 2011 at 10:37 am
If possible I reccomend going to a celiac conference and or vendor fair. I did this in my first year of diagnosis, and it helped a lot. You meet so many people just like you. Also, the knowledge and cooking classes help you to take control of the gluten free diet.
June 8th, 2011 at 10:59 am
HI,
My tip would be, take it one day at a time. It can seem very overwhelming. Trust in yourself that you can do this. It is so rewarding to see the change in yourself and even more in your child, (if it is your child that has Celiac.) Eventually, you will just be like, hey, I got this GF lifestyle!! 🙂 ~Cherie
June 8th, 2011 at 11:10 am
My big advice is: Once you are diagnosed, don’t cheat! Even if you don’t know what to cook or how, keep gluten out of your diet. I’m just learning to cook differently, but, the difference in my health is just remarkable! Even my body shape changed dramatically when all the swelling went down. Take the time to research and to learn. I’m a rookie at this myself, thus, I would save to buy this book if I don’t win one because knowledge is freedom
June 8th, 2011 at 11:14 am
I often tell people who are newly diagnosed to expect a steep learning curve for the GF diet. Get into a support group even if it’s just an online group. Groups give you a place to ask questions from Celiac’s who’ve “been there, done that”. Ask questions of those folks. Read Dr Peter Green’s book on Celiac Disease. I also suggest buying a current GF shopping guide. It will save hours of shopping time. Purge the kitchen immediately of any gluten. Our home is 100% GF even though I’m the only Celiac in the family (my husband suggested it). It makes our home a safe place for me. Give yourself permission to make mistakes along the way. It’s going to happen. You’re on the way to good health!
June 8th, 2011 at 11:20 am
I just received my diagnosis in May 2011 and have been trying to learn this new lifestyle. It can be easy and enjoyable when I eat at home but challenging and scary when I try to eat out. I am always looking to further my knowledge of this disease and lifestyle!
June 8th, 2011 at 11:27 am
Check out the online resources…tons of great websites with awesome recipes & other tips. other thing is to pair up with some people that you can talk to or hang out with. it definitely makes it easier on you when you have another friend in your circle that you can relate to!
June 8th, 2011 at 11:33 am
I have recently been diagnosed with Celiac and I think the more information you can get on this subject the better….I feel comfortable eating at home and but I am afraid to eat out because I don’t think some people take this disease seriously and that is scary! I would love this book so I can better understand this disease!
June 8th, 2011 at 11:51 am
My advice to the newly diagnosed would be to focus on what you can eat not what you can’t. I found that many of my family’s favourite meals are already gluten free or can be easily adapted. Learn all you can from reputable web sites. Get informed on reading food labels and ask questions. If in doubt about a certain product – get in touch with the company that makes it.
It gets easier as you go.
June 8th, 2011 at 12:07 pm
So true, Sadie! Thanks… and for those Newbies, Sadie is right. It DOES get easier!
Be Free!
Kathleen
June 8th, 2011 at 12:58 pm
Great idea to have people offer advice to newly diagnosed. Great resource!
My advice would be just to look at your Celiac diagnosis in a positive light….realize that most people with Celiac are never diagnosed, and that you are one of the lucky ones to have been. Be thankful for your diagnosis and your new diet because you’re on the way to a life of better health and longevity! Think of it as the “Cadillac of Diseases” in that it only requires a diet change….it doesn’t require medication, shots, surgery, etc. Once you realize how lucky you are to know you have Celiac, it affects how you see everything related to it, and life takes on a positive spin….
June 8th, 2011 at 1:16 pm
Thanks, Katie for your positive outlook! For those of you that haven’t “met” Katie yet, she is the author of “Mommy, What is Celiac Disease?” … a great resource!
Be Free!
Kathleen
June 8th, 2011 at 1:37 pm
if you know you are going out to eat in advance with a Celiac….call ahead and ask to speak with chef. Then also speak with chef on arrival….they will be much more able to answer your food questions than the wait staff.
June 8th, 2011 at 3:32 pm
Focus on what you CAN eat, and develop a response to the inevitable question, “What happens if you eat gluten?” If it’s humorous and quickly stated, you’ll find that people will drop the subject more readily than if you answered it honestly…and who really wants to discuss the symptoms of gluten exposure with a casual acquaintance? In addition, keep yourself informed of the latest and most reliable information that you can find, and use this blog as a resource! It’s full of great information and real-life solutions.
June 8th, 2011 at 3:40 pm
Thanks, Susan!
Be Free!
Kathleen
June 8th, 2011 at 4:32 pm
On June 8, 2011 from Michelle:
How come so few doctors do test about Celiac Disease I keep being told that I have a Ulcer an Spacic Collin ( IBS ) but I never have been tested for Celiac Diseasr……
Sincerely yours,
Michelle
June 8th, 2011 at 5:36 pm
For parents whose kids are diagnosed with Celiac, it’s very important to remember to not feel guilty if your child went undiagnosed for years. I’m 28, and diagnosed just last November, and my mom still feels bad about me being sick for 10-15 years without an accurate diagnosis. Parents need to remember that it’s not their fault that their child (adult or not) got sick when even doctors couldn’t figure out what was wrong.
June 9th, 2011 at 1:11 am
My Mother in law was diagnosed a few years ago and I am trying to win this book for her. She is continually trying new recipes with different flours and some of the recipes are very yummy. Find a support group in your area. Ask at your grocery store if they have a representative to assist with your shopping. The grocery store where my husband works has a dietitian on staff to assist shoppers.
June 9th, 2011 at 2:24 am
I have been diagnosed with celiac disease for almost 2 years now. What triggered the testing was my losing 25 lbs in one month and always feeling sick. Allmy nutrient levels and such came back low and so I had the blood test for celiac sprue, I was 95% positive. I had the EGD and have been eating gluten free ever since (which is no picnic at times). I started having abdominal pain and though I am on a gluten free diet, the doctors are baffled. I have been in Boston most of the year at Mass General, but ironically, I am going to see Dr. Laffler’s partner, Dr. Sheht (sp?) August 3. I never knew there was a Celiac Clinic, nor did I know the liver and pancreas can be affected. I would love to get a copy of this book, not only to educate myself more, but my local celiac foundation. Also, try to educate my brother, the father of my 2 neices, that even though they feel ok, they can have this problem. There is still so much I don’t know and the doctors don’t know. I will always be an advocate for furthur research and education!
June 9th, 2011 at 4:29 am
The whole diagnosis can be overwhelming, not to mention expensive. It takes time to adjust your life. You need lots of resourses.
June 9th, 2011 at 7:19 am
Thank you for all the words of encouragement. In my circle of friends and family I am the only diagnosed celiac. I so appreciate their attention to my needs and their wanting to “help” me when we come together for a meal. But, nothing helps like being on-line with people who totally understand every detail of your celiac life. Thank you, all those who’ve put so much awesome information on-line for all of us who are just now joining such a wonderful group of people!
June 9th, 2011 at 7:23 am
Mary-
I’m right there with you in your thoughts!
Be Free!
Kathleen
June 9th, 2011 at 12:11 pm
Everybody who finds out I have Celiac says, “Oh no! How do you ever find anything to eat?” The fact of the matter is that I really don’t miss out. If there is something that you really miss, there is probably a gf substitute out there for it. You just have to look until you find a kind you like. Kinnikinnick’s Kinni-Toos (like Oreos) got me through my first year.
June 9th, 2011 at 12:59 pm
I have a child with celiac disease and she was diagnosed at the age of 3, she is now 5 and yes it has gotten easier, but with a child there are always differences in what she wants to eat and as she grows she tries new things, because she has never eaten any “real” food. She is so happy with what she can eat and that she is not in pain anymore. But it is hard for me because I always think back to when she was a baby and how irritable she was and how I was so irritable with her because I knew something was wrong with her and no one understood, until a great GI doctor helped me out. I find that staying linked with celiac groups to get up to date info on safe places to eat, and just to receive alot of celiac help on the web with safe groups helps me so much, also because she is so young, I keep it simple with her foods- vegetables fruits and meats.
June 9th, 2011 at 3:44 pm
My advice for someone newly diagnosed is to seek out a celiac support group in their area. These groups can provide information, advice, and support and can be a fabulous resource for the newly diagnosed or those who have been living with celiac for awhile.
June 9th, 2011 at 4:05 pm
Become knowledgeable…Open your mind…Educate others around you…Join or start a support group…
reach out in your community- (schools,physicians,dentists,retirement communities,religious affiliations,etc.)…support change in laws…attend classes on eating healthier…cook what you love but eat simply…get back to nature-(organic gardening,self sufficiency,homeopathic solutions,exercise more)
rid your body of poisons including negativity= love yourself,your life,and your new found Celiac world.
Embrace others…become aware of their plight…understand their issues/diseases…listen and learn!
Give in to your diagnosis-grieve then heal and go thru rebirth of your body…let go of fear…learn laughter & love!Its a long road…but aren’t you worth it?! Become your own hero and live it! Inspire others …lets start a Gluten free community locally…state by state…be strong…perservere…rejoice!
June 9th, 2011 at 4:15 pm
Ruth –
That is so awesome! Thanks for those wise words!
Be Free!
Kathleen
June 10th, 2011 at 4:45 pm
I have just been diagnosed and I think my biggest challenge is eating out. I’ve been frequenting places that I know the owners have celiac and am thankful I live in a big city to have these restaurants but I need to learn how to order and be specific!
June 11th, 2011 at 2:29 pm
Get connected, and get some knowledge! Instead of panicking and being overwhelmed with sadness, join the nearest gluten-free diet support group and use the virtually limitless amount of information that we have access to through the internet, books, and research. There’s nothing that friends and a little bit of knowledge can’t cure. Especially because the facts will reveal the power of food, and through being diagnosed you will become equipped with the knowledge you need to consume it for the better. And whatever you do…don’t cheat! (And don’t use lotion with gluten in it and then eat gf finger foods. It’ll get you.) :]
June 11th, 2011 at 11:07 pm
I’m all for positive thinking but be sure to give yourself a break as well. A Celiac disease diagnosis means your whole relationship with food changes pretty much overnight. Remember that it’s okay to occasionally be sad that you miss a particular food, or you miss the freedom of being able to eat anywhere. Give yourself a (small) amount of time to acknowledge that those emotions are real and valid — then go back to normal life.
Don’t feel “wrong” or “ungrateful” if you have moments of being angry even. We ALL have them.
June 11th, 2011 at 11:10 pm
Maura-
So true… It can almost be a mourning process.
But it does get better… with time and knowledge =)
Be Free!
Kathleen
June 13th, 2011 at 6:52 am
Don’t panic! Its not as bad as u think. So many wonderfull tasting foods are still there for you to eat. The hardest thing will be grilling party host for ingrediants. My advice? Call ahead if you know the host or eat before you go & enjoy very limited party treats.
June 13th, 2011 at 6:56 am
Be grateful for all the good things you can still eat, like fruit!! Join a list serve and learn from other people who are going through the same thing.
June 13th, 2011 at 4:51 pm
I was diagnosed 35 years ago when there was very little knowledge about celiac disease. Even in the 90’s there were fewer than 10 research studies about CD. Through the years I’ve learned about “shopping’ the outisde areas of the supermarket. The best place to start is the produce section followed by dairy and meat. It’s also important to realize that the gluten-free diet is extremely halthy. The human digestive system was not meant to handle wheat and gluten – so most people can benefit from being gluten-free. It’s better to look upon the diagnoss as a blessing rather than a curse – and let your family and friends know this – a positive mindset will do more to have them help you. Better to say I have the disease but it doesn’t have me.
June 14th, 2011 at 3:23 am
Keep it simple. There is a steep learning curve to baked goods, sauces, condiments, spices and such but, if you simplify you can take your time and not have to learn it all in a week or two. By simple I mean, revert to the basics. Meat seasoned with salt, pepper, and fresh herbs can be roasted, sauted, broiled, grilled, steamed…. Vegetables can be roasted, steamed, or sauted; just add salt and pepper. Fresh salads are delicious and healthy. Stick to veggies with no toppings until you know what you can include, and make your dressing olive oil and vinegar or lemon juice. Rice and potatos are safe if you want a starch. Fresh fruit is a delicious and healthy desert. Eating this way gives you time to read and learn more about what is safe and what is not. It also helps keep costs down. Eating GF doesn’t have to be more expensive. It becomes so when baked goods are added because of the cost of mixes/flours and other specialized ingredients. My grandmother made bread once a week on ‘baking day’ and when it ran out, they were done till the next week. We have created the ‘need’ for baked goods at every meal. It isn’t a real need. So simplify. Quicker and easier to assemble meals can be made more quickly and more cheaply than you can go out for fast food and get back home. And you will be eating healthier which will result in a happier you.
June 14th, 2011 at 8:17 am
After seeing my weight drop at least 20lbs in a short amount of time, my friends rejoiced with me upon my Celiac diagnosis. They all are now very careful of what they fix when we have a get-together. They tell me all the ingredients in their food dish so I can be informed. I don’t make them go out of their way for me, but they are very attentive to my disease and always want to help.
I think telling them about my disease was the smartest idea. Now my friends are looking out for me when we go to restaurants too. It’s like having your own group of detectives always looking for gluten clues. It’s very comforting, and encouraging. No one decided I was too much work to deal with as I follow all “those food restrictions”. They love me as I am. That’s was a huge part of learning to accept my new gluten free lifestyle.
June 14th, 2011 at 9:06 am
My advice to many of my newbies in my Celiac Support Group is to read labels carefully and learn what contains gluten in these labels. Begin to eat simple foods such as fresh meats, vegetables, and fruits. Join a Support Group and stay connected as many in the group have a wealth of knowledge and will be more than happy to help you on your journey to good health!
June 15th, 2011 at 9:08 am
My advice is to educate yourself about celiac disease. I found the book “Celiac for Dummies” to be very helpful. I also learn a lot from celiac blogs.
June 15th, 2011 at 9:43 am
Unexplained weight loss? Get tested. Can’t loose weight, even on 1000 calorie diet? Get tested.
June 15th, 2011 at 10:27 am
My advice is to listen to your body. If you are craving bread, go buy so gluten free bread and don’t worry about the price or the flavor or anything else. Your body is telling you you want something.
Also, I try to pick up one new gf item every month. It coulb be a new type of pasta, or something in the freezer section, or new veggie chips. I have been stuck in a food rut before, just cooking the same old things, but this helps me explore new recipes and I have found some great new foods (ex. quinoa pasta–I like brown rice pasta, but I LOVE this).
June 15th, 2011 at 12:08 pm
It has taken a long time to be diagnosed, I did not get a clear diagnosis of Celiac disease, but as my Gasterointerologist said, “we really don’t care now that these tests are normal, we KNOW that you have an intolerance to gluten.” The blessing has been that I can go to the grocery store and once I pass up the bakery and the deli, I hit the produce department hard, get a few lean meats and dairy items, dried beans and rice and gluten free pasta. I found the best Brown Rice Pasta at Trader Joe’s, and the rest of it, any store I prefer at the time! Actually, it’s a fun challenge and I am no longer eating things I should not have had in the first place, mainly preservatives. I have learned to embrace it!!!!!
June 15th, 2011 at 2:43 pm
Remember that those good tasting but bizarre crumbly remnants of your new GF baking can make some really wonderful pie crusts or breading. Re purpose those “boo-boos” and use them somewhere else. No need to waste the money.
June 17th, 2011 at 3:39 pm
Don’t cheat and learn to cook and bake for yourself. Home cooking is better for you.
June 17th, 2011 at 5:44 pm
Another piece of advice I’d offer a newbie would be to involve your family. Try gluten free recipes on the whole family & let them tell you what they think. You’ll be surprised what they’ll like & how it will connect you together.
June 18th, 2011 at 1:48 pm
I am very happy that celiac disease is now considered a viable diagnosis in this country and that knowledge about it is expanding exponentially into the mainstram. Although I was diagnosed in 1980 by Carl C. Pfeiffer MD PhD, founding Director of the Princeton (NJ) Brain Bio Center, and immediately began a gluten-free diet, the hidebound medical establishment persisted in perpetuating a meaningless psychiatric label and ignoring the fact that I became optimally functional on a gluten-free diet (with some vitamin and mineral supplements), all the while recovering from anorexia nervosa. In my experience, it (CD) has been almost entirely a “self-help” and often isolating condition. Three decades ago, determining “gluten-free” status involved major detective work, detailed research into ingredients and origins of ingredients, reducing diet to the simplest of components: rice! potatoes! corn! vegetables! fesh fruit! raw nuts! plain yogurt! cheddar cheese! … and trying to ignore ignorant comments by disbelieving friends. My already vegetarian diet (regarded in some conservative quarters as a pathological condition) underwent further refinement to eliminate whole grains.
After thirty-some years of wandering in the wilderness….Thank you, Dr. Leffler!
June 20th, 2011 at 10:48 am
I’m still looking for cookie flour recipe that tastes like the real thing. Too many of the GF flour combos leave my cookies flat and grainy tasting. Although Penzey’s Spice catalog had a great peanut butter, choc. chip cookie recipe that even the non-gf people liked in our family!
June 20th, 2011 at 7:56 pm
You can receive Celiac updates daily from Google. Sometimes the information is helpful.
June 20th, 2011 at 11:34 pm
My advice is to try to stay positive through it all. Life is more than what we eat, so try not to focus on what you can’t have and focus on the good things in life that you do have.
June 21st, 2011 at 10:15 am
I would have to give the following pieces of advice. yes your going to get frustrated because it fels like you can’t eat anything. But it is not true, you just have to get creative. Be open to trying new things, you never know you may REALLY REALLY like them. The final piece of advice would be do not be scared to find a good support group that understands what your going through, and feel free to lean on your friends, your going to need them 🙂
I’ve managed to lose 15 pounds in about 3 months after finding out that i was allergic to gluten.
June 21st, 2011 at 11:11 am
I would advise someone just diagnosed with celiacs to be positive about it. It is not an end to eating good food, it is just the beginning. I’ve been diagnosed just about 2 yrs now, I am 66 years old. Looking back on my life, I see how having this problem caused soooooo many problems for me. Being diagnosed has given me new life, I feel so much better than I have all my life, so be positive, knowing your life will be better being diagnosed. My only regret is that when I was young, there was nothing the doctors of that day knew of celiacs. If it would have been a known disease then, my life would have been so much healthier.
June 21st, 2011 at 11:55 am
Looks like a wonderful resource!
June 21st, 2011 at 12:01 pm
At first it was difficult to go gluten-free; now I love it. I eat better now and actually enjoy cooking and baking and trying out new GF recipes.
June 21st, 2011 at 12:18 pm
My suggestion is to find out if there is a local support group and if so attend their meetings when you can. Sometimes there are speakers to give updated information on the disease and following the gluten free diet. Generally group members bring their home baked gluten free dishes for all to try, along with the recipe for those who want to make it themselves. They also share news about new products on the market as well as give tips on how they cope with the disease. As a local group leader, I also try to read most of the new books which come out, both informational and cook books, and share this information at our group meetings and on our web site. When I was diagnosed in 2000, there was only one book in our local library. Now there are probably 50 with new ones added as they are published.
June 21st, 2011 at 9:14 pm
From what I’ve been reading, and experiencing, I believe I have a celiac sensitivity that has gone undiagnosed since I was young. It will be interesting to read more on this subject.
June 29th, 2011 at 1:50 pm
And the winners are…
1.) Mary from FL
2.) Rose Marie from KY
3.) Dana from AZ
4.) Karen from OR
5.) Eileen from IL
6.) Nancy from PA
Congrats and happy reading!
Be Free!
Kathleen