Open Thread: What advice would you give someone who has just started a gluten free diet?

Hi everyone,

I haven’t dropped off the face of the earth quite yet. The blog has been a bit lonely since I’ve had to take a blogging hiatus, so I thought I’d see if you, my readers, are interested in conversing among yourselves.

Scroll down to the comments section and leave your best advice and encouragement for someone who is new to a gluten free diet. Then come back frequently to check the comments and see what everyone else has been saying.

And, if there is another topic that you’d like to discuss in this manner, drop me a note at maryfrances at glutenfreecookingschool dot com.

Have a great day everybody =)

Comments

  1. My best advice and encouragement for newbies is don’t be discouraged. This is WAY easier than you think. You don’t have to learn to bake if you don’t want to, but you do have to learn to read labels, and hey, that’s something we should all be doing a LOT more of anyway, so consider this an incentive to jump on the bandwagon. The internet is your friend – there are tons of us out here and we’re all talkin’ food. You don’t have to give up all of your favorite things, but you do have to change the way you shop and think about food. The easiest thing to do at first, which you won’t like, is to just lay off bread and pasta products entirely for about a month. I think this is easiest because you don’t have to be afraid of what you’re eating, you guarantee a chance to start healing and feeling better, and you will jumpstart the change in your relationship with food. Then you can start experimenting with GF breads. And there are a LOT of them out there. Some people swear by one that others won’t touch, so you’ll have to experiment. And remember, if you don’t like one, freeze it for breadcrumbs later. I could go on but i’m sure others have more to add.

  2. My advice to those newly diagnosed is to find resources in your environment that will make adhering to a gluten free diet easier. Join a local support group to find which restaurants and grocery stores offer gluten free options (or surf the web for this information if a local support group does not exist). Also, check to see if there are any specialty bakeries or gluten free cooking classes offered in your area and where you can locate and/or order gluten free flours and other ingredients, such as baking powder, to use in cooking/baking. Be savy and scout out several options in order to obtain the best prices.
    Above all and before anything else, educate yourself on the intricacies of a gluten free diet by seeing a dietitian and be able to read labels carefully. Seeing a dietitian regularly at first and then annually can only help you achieve gluten free diet compliance and be knowledgeable of the best resources available to you. Furthermore, do not keep loved ones and friends in the dark. Explain to them what a gluten free diet entails and show them how you can still eat out with them and go to parties with them despite your new special dietary needs. Most likely they will be supportive and understanding if you include them in your disclosure. If you are at a loss for how to do this then seek counseling by a dietitian in your area who specializes in gluten free diets and who can help you identify all resources (and the best ones!) available to you. Having social support is extremely important in achieving gluten free diet compliance. Being okay with having to follow a gluten free diet and being optimistic about it with friends and family will make them more optimistic about it too.

  3. My advice would be work on the simple things first. Don’t try and change your entire diet all at once. Like Gaile said, cutting out all breads and pastas will go a long way to getting you to completely gluten free, and it doesn’t require a lot of time or knowledge about GF cooking. Once you’ve done that you’ll start feeling a lot better, and you’ll be motivated to change more things in your diet.

    Another good thing to do is find an easy GF bread mix (like Bob’s Red Mill) and start making that when you need it. You can do a lot of things as long as you have bread, and it’s comforting to know that you can at least have a sandwich if nothing else works out.

    Third, I recommend taking advantage of the many GF resources out there. Books on eating GF, cookbooks, blogs, online groups, etc… There are lots of people out there that have done what you are doing and many of them are more than willing to help you out. Don’t try to do everything yourself – you will definitely get discouraged and find yourself wanting to go the easy route.

    Lastly, keep your chin up =) Going GF is probably not something that anyone would choose, but it can help effect some very good changes in your life. Once you’ve got the GF thing down, try improving other things in your diet. Or just experiment with other new ways of cooking. Having a good attitude and keeping things fun will go a long way to helping you stay GF more easily.

  4. Think in 4 categories: Meat, Beans, Veggies, and Rice. That’s been my mantra for almost 2 years now.

    Also: Expect to feel isolated, very isolated. You will shed many tears at the sight of food (others eating in front of you) and the mere thought of food (trying to figure it all out). Even though the gluten-free crowd is growing, most social eating is not very friendly to the food-issues crowd. Eventually it will all feel “normal” to you, even the Hauling Your Own Food To Every Event gig that you have to do.

  5. What worked best for me was the internet. If you do not live in an area with a support group, get out on the internet. Check the blogs and there are even on line support groups. I was diagnosed four years ago and I still do not have it mastered yet. There is so much useful information out there and information that you would not even think to ask yourself.

  6. Stephanie S says:

    My best advice is don’t be afraid to eat out. I’m in Toronto for training and the manager of the Moxies custom made dinner for me, two nights in a row, (he turned out to be a celiac himself) and it was absolutely declicious and my companions wanted my food. If your frustrated, head to the nearest big franchise chain and tell them your hungry, they will feed you.

  7. I have been free from foods including wheat, yeast, dairy, soy, peanuts, pineapple, and a few others for about four years now at the age of 15. My best advise for anyone that is changing their diet due to allergies or any other circumstance, is not to be afraid to try something new. There are so many great foods out there and all you need to do is explore them. Experiment with the old foods too. Create something new. Like Thomas Edison said, “I have only found the many ways not to make a light bulb.” So even if the recipe turns out to be a disaster, now you know that those certain ingrediants do not taste good together, so try again. I always remember the movie Ratatouille and how the chef says that anyone can cook but only the fearless can be great!!! Do not be embarrased of your “special diet” either. Many people will be intreguiged and have a genuine interest in what you are eating because it is a common interest that people share……. food. Don’t forget to write down the recipes that are good so that you can revisit them later and share them with others. I made the mistake of not doing that so now I have to go back and try to remember a whole bunch of different things.
    Overall, enjoy life as it is because there is not much time in it and do not let a single thing like allergies or a restriction on food bog you down. Experiment, be daring, and live a life that will bring you joy even if you have a small restriction. Break through the barrier and live as if nothing can hold you back.

  8. my advice would be to not freak out. It is a shock of a diagnosis, but the world has not stopped spinning.
    Take the time you need to mourn, but then pull youself up and go walk the aisles at Whole Foods and Trader Joe’s. Get some Tinkyada pasta and make a big ol’ pan of lasagna.
    drink wine.
    laugh.
    it will be okay. You will learn more in the first month after your diagnosis than you did as a newborn. The learning curve is amazing. The Internet (specifically blogs) rock in helping you realize that there are *real* people out there living life large.
    xox
    steph

  9. Like any change, it can be a difficult transition but by doing only a small amount of research you can change your diet very easily.

    1. List all the foods you love that you now have to “give up”.
    (For example, macaroni and cheese winter comfort food – buy rice pasta available at almost every grocery store. Pizza? Go to your local health food store and look for GF pizza crust mix, search online for GF Pizza and the city in which you live.)

    2. Meal planning – this is important for a lot of reasons and grocery shopping will take longer for about the first month but you’ll get used to it very quickly. Use resources like Celiac Canada (http://www.penny.ca/Celiac-canada.htm) and Celiac.com for ingredient lists that are considered gluten….a lot of cereals that are made from rice will be completely off limits because they use an ingredient called barley malt flavoring that is made from wheat. Use this list to compare against ingredient lists – http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html
    Use your local health food store as part of your grocery shopping routine. Typically the employees of health food stores are quite knowledgeable and eager to help.
    I have used grocery delivery services – shopping online with the ability to view the ingredient list from your computer is very helpful. Grocerygateway.com in the GTA, Freshdirect.com in the NYC area, etc.

    3. Eating out – Because the amount of people with food allergies is growing at a rapid rate, most eat-in chain restaurants are used to these type of requests. Also, because they don’t want law suits (particularly applicable to peanut and shellfish allergies the management can be quite diligent about educating their staff). Don’t be discouraged by the ignorant teenage waiter/waitress who asks, “What’s gluten?”. It will get easier. Any chain restaurant will either have nutrition/allergy information on their website or will make it available to you by requesting it via email. Fast food is also made available on every fast food website. If you have a question, email the company and you’ll get a pretty quick response. There are a lot of GF bloggers out there with french fry lists – some fast food chains have GF fries and some do not. Cross-contamination is one of the things you have to be aware of. For example, Pizza Hut has released statements that since their pizza is hand tossed, they cannot say that anything in their restaurant is GF including the soda because trace amounts of gluten have been found in all of their food because of the hand tossed pizza. Any GF food fried in the same fryer as foods containing gluten is considered cross contaminated and unsafe for GF people.

    4. UNDERSTAND YOUR ILLNESS. If you are a celiac, completely understand what type of disease you have. A lot of people misunderstand what that means at first. Since lactose intolerance has some of the same symptoms – digestive problems, etc people think that if they cheat on their GF diet they will just have to endure a few digestive problems and think that giving into cravings occasionally is ok. Celiac disease is not a simple food intolerance. Repeated exposure to gluten can cause severe and if left untreated, fatal vitamin and mineral deficiencies, intestinal cancer, and other severe complications or diseases. Below are a list of excerpts and sources explaining the seriousness of the disease. Once you understand what is happening to your internal organs, you can change your life with the knowledge that you will live a longer and healthier life.

    From: http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=3
    “Normally, your small intestine is lined with tiny, hair-like projections called villi. Resembling the deep pile of a plush carpet on a microscopic scale, villi work to absorb vitamins, minerals and other nutrients from the food you eat. Celiac disease results in damage to the villi. Without villi, the inner surface of the small intestine becomes less like a plush carpet and more like a tile floor, and your body is unable to absorb nutrients necessary for health and growth. Instead, nutrients such as fat, protein, vitamins and minerals are eliminated with your stool.”

    From: http://www.mayoclinic.com/health/celiac-disease/DS00319
    “When a person with celiac disease eats foods containing gluten, an immune reaction occurs in the small intestine, resulting in damage to the surface of the small intestine and an inability to absorb certain nutrients from food.
    Eventually, decreased absorption of nutrients (malabsorption) can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment, which can lead to other illnesses. ”

    From: http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=7
    “Cancer. People with celiac disease who don’t maintain a gluten-free diet also have a greater chance of getting one of several forms of cancer, especially intestinal lymphoma and bowel cancer.
    Neurological complications. Celiac disease has also been associated with disorders of the nervous system, including seizures (epilepsy) and nerve damage (peripheral neuropathy).”

    From: http://www.anemia.org/patients/glossary/
    “Celiac Disease
    Disorder that causes damage to the intestines when gluten is eaten (protein in grains like wheat, oats, rye, and barley). Celiac disease can lead to iron deficiency and iron deficiency anemia because of bleeding from the small intestine.”

    5. Finally, Celiac disease is considered an auto-immune disease. Once a person has one, they have the potential of developing more auto-immune type diseases. I was first diagnosed with adrenal gland failure, chronic auto-immune thyroiditis (or Hashimoto’s disease), and then celiac disease. The complications have been severe and the iron deficiency, potassium deficiency, and mercury poisoning (caused from adrenal gland failure) are just a small part of the complications. Make sure you push your doctors to further investigate. It has taken me 6 years to be diagnosed. Ask your doctors for a full vitamin and mineral blood analysis, heavy metal and toxin blood analysis, and look for doctors who are very familiar with auto-immune diseases. Ask for a
    C-reative protein (CRP) test. (http://en.wikipedia.org/wiki/C-reactive_protein) This is an inflammatory marker and commonly used to test for heart disease risk factors. The lab reported that anything over 10 was a heart attack risk. My test came back at 43. Although doctors do not fully understand how to apply the CRP rating to treatment, mine explained my severe chronic pain. The inflammatory marker was off the charts and the doctors don’t don’t know which disease caused this high marker. Most doctors were treating my symptoms – severe high blood pressure, inability to process fluids resulting in a the necessity of a high dose of diuretic, severe fatigue, chronic pain, headaches, digestive problems, and many more. I am in weekly IV therapy now, also called chelation therapy, to treat the mercury poisoning but also to administer my vitamins and minerals intravenously to bypass my damaged intestines. I also take a long list of supplements daily.

    Lastly, I was a healthy 23 year old woman 6 1/2 years ago. I grew up with parents who were very into health food, organic produce before it was widely accepted, and continued that mindset into adulthood. I was in a severe car accident at the age of 23 that triggered these problems. At 29, I now am lucky to hide my illness by working from home and for the last six months, from bed. I am hoping to be able to work from my home office again with the help of my new doctors and work towards recovery.

  10. Carolyn Patrick says:

    I have been gluten free since 1986. The best advice I can give is read labels on every thing you buy. Every day is a learning experience. If you mess up and eat something try to remember what it was and go from there. When you learn how to eat it is not so bad.
    Carolyn Patrick

  11. The best advice I have, from my own experience, is the find the positive voices. There are certainly lots of hard parts to going gluten free but there is much good. Good health, so much good food, the amazing ways friends will suprise you by showing up with a gluten free goodie they bought at Whole Foods just for you. It will happen. People do care. Read good sources (books and online) and get into all the GF food blogs and begin to realize how much amazingly good GF food is out there here and now. It’s not too bad a time to be going gluten free.

  12. My advice is that anything is possible! My boyfriend was very discouraged by what he couldn’t eat so when he’d tell me something he wished he could have I would find a way to make it allergy free. Find a recipe, then start substituting!

    Oh! And keep a list of all the foods you/he/she cannot eat (including names of hidden gluten) with you – on the fridge and in your wallet so you have it handy at all times.

    Last one – TALK to restaurant staff, friends, family when going out and let them know you have food allergies and find out what they have to offer before going over there. Its better to be real picky than to be sick. And you can always bring something with you if need be.

    Layne! :)

  13. Being misdiagnosed my whole life, I was pretty happy when I discovered that I had a gluten allergy. This occurred after I read an article about a 3rd grader’s science project which was a key to diagnosing his disease. I realized that this was my problem. A Gluten free diet was liberating. It was good to be alive. Five years later, and no closer to diagnosis, I speak about CD like a new religion. Two people from my office now know they have CD. And in five years, I can see that there are more products available and stores to buy them. Last summer I took a trip to Europe where they are very much in tune with GF diets. I brought cereal and snacks with me and everything worked out fine. Don’t be discouraged! Eating better makes you feel better and look better, too!

Trackbacks

  1. [...] Last weeks open thread went so well that I’d like to try another one. This week you can head down to the comments and leave your most urgent question about living gluten free or you can chime in and answer someone else’s questions. [...]