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Do you have any recommendations / encouragement / suggestions for the newly diagnosed Celiac or gluten intolerant people?

5 replies [Last post]
administrator's picture
Joined: 01/08/2013

Let's help the newly diagnosed.

Kimberly's picture
Joined: 04/16/2013
You'll be fine!

I have SO much advice for the newly diagnosed/new to gluten-free living. Number one- don't panic! Stores have become way more gluten-free friendly over the years, so you're not going to starve. Will you be inconvenienced at times? Very likely, but with some planning ahead it will become a habit you don't have to think twice about (at least that's how it happened for me).

When I first decided to go GF for my son, I spoke to my son's DAN! doctor (DAN! stands for Defeat Autism Now!- I can get way more into that later for anyone wanting to know more about it). Some doctors will tell you not to waste your time, I had a few tell me that actually, but my son's doctor heavily encouraged the diet. He was probably my first actual person in my life to direct me. Prior to that, Google was my advisor. I asked him for some references, which he provided happily, and this was the beginning of a whole new level in my gluten-free journey.

I spoke to some amazing parents on the phone- they had all followed the diet, and all had amazing success stories to share. One of the moms invited me to a local GF/CF support group that met monthly. My first meeting with this tremendously dedicated group of people, mostly parents of children with autism, was one of the best things that has ever happened to me. So many of them had their own recipes, tips on brands, books to share- one of them even had her own little baking business. She'd bring samples of cookies, muffins, brownies- it was so neat bringing my son to an event with things he could eat!

You can also contact your local health food stores and arrange a gluten-free tour, many of them even have seminars you can attend. It's a great way to try before you buy- the only thing worse than spending too much on food is spending too much on food that doesn't even taste good! My local whole foods has tasting events periodically, and the staff can be extremely helpful with any questions.

Repeat after me... digestive enzymes. These little magic capsules have turned some major dietary breeches into a small hiccup in the day. Accidents will most likely happen. If you're like my son, which you're probably not, you try to sneak contraband when mom's not looking. If you're more like me though, you accidentally buy something thinking you read the label, later to realize you just ate crackers with barley in them. It's not as excruciating for me, but my son will have extremely violent digestion issues, followed by hyperactivity, obsessive behaviors, and sleeplessness if he eats the wrong foods. I always have a few digestive enzymes tucked in every bag, just in case. Currently, the ones I have are called Maxi-zyme Caps by Country Life. They help break down gluten as well as casein. There are so many types to choose from, so perhaps you can speak to your health food store supplement specialist to determine your specific needs.

Lastly, make connections with people! If you have a child on the diet, ask their teacher if anyone else in the school is on it. I have given out so many recipes and shopping lists to parents at my son's school- it feels great to know I'm taking some of the scariness out of a lifestyle change. There are so many people who have done the research for you, perhaps even a friend you've yet to meet. Considering you're on this forum, you've already made a great decision for support-filled journey.

Kimberly gf mommy
Andrea's picture
Joined: 04/15/2013
You're not alone.

Read my New Member Introduction.

I thought my life was over. I thought I was headed toward a dark place where every single aspect of my life was going to change--for the worse. It's not true. I agree with a lot of what Kimberly said in her post. Here are my two cents.

People know what gluten free is now. You can actually go into a few restaurants and tell them you need to eat gluten free and they'll know what you're talking about. And *GASP!* some might even have a special menu for you! You're not an outcast at all! I have found that people have become more and more sensitive to the fact that I need to eat certain foods, because I have a real medical condition.

When my mother and I were taking care of my father we read soooo much on the internet. There's even more out there now. You can type anything in that google bar (and be specific!) and what you're looking for will probably come up. If it doesn't, try to find someone online that you can ask. Hey! We're here!

There are other people in your community you can connect with too, as Kimberly again suggested. I'm a teacher, and I can't help but know a lot of people. So, ask. It can't hurt. In my area in New Jersey there are supermarkets that have actually hosted early morning seminars discussing the gluten free options in their stores and where they are located. Perhaps hospitals have classes? There might even be a group in your area? There is one by me!

You're not alone. Those three words helped me. Help is out there and there are people that are more than willing to offer it.

Kristine's picture
Joined: 06/19/2013
Re: Do you have any recommendations / encouragement / ...

Stop trying to row against the current.

Many times, and by many I mean about a thousand, I have said this or something similar to it when my husband was considering indulging in a gluten-full food. I am not kidding that he uses every excuse possible to try to convince me that he will be fine just this once. The last one that he tried was, “when I get more vitamin D from the sun, gluten doesn’t seem to bother me as much.” Right…. And no, we are not ordering pizza! So, my advice is, accept the terms your body has set out. The instruction manual if you will for a feeling good, smoothly processing digestive system for many people means excluding gluten.

The good news is, it gets easier. I now feel that I have read the labels on about 85% of the products in our local grocery store, and I have memorized the ones that say those two magical words: “gluten free”. We are always safe with label-less items like fruits and vegetables. And, although due to circumstances I keep meals pretty simple, there is a wave of new recipe ideas and cookbooks out there now to keep things interesting with gluten free cooking.

Accept gluten free living as a lifestyle, and view it as the pathway to living life strong, and feeling good!

Lucas's picture
Joined: 06/23/2013
Re: Do you have any recommendations / encouragement / ...

Like so many things in life, it's perspective, perspective, perspective.

For the newly diagnosed, the nicest thing to keep in mind is that while it may seem incredibly daunting at first, there are so many other things you can eat! It's harder, perhaps, because if you've been diagnosed with a gluten intolerance or Celiac's than you weren't necessarily choosing this lifestyle. It chose you.

There's a great saying, "When life gives you lemons, make lemonade." Personally, I hate lemonade. So, when life gives me lemons, I mix in a little vodka and serve. My point is, it’s all about perspective! This lifestyle may seem tough at first, but you can live it! You can conquer it! You can adapt to it.

Find ways to get those little things you enjoy and you miss. My girlfriend loves certain foods, and she’s tried all manners of ways to get them in a gluten free form.

Be diligent. There will be bad experiences. Some things will taste awful. Somethings won’t taste the same but won’t be bad. Bread is a big surprise. Gluten free bread is a different texture and has different properties. Toast it up, put some fresh garlic on it, maybe seem cheese and chives, and you’ve a great tasting snack!

It’s all about perspective, and adapting.

If it’s intolerance, rather than a serious disease or Celiac’s, see about digestive enzymes, as noted above. Can't recommend those enough!

There are times when you’ll be in a place where you can’t do anything. As noted by the other users, you’ll make a mistake. You’ll eat something unknowingly. Or maybe, it just looked too good to avoid. Regardless of how it gets in you, chances are it won’t be pretty afterward. If an enzyme works to decrease the effects, give it a try!

There are so many wonderful resources here on the forum and the website! I’ve loved coming here each day, and trying this stuff out myself.

It’s all about perspective. It’s all about your point of view. It’s all about not letting this be a road-block but a new experience you get to share with others!

Who knows, you might even be ahead of the curve. Gluten intolerance is becoming so much more prevalent, we may all be with you shortly! Hang in there, and be awesome.

GFDustin's picture
Joined: 06/28/2013
Re: Do you have any recommendations / encouragement / ...

One piece of encouragement I have to offer is this: Even though gluten is in many of the products you eat, companies are quickly developing gluten-free alternatives to all those foods.

It's a blessing that you didn't grow up years ago when there wasn't a disease called gluten intolerance or celiac. In addition, now that gluten-free has become a sort of trend in the diet world, more and more businesses are coming out with new foods that are gluten-free. Even just a year ago, burger restaurants that didn't offer gluten-free bread are now providing it...and it's actually really good! The texture of regular bread with gluten is what makes it so delicious to eat, and companies have come really close to cloning that same texture. A restaurant in the Pacific Northwest called Burgerville is one example. Many restaurants now include a separate section just for gluten-free items on their menu, and others have really detailed allergen menus that give you choices of foods you can eat or replace. It is definitely a beautiful thing and I am extremely grateful that I only recently became gluten intolerant.

The second piece of encouragement I would like to offer comes with a personal mindset change. When I first became gluten intolerant (or was diagnosed and confirmed I was gluten-intolerant), I was just like you: in shock and a little sad. There were so many foods on the list! But it also made me aware of my current diet, which was at the time unacceptable. I was a college student, and Jack in the Box and pizza were a regular item on my menu. So instead of seeing all the things I could not eat, I turned it around and thought of it as a sign for me to change my diet and become healthier. It was forced upon me by my diet restrictions, but there were still gluten-free unhealthy foods out there. I decided to stop filling my body with junk and turn my health around.

So yes, the gluten-free diet may seem difficult and a mountain to climb in the beginning. After a while though, it will get easier and easier and you will find your groove. Use your diet restrictions as a set of rules to follow and make the choice to be healthy. If you look at it as a blessing, then it will be.