As Bruce (Springsteen) would say: “Is there anybody alive out there??” Yes…it’s 4:57 in the morning. Yes…I’ve been up since 2. Yes…I’ve been working since 3:30. Yes…I’m on my second cup of coffee.
Today’s post is for those who are struggling to maintain the gluten-free diet. I get my share of emails from those who just cannot stay on the diet. Personally, I don’t have that hard of a time staying away from something that is trying to kill me. But that doesn’t mean I don’t get the struggle. Especially for those new to celiac. It suuuucccckkkks.
Here’s an email I received this week:
Dear Gluten Dude,I really need some advice. Last year I started having stomach problems and went through pain and agony for almost 8 months trying to figure out what’s wrong with me. I found out through a scope going down my throat that I have Celiac disease and that I needed my gallbladder out.
Well I’ve been diagnosed with CD since March or April and have still yet to start eating gluten free. I don’t know how to cut out every single little thing that has gluten in it, including medicines I take for other health issues. I don’t know what I need to do. I have yet to sit down with someone who can explain what the heck is going on.
I’m only 16 years old and I feel like I’m killing my self everyday because of eating gluten.
Please help and respond.
Gluten Dude at your service. When my blog was still in diapers (as compared to now, where it’s in the Depends stage), I wrote a five-part series called “How to Go Gluten-Free”. It touched on all aspects of going on the diet: the mental aspect, the desire, eating in and eating out. Since I had about 3 visitors a day back then, I don’t think many read it and if I do say so myself, I think it tackles the subject well.
What I’ll do here is talk about each step briefly and then link to the full blog post for that step. Sound good? Good.
I would think it would also help to reach out to your fellow celiacs for some support. This is a great community here. I launched a forum recently for celiacs to connect with people in their age group. Here it is. I am hopeful this will help you.
Oh…and about your medicines. If your doctor or your pharmacy will not help you (surprise, surprise), try calling the manufacturer directly. If they won’t help you, send me the name of the medication (privately, via email) and I will see if I can find out for you.
Ok…now let’s get you gluten-free!!
How to Go Gluten Free – Part 1: In the Head
It all starts upstairs. If you’ve just gotten diagnosed, your head is spinning. What do I do? Where do I start? Take a breath…relax…I promise you, while not easy, you can and will do this. Before you go crazy emptying the gluten-free shelves at your grocery store (a typical newbie reaction), you need to mentally accept that you can never have gluten again. I will say it again…you can never have gluten again…ever. I know…ouch. You have to rise to the mental challenge or you will never succeed in going gluten free.
READ MORE
How to Go Gluten Free – Part 2: In the Heart
Guess what? You have to WANT to go gluten free. Going gluten free is all about embracing your new lifestyle. You’ve been dealt a pretty shitty hand. Accept it. Embrace it. Take all the negative emotions associated with the many crappy things that come with celiac disease and turn them into positives.
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How to Go Gluten Free – Part 3: In the House
Be the master of your domain. It’s pretty easy to keep gluten out of most of the rooms in your house. The bedroom? Unless you’re into some unusual practices (none of my business), I’d say it’s pretty safe. Bathroom? Should be good. Family room? Iffy if you’ve got kids, but not too bad. But the kitchen? Unless your entire house is gluten-free, this is where the majority of the nasty gluten critters will be lurking. How do you keep it safe?
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How to Go Gluten Free – Part 4: In the Restaurant
When you’ve got celiac disease, going out to eat sucks. I wish I could sugarcoat it for you a little bit, but there are just no two ways around it. Why does a regular person go out to eat? To try new foods. To eat in a different atmosphere. To get waited on. To steal from your kid’s plates when they’re not looking. But almost everything that is fun and spontaneous about eating out can be overshadowed by the anxiety of whether you can get through your ordeal unscathed. Just follow these steps to minimize your risks as much as humanly possible.
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How to Go Gluten Free – Part 5: Now What?
Are you mentally prepared to go gluten free? Check. Are you emotionally committed to a gluten free life? Check. Is your house a gluten free sanctuary? Check. Will you be your own best advocate when going out to eat? Check. Well…you’re off to a great start. You are indeed way ahead of the game. And I wish I could say it’s all downhill from here, but the truth is, my friend, your journey has just begun.
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That’s it. It ain’t easy, but you got this. Now go out there and you do that voodoo that you do so well (movie anyone?).
Oh look…the sun’s coming up. I’ll see you all further on up the road.
Adjusting to something that overhauls your life happens in incremental and mostly unseen stages. You can’t envision it initially and therefore you convince yourself that it will never happen. I am 5 months in myself and can now join the cast of veteran witnesses in testifying that this process DOES happen.
It starts with making small, good decisions everyday like staying gluten free, researching your condition, pushing to maintain your responsibilities of family and work and taking care of yourself when you can. These small decisions that seem tedious every day do lead to physical recovery and mental acceptance.
It also helped me to imagine all the folks in the celiac community, getting up everyday and facing the same challenges I have to face. That sense of shared experience helped me form a new identity and comforted me greatly.
The first brick in the wall, has to be Gluten Free…..without that your body and mind will not be strong enough to help you with the rest.
Well said. Short term goals always lead to long term successes.
Awesome post, Gluten Dude. So much of it is in the heart and in the head. This is spot-on.
Indeed…thanks.
My heart just goes out to the teens who have to go gluten-free without family support. Not sure what else to say, but it gets better. GD has lots of good advice, so you’re in the right place.
Yeah. I’m lucky enough to have a very supportive family. I have been gluten free for 6 years, since I was 8
I started a business for people who are struggling with the gluten free lifestyle. I realized there was a strong need for somone in our community to work with people one on one and say this is how to live gluten free. I don’t want to advertise here, but I have helped people who struggled for over a year go 100% gf. I really just want to help my fellow Celiacs.
Eve,
We need more people like you. 🙂
Thank you for doing what you do.
Thanks Donna V!! 🙂
GD,
Excellent post & advice……but bottom line is YOU have to be ready to take responsibility for your health GF bite by bite.
I would add contact the celiac association website or local chapter…..dietician. It does get easier, but is starts with YOU!
Warm GF regrads,
Absolutely.
I’ve eliminated not just gluten but many other foods from my diet for an entirely new nutrition protocol and it’s like night and day with how I feel. I was trying to explain to my parents the WHY. I think they got it, but kept asking me if I missed “real” food. (“real” food is actually what I’m eating now… processed food does not equal real food just saying). The only thing that I really really really really crave and miss is “real” NY style oooey gooey cheesy pizza. Everything else is meh. Bread, cupcakes… nothing even phases me at this point even if it’s in front of me. My Dad made a very interesting comment. He said, “your body has learned to have your back.” Your #1 is it. It’s all it. My hope and prayer for this young man is that his body starts to have his back very soon.
Hugs, Holly
Yep. I’ve given up almost all dairy, soy and corn. Although the Dudette had real pizza last night and oh my, did it look delish.
It can be difficult for anyone having this disease, but I believe it’s much worse for young people. I was diagnosed a little over a year ago, and shortly after, we had our kids tested just to be safe. My teenage daughter tested positive for CD (sorry, babe). I do most of the cooking, so there’s never a concern about whether or not what she’s eating is safe. For now. When she moves out and goes to college, well, that’s another story. However one of the things I’ve managed to instill in her is the importance of learning how to cook. If you learn to cook, you have the power over what goes in your body. Start with relatively simple things, like scrambled eggs or omelets, then branch out. I realize this may be easier said than done for a 16 year old, but about once a week my 14 year makes dinner for our family. It’s fun and more importantly, it’s good experience. Plus it gives me an opportunity to spend time with my girl. They don’t stay young forever. Sniffle.
For the movie trivia, Blazing Saddles. So wrong, yet so funny.
“Daddy love Froggy. Froggy love Daddy? Ribbit.”
Are you my mom with a different name?
Heh. Since I’m a guy, that would be highly unlikely.
Yeah, but my mom is teaching me to cook and I’m 14.
I changed the name I’m using
When my daughters were diagnosed I was advised to meet with a dietician. The best advice she gave me was to keep it simple at first… She said there was plenty of naturally gluten free things to feed my daughters while I got a handle on the GF diet. She said meat and eggs and fruit and vegetables were all gluten free so start there. So my advice is to start simple and expand the diet slowly.
Go to a gluten free camp. It helped me a lot. Then again, I am 14, but I’ve been going there since I was 8.
Dear Gluten Dude,
Off the subject, but just to let you know what happened to us this past weekend. We are extremely careful where we eat when we go out since we were diagnosed with Celiac over a year ago. We have been living the gluten free life with terrific success and are feeling and looking great. We took a couple who are friends out to dinner at a local, well-known, rather pricey restaurant, which was our friends’ favorite place. We have eaten there before, but not since both of use have been diagnosed with Celiac disease. I called the restaurant to make reservations and said that two of the four people had to have gluten free food as we had Celiac and the answer was “absolutely no problem” that they could accommodate us. We were seated upon arrival and after informing our waiter that two of us were Celiacs, and we had to have everything gluten free, the owner came over and assured us that our food would be closely monitored by her personally in the kitchen to see that our food was completely gluten free and no cross-contamination would occur. So we relaxed and my husband ordered tenderloins without the mushroom gluten sauce and I ordered the grilled salmon without the sauce. We both had steam kale with just butter and nothing else. Our friends ordered their dinners and we all got salads. Our salads where fine and gluten free with no dressing and were delicious. When the entrees came, the tenderloins my husband ordered were full of mushroom gravy and fried breaded potatoes – this was NOT the gluten free dinner he ordered. He called the waiter over and re-explained to him about the gluten problem, gave him a gluten-free sheet to give to the chef and the dinner plate was taken away. When my salmon came, I noticed there was a sauce on it and I questioned the waiter and he said it was just butter. We all started eating, except my husband who was waiting for his gluten free dinner to come. My salmon was delicious but the “just butter” had a taste like there was seasoning in it and it was thicker than regular melted butter, but since I had been told that it was definitely gluten free, I ate it. My husband’s dinner came without the sauce and steamed kale and he finished his dinner. To make a long story short, we paid the bill which was over $300 and all left and went home. After about 45 minutes of arriving home, I had a horrible headache, severe stomach cramps and really bad diarrhea. I knew I been “glutened” and probably by the “just butter” sauce on the salmon. For the entire night and into the day yesterday and this morning I have had stomach cramps and diarrhea. I spent a horrible, sweaty, sleepless night full of pain. We will NEVER eat at this restaurant again. Beside the fact that it was super expensive, the owner lied to us about making sure our food was gluten free. You can never really trust what people tell you any more. This is why we tend to not eat out very much since we were diagnosed, because people do not take you serious and think that having to live gluten free is just a fad. We usually take our own food when we are invited to places, because we do not want to risk our health. Thanks for letting me vent. Have a great day. My day is getting better, but for the past two days it has been Hell!!!
GD-
This post as usual bleeping rocks. For this young guy to be able to find you and have this resource has changed his life. Changed all of ours really. I would just add that I think even though I have had some really awful I can’t do this why is god punishing me type episodes, I wouldn’t trade it. It’s made me stronger. Use your voice, it’s powerful. If something doesn’t seem right don’t eat it. Make kind bars your bestie (Tito’s for us much older types).
Xo-
Jersey Girl
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“The first day I can remember looking in a motto and being able to stand what I saw was the day I had a guitar in my hand.”
Springsteen
Should be mirror not motto. Damn you auto correct….
🙂