Going Gluten-Free: Where do I start?

Celiac Disease, Health August 6, 2011

Yesterday morning I had my upper endoscopy.  Although the procedure itself is pretty easy on the body, the anaesthesia medication knocked me out all day.  I have absolutely no memory of getting dressed, getting in the car, drinking a milkshake and getting into bed.  Apparently I was chatting with the doctor and giving goofy grins to my friends and family until I passed out at home.  I spent most of the day in bed trying to sleep off the drugs.  When I woke up enough to have a coherent conversation with Jeff, he told me that we would get the biopsy results in a week but the doctor thought that I looked like a classic case of Celiac disease.

Celiac disease.  I have had a little over a month to process the fact that I probably have to give up gluten for good.  This has given me time to mourn over the things that I will never get to eat or drink again.  At the top of my list are my favorite 9-grain bread and a cold wheat microbrew.  You can be sure that I enjoyed both of those things all month as I waited for my test.  But now that the test is over, so is the time of mourning.  Now I choose to be thankful.  Thankful that there is a name for the thing that has been hurting my body and sapping my energy.  Thankful that there are so many good things that I get to eat.  Thankful that there are so many wonderful people that have gone before me to pave the way with helpful resources and delicious recipes.

So now that I’m ready, where do I start?  As a dietitian, I have a working knowledge of the disease, but the practical side will take some getting used to.  Today I will be cleaning out my pantry and refrigerator/freezer.  Everything that is gluten-free will be put on the top shelf.  My sauces and butters will be labeled with brightly colored tape so that they won’t be contaminated.  The kitchen will get a good cleaning, and I will probably be investing in some new utensils that will only be used for gluten-free cooking.  At some point, I will have to get my own toaster too.

I am trying to do this step-by-step so that I don’t get overwhelmed.  I am so ready to get started on the path towards healing and feeling better.  If you have any tips, please share them.  I am open to any and all help I can get.  And if you have any gluten-free iPhone apps that are a must-have, please share those too!

Thank you all for your kind comments on my last post.  I truly appreciate you!

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  • Lauren August 6, 2011 at 3:44 pm

    I am so sorry you have to go threw this but so happy there is a way for you to feel better. I have been dairy free and wheat free for about a year due to an allergy. I have had many stomach issues and also been told IBS sooooo many times is ridiculous. Recently I was tested for candida and it was VERY high so I now have a very restricitive diet and am mourning sugar. I have many good recipes that I have collected through the years from blogs that I would love to share. I dont like allot of the store bought GF food because they use white rice and potatoes- very starchy. Plus homemade always taste better. If you are interested please email me. laurenrporter@gmail.com! I would love to share!

  • Alysa August 6, 2011 at 4:24 pm

    Thanks Lauren! I will email you.

  • jen August 6, 2011 at 4:50 pm

    I saw gluten- free microbrews at a local store yesterday. Sorghum, oatmeal, and rice-based.

  • EA-The Spicy RD August 6, 2011 at 5:16 pm

    So glad you had the endoscopy and can now be gluten-free! It sounds like you are off to a great start,and while there is definitely an adjustment period, from my experience you won't be mourning gluten after long. As for apps, there is th Triumph Dining guide and shopping app, plus the Gluten Free Registry guide both of which I like. And, always happy to chat and offer support!

  • Becky August 6, 2011 at 6:06 pm

    It's easier at the start to move your whole family GF until you get the hang of it. At least at home. Also, start with the meals you already like that are GF so it's easier and slowly add new recipes.
    We found Mexican food, when using corn tortillas, is almost always GF, especially if you make your own sauces. You'll have to shred your own cheese, though. The shredded kind is often coated with something wheat-based.
    Also, Asian food is frequently GF. The next step I'd take is finding a good home made GF bread recipe. Good luck and read your labels. One jar of something containing modified food starch lays my family member up for a WEEK. No bueno.

  • Caroline August 7, 2011 at 3:46 am

    I cut gluten out of my diet a couple weeks ago and am doing OK so far. My biggest piece of advice is to be prepared. As long as I have food in my house that I can eat and snacks in my purse when I am out, the fact that I can't just stop and get something quick hasn't bothered me.

    There is a cookbook called Babycakes that has really good recipes for muffins, cakes, cookies and other treats. It is a bakery out of NY that makes everything gluten, dairy, egg and sugar free. I have tried a couple of the recipes and have been really impressed. Barnes & Noble sells the cookbook.

    I hope you get to feeling better very soon!

  • Caroline August 7, 2011 at 3:58 am

    I meant to provide you with this link in my previous post. This website helped me tremendously.


  • Leah August 7, 2011 at 4:44 am

    First of all, I have throughly enjoyed all of your posts. As a fellow RD, you are truely inspiring to me!
    My cousins have been living gluten free and I am always cooking/baking foods for them to eat.
    I often think about how I should go and get tested for celiac, and maybe it would explain my issues. But, I am scared if the result is to be gluten free forever.
    So, with that being said, I give you congrats for taking this news with the confidence that you have. Good luck finding some of the best gluten free recipes!


  • Jiggs August 7, 2011 at 1:58 pm

    Here's a link to the Campbell's Soup page about their gluten free products. I discovered ith while making sure I could use Swanson broths in my recipes. I'll see what recipes I have that might be of interest and will forward those on to you. http://www.campbellsoupcompany.com/pdf/FAQ_GlutenFreeProductList.pdf
    It's good that you know what you need to work on now to start feeling better. And, by the way, Lauren is a good friend and knows her stuff. Just wish she had mentioned her own allergies to me before I made them my creamy white chile… Ü I'll have to come up with some new options for them, and will pass them on to you too.

  • Caitlin August 7, 2011 at 5:59 pm

    Hi Alysa- I just started reading through your blog and just love it (especially your golden retriever…I have one too:)

    I am sorry that you are having to make such big adjustments but also can understand a sense of relief as you can now feel empowered over taking control of your own health. My husband has plans to get tested for celiac very soon and I suspect I will be needing to read a lot about your journey to help him too. Thanks for sharing!

  • Stephanie August 7, 2011 at 6:36 pm

    Hi Alysa –

    I've been reading your blog for a while but have never posted! I was diagnosed with celiac disease after having my first child, although I think I'd had it for long before.

    I have a blog and posted some tips for the first few weeks of going gluten free and ideas for food. I would recommend getting yourself a new toaster and non-stick pans right away! My whole family eats gluten free, it is easier that way, and we are pretty sure my son needs to anyway.

    Here is the post: http://becominggreenblog.com/gluten-free/gluten-free-meal-ideas/

    I'm planning on blogging more too so that might give you some more ideas in the future.

    I'm actually studying to becoming an RD too!! After my celiac disease and my sons food allergies I've become really interested in nutrition. How great that you are already an RD!! If I can help anymore please let me know. My email is on my blog.


  • Debra Riedesel RD LD August 7, 2011 at 6:40 pm

    I had a client recently test positive for celiac and thought it would be a good idea to recommend a few support groups that you may want to look into too.

    I wanted to share a few more resources with you to look at:
    1)Gluten Intolerance Group (GIG) is the group I actually belong to. They have some great information on their website. You can download many of their articles. There is also a list of support groups in NY, there are a few others in the City. You can find them at http://www.gluten.net but here’s a convenient link to downloads here http://www.gluten.net/learn/downloads.aspx
    2)Celiac Spru Association (CSA) These guys are the largest celiac group and have been around a long time you’ll find them here: http://www.csaceliacs.org/
    3)The Celiac Foundation http://www.celiac.org/ mostly dedicated to fundraising for research and raising awareness. Great downloadable resources too.
    4)National Foundation for Celiac Awareness http://www.celiaccentral.org/ These guys are very active and have some very good info on their website. They also have a Celiac RD working for them. They offer some great info about community activities.

    I also highly recommend Trica Thompson M.S. RD's website http://www.glutenfreedietitian.com/index.php She's actually very active with ADA and has written several excellent books. She's the original Gluten-Free RD…. in my opinion of course. Tricia also recently started the new Gluten-Free Watchdog a website in which I support. She verifies GF products for truth in labeling on ppm…check it out here: http://www.glutenfreewatchdog.org/
    There are thousands of GF foodie websites and you’ll find links to them everywhere. I do like The Gluten-free Goddess, (Karina’s kitchen)she started her blog right after diagnosis and has had a time of it discovering she also has other food sensitivities. You might find the Gluten free girl (Shauna Ahern) & her chef husband’s blog interesting. She's written a book too. http://glutenfreegirl.com/

    Get acquainted with Dr. Alessio Fasano at The University of Maryland Center for Celiac Disease http://celiaccenter.org/ as well as the University of Chicago Celiac Disease Center research- http://www.celiacdisease.net/ both are highly regarded and are doing some fabulous research.

    There are other wonderful RD's out there like Shelly Case RD…out of Canada. I recommend her book too.

    Good luck, hope that's at least a little helpful.

  • Alysa August 7, 2011 at 9:50 pm

    Jen, thanks for the comment. I checked out the beer section at Sprouts today and saw one six-pack that was gluten free for $10. I guess the days of buying the $5.99 Shiner Bock specials are over!

  • Alysa August 7, 2011 at 9:51 pm

    EA, thank you for all of your support so far! I am glad to have the endoscopy over with too. The thing I'm trying to figure out is whether or not to make our home gluten-free. I feel like there are crumbs everywhere no matter how well I clean!

  • Alysa August 7, 2011 at 9:54 pm

    Becky, thanks for the advice. As much as I hate baking, I know that the best bread will come out of my kitchen. I checked out some of the g-free bread at the store today and they felt like bricks!

  • Alysa August 7, 2011 at 9:55 pm

    Caroline, thanks for the recommendation! I think you are totally right about being prepared. I don't want to be caught somewhere with nothing to eat!

  • Alysa August 7, 2011 at 9:56 pm

    Leah, thank you for commenting! I think I have been scared for a while to think about cutting out gluten, but these past few months have been so terrible that I am just ready to feel better. Let me know if you get tested!

  • Alysa August 7, 2011 at 10:00 pm

    Jiggs, thanks for the link. Let me know what you come up with!

  • Alysa August 7, 2011 at 10:01 pm

    Caitlin, thanks for checking out the blog. Don't you just love golden retrievers? I hope that sharing my journey will help your husband. Let me know when he gets tested!

  • Alysa August 7, 2011 at 10:03 pm

    Stephanie, thank you for commenting! I look forward to checking out your blog post. I have thought about turning our entire kitchen gluten-free, but the thought is a bit overwhelming. I am thankful for all of the advice!

  • xvavaveganx August 8, 2011 at 7:35 pm

    Hello there 🙂 I also cut gluten out of my diet a few months ago. I know it is daunting and a bit scary (I would eat bread every meal of the day if I could!) but you can totally do it. ANd I assure you that you will feel like a new person when you do. My main suggestion is to remain as unprocessed as possible and you will have a larger array of more naturally gluten free foods. Not only will you feel better from cutting out gluten, but you will feel better from eating a very clean diet. My other suggestion is to just be careful of hidden wheat in some products you'd never expect. I had NO clue that there was wheat in soy sauce until I started researching a gluten free diet.

    I hope that this helps, it's just what I've noticed in the past few months. Best of luck to you!

  • Jaimie August 11, 2011 at 1:37 pm

    When my daughter was diagnosed w/ CD nearly 2 years ago (at age 17), she received a care package of GF products from UChicago. She was thrilled with it and really appreciated the opportunity to sample a number of items before we bought them. (There were some items she didn't care for, and it was good to find out before we bought them, as GF products can be quite expensive and/or difficult to find.) It is available to people who have been diagnosed within the last 3 months by endoscopic biopsy here: http://www.celiacdisease.net/care-package

    As a fellow dietitian, I understand your comment about "working knowledge" vs. the "practical side". There is a steep learning curve involved in going GF, but it sound like you have an excellent start. If you'd like specific info, feel free to email me at jac674 at hotmail dot com.

    One word of encouragement: at the time of her diagnosis, my daughter was quite ill, malnourished, chronically anemic and underweight, and all during a critical time of growth and development in her life. I worried about her health. However, after 20 months of eating GF, she has grown an inch & put on 20 healthy pounds, she no longer battles the endless fatigue, she shows no sensitivity to lactose (a sure sign that her villi have healed–yea!), and she just feels better. The GF lifestyle may seem overwhelming or just too difficult at first, but the payoff of your good health is SO worth the investment. Good luck to you!

  • My Gluten Story… Part One. » February 27, 2012 at 9:27 pm

    […] know what to watch for. I made it through BlogHer, and when I got home I noticed that my friend Alysa had been diagnosed with Celiac disease while I was gone. I asked about her symptoms and they were […]

  • Stephanie March 2, 2013 at 2:49 pm

    Shiner Bock’s website says Shiner Bock and Shiner Blond are wheat free. But, not barley free.