Many people are under the impression that you’re only sensitive to gluten because you don’t eat enough of it (so sad, but true!) or maybe family members don’t think it’s a big deal and often let children ‘cheat’, how do you handle these issues?
Katie: I never leave my kids with anyone who doesn’t truly understand Celiac disease. Most of are family doesn’t think it’s a big deal so we just don’t eat there.
Amy: I ignore them. I have offended a lot of people over the years but I cannot afford to spend 3 weeks detoxing after a “cheat”
Jen: as our daughter gets older we are being very upfront with friends and family, expressing our desire for caution and not wanting to risk her health over an unnecessary “treat.” We expect them to respect our wishes just as they would on any other issue, and we’ll be sure to provide alternatives so they don’t have to feel like they’re making our daughter feel left out.
Cara: I don’t allow my child out of my sight unless they’re with people that I’m 100% sure thoroughly understand the diet she’s on. And it really takes people a long time to understand just how strict you have to be- I’ve had people (many!) *right* after I got done explaining that she can eat ‘absolutely nothing other than what I provide- she has a severe allergies’ pull a piece of candy/popsicle/cracker/cookie out and hand it to her, and then tell me ‘but it says it’s all natural’ or ‘there’s nothing in this! It’s just a cracker!’. I don’t fault them, it’s hard to remember and understand, and our culture just isn’t used to food limitations so parents have to be very careful. Neurotic might be an accurate description 😉
Michele: Argh- letting the children “cheat” is so frustrating. I haven’t found a fool-proof way around that, and typically have to make sure we are supervising, until a full understanding has been established. I also try to provide allergen-free options of special treats, snacks, etc. that loving family members may want to give our children (such as gluten-free cookies/mixes, ice cream cones, homemade ice cream, etc). This helps make things easier for them to “spoil” the little ones safely, and encourage them to spend time together, building relationships.
Kat: I’m of a minority of people with Celiac disease who also get a rash called Dermatitis Herpetiformis. It’s nasty looking and for me it lasts for over 5 days. That alone has been enough for me to prove to people that this is not a sensitivity from not letting my body get used to eating gluten. I find that also explaining to people the amount of pain I feel when I do ingest gluten helps convey the message that no amount is safe. Pain seems to resonate more with people who don’t understand the disease, more so than having an upset stomach, bloating, or an immune system reaction.
Rachel: I think our families have seen first hand what we have to go through if we cheat and we have other (nieces/nephews) with nut allergies that they are sensitive to helping us eat GF. If some one has “good” ideas/advise about being GF I usually just listen kindly and tell them “thanks for thinking of me, however that has not been my experience with my body.” Then I proceed to them them that gluten allergies can look different in different people that is part of the reason it is difficult to diagnose properly.
What do you wish someone would have told you when you went gluten free?
Jen: the proper recipe for nut flour pancakes 🙂
Emily: That our bodies don’t need that many grains! I kept trying to make up my 6 servings of wheat with other grains and it was so trying. Then I realized that we don’t really need that many grains. The handful of nuts or carrots was going to do more for me than a slice of gluten free bread. Also, to watch out. There are a lot of unhealthy GF products. So many are almost all made up of starch. Talk about a blood sugar rush! Think about replacing gluten with protein snacks.
Michele: Enjoy it!
Liz: I wish they would have told me how difficult the social implications are. People lose friendships over food. Believe it or not, but these are the kind of stories people in the nutrition community hear and commiserate over. Food plays such a large and important role in human bonding and human experiences. Once we lose that connection, it can be difficult to understand each other. People have always gathered around food and defined themselves by what they ate/eat. When we put the same food in our bodies as our family and friends, we have the same energy. Once we change what we eat, we have a different energy and become more conscious beings. That changes the dynamics of the relationship.
Kat: I wish someone had told me that going gluten-free was not enough. You have to re-nourish your body and provide enough nutrients to make up for the years of undernourishment you’ve undoubtedly gone through. It is not sufficient to take a B12 supplement and multi-vitamin. The body needs lots of vitamins, minerals, fats and proteins to repair and rebuild the digestive system. Eating whole nourishing foods is the most important step in recovering from Celiac Disease, or any digestive disease.
Rachel: That it will get easier! You don’t need to go broke going GF, just change your thinking and think outside the BOX (literally) Get connected with other people who are doing this successfully it makes it so much easier!
What are your favorite Gluten Free Resources?
Katie: Gluten Free Mom
Liz: My Examiner articles, Gluten-Free Works is also a great site that collects GF info from around the web.
Kat: My favorite resources are all the Primal/Paleo blogs and sites out there. While I follow the Specific Carbohydrate Diet myself, I found a lot of inspiration and fun food ideas from the Primal crowd. I like that all of the recipes are using naturally gluten-free ingredients and there is no so much focus on baked goods and sweets as other gluten-free sites. It’s nice to see an example of what we can naturally eat, instead of complicated recipes attempting to recreate what made us sick in the first place.
If you’d like to mention something I didn’t think of, please feel free!
Jen: I think going gluten free is a great start, but it’s easy to just replace starches with starches and not kick the underlying issues, which is why I highly recommend GAPS. We saw huge benefits in our family when we were only limiting the starches, and not doing anything else to improve our diet. For those that truly are allergic to gluten (and don’t have other underlying digestive issues) I don’t think it is that hard to use gluten-less flours, and learn to cook with real food, once you get used to it. The hard time is the transition, and learning a new way of cooking and eating – but there are certainly enough real-food bloggers and friends to help you through it!
Michele: I post a gluten-free meal plan every week at Frugal Granola, so you’re welcome to stop by for inspiration!
Kat: My biggest regret was not going gluten-free earlier. The gluten-free diet was suggested to be on a message board a few times and by people at health food stores. I stumbled across it many times while researching symptoms online. And yet, it took me years to convince myself to try it. I wish I could go back and just try it out even for only a week. It’s not at all as hard as it seems. In fact, it’s harder to stay sick.
I want to say a huge thank you to all of you who helped me out and were a part of this gluten free panel! Your words of advice have been terrific!
You can also check out all of the posts from the week we focused on wheat and gluten:
The Silent Cause to Poor Health – a fabulous, everyone should listen to podcast
The Transition to Gluten Free – a guest post by Kat from SCDKat.com
Gluten Free Easily – a guest post from Shirley of GFE
Gluten, Grains, and Children with Developmental Issues – guest post by Cara or Health, Home, Happiness