Staying Healthy with Celiac Disease: 4 Takeaways from the First Gluten Free Teen Summit
What a loopy couple of weeks! If you observe me on Instagram, Facebook or Twitter, then you understand that I ended June with a bang by means of attending the first annual Gluten Free Teen Summit in Orlando, Florida (aka, Disney World!).
Even though I was invited to attend as a speaker (I gave a presentation on what to do if your college doesn’t have safe gluten free options; most of the information I gave can be found here), I ended up learning a TON from the other gluten free teens, families and speakers. So I thought I’d share four of the key lessons I took away from the Gluten Free Teen Summit about staying healthy with celiac disease as a kid, teen and adult!
1. Follow up care, follow up care, did I mention follow up care ?!?
The summit was lucky sufficient to characteristic Dr. Peter HR Green, Director of the Celiac Disease Center at Columbia University, as its keynote speaker. His presentation become packed with data, but I suppose one of the maximum critical points turned into how critical it is to get observe up care even when you?Ve been identified with celiac disease for numerous years. Like I constantly try and emphasize, I?M no longer a clinical professional; all of the advice I give is primarily based on my non-public experiences as someone with celiac disorder. So I?M now not ashamed to admit that comply with up care become a very new concept to me. None of my doctors had ever added it up, and I rarely saw it mentioned on line.
So what comply with up care do I - and everybody else with celiac disease - need to get? According to Dr. Green, you must get a blood test to test for nutritional deficiencies (especially ferritin, vitamin B12 and nutrition D) every yr. That blood take a look at ought to additionally take a look at your celiac ailment antibodies to make certain which you aren?T by accident eating gluten and still causing irritation and intestinal damage. Dr. Green additionally indicates getting a follow-up biopsy (specially if you were diagnosed with celiac ailment as a child and are transitioning to an person physician) to test for any remaining harm. The intention of each of these checks is to make sure that your gluten unfastened eating regimen goes nicely and doing the entirety it?S alleged to.
2. Be careful and try to eat gluten free...but don't let celiac disease or dietary restrictions control your life.
One of the most hard and arguable moments of Gluten Free Teen Summit was when Dr. Green talked about taking knowledgeable dangers when following a gluten unfastened weight loss program. Obviously, when you have celiac sickness and understand repeat exposures to gluten can purpose intestinal harm and other nasty signs, you and your family likely want to be greater careful while consuming out and worry approximately cross contamination.
However, Dr. Green pointed out people who are hypervigilant about their gluten free diets (to the point of never eating out or only eating things clearly labeled “gluten free,” even vegetables) are actually following a maladaptive thinking process and experience more negative feelings like depression, anxiety, etc. (I know first-hand how dangerous these thoughts can be; after my celiac diagnosis, I became afraid of all food, even "unhealthy" gluten free food, for some time).
This isn’t to say that you should just yell, “YOLO” and eat a wheat-filled Papa John’s pizza. However, you might consider taking educated risks like going out to restaurants that can’t guarantee 100% gluten free meals (which very few restaurants can actually do, these days) but promise to do their best.Getting glutened sucks, and you obviously want to avoid that as much as possible. However, accidents will happen...and the good news is that, according to Dr. Green, even if you feel like you’re dying when you’re glutened, you’re not. It would take a lot more repeat, large exposures to gluten to cause a big amount of damage to your intestines.
Ultimately, you have to do what you think makes you feel best - mentally and physically - and find your own balance between being careful to eat gluten free and living your life. Having a healthy mindset about your diet is important for your overall health, though, so try to make sure that celiac disease is part of your life but not ruling it.
Three. Colleges are making large enhancements of their accommodations for gluten loose students.
Like I mentioned earlier, I gave a presentation all about how to survive college if your school doesn’t offer safe, gluten free options. While preparing for my speech, I spent a good amount of time researching gluten free diets in colleges nowadays and was impressed by how many colleges now offer 100% gluten free cafeterias, gluten free certified bakeries, locked rooms with allergy free products and cooking tools, and other accommodations.
Here?S one pro tip I found out from one of the households at the gluten loose Teen Summit: while you touch the dietitian of schools you are considering applying to, ask them to make a pattern gluten unfastened meal so that you can attempt whilst you go to the campus. Not only will this permit you to get a higher idea in their cafeteria's celiac or gluten free protocol, however it additionally lets you see how the meals tastes. After all, we don?T simply need to consume gluten free in college; we?D want to eat delicious food, too!
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| From Generation GF's Instagram page! |
If you?Re questioning approximately the most useful hints (according to Summit attendants) blanketed in my presentation, families regarded to mainly admire my recommendation to:
- Reach out to your college's Disability Resource Center, even if your college has amazing gluten free options and you don't think you'll need any accommodations.
- Request permission to have your own separate, small freezer in your dorm room and/or college apartment for storing emergency gluten free frozen meals, leftovers, other ingredients, etc.
- Get creative with cafeteria accommodations, like when I asked to be able to take food out of the cafeteria to ensure I'd have time to get all the calories I needed.
I ended my presentation by saying that going to college with celiac disease or while needing a gluten free diet can be challenging...however, YOU have the power to shape your college experience by researching, educating others and always advocating for yourself and your health! To find out more about the college presentations at the Gluten Free Teen Summit, check out this awesome recap.
Four. Repeat after me: "I am now not my disease."
At one point during the Gluten Free Teen Summit, I got to take part in a teen panel in which I and other gluten free teens answered common questions about living gluten free. One of the most heartbreaking moments was when we were asked who ever felt like a burden because of their dietary limitations...and almost everyone in the room (including me) raised their hand.
I don’t think anyone offered a “solution” to this problematic feeling, but speakers did try to emphasize that celiac disease (or gluten intolerance, etc) is onlypart of your identity, not your whole identity. Yes, sometimes our dietary restrictions can make us feel "high maintenance." Yes, celiac disease, gluten intolerance or another medical condition that requires a certain diet can really feel like a big part of who we are.
However, what the Gluten Free Teen Summit in reality proved to me changed into that our weight-reduction plan is more a point of connection than an identity. It was super to watch just how quickly all the gluten unfastened teens bonded...But additionally to recognise simply how exceptional everyone who ate the equal weight loss program truely turned into. I'm never ashamed of my celiac disease or try to hide my diagnosis from others, however I do try to don't forget that I am also a university student, a foodie, a writer, a daughter, a sister and so much more than only a celiac - and I hope this publish can remind you of all the amazing different identities you have except the one tied in your medical diagnosis.
The First Gluten Free Teen Summit: A Summary
If I had to describe how I felt at the end of the Gluten Free Teen Summit in one word, it would have to be "grateful." Grateful to meet gluten free eaters and experts from all over the United States, including two of my fave online blogging pals - Erica from Celiac and the Beast and Taylor from Hale Life - in person for the first time. Grateful to hear of new groundbreaking developments in the gluten free community, like pills that could help celiacs feel even healthier on a gluten free diet. Grateful to experience three days where everyone just "got it" and we could learn and grow from one another's stories.
Like this post? Tweet me some love by clicking here: "Have #celiacdisease, need to eat #glutenfree or know someone who does? Check out everything I learned about staying healthy with #celiac at the first annual #GFTeenSummit! Read it all here --> http://bit.ly/2KqEOmR"
And, of course, grateful that Generation Gluten Free and The Gluten Intolerance Group let me be a part of this inaugural event! Even if you weren't able to attend, I hope that this post taught you something new, helped you feel more connected to the gluten free community or, as cliche as it sounds, let you feel a little bit of that Disney World magic!No questions these days. Just tell me your thoughts!
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