Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Floydfest 12 Rise And Shine!


LisaRae28

Recommended Posts

LisaRae28 Newbie

Hello, I've been skulking around on here a little while now since I was diagnosed in march but I haven't posted anything yet... These forums have been an invaluable tool for me sorting thru the ins and outs of all this so far and I'm hoping ill be able to ask more questions as I go on but something big is about to happen for me and I'm super excited but still anxious when I consider the food thing... It's my first time going to a music festival gluten free and other than packing my own non-perishable food I've got no ideas. I'm sure we can get ice for our cooler but I know I'm going to have to limit cold items. I was *hoping* someone on here may have some festival experience (it's four days) and could give me some tips :)

I've tried looking some of the vendors up and have found out that some offer gluten free foods that look delicious (like crepes) but also wondered if I should even risk the cross contamination factor? I am fairly newly diagnosed and as of the second biopsy despite following the guidelines I was given I was told there was no improvement but that's another post I guess lol...

I'm really excited about the festival itself so if you have anything bad to say about that I'd appreciate you don't respond at all; however, any advice anyone may have would be greatly appreciated! It's way outside of my comfort zone now to try this but ill be damned if this stupid disease is gonna keep me from livin my life!

Thanx all :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome LisaRae!

 

You are going to have a blast!

 

So here is how I live everyday - whether it is packing my bag for a few hours, all day or traveling.  Prepare for the worst scenario and hope for the best.

 

Being a music festival you have a good chance that there may be a vendor there that is completely gluten free, but I would still pack all my food and use the vendors as a treat if you deem them safe.  Will you be able to exit to your car or just enter once with all your camping supplies?  There is usually ice for sale...but strongly suggest freezing all of your food except for the first day's supply...then pack ice on top of all the frozen food.  So freeze cooked/sliced meat, maybe some ziplocks of chili, beans, potato or rice, then pack some fresh fruits/veggies that don't need refrigeration until cut open, then some packaged munchies...that seems like a good start...I'm sure others will have some great suggestions.

 

Have fun :)

 

Edited to add:  Son usually goes for Kettle Corn at large concerts/fairs -- so far he has never had a problem.

bartfull Rising Star

I'm so jealous! Hot Tuna? Trampled by Turtles? I sure wish I could go!!

 

I have attended more bluegrass festivals than I can remember and at ALL of the big ones, there will be ice for sale and a water truck that goes around with fresh water you can fill your jugs at.

 

I wasn't gluten-free when I went but I brought all of my own food to every one, and some of them lasted six days. If you can, try to suspend the food in your cooler in some kind of netting or it'll get wet as the ice melts. Either that or make sure it is all in tupperware. Eat the things with meat first because by day four, even if it is in the cooler, it will start being "iffy". Save the pasta dishes for later. Your sauce can have meat in it and it'll be OK. I used to cook the pasta before I went and then I'd just boil water on my camp stove and drop it in to warm it.  Things like chili or soups will last longer too. (I guess for some reason meats in liquid last longer.) And yes, take lots of snacky things. Living outdoors makes you HUNGRY!

 

Usually, once you have set up your camp you can drive out and go to the nearest grocery store for hamburger and stuff. DO try to get there early so you can get a spot in the shade. It gets HOT in the tent as soon as the sun comes up and you will probably be up late every night. As good as the music on stage will be, some of the best music at bluegrass festivals takes place around various campsites. Make sure you walk all around the camping area every night and you'll see what I mean. Visitors are always welcomed to listen or to play along.

 

Now, as for the other part of your post - the not healing part - are you sure you're not getting CC'ed? New toaster? Your own condiments so there is no double dipping? New strainer? How about cutting boards and wooden spoons? Did you ditch any scratched plastics or teflon? How's your lipstick, toothpaste, shampoo? Do you kiss a gluten eater before he has thoroughly brushed his teeth?

 

Go to the festival and have a WONDERFUL time. When you get back, we will help you figure the rest of it out. :)

LisaRae28 Newbie

Thank you two so very much for your responses! I hadnt thought of actually freezing most things although i do use tupperware :) and we will be able to leave if need be.. I've been trying to do this thing pretty much on my own and its incredibly frustrating sometimes. I'm realizing there's still a lot of food I can eat and I feel a lot better overall but it's hard sometimes. I saw everyone's posts when I was first diagnosed and was like "look at these neurotic freaks... That's just overkill" but it didnt take long for me to realize I was sadly among those ranks and with normal people that's when I start getting anxious and awkward because even I think this s$#& is weird and I can't really expect them to understand. I have followed all the suggestions I saw on cross contamination and I'm pretty neurotic about it because its hard to know if I've been cross contaminated considering I didn't know what were symptoms from what in the first place and I also apparently start to have symptoms when my iron drops low again (I have to have infusions.) I've been sorta wingin it all with a whole lot of hope and faith and just keep doing what I'm told to dealing with everything as it happens...

But I wanted to say wow because I get so anxious and feel like its my own personal burden and struggle. I feel like it makes me weird and I didn't even want to tell anyone about it let alone ask for much help and wow... Every little bit I open up more about it let alone actually ask for help in any way I get more than what I need in response... I did want to share with y'all the responses I got via email (because y'all taught me from my skulking around when in doubt contact them directly) from across the way productions who make floydfest happen for shiny happy people like me :)

"Great that you reached out to Monique. Yes there will be fresh fruit too.

I will send this on to our vendor coordinnator to see if she can give you some guidance but do realize we are very busy.

We will definitely take your siuggestions and explain these options better next year in the website.

Safe travels and we'll see you soon

AtWP"

And almost immediately afterward

"Lisa,

Most of our vendors offer gluten free options. However, there are very few who are strictly gluten free, meaning they have no gluten in their kitchen. If you are extremely sensitive, I would recommend bringing your own food and going to Goatocado (salads and bowls with quinoa) and Pulp (Acai berry bowls, traditional Brazilian breakfast and lunch. Our global village vendor, Carolina Arepas makes corn cake wraps, no wheat. Moniques crepes has gluten free savory crepes but does make white flour sweet crepes in her kitchen. Green light café has many gluten free options including a gluten free bread so you can still get a sandwhich. You can get burgers without buns and the like at most vendors as well. Hope this helps.

Thanks,

Lindsay Newsome

Vendor Coordinator

Across-the-Way Productions, Inc."

I learned how to do these things from y'all so I really wanted to say thank you :)

GottaSki Mentor

It's a process for all of us....I too remember well thinking...how tough can it be to remove gluten to gain health.... :lol:

 

Joke was on me...but I will have the last laugh :D

 

Glad you got a great email response...it really does make doing fun things so much better when we can find safe food!!!

 

By the way...if you haven't yet heard -- being named "Lisa" seems to be one of the symptoms associated with Celiac Disease that has been left off the master list ;)

 

Hang in there....and have a blast....I am excited for you!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.