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
LisaRae28
Posted

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
GottaSki
Posted

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
bartfull
Posted

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
LisaRae28
Posted
  • Author

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
GottaSki
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.