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

I Need Help!


Kyleat92

Recommended Posts

Kyleat92 Newbie

Hi guys,

I really need your help, support and advice :(

I self diagnosed myself around last November because I was investigating why as a kid I had huge weight gain. Turns out removing gluten from my diet not only made me drop from 90kgs to 70kgs, I felt healthier and mentally happier.

At that time I was working in a mining town and had nothing to do but be completely dedicated to my eating and having complete control over my diet and exercise.

Two months ago I moved from there to be a professional musician. I'm currently on tour for the next two months and im ignorant to my condition! Everytime I go to eat anything I know has wheat or gluten in it, I just think "oh its ok, my body will get over it in a few days". I don't have huge reactions. I just stack weight on, my brain goes foggy and I sometimes get a small rash on my wrists.

I need a way of fighting this. It used to be so strong willed against all things gluten but I'm weakening. I've already put on 8kgs in the past 2 weeks which I'm highly self conscious about.

How do you guys fight it? I know being strong is hard but I need help returning to being there.

Can you at all help me? I'd owe you my sanity!!

Kyle


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



Celiac.com Sponsor (A8-M):



Di2011 Enthusiast

Hi Kyle,

You sound like you could be in Australia? Where do you live?

I was overweight my entire life due to gluten. In hindsight I would describe gluten as an absolute poison in my body. Lots of things have resovled since I've been gluten free. AND I am a healthy 65kg (struggling to keep my calories up to stop losing weight... who would have thought after 38 years overweight!).

I have head to toe DH (dermatitis herpetiformis) so I have a strong incentive to avoid all gluten. I just wonder what you need to have as a motivator? If you are sensitive to the weight gain then start thinking of weight gain ((etc)) as your primary motivator. It should be. You are probably in a bad way internally and at risk for the subsequent conditions/disease suffered by many celiacs. How long do you want to be touring, playing and enjoying your music?

You need to get proactive on you diet/food future. What is for lunch tomorrow? What equipment/appliances do you have at hand tomorrow? Have you googled the gluten free friendly cafes/restaurants in the area you are heading to next week?

dani nero Community Regular

When you were "fighting it" did you eat any gluten-free products like gluten-free pasta and bread?

I don't know about the rest but the reason I can fight it is because I not only gain weight like you do, but I also get other symptoms that I would rather not have, specifically anxiety and mood swings, fatigue, loss of will and so on.

I think that you're suffering from cravings because you're back on the gluten. Gluten makes you crave carbs and feel hungry all the time.

My suggestion to you is to find a good eating routine while you're on tour. You need to figure out a way to keep yourself fed and satisfied without consuming gluten. I read some really REALLY helpful tips about how to manage cravings and hunger, and the one I can remember right now is to eat healthy fats with your food (like nuts and avocados and so on), and to never eat carbs alone. Which brings me back to the question, when you ate gluten free, did you consume gluten-free bread and pasta or did you just eat rice and didn't bother with processed gluten-free products?

Like for example, if I'm going to eat a pear, I eat it with cashews, or if I'm making chicken with a sauce, I'll can put chopped nuts into the sauce.. These examples are with nuts but there are a lot of other healthy fat alternatives.. I'm sorry I can't suggest any at the time because my brain is occupied with other problems :-( But I'm sure the very brilliant people around here will be giving you many tips. Just hang in there.

Kyleat92 Newbie

Thanks for the replies.

I am indeed in Australia. My biggest problem is that I'm touring regional Australia performing in schools doing workshops and such.

Most of the time I was living on eggs of a morning, nuts for lunch/ snacks and chicken stirfry for dinner. Id sometimes have processed gluten free stuff but not very often. Problem with living in motels is that there's rarely cooking utensils and I'm trying to live on a budget.

The cast and i had McDonald's for dinner and I now have black under my eyes. I've told my motel roomie if he sees me eying something gluteny while on tour he can punch me in the face.

Kyleat92 Newbie

And by my sarcasm I mean help me be gluten free on this tour :P

ravenwoodglass Mentor

When I travel I bring my own toaster and hot plate along with a pot to cook in. Some hotels also have microwaves in the rooms, ask when you make reservations if you can. Then you can grab safe foods at the store and make sure you have plenty of safe snacks to munch on when the band stops at a fast food place after a gig.

dani nero Community Regular

When I travel I bring my own toaster and hot plate along with a pot to cook in. Some hotels also have microwaves in the rooms, ask when you make reservations if you can. Then you can grab safe foods at the store and make sure you have plenty of safe snacks to munch on when the band stops at a fast food place after a gig.

Very resourceful idea. Where is will there is always a way. Also some supermarkets sell ready grilled chicken, and I think they're usually gluten-free. the important thing is that you find good food and keep it available.

Just a side note, and I really don't mean any disrespect to anyone who enjoy McDonald's.. but I find it so .. d (I'll leave d open to interpretation)


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.