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Sooo Frusterating!
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6 posts in this topic

hey everyone....

I was diagnosed Celiac just under a year ago after becoming deathly ill... When I first went Gluten-free I added more dairy to my diet to try and gain weight, but I seemed to get even more sick... After a few months, I read about casein and tried to go casein free... So much has improved, but I just seem to always slip and make stupid mistakes that take me out of life for at least a few days.. On top of all the stress I have been going through with my body and this diet, I found out my girlfriend was cheating on me, and I cought her putting glutened seasonings in my food when she would cook so that I would get sick and not go find out what she was up to... On top of that, all this time I have been eating things that say dairy free, and lactose free, but they still have casein! Two nights ago I had some friends over and, for the first time in about a year, had some vodka... I know that alot of vodkas are gluten free, but I found that sky is not gluten free and now i'm realllly sick... I am soo frusterated with our condition and I am having such a hard time with it.. Along with all the other stress that I'v been under... I'm 25 and just feel like i'm never going to get a grip on this and live my life without sickness... I'm sick and tired of being sick and tired...

I have a quiestion.. I read that casein intolerance causes the same immune reaction as celiac, often triggering the nervous system.. The article I read stated that it causes the same igg iga reaction... Does anyone know if this is true, and if so, how do they determine celiac from casein intolerance?

Sorry, but i just have to vent today.. I try and talk to people, but no one understands what I have been going through...

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Wow...that's horrible....first off, your problems with dairy/casein/lactose, second your problems with your girlfriend, and third, the fact that rather than just try to cover it up, she actually tried to poison you! I don't really know anything about this casein thing...I've been staying dairy/lactose/casein limited...but not concerned to have some dairy slip in...just concerned with large amounts of it.

It's hard to find wheat-free/gluten-free/dairy-free/casein-free/lactose-free foods, but I've found one...and it's soy free....and it's the most delicious, realistic-tasting brownie I've ever had.....Foods By George makes this brownie....it's terrific because it is a friendly food for nearly everyone....and delicious. Technically, I only need to stay away from gluten, so I don't also have to be soy-free, dairy free, etc....but I eat it anyway, because although it's really good for those with lots of allergies or intollerances, the manufacturers didn't sacrifice taste in making it.

Are you lactose intollerant or just staying lactose/casein/dairy free to help your intestines in the healing process? If you aren't....then once you're back onto dairy and the like, try Foods By George's corn muffins....also amazingly realistic...but only wheat/gluten-free, so not good for those who need to watch dairy, as well.

Mainly, this post was to provide condolences for someone who is obviously going through a rough time. I consider it difficult to endure all the aspects of a Celiac and the gluten-free diet...and I'm a 13-year-old who doesn't need to worry about anyone sabotaging me (and actually have everyone around me on my side), and also a 13-year-old that doesn't need to deal with relationships besides those with family or basic friends....I, and most of us, have no idea.....good luck getting through all this.

-celiac3270

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Hey celiac3270:

You may be 'only 13' but you are WISE beyond your years. The encouraging posts you write to people on this message board who are struggling with 'symptoms' and frustrations of sticking to the gluten-free diet make me wonder if you should consider becoming a counsellor/therapist. ;) You're a natural! :) Maybe all your experience with celiac disease has made you very empathetic to others who are still struggling or maybe you have a great supportive network of friends and family. Whatever the source of your inspiring, supportive posts, keep them coming! :D

BURDEE

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Hey celiac3270:

You may be 'only 13' but you are WISE beyond your years. The encouraging posts you write to people on this message board who are struggling with 'symptoms' and frustrations of sticking to the gluten-free diet make me wonder if you should consider becoming a counsellor/therapist.  You're a natural!  Maybe all your experience with celiac disease has made you very empathetic to others who are still struggling or maybe you have a great supportive network of friends and family. Whatever the source of your inspiring, supportive posts, keep them coming! 

BURDEE

Thanks...I try to be helpful to others and appreciate your compliments :) . I think experience and a great family has helped me....I'll try to keep helping....

-celiac3270

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Hey Delta... man, that's harsh. Sorry to hear your girlfriend did that to you... but I can tell you for sure, anyone who does something like that to anyone... making you sick intentionally in order to cheat on you... that's LOWER THAN LOW!

ANYONE like that is not worth your time of day.

I know what you mean about getting down, and I come on the board to vent too because not a lot of people w/o celiac really understand. Anyways, just wanted to give you a word of encouragement. Hang in there, vent whenever you have to, and just keep on doing your best. I know what its like. I'm 20 and so around your age, so I do know the challenges. Good luck and I hope things get better for you.

Newbie

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Hey Delta, I, too, got very sick trying Vodka. If you want a drink now and them try Bacardi Rum. When my husband and I want a drink now, we have that and it doesn't seem to bother me at all. Believe me I know how difficult it is to stay gluten free, I"ve been that way (almost) for three years), but it really is worth it. As for the girlfriend, dump her and go on with your life. I'll just bet there are plenty of women out there who would jump at the chance of a good relationship with a Celiac. My husband stays gluten free with me for 2 1/2 years and we've been together since 1956. Just look for a kind girl who can adapt to reality and don't look back. Your mistakes will become fewer and fewer and you will feel better after a couple of years. I wish you the best luck. Shirley in San Diego

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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