Anonymousgurl

It's amazing how similar our experiences are. Thank you so much for opening up and telling me your story. It really makes me feel less lonely to know that someone else out there is experiencing similar things and feeling the same way.

My Dr. tells me that this is a lonely disease I have...and he's right. It takes everything away. I sometimes feel trapped because I have the "desire" and even the "energy" (some days) to do all the things I enjoy but the environmental sensitivities rob me from getting out there. I'm always scared I'll get sick. This is the worst part for me. I miss my life and it gets really lonely but at the same time...I push everyone away because its hard to be "different" and to not participate the way I'd like to

You just stated EXACTLY how I feel. This pain, these sensitivities...they're robbing me of my teenage years. I feel like I'm completely missing out on the normal teenage experience and I'll never be able to get this back. How do you get through it all on a daily basis?

It sounds like our food sensitivities are quite similar...and for me that's one of the hardest things to deal with. Food sensitivities and weight. People judge me based on both of those things, and it sounds like you have that problem too. How do you deal with that? Holidays? Restaraunts? It's all so tough.

Thanks again for sharing, it just helps to be talking to someone.

Rachel- I noticed you said that you've started Bioset treatments! I'm so excited for you because I've been doing it for a couple months now and it helps SO MUCH! I can eat dairy right after my treatments (which I usually can't eat), and a couple of other things that im usually sensitive too, but unfortunately it doesnt clear up my gluten problem, and unfortunately people with lyme disease get re-sensitized quickly.

And I saw that you've started Cat's Claw! I know this sounds weird but I'm actually on cat NIP...because I actually have a co-infection of lyme disease called Babesia and the herb catnip supposedly goes after it.

Thanks for welcoming me to the board everyone

Oh my goodness, this board is HUGE. haha...well I was ever so kindly invited by Carla to join because she informed me that lyme disease is a popular topic on this board. But anywayyyys...it looks like everyone is talking about the holidays right now...I hope everyone is having a good time, it sure sounds like you are.

WOW...thank you so much for your responses everyone. Your stories and advice made me feel a tiny bit better...because sometimes it just helps to know that you aren't alone. It also just helps to have some human contact outside of my family, because obviously I haven't been all that social lately, haha! It helps with that lonely feeling. But anyways...you guys are all amazing...the support you offer, and how QUICKLY everyone jumps to help....you all have great hearts.

Allison- Please do keep me updated! I too haven't had great experience with psychologists, my mom got me one that our insurance covered and she was HORRIBLE so now I'm just left to fend for myself. So I'd love to hear what the person you are seeing says! Really, please do keep me posted.

Carla- Yay, someone else who knows what it's like to have lyme! I am indeed seeing a lyme specialist. He's an M.D. but he specializes in Hollistic/Homeopathic medicince. Is your doctor homeopathic? You know, I think I'll take you up on that and join the board you were talking about. I'd love to compare notes with some of you.

Rachel- It's amazing how similar your story is to mine! It sounds like we might have gone through a lot of the same things. I'd love to hear more of your story.

I'd love to continue to hear stories or advice. you all are so great.

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Thanks for sharing you guys. Budew, you're definitely right. Sharing is the only way to find answers....and it really just makes me feel better. Haha.

Lauren-Congratulations on what you've achieved. How long did it take for the weight to distribute itself evenly? I can't wait until it gets to these pencil-thin arms. Haha.

Budew- Wow, sounds like you've been through a lot of ups and downs. Sounds like you're doing well now though! May I ask, how tall are you?

If you get better gluten-free/casein-free, then you have your answer and need to look no further. If you don't heal completely and still feel bad, your intolerance might be because of some other problem and you'll need to keep looking. Either way, it seems that you feel better off gluten ... food sensitivities can be a symptom of another problem. My gluten intolerance is most likely a result of my Lyme Disease. I felt a lot better when I first went gluten-free, but then stopped progressing in my healing. If you get completely better gluten-free, then you can assume that's your "only" problem ... if you don't, keep looking for whatever else may be causing the trouble.

That's ironic Carla, I happen to have a co-infection of lyme disease. I'm infected with a lot of parasites and infections. Are you being treated for lyme disease?

I was also wondering how people first felt when they just began to go gluten free? The first couple of days felt great...but then all of a sudden I'm having some trouble again. Did this happen to anyone? How did everyone feel in the beginning?

I'm with you. I kept a lot of what you expressed to myself for a long time. I am 46. I have always been thin. My husband had an affair and siad it was he desired large women. The whole weight issue came forward like a ton of bricks. After that I was diagnosed celiac and was put on anti anxiety drugs. I gained 70 lbs in 3 months without eating. When I quit taking the drugs I lost it just a quickly. Ireally had to think of my weight and appearance. hat I did for me and what I did for others. There was also a time when no matter what I did I could not gain. All the fat and sugar in the world did not effect it. No I know I was not digesting anything then. That was when I was called anorexic. Sure I did not want to be at but I was not restricting to be thin. I was restricting so I was not ill.

I am 5'6" and weigh 114 now.

After going gluten free I was told to wait to heal. I did not heal. I became more ill. I am now sensitive to many things. I fight to gain eight on my diet ( now meat, grain, legume, nightshade free). Whip cream, butter, and homemade milk shakes are my biggest sources of calories now. I have gained 2 lbs in the last 2 months. I feel like everything I eat is greasy even when I know it is not.

Well hope you don't feel alone. Write me directly if you like. Best of luck.

Thank you SO much for sharing your story Burdew. When you said "I was not restricting to be thin, I was restricting so I was not ill"...that made me want to cry...because i feel the EXACT same way. FINALLY, someone that knows how I feel. And I know how it feels to be sensitive to almost ALL foods...I feel like my body is completely messed up, both on the inside and the outside. I'd love to keep talking to you about this because it's such a comfort to know that there is someone else out there with the same issue that I have. What else are you sensitive to? How are you feeling about your appearance at this point? I'm sorry if these questions are too personal...I know that this can be so hard to share...I mean, I could NEVER talk about this with my family or friends. I feel almost embarrassed about ths situation, even though I know that it's not my fault and it's not something that i asked for.

I'm brand new here too and I find it pretty confusing! You an I are quite alike, because I too have multiple food allergies (not JUST gluten...which makes eating quite depressing...) and I have bladder problems! Aren't bladder problems quite annoying at night? haha...well anyways....hopefully we'll both figure out the site soon.

Thanks everyone, that comforts me. You're all so welcoming and willing to help! Thank you so much for your kindness. It's so hard to find people who understand...I mean, I'm REALLY sick...and people just don't understand why, or they think it's all in my head or I do this to myself (and lose all this weight on purpose). But ANYWAYS...thank you so much for understanding that gluten can make people seriously ill!

I was just wondering if anyone could reccomend me to any helpful websites...I know the basics of the diet but I would just love to find a website with ideas, stories, hints, tricks, trips...anything....

Im sorry, I only had time to scan the posts on here, im not sure if someone already answered this question...but are there any ORGANIC turkey lunchmeats that are gluten free out there? I had been eating Diesel turkey lunch meat and reacting horribly to it, even though it didn't have gluten on the ingredients list. So F.Y.I. everyone- watch out for that one!

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