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About mysecretcurse

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  1. I got sick of the social awkwardness that comes with bringing your own food or having to explain, so I stopped going. I'm not really involved in much that would require me to go, (I don't do church or anything like that) so it's usually not a big deal for me. When I have social eating functions, I have them at my house and I cook everything. If friends want to pitch in, I have them bring the raw ingredients and help me cook. It isn't ideal, and I'll admit that I've become pretty depressed about the state of my life. I miss eating in restaurants, being normal...etc. I also am in recovery from an eating disorder that I developed as a result of gluten making me fear food. Since being in recovery, things have gotten a little better. I'm trying not to fear and just to trust that things will be okay if I do eat something. I'm also looking into enzymes that might (although I don't want to get my hopes up) help protect me from trace amounts from cross contamination. My main goal is to be able to eat out again.
  2. mysecretcurse

    Does Super Sensitivity Exist?

    Yes, skin issues are probably my number one symptom other than mood/behavioral issues. The tiniest cc exposure to gluten (even a washed pan) and I get large, extremely painful cystic acne like lesions all over my face and sometimes scalp and even my neck. Along with that I get very disorientated, dizzy, nauseated (sometimes vomiting) hot/freezing flashes, rashes on my skin, extreme behavioral and mood issues like self harm or suicide attempts, constipation, bone/joint pain. It's good to know some of you guys experienced healing and that it took a long time. I'm not sure how long I am supposed to wait for this to start getting better. It's scary how much worse it's gotten. Even if I had refractory sprue, why would it get worse than it was originally....
  3. mysecretcurse

    Does Super Sensitivity Exist?

    Yes I don't understand that either! What is the difference between those who becomes less sensitive and those who become more and more sensitive? I wish we could pinpoint what is different about us verses them... is it that we are lacking something? Some deficiency? Is it that our intolerance was worse somehow or that we had more damage by the time we found it so we were past some sort of tipping point? (I don't know about you guys but I was about 25 when I first got on the path to removing gluten--and I do believe I was intolerant my whole life as I had unexplained hives, stomach problems, mood and behavioral issues since a toddler). I feel like there has to be an explanation.
  4. mysecretcurse

    Does Super Sensitivity Exist?

    Super sensitivity definitely exists.. I've been gluten free since 07... discovered my other sensitivities and finally got my situation under control in 09/10... (other sensitivities: soy, dairy, corn, and all other grains even rice).. found it was too much trouble reading labels and went entirely unprocessed/high raw in 2011. My home is allergen free and I do not eat out so I basically have everything 100% under my control. I haven't had a reaction for a long, long time--and then I flew out to California to visit family for the first time in ages this past week. I made sure to prepare. Brought all my own spices. Brought all my own nuts/seeds that I know I don't react to that are processed in gluten free facilities (I've been using the same brands for ages with no issues)... but when it came to forks/plates/cookware I decided to just bring my own fresh sponges, soap that I know is safe, and deep clean my family's dishes and cookware. I thought I'd be fine. I was so, so, so wrong. It only took two days before I had a severe, severe glutening. I know for a fact that the contamination came from either the plates, cutlary or possibly tupperware. No one was eating gluten at the table around me or anything and they had cleaned the house pretty well as my family understands my condition but they also didn't know it was THAT sensitive.I got so sick they almost had to take me to the hospital, it was terrifying. And devastating because I honestly had no clue I was THAT sensitive either. I never used to be. How does this happen? I feel like the more I protect myself from it the worse the reactions if I am exposed. And I scrubbed and scrubbed everything I touched... all the pots and pans were stainless steel, not teflon or anything that might have held remnants... I just don't get it. I keep hoping I will get less sensitive over time but no, the opposite seems to be happening. After this incident I went out and bought an entire new kitchen set. Silverware, cutlary, plates, mugs, glasses, cookware, tupperware, everything. I am going to keep it in a box, across the house and have my family just store it for me for when I come to visit. It's the best I can do, but when I hear of people being contaminated just from BEING IN the house where there is gluten--that scares me so much. I don't have any answers but thought I would share my experience.
  5. mysecretcurse

    Problems With Support Groups

    Okay, that just makes me mad, and is ABSOLUTELY untrue. You cannot speak for others in this way. I almost DIED because of my condition. I have no doubts.
  6. mysecretcurse

    Problems With Support Groups

    I agree with this. Not all of us had any sort of medical insurance or money. I was working part time minimum wage and barely surviving during the time I was figuring out my gluten intolerance (which based on the symptoms I am 99.99999% sure IS celiac disease). I trust my own process in figuring this out and my own intuition and I don't like the idea that someone like me wouldn't be welcome in a support group. I've been years healed off gluten now and will never have an "official" diagnosis because I can never eat gluten again without becoming severely ill. That said, if you don't like the people at the support group, don't go. It just seems like a personality clash verses an issue of them not being officially diagnosed.
  7. mysecretcurse

    No More Eating At Restuarants

    I believe it's been about two years now since I've eaten out at any restaurant, including when I did a road trip across America and back. I simply brought my cutting board and other tools and stopped at grocery stores along the way and made really big salads, plus eating bananas and other fruit. I'm mostly a raw foodist anyway, so restaurants just aren't for me. And I'm not someone with any sort of social obligation (work functions, etc) so it isn't hard for me. For people who are having professional luncheons and things of that nature, I really feel for. Seems like it would be super hard. But when it comes to friends, family, etc I just put my foot down a long time ago. I told them all I have very severe allergies and a very specific way of eating and demand that it is to be respected. If it isn't, I dropped those people from my life long ago. Everyone in my life now admires me for my strict diet. Don't feel talked into doing something that isn't good for your health. Be strong and say no.
  8. mysecretcurse

    My Stomach Is Killing Me!

    Holy crap some people are far too sensitive... That wasn't even being mean. Go look at the history of my posts and all the people I have offered my time to try and help here before you call me rude or mean. I wont try and help people here anymore if they don't want to be helped. No need for me to bother wasting my time if I'm going to get snapped at in response. Talk about rude...
  9. mysecretcurse

    Sorry To Say But

    I've been following (and relating to) your posts and some of your feelings for awhile now and I just wanted to say I'm sorry you are feeling so bad. I wanted to know if you've ever tried EFT...(emotional freedom technique). I'm pretty energetically sensitive and I pick up on a lot of anger, discouragement and doubt (disbelief that healing is actually possible for you, even if you DO really want it). Emotionals can block healing and progress, so I think using this therapy to get your emotions about your condition in check would do a lot for your healing. There is a lot of information on the net available about EFT and I will help you if you like. EFT therapy has helped me so much, and I think aside from doctors and diets and addressing the physical we need something to help our emotions too. Hope this helps, I'm sending love your way hun. <3
  10. mysecretcurse

    Scalp Outbreak?

    I second the shampoo comments. My scalp DH didn't go away until I stopped using shampoos that contain chemicals and what not.. even if they didn't say "wheat" on the label anywhere I had the same reaction. Now I use Desert Essence Organics Green Apple and Ginger gluten free shampoo... it smells amazing and my scalp is perfect!
  11. mysecretcurse

    Are There Levels Of Sensitivity In Celiacs?

    Yes, there are many different levels. I can't even touch gluten without a violent reaction.
  12. Hey there. I'm on a whole foods diet myself. Best thing I ever did for my body. Processed food is nasty and contains so many chemicals and other things. I used to be just gluten free but still eating processed food but then I stayed sick for a long time and eventually figured out that processed foods almost always contain something that bothers me. Figuring out I was also intolerant to corn was a big part of it.. as so much contains modified corn starch, corn syrup, dextrose, maltodextrin, etc. It's just not worth the hassle of trying to figure it out and eventually I decided it would be better to make EVERYTHING from scratch. So thats what I do now. I also have problems with dried fruit, unless I dry it myself, I dont go there.
  13. mysecretcurse

    Toxic Grains

    I agree. Its disturbing. What's even more disturbing to me is the way things like wheat, corn and soy are marketed and pushed on us as "health" food when the truth is far from that. Scary. I don't know if its a big evil conspiracy or if companies are just that stupid/dont care but yes, imo we ARE being poisoned. It seems like everything pushed as healthy causes a lot of problems in a LOT of people. Milk, wheat, soy.. hmmm.... Has anyone seen those disturbing commercials that are PRO high fructose corn syrup? Thats another thing that gets me. Its blatant lies and total propaganda. It makes me so sick. Its really really scary. The only way to be okay in this world is to think for yourself and never listen to much of anything you see or hear from the mainstream media. Do your own research and trust your gut because this is one jacked up world with a lot of corrupt and greedy forces in power, from the pharm companies to the food companies to the governments themselves. We have to watch our own backs.
  14. Girl, its been years for me and I'm still healing. It takes time. A lot of time. Even healing to where you feel better in a few weeks wont compare to the healing you see overall in the next months, years of your life! Its amazing, but a hard journey too. For some immediate relief I suggest eating mostly green smoothies for a couple days, with some food fat in them like avacado. The things that have helped me the most are more good fat in my diet (avacado, coconut oil, flax) and more meat. Try not to eat too much grain, even safe grain like rice. For me, the best things I did were eating fatty cuts of meat and yummy vegetable fats. Maybe its just my blood or body type though, I can't really say, just do what works for you. Sorry I don't have a lot of better advice, I just wanted to give you hope of all the good healing you have to look forward to.
  15. mysecretcurse

    Just Found Out That I Have Celiac Disease

    You dont need any special products or "replacement" foods. Just stick to whole, unprocessed foods you make yourself. Meats, veggies, fruits, rice, good oils, avacado, nuts. Etc.