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About caek_is_a_lie

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  1. My boyfriend got some Sam's Choice Pink Lemonade and regular lemonade at Walmart as a treat for our son who just went gluten free. I read the ingredients and it has "natural flavors". But there's no phone number and the walmart website doesn't have any gluten info on any of their products. So how can I find out if it's ok besides simply trying it? I can't imagine lemonade would have gluten in it, but I just need to know for sure. Has anyone tried this product? Thanks!

  2. I think the entire notion of "building up a tolerance" is pure rubbish. I would point out, that many on this board have noticed an increased sensitivity to gluten after being gluten-free for a while. However, the damage to the intestine had still been occurring before the change in diet. Only the appearance of outward symptoms were suppressed.

    Well, I do believe there is evidence that desensitization works in some cases. And this group found positive results in doing this treatment in mice. Of course, mice aren't humans, so we'll see how the human trials go. They indicate the treatment takes months to complete.

    My issue with the whole thing is in calling it a "vaccine". It's not a vaccine. A vaccine is injecting modified or killed virus into your body that you have not been previously exposed to so that you can make new antibodies against it to fight it off when you are eventually exposed to the illness.

    Gluten is not a virus and our whole problem is we already make antibodies against it which then attack our own cells. So this treatment is more like an antivaccine, really. I wish they would just call it what it really is...gluten desensitization. "vaccine" is so misleading! It's not like you get one little shot and you're cured.

  3. I actually cant believe that more people aren't positive about a cure! I cant wait to start eating without restrictions again. Its torture being bound by gluten! Not just for me but also for my darling wife. Surely there must be some of you who feel excited about the prospects for a vaccine?? Please share your thoughts with us...

    I'm sorry, I just can't get excited about the prospects of injecting myself with gluten to make me not sensitive to gluten. If it was any other type of cure I'd be thrilled, but this just seems like certain death, in a way. I'm just too sensitive to gluten...how could injecting it into my body for months and months be a good thing? I spend so much time and energy doing everything I can to avoid gluten. It would be hard to let someone with a syringe full of gluten anywhere near my body, no matter how diluted it is. I'm pretty sure I'd run. :lol:

  4. They were being extremely insensitive to your daughter. There is nothing ruder and more hurtful than your teacher forcing you to watch the whole class eat in front of you and announcing to everyone that you're left out on purpose because your mom forgot you. Of course you didn't forget your daughter. It was irresponsible of them to pass all the accountability on to you without even trying and without even giving you all the information regarding her snack box. It seems cruel and heartless to me. I'm sorry she had to go through that.

  5. I get puffy fingers, neck, torso, and sometimes feet. It can get really bad. Many years ago it was so bad my skin hurt because it was so tight. I haven't noticed a direct relation to salt...for me it's more related to gluten and sugar consumption. It definitely gets bad if I eat wheat bread. People talk about getting bloated belly from gluten, but for me I get an entire bloated body! It's freaky because my stomach, hands, and chin will blow up like a balloon just minutes after eating. I can grow 2 pants sizes in 30 seconds. Freaky! And it takes awhile for it to go away. I hate it. Doctors ignore me when I tell them about it, but I try to control it by watching what I eat. After I went 100% gluten-free, I was able to wear some rings that I haven't worn in years. It was great! :) Lately I've been having problems with it again, though. I think it's either too much sugar or I'm sensitive to milk. Not sure which, though.

  6. It's here! It finally made it to my local grocery store! I just had a big bowl. It was wonderful. I have loved this cereal for years and couldn't figure out why it made me sick until I learned about gluten. But now it's gluten-free!! Finally I can get big boxes of regular cereal like the rest of the family! Not overpriced dinky boxes of Glutino O's or Gorilla Munch. YAY! :)

  7. He is anemic for no reason, has a big belly, eczema, dark circles under his eyes (posted a pic in the children section of belly and circles), constant diarreah and mood swings. I think they are all major signs of celiac, so they are testing. I want to do the diet for a week. Just to see if anything changes, wouldnt that be helpful to tell the GI? He doesnt go until may 21st, so if he is off gluten from 13th-20th, that is a whole month before GI, and this is just a consult. I am going to have to make a separate appointment if they decide to do a biopsy, and that will be even longer, gluten should be back in the system for a month of eating it right?

    Sounds like Celiac to me, but if he has a GI appt, keep him on gluten until after the blood tests and biopsy. If his small intestines start to heal, they might not find any villi atrophy and it will complicate diagnosis. If your docs are obsessed with numbers on paper more than the symptoms of your child, you'll want to make sure they get those numbers! I know it's hard to wait. I have heard that you have to be on gluten for at least 3 weeks before the tests, so maybe your 1 week trial will be ok. But hopefully other parents will weigh in since they've had more experience than I have with the testing.

    Good luck!

  8. March 08 he gets his first episode, as I call them. He was across the room, I was on the floor and said Come here baby. He starts to come, stops, looks scared, starts walking to the side and falls over. Trys to get up, falls back over, can not get up. Doc says if it happens again, bring him in, maybe his equlibrium was off from popping ears.

    Just a thought, but I get temporary muscle paralysis from eating gluten. Celiac caused my Narcolepsy and I get episodes of Cataplexy (temporary muscle tone loss.) It's the same thing that keeps you immobile when you're dreaming so you don't act out your dreams, but my brain misfires and it happens when I'm awake because some of the cells in my hypothalamus are damaged. It's otherwise harmless and I just have to wait for it to pass. I can feel it coming on right before it happens and what happened to your son sounds similar...maybe he felt the attack coming on and it frightened him because he didn't understand it and knew it was beyond his control. (this is just speculation on my part, btw. I just know what it's like to fall over a lot. lol)

    It's supposed to only be triggered by emotions, like laughing at a joke, playing a game, or getting angry. When I'm gluten-free, these are my only triggers. But when I eat gluten, it happens spontaneously, too. For me it started in my teenage years, but kids can get it too. I don't know if this is the same as what you're son is experiencing, but I just wanted you to know that there are neurological symptoms from gluten intolerance and that they're not all quite as serious as something like Epilepsy. And what I mean by that is, each episode isn't making it worse.

    There's another neurological symptom of gluten intolerance called Gluten Ataxia. The antibodies attack the cerebellum and it affects balance and coordination. This is also a possibility considering your son's symptoms.

    If you don't get help from you doc and you can't find a better doc in your area, I suggest trying a gluten-free diet anyway. If it is gluten causing your son's problems, they'll only get worse the longer he eats gluten. If it's not gluten, well my heart goes out to you and I hope you can get the proper help for him so he can feel better! But, from what you described, overall it does sound like gluten intolerance.

  9. Are you sure Heinz 57 is not gluten-free?

    Heinz 57 is not gluten free, but Heinz Tomato Ketchup is. Weird, I know. But that's what Heinz says. Safeway Tomato Ketchup is gluten-free, too. Then my boyfriend goes out and buys Hunt's Ketchup. NOT gluten-free. Ugh. I told him to get his money back. Dork. :lol:

    PS: YAY for A-1 sauce! I love that stuff! I'm totally buying that now!! Woo hoo!

  10. I have great respect for medicine

    I don't. Not anymore. Not after 10 years of them screwing around with my health and sanity for the sake of their own egos, then when I figure out the answers for them they say "oh that's great you figured it out." yeah whatever. Jaded much? :P

    But I'm glad you're working your way through the system to get your son help. I hope he starts feeling better soon!

  11. Yeah, tell me about it!!!! Part of me thinks I should just take him off gulten and tell them to go to hell.

    IMHO just do it! I mean, you don't need a Rx to take him off gluten. You can just try it and see if it works. If you still want the biopsy, I'd find another doctor. You have WAY too many positives staring you in the face to put up with their BS. There's lots of references on this site to good doctors, maybe you can find one in your area.

    I mean why the hell would they give him an appetite stimulant to make him eat more poison and get sicker? That's insane.

    And I totally know how you feel, btw...I've been through the ringer with dr's before. It sucks! Especially when you know you're right and they won't listen and call you crazy. Hang in there!

  12. Really? DQB1*0602 is a gluten sensitivity gene too? That's the main Narcolepsy gene everyone looks for in Narcolepsy patients. A large portion of the population has it, but if you have Narcolepsy, odds are you have that one. It's responsible for they hypocretin cell loss in the hypothalamus...I had no idea it was considered a gluten sensitivity gene. Hmmmm...do they just call anything on the DQB1 locus a gluten gene? I need to research that more. <_<

    I have DQB1*0301, the second most prevalent Narcolepsy gene, and that's also a Celiac gene. Hrmmmm...this is interesting...I almost half don't believe Enterolab but I'll let you know what I find out.

    Sorry this isn't directly related to your question...I just found it surprising.

    [EDIT: ok Enterolab calls *0301 a gluten intolerance gene, but I did find a study that found diagnosed Celiac patients with *0301, so...I dunno. But I did finally find some circumstancial evidence that *0602 is also a gluten intolerance gene. Not very convincing evidence yet...and one of the finds was Dr. Fine's international intellectual property claim on his testing, so that's kind of a circular reference isn't it? lol)

  13. Sometimes it's the same problem-just different packaging ;)

    I hear ya. I've actually been there, myself, many years ago, but lately I find myself longing to go back for a change. :rolleyes: It may not be healthy for me to think that way, but I did actually enjoy shopping in the juniors section for awhile. At least clothes felt comfortable back then, no matter what I wore. And I'm tall and was living in LA so people just looked at me like I must be some kind of model or actress. Now nothing seems to fit right, not even new. <_< Oh well.

  14. Good for you! Keep up the good work! I think it's normal to be angry for a time about this. I mean, it's not fair, is it? And it's all up to us to eat right but the world makes it so hard to do a good job at staying gluten-free. I used to get angry at myself for accidental glutenings, but I think I'm starting to accept that I'll have no control over it sometimes and, despite my best efforts, it's still going to happen on occasion.