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Frustrated And Really Pissed Off
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30 posts in this topic

AntiGluten, I'm wondering if it's possible that you have food allergies in addition to celiac disease? That it's not necessarily just gluten that sets you off. I could be wrong of course, but I thought I'd just throw that out there.

Have you ruled out other autoimmune diseases? Brain fog, mood swings, etc. also occur with hypothyroidism, connective tissue disorders and fibromyalgia. I have all three of those ailments in addition to being gluten intolerant (no official celiac diagnosis). Thyroid and adrenal issues in particular can make you spacey, moody, light-headed and just feeling like you could die of exhaustion.

Then again, it could certainly be hidden gluten. Just the variety of possibilities is frustrating, isn't it? <_<

Hope you do find the source of the problem. I am just now finding out what it's like to be free of stomach pain, for the first time in at least six years. :P

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Libby,

I agree with you that the mood shifts come on quickly and without notice. I find myself saying things that I don't realize I'm saying. I have to say I don't snack. I don't eat much at all. Usually just tea for breakfast and then some dinner. It seems like nothing tastes like food anymore. Maybe I'm just tired of eating the same things over and over. Cuz what I really want is a Big Mac!!! I'm going to try and do the snack thing and see if it helps even things out. Don't get me wrong, my boyfriend is great about working around the whole celiac thing, but he's getting pretty tired of living with Dr. Jekyl and Ms. Hyde.

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AntiGluten, it looks like you might have stopped checking this already, but I'll put in my two cents anyway.

I am also 19, have been off gluten for 2 years and live with my mother while attending trade school. My Ma is also gluten intolerant so our house is gluten-free and there aren't any poisonous crumbs around to hijack our dinner plates.

That being said, I still get contaminated food sometimes (even when it says "gluten-free".) If I have eaten "dirty food," that is, food with gluten in it, I know by the next morning because I wake up looking like the un-dead. Small children run from me and so they should.

On the bright side, I have figured out how to minimize the monster effect when I accidentally ingest. I feel better much faster if I take enzymes, sleep ten hours a night, and drink more water. I think I prolonged the healing process for a while by sleeping to little.

I have a love/hate relationship with this whole thing. I'm healthier than ever and I'm a better cook than ever, but I do have the occasional, really, really bad day.

I know how you feel.

-Solveig

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Hi

I am new here. Totally angry. Very sad and depressed. I have been feeling so so terrible for such a longtime. You go to the doctors and they think you make it all up. Although I am feeling overwhelmed it also makes me feel better that I am not alone.

I am well on my way to getting a celiac diagnosis so I am gathering all possible information.

Are there any members out there who live in the Ipswich MA area?

THANKS FOR THE SUPPORT!

LISA

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Lisa, Don't feel you are ever alone. My problems began as a 12 year old, culminating in the dermatitis as a 15 year old. After treating me for a year the allergist's couldn't figure out the problem so they told my Mom to take me to a psychiatrist. It only took the doctors another 50 years to figure this whole mess out and them it was me who suggested Celiac. Don't feel alone about doctors not understanding. They don't have time to understand, just treat the symptoms, and not even look for the underlying problems. I hope you begin to feel better about yourself, and about this disease. Shirley

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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