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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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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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