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Frustrated And Really Pissed Off

AntiGluten

By AntiGluten
in Coping with Celiac Disease

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fanfaire Rookie
fanfaire
Posted

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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sportnut Newbie
sportnut
Posted

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.

ham&ex Rookie
ham&ex
Posted

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

tgirl Newbie
tgirl
Posted

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

Guest aramgard
Guest aramgard
Posted

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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      New (possible) celiac diagnosis

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      By Judy M · Posted

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    • Scott Adams
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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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