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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.

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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

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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

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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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      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
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