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tspiggy added a topic in Celiac Disease - Coping WithCoping With Brain FogDiagnosed and gluten-free nearly two years, I'm feeling 100% better. I've got label reading, cooking, avoiding cc at home and eating out pretty much down to a science, and I take my own food to family gatherings or events like weddings (by all accounts I'm apparently not missing much at those events, lol). I never cheat, so the only times I've ever been glutened have been from eating out. It takes about 3 days for a reaction to kick in -- fatigue, crippling anxiety and brain fog -- and it takes on average a week to feel normal again.
The tiredness is never enough to affect my daily functioning; I just take catnaps here and there when I can, and I go to bed earlier than usual. The anxiety is sometimes bad enough to affect my quality of life, and I finally realized I may have to resort to Xanax to get me over the hump until I feel better.
But muddling through that brain fog...lordy, lordy. My concentration is shot, my short-term memory is ridiculous, my attention wanders frequently. When I talk to someone my voice sounds as if it's coming from a distance. There's a rational part that knows what's happening and that it will pass, but man, I hate feeling trapped inside my own head. Is there anything I can do to help clear it more quickly? I've tried drinking more water, getting more sleep, taking brisk walks to clear my head...it works temporarily but essentially I'm stuck riding it out until my body finally rids itself of the gluten. Any suggestions?
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tspiggy added a topic in Celiac Disease - Coping WithEmotionally Right Back To Where I Was 18 Months AgoI was DX with celiac on 10/11/12, about 18 months after initial onset of symptoms. Except for chronic upper abdominal pain and an 11-lb. weight loss, my symptoms had been more neurological than digestive: massive brain fog, occasional tingling in hands and feet, chronic fatigue. The worst was raging anxiety and panic attacks, followed by crushing depression. The doctor who diagnosed my celiac clearly knew next to nothing about it -- he actually said I could occasionally cheat and eat gluten. I was left on my own to research my condition as well as what I could and couldn't eat. With my gluten-induced anxiety levels so high, my research sent it through the roof. I posted questions on this forum about coping mentally with the disease and how to manage the fear, and was reassured by a lot of caring people.
With the help of my wonderful nutritionist, I responded quickly to the gluten-free diet. In two months my abdominal pains were gone and my energy returned. In six months all the other symptoms resolved themselves and I gained back all the weight I'd lost. I didn't seem to have any additional food intolerances. After time, effort and a couple of accidental glutenings, I mastered the lifestyle and it became second-nature. My anxiety, while not entirely gone, improved tremendously and my mood improved. I felt well and optimistic for the first time in a couple of years.
Even prior to diagnosis I continued to have annual routine exams, but the doctors couldn't figure out what was wrong with me. All my blood work was normal. Thyroid functions were normal, I had no anemia or other deficiencies. The celiac panel is what caught the disease and confirmed by endoscopy. It seemed I was very fortunate to have been diagnosed only 18 months after onset of symptoms and seemingly before any serious complications set in.
Earlier this week I felt mentally strong enough to go back to researching celiac information online. I found a blog that I thought was the answer to my prayers. But I started reading one story after another from celiacs who developed food intolerances or other illnesses after being gluten-free for years and my anxiety ramped up again.
I feel well. I've been feeling well for nearly a year. My most recent blood work last November showed no deficienices and everything to be normal. Even my monocyte levels were normal (they were sky-high at diagnosis). Based on exams and test results I appear to be healthy except for the celiac. I thought that by avoiding gluten (accidental exposure notwithstanding) and eating healthy my gut would eventually heal and I'd be ok. Now I was reading stories about people who were developing other illnesses after being gluten-free for years.
So now I'm emotionally back to where I was 18 months ago, except that I feel physically well but scared to death, anxious as all hell and unable to deal. I've gotten nothing accomplished all week because fear has kept me paralyzed. I need reassurance. I need answers. My nutritionist has already warned me that I will not heal if I don't learn to manage my stress levels, and until I read those blog posts I had it all under control. How do you manage the fear and the knowledge that even doing everything right there's still the possibility of complications down the road? I can't imagine living the rest of my life with this fear. That's not living.
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tspiggy added a topic in Celiac Disease - Coping WithUgh...just Need To VentA week into eating gluten-free and feeling somewhat physically better, but emotionally still fragile. I'm having a very difficult time dealing with my DX despite reassurances from so many of you. My moods are all over the place and I have a meltdown every day at the most unexpected moment (today's happened while sitting in my stylist's chair having my hair cut and colored...thankfully she's a friend of mine and had a box of tissues ready).
A few minutes ago I came across a story one of my friends posted on Facebook about Hostess Brands shutting down and liquidating its assets today. We all commented on how sad that one of our childhood icons, the Twinkie, will be no more. Now, I haven't had a Twinkie or a Ring Ding (my favorite) in years, but now that I can't have one because of celiac I suddenly wanted one. It's one thing to choose to pass up something; it's entirely different when that choice is taken away from you.
Realizing that whatever Hostess items currently on store shelves are the last opportunity for my husband to have his beloved Ring Dings, he just took off for Sam's Club to stock up on as many boxes as he can get a hold of, leaving me simultaneously fuming and sad. I can't begrudge the guy his Ring Dings, and I've certainly put him through the ringer ever since my DX. He and our daughter have been insanely supportive. But man, it seemed so insensitive of him. So here I am venting because I don't want to make this an issue with him. All I said to him was, "Just please be kind and hide them and don't eat them in front of me."
After my tantrum here I'll put on my big girl panties and deal. I just needed a place to vent.
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tspiggy added a topic in Celiac Disease - Coping WithNewly Diagnosed And Need Tips On How To Handle An Upcoming EventI wasn't entirely sure where to post this question so if I'm in the wrong place I apologize. Bear with me; I'm a newbie.
I'm now on day 6 of my new gluten-free life and am discovering that because much of my diet already consists of whole foods it's not as difficult as I originally expected. Avoiding cc because I share a kitchen with gluten eaters is the bigger hassle but again not terrible because my husband and daughter are helping. I'm still feeling emotionally fragile as I process this new, completely unexpected news but I'm hoping that will eventually subside as well. On the upside, I noticed that after only a few days the brain fog has lifted and the myriad odd little aches and pains are gone. It's amazing what gluten does to a body.
Anyway, my husband is a firefighter and we're attending his chief's 20th anniversary commemoration party on December 8th at the La Quinta hotel in our town. It's a full sit-down dinner with a limited menu offering a choice of beef, chicken or fish but I naturally worry about gluten-containing ingredients and cross contamination. We accepted the invite before my DX and because my husband is an officer he's expected to attend. I also don't want to miss the fun, so we agreed to go ahead with our plans to attend.
I'll deal with the emotional aspect of this when it comes...I'm hoping I'll have so much fun dancing and partying that I won't feel as isolated as I do now. But how do I handle the meal? I've read advice to eat before going to a party or bring something with me that I know is safe. But how do I handle an event with a dinner that's going to be prepared the same way for everyone? Should I contact the hotel ahead of time and explain my situation or seek out the maitre d' at the event and explain it to him privately? Or should I simply eat before we go and avoid the hassle altogether?
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tspiggy added a topic in Celiac Disease - Coping WithHow Do You Stay "sane"?I'm 49, newly diagnosed and started the diet this weekend. Eliminating gluten from my diet (at home, anyway) isn't going to be as difficult as I thought because it turns out that about 90% of what I eat is already gluten-free and there are gluten-free versions of the remaining 10%. I've eaten pretty healthy all my life so I can deal with the dietary restriction.
But the emotional aspect of the disease is affecting me. First of all, I was shocked to learn I have celiac disease, as I don't know anyone in my family who has it. If it came from one or both of my parents then their undiagnosed (and therefore, untreated) celiac has had no affect on either their health or longevity. My father is 92 and my mother is 86 and they're both in remarkable health. My brother, who's 63, doesn't appear to have the disease. Lucky me; I crapped out in the game of genetic roulette.
Anyway, my quality of life and emotional well-being are becoming compromised. Taking the necessary precautions to eat safely all seem to require a level of paranoia that can't possibly be good for my mental health. I made the mistake of reading all the medical websites that describe the potential complications of untreated celiac disease, and I'm terrified of the consequences of accidentally ingesting gluten. I will never knowingly cheat on the diet but accidents are inevitable. I'm lucky to be a “silent” celiac who doesn't have an extreme reaction to gluten but I'll know the damage is on the inside and increases the risks of worse things happening to me down the road.
I don't want to adopt a victim mentality or define myself by my disease. By all means I have to be careful when I eat but otherwise want to live a normal, healthy life that includes (eventually) dining out, socializing and traveling. I'm hoping that in time taking the necessary precautions becomes second-nature and I'll go about my life as usual. But right now my condition and its potential future health implications are all I can think of. I feel as if I'm walking around with a sword over my head.
So how do you stay sane and not let celiac disease adversely affect your quality of life?
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