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bigbird16

Member Since 04 Dec 2008
Offline Last Active Feb 11 2013 05:47 PM
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#838778 Thinking Of Going Vegetarian

Posted by bigbird16 on 25 November 2012 - 03:34 AM

Hugs, Fire Fairy. It's natural to want to please those you love. But you gave eggs and dairy up because your body rejected them. How much fun will you be to be around if your intestines are tied in knots and you have the hershey squirts? Anyone who slams you for your diet, no matter what way you chose or need to eat, is not your friend. Your boyfriend's family not only accepts you but tried to accomodate you. The person you are is what matters. He souns like a good guy! :-)
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#836020 How Long Does "gluten" Linger On Surfaces? This Is Overwhelming..

Posted by bigbird16 on 12 November 2012 - 08:58 AM

There are truly gluten-free dog foods. You have to read the ingredients, because what the pet food companies call gluten-free isn't the same as what it means for humans. Look for the foods that do not contain wheat, barley, or rye. If you go for grain-free dog food, you eliminate the possibility of the evil three. Pure Vita, Nature's Variety Instinct, Orijen, Acana, Natural Balance, Merrick, Avoderm, and others have grain-free or rice as the only grain varieties. Ask your pet store to show you limited ingredient or grain-free foods. Both of my dogs are grain-free and I love never having to worry about sloppy puppy kisses or drool.
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#825787 Why I Still Eat Bread...

Posted by bigbird16 on 27 September 2012 - 06:42 AM

Sandra,


A lot of us were bread and pasta fiends. I was a baker and cake decorator. I loved baking for people. I rarely ate my own cakes, as they made my stomach hurt. (Hmm, I wonder why?) My favorite breads to make were banana nut and dill onion. I loved it when my home reeked of sugar and flour from the cakes.


When my dad suggested that my migraines might be connected to gluten, I gave it up. Cold turkey. The possibility that there might be even some relief from the incredible daily pain was enough to make me stop eating gluten. I had no idea that so much of what I had been feeling would be affected by dropping it. I had been feeling like I was slowly dying with extreme fatigue and various pains. Instead of genuine hunger, I felt a gnawing pain in my belly. Within days I started to feel better, and a matter of weeks later I felt better than I had in ages with increasing energy. My stomach actually started to rumble when hungery instead of hurting, and I didn't get lightheaded anymore.


Too bad I didn't know about testing beforehand. When I did inquire about testing, I was blown off and couldn't even get an appointment to see a doctor for at least another two weeks. I had been gluten-free for a number of weeks already. I ordered a Biocard test to see if I could test myself, and I tried going back to eating gluten so I could be tested. I didn't make it through one meal. I had a violent reaction. That was my answer. Of course I tested negative on the Biocard test; I had already been free for too long. Who cares. I understood what my body was telling me. Screw the tests.


I mourned the loss of my breads and pastas and cakes and cookies. I wondered what I would eat that would satisfy me. But I took it as a challenge to get creative in the kitchen and try new things. I've tweaked my diet over the last four years, discovered more intolerances, and am in a happy place. I know what fuels me well, and I know what makes my body happy. It's a far far cry from how I used to eat.


Give up the stuff that hurts you, and play with your food! Sure it will take some adjustment time, but it will get better.
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#812683 Some gluten-free Bread May Not Be Gluten Free!

Posted by bigbird16 on 22 July 2012 - 05:38 AM

1342906824[/url]' post='812528']
Scott, on the celiac.com website you list corn as an acceptable food on a gluten free diet, with no mention that it may not be appropriate for some people. You say: "In any case, as far as we know, corn does not seem to cause harm to celiac patients."

Would it hurt to say that corn may be harmful to some people? Do you see what I'm saying? I'm coming to you for current, accurate information and making a blanket statement that corn does not seem to cause harm, etc. is absolutely not accurate across the board.


Corn IS acceptable on a gluten-free diet. So are sorghum, buckwheat, lupine, amaranth, etc. But they are not acceptable across the board. Corn and rice are the only gluten-free grains or grasses that I do not have some sort of reaction to; I am very sensitive. Sorghum, buckwheat, lupine, etc. make me feel like a sick dog's excrement. So should there be a disclaimer for ALL things containing gluten-free grains and grasses? No. I use my brain. For the new Celiac, there's no reason to be alarmist. You don't automatically strip your diet of things that MAY be a problem. If you don't feel better on a gluten-free diet, THEN look into what may be other culprits. NO food is acceptable across the board. You can be allergic or intolerant to anything that's consumable. You simply have to listen to your body and do what is right for yours. This is a wonderful forum for getting ideas on what else to explore when there are further issues beyond wheat, barley, and rye. And a big part of that is because of the wide range of digestive experience.
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#809852 Need Advice

Posted by bigbird16 on 09 July 2012 - 03:37 PM

We have catered lunches a lot at work and go out for staff meetings while we're on travel. Lunches are always provided on travel. When we are visiting colleagues in other states, they often feed us. I take my food along, open it up, and eat it like it's nothing. I never eat any of the provided food. If asked, I say "multiple food allergies" and move the conversation in another direction. At restaurants that can't accommodate, I just order tea or coffee. No one can't forcefeed me. Some colleagues have looked at me funny or asked for more details, but I've worked to make sure they see someone competent at her job rather than the girl who eats differently. It was awkward at first, but now...whatever. If someone thinks poorly of me, that's his/her problem.
Take and eat your food. You don't have to go into details with people. It'll be a curiosity at first, but soon they'll just come to accept that you bring your own food. Your health isn't an issue for compromise.
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#778154 Today I Celebrate Celiac !

Posted by bigbird16 on 03 March 2012 - 07:18 PM

Congrats to you both!
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#751783 Still Angry Sometimes After 2 Years

Posted by bigbird16 on 29 November 2011 - 09:01 AM

SometimesI have little burbles of anger that spurt up when I'm especially tired orfrustrated or stressed. If any of the doctors along the way over the past 38years had been worth their salt, maybe my health would have been better andthere wouldn't have been so many problems. My birth mother had a "wheatallergy" and a weird rash. When I was a baby I was diagnosed with foodallergies that the doctor said I would outgrow; my dad didn't tell me aboutthese things until I was at the end of my rope three years ago. I startedhaving horrible digestive issues as a teen. I would stink up the bathroomsomething fierce and spend the time between classes in the restroom at school.My belly hurt. I associated them with milk and refused dairy for years, whichstopped the D and bloating. My folks didn't believe me and told me it was in myhead. (My gluten issues are more neuro than gastro; that's the way I tell what's got me when I've been bit now.)

When I moved to Northern Ireland for grad school, my diet changed. I ate a lotof whole, fresh foods, skipped the bread and pasta in favor of cheaper rice. I refer to that year as the year I awoke from a dream.Everything was so vivid and clear, like a fog was lifted from my head. As soonas I moved back to America, my body seemed to slow down again. It continued toslow down even though I took up dance. I was tired and achy all the time andfelt like sleeping. I gained weight like crazy in spite of a heavy danceschedule and walking everywhere (no car). Doctors said my joints were fine whenI complained of joint pain. They said I was healthy when I said I wasexhausted. They kept brushing me off.

A friend's husband had this horrid bodybuilder diet that consisted of rice, turkey,and fiber tablets and pretty much nothing else--no gluten or dairy. I decidedto try it to lose the weight. I dropped four or five dress sizes and feltphenomenal, so alive and awake. Nothing hurt, and my stomach, which alwayslooked pregnant, was flat for the first time.

Gradually I went back to my old eating habits. And the migraines began. Istarted getting clumsy--bumping into things, dropping things, falling down. Itwas a really slow, gradual process over time, but I started feeling worse andgot to a point where I didn't even remember what it was like to feel goodanymore. I couldn't climb the stairs without getting winded or complete onedance, much less a whole set. I wanted to sleep all the time. I became a shellof a person. My heart would flutter and squeeze; I was afraid I was havinglittle heart attacks. My joints hurt so bad. My whole left side was tingly or numb,and the buzzing in my head finally became a constant companion. D was my"normal." And doctor after doctor said I was fine and in good health.One told me to stop bothering him. Not one made a dietary association. One saidI might have some allergies and gave me some Allegra to help with thebreathing.




Please tell me how amigraine for 20+ days out of the month, numbness on one side of the body,lethargy to the point of needing a nap after cooking breakfast following a fullnight’s sleep, pain in nearly every joint of the body with not many of themhaving a history of injury, D every day, bloating, shortness of breath, anxiety,falling down, etc. is f***ing “normal” and “healthy” in a 35 year old!



ByNovember of 2008, I felt like I was slowly dying with zero energy, constantpain in my joints and head, a thick haze blanketing me, falling asleep at work, nodding off intraffic (finally got a car), and feeling crazy. After a particularly badmigraine, I was talking to my dad and he mentioned the babyhood allergies andhow a friend of his felt better without gluten. I looked at the piece of toast I was eating and put it down. I went gluten-free that day, and within daysfelt amazing changes taking place. I was happy for the first time in ages.



Ihad already been gluten-free for about three weeks when I found out there wastesting for Celiac. I called my doctor’s office; they wouldn’t talk to me abouttesting over the phone and couldn’t get me an appointment for weeks. I couldn’tchange PCPs at that time. I tried to go back on gluten so that I couldeventually be tested. I lasted (or didn’t) through one piece of bread. I gotahold of a BioCard test from Canada. Well, being gluten-free for four or fiveweeks by that time, of course it was negative. But my body had given me theanswer I needed. Migraines reduced significantly, but migraine doctor saidthere was no association between gluten and migraines (i.e., it’s in my head).Whatever, just give me my Imitrex and shut up.



Stillfeeling a little funky with more migraines than I would have liked six monthslater, I did the Enterolab testing for gluten and dairy. I was actually happythat the dairy was through the roof high and that the genes were associatedwith dairy sensitivity. That proved to me that what I thought as a teen was notin my head. Cutting dairy cut more migraines and cleared gut issues. Gluten was positive, too. Soy later proveditself a problem. And I have since founda migraine doctor that at least accepts what I say and is willing to trydifferent treatments for the headaches that remain.



Ifsome doctor had paid attention earlier on….But it is as it is. Am I Celiac orgluten intolerant? Who cares? Body hates gluten. I’m lucky that I have my lifeand that I didn’t alienate all of my friends or lose my job. I’m fortunate tohave you all. I’m in good shape now, and there’s a lot to do in the future. Butyes, I understand the anger. (Sorry so long.)


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#738084 Making Fun Of Gluten Issues On New Cbs Show

Posted by bigbird16 on 12 October 2011 - 07:28 AM

Without someone taking offense, racial slurs and hurtful names for those with mental and physical challenges would still be considered appropriate. And where does the misinformation stop?
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#738053 Anyone Relieved Of Celiac?

Posted by bigbird16 on 12 October 2011 - 05:06 AM

Ah, if only there was a pill or a mind trick! :) None of us would choose to live this way if we didn't have to. If I could never worry again about what goes into my mouth, what has been left on the counter or keyboard or door handle by coworkers, what my little niece has stuck to to her sweet little hands and face, what the waiter at a restaurant understands and does when I say, "Please do not put bread on my plate;" if I could chow down at a wedding or party or dinner date just like everyone else; if I didn't have to go through the whole spiel about no I can't pick the ham off a deli sandwich and yes pasta contains wheat every single time I see my mom; if I could in the heat of the moment kiss a guy; if I could fill my kitchen with beautiful home-baked cookies and cakes again that people wouldn't eye with suspicion before downing and then deciding they weren't poison after all -- I would in a heartbeat. (It's taken me three years to get to the point where I finally want to decorate cakes again -- all gluten-, dairy-, and soy-free, of course; I started making gumpaste flowers for my birthday cake last night. They're so ugly! lol) No pill, no biofeedback, no acupuncture, no quantum healing, no nothing other than following a strict gluten-free diet forever will stop this disease. Read all of the real research from Celiac experts (like Dr. Fasano, etc.) and stay up to date on news and breakthroughs from reliable Celiac news sites (like Celiac.com, Celiac Disease Foundation, etc.). A real cure will scream loud and clear like a fire engine in the dead of night once it's found; it will not lurk. There are a lot of crackpots out there who will prey on people who are desperate for normalcy. The good news is that humans are good at adapting, and whatever change you make will eventually become your normal.
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#737543 Was I Wrong?

Posted by bigbird16 on 10 October 2011 - 06:01 AM

You weren't wrong at all. Your house, your rules. I've told guests that they may not bring gluten, dairy, or soy into the house under any circumstances. If they go out to eat, they may not store leftovers in my fridge (eat it all or pitch it, basically). Still, one guest who was staying a week cced me with soy sauce, cooking chicken for me after cooking chicken for her kids and not cleaning the pan well between cookings. She had takeout packets with her, which I found out about later. It ruined Thanksgiving. Your health is non-negotiable, and you should feel safe in your own home.
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#735881 Halloween At The Office

Posted by bigbird16 on 03 October 2011 - 05:51 AM

We've started doing these "morale boosting" activities at the office (when what really needs to be done is some manager training, but that's another story). They almost always involve cupcakes and cookies and sometimes pizza. If I know they're happening, I bring something suitable for me and usually don't care what they're eating. Last year's Halloween thing was great -- we decorated pumpkins and no food was involved. Because the pumpkins were deemed "too hard" this year's Halloween activity will be cookie decorating. I offered to make the cookies (to avoid the inevitable crumbs all over the conference room and the cc on the decorating materials) and was told I could make my own. Pretty much figured that would be the answer. I'm fine with that. Just stay away from me with those crumbs. So I'm going to pull out the stops and make my own cookie and bring my own serious decorating supplies (used to decorate cakes) and make the most amazing Halloween cookie. I'm thinking something 3D -- maybe a pumpkin made out of multiple cookies glued together with royal icing or a headless horseman made of fondant with a pumpkin-decorated cookie for his head or a spider up on glass-like sugar legs. It'll go beyond their tube icing and candy sprinkles.

And for my birthday this month, screw their cupcakes that I can't eat. I'll bring in the most fabulously decorated cake ever and make my tastebuds happy. :D
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#720244 People Not Taking You Seriously

Posted by bigbird16 on 02 August 2011 - 09:13 AM

Strawberryshortcake, I'm sorry for your situation. You hear a lot of things on this board, because this is a place for celiacs, gluten intolerants, and their loved ones to discuss and to vent (and talk about poop :ph34r: ). In daily life, however, I'm sure that most celiacs do not go around waxing poetic about their latest bathroom accomplishments. I've had friends deathly allergic to nuts and peanuts and can count the number of times in 25 years it's been brought up by both on one hand. The only reason gluten (or dairy or soy) ever comes up with my friends is if it's my first time telling them when the situation requires it (like them handing me a cookie) or they ask if I can have something. I go to food festivals, restaurants, special events, etc. with friends. I just don't eat what's provided. Yes, I get sad and angry sometimes about it, but that can either be vented here on this board or chanelled into something creative in the kitchen. Taking things out on friends is not appropriate. Your friend sounds like an anomaly, and it sounds like she could take a chill pill (provided it contains no wheat starch). But yes, a bite or a crumb or a simple pill can have dire consequences, which can include the vile bathroom things, and for some us neurological issues like dropping things, falling down randomly, and incapacitating migraines. Celiac isn't a quick death like anaphylaxis; it can be a slow one if untreated with the only cure--avoiding gluten,--that manifests in many different ways, internally. Hot water does not kill gluten, because it was never alive. Soap and water can wash it off of dishes, however there are implements and utensils that can harbor stuck-on gluten in crevices. I don't expect the world to conform to me. I must adapt my way of doing things to keep myself safe. No one else needs to understand that, but they do need to respect it. It sounds like your friend needs a reality check. She seriously will drive everyone away by moaning all the time, no matter what the subject. It also sounds like you could use a break from someone who weighs you down. I'll go with you to the summer food festival! I'll take notes and prepare those foods myself (probably better than the originals) and share with anyone who wants some good eats!
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#709994 I'm So Happy!

Posted by bigbird16 on 18 June 2011 - 04:35 PM

How awesome, Sara!!!! Congratulations!!!!!!:D
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#709842 People Who "bailed" When You Were Sick/crippled With Pain?

Posted by bigbird16 on 18 June 2011 - 04:45 AM

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.
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#702815 How Often Do You Cheat?

Posted by bigbird16 on 27 May 2011 - 04:36 AM

An affair with a crumb would send me to the bathroom floor for at least a day and make me a complete b**** to be around for days after, so no cheating here (nor with dairy and soy). There are plenty of great alternatives for gluten-filled comfort foods--Namaste chocolate cake mix with fudge icing, Dr. Praeger's fish sticks, Ian's chicken nuggets, Bob's Red Mill Mighty Tasty hot cereal, Glutino pretzels, Larabars, and so much more.

Sandsurfgirl, Ian's makes awesome onion rings and tatertots (in the shape of letters! fun!). I've found them at Wegman's and Whole Foods. The onion rings do contain corn, for those who are sensitive to that. Usually I make my own with a little Old Bay seasoning in the batter. Mmmmmmm! But for when I don't feel like slicing and mixing and dipping, the Ian's rings are a yummy quick fix.
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