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Guest Kathy Ann

How Super Sensitive Can A Celiac Be?

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Guest Kathy Ann

I am being as careful as I know how to be. My kitchen can't be gluten free, but I never put my fingers in my mouth and I never put my food on the counter. I cut everything on a clean plate and keep all of my food separated and securely in ziplocs. I DO use dishes washed in a dishwasher with gluten foods, pre-rinsing them well and checking them before usage. Maybe that will have to change. I make all my own food from scratch and I never eat out. I do live around pizzas baking in my oven and other foods I'm highly allergic to being prepared, but only the aroma in the air, packaging trash, dirty dishes and crumbs on the counters which I completely avoid. I do admit to handwashing the dishes a few times and sloshing my hands around in water full of gluten and cheese. But I wash them thoroughly with soap and water when I'm finished. All my cosmetics are gluten free.

Where am I getting glutened??? I am OK for a few days and feeling like there is hope. Then it's obvious that something is dreadfully wrong and here it goes again. I am spending most of my days withdrawing from a glutening before the next one.

Today I did a project which required me to take several hundred round labels off of sheets and put them on products. I would take off 4 stickers, adhering them to the tips of my fingers and then put them one by one on the product. Is it my imagination? I actually got an attack! Is that just silly? Can celiacs be this sensitive? Are any of you this sensitive?

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Kathy Ann,

I am also super sensitive and I know what you are going through. I really can't give you much advice except to keep trying your hardest to get yourself healed. That seems like the hardest part to me. I'm 22 and I haven't been able to get back to college because of celiac disease. I get migraines often due to the stress of either being glutened or worrying about it. I feel like I cannot get on with my life until I heal, which is an awfully slow process. It seems like you are doing everything right, as I am also doing. It never feels like it will end, but there's nothing we can really do except stick with it. But you're not alone being super sensitive. I hope you find the balance you need. Good luck.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Guest cassidy

I am very, very sensitive. When you were talking about your dishes, I use the same silverware and plates, cups and my gluten eating husband but we have different pots & pans, can openers, and strainers. Anything that is scratched like baking pans or cooking pans that sticky gluten can get stuck in - I have my own. Also, I kwow I don't put those things in the dishwasher so I wonder if they are cleaned as well by hand. If any of your stuff is old or scratched, you may look into that.

Do you share butter or any condiments? I know it is hard when you live with people who are eating gluten and aren't paranoid about what they do with their gluten crumbs or gluten hands.

I get anxiety when I'm glutened. I get to the point where I am paranoid and it lasts for a few days. My heart pounds and I am jumpy and misesrable. I was taking xanax before I went gluten-free because I felt like that most of the time and after going gluten-free I can clearly see it was from the gluten. Now, when I'm glutened I take a xanax and I can feel myself take a deep breath about 20 minutes later and everything gets better. It doesn't make me feel funny or high or drunk, it just takes away those symptoms so I can function. I would recommend talking to your doctor to see if he thinks that something like xanax would at least help with these symptoms of being glutened. I don't usually like to treat symptoms but if you are trying to figure out the cause at least you can be less uncomfortable while you are doing that.

As far as the stickers are concerned - they could have had gluten in the glue. Since glue is sticky who knows if you didn't wash all of it off when you washed your hands or what could have happened.

I would start keeping a food journal to see if there is one thing that you are doing without realizing it that is the common factor when you get sick. It is hard to be a detective, especially when you don't feel well, but that is the only thing I know how to do.

Hope you figure out what is getting you and start to feel better soon.

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Guest nini

yep we can be THAT sensitive. It sucks doesn't it... sometimes I have absolutely NO CLUE what got me, but it's obviously a glutening because it's much more than a tummy ache... it's the brain fog, crippling joint and muscle pain, anxiety, heart palpitations, diarrhea and cramping and so on... My house isn't completey gluten-free either. My husband eats gluten and although he's careful, he's not AS careful as I would like and I hardly ever eat out anywhere... (mostly from lack of funds to do so...) so I know it's coming from my kitchen. Frustrating as all get out, but I think the longer I am gluten-free, it seems that those episodes aren't nearly as severe as they have been (I could be wrong)...

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Every time somebody has checked on the self-adhesice sticker type things they have been gluten-free. It's not the type of adhesive that is likely to have wheat.

richard

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Oh, I feel so stupid! Thanks for mentioning the can-opener! Hmmmm...no wonder I can react to foods that have no gluten in them. Sheesh.


Chronic Ear Infections

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Kathy-Ann,

How long have you been gluten-free? Are you sure you're reacting to gluten and not to other foods? I ask because I continued to have reaction-symptoms on and off for a couple of months after I'd clearly eliminated gluten -- for a while, I thought I might have other intolerances (which is a distinct possibility, as many other people on the board can attest), but after playing around with a rotation diet, I couldn't pin it down to one food (except dairy -- which was a lactose-reaction -- and that's disappeared since I've healed a lot more).

What I eventually discovered was that my body was just really strung out and having a hard time adjusting for a while -- I had to dig in and focus on wellness, exercise, vitamins and lots of rest for a while and eventually started to feel a whole lot better.

eleep


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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Guest Kathy Ann

I'm sorry, I didn't mention all the other allergy foods. Yes, I am allergic to several other major foods and am carefully staying away from all of them as well. I have been gluten free now for 9 months. I have a decent day now and then, so it looks promising that this is could finally be it. But it also seems as though I'm getting repeatedly sabotaged. That's why I suspect an accidental glutening.

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I happen to disagree with Richard. . .I've had gluten reactions from glues. . .but we've agreed to disagree on this one, so I simply state the fact, nothing more.

Have you replaced your wooden and plastic cooking utensils? What about your medications and vitamin supplements? I can't share a toaster with non-gluten-free people. . .splurge on a little one for just you. I also wash my own cutlery and any plates etc that have been sitting out in the kitchen before I will eat off them. Also consider the smooch factor - two hours seems to be the consensus for those of us who are sensitive enough to have trouble. I also have a seperate dishtowel and handtowel for the kitchen when I share with non-gluten-free users.

Oh, and when I have to do a lot of labels at work, I wear gloves (in my case, non-latex, powder-free. . .just to make life fun). . .you might look a bit dorky, but at least you'll be healthy.

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I am sensative enough that contact a few crumbs will be enough to make me sick for 3 or 4 days!! here at HOME home i share a lot of the same things, but up to a point. i dont use any wooden spoons, etc. use separate silverware unless they say they didnt use it for gluten-y foods.

When i'm washing dishes, either washing or rinsing, I have to wear gloves. I get bad allergic reactions to touching gluten, even in the water. my hands would turn pure red and burn and itch.

i'm also so sensative that i cant walk into a grocery store (that bakes) without my allergies flaring up. i have no sense of smell, but when it comes to smelling flour, its like someone stuck a skunk under my nose. it smells absolutely disgusting!!

So yeah it could be any little thing that could be glutening you, and we usually find that out the hard way, hey?

~lisa~


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Kathy Ann, I'm probably just an extreme case, but in my experience all it takes sometimes (not all the time) is the SMELL of glutenous goodies baking to make me sick for a few days. Technically, a scent is made up of many tiny little molecules of the actual thing that you're smelling. If you smell wheat, that means that there are many tiny little wheat molecules entering your nasal passages. I think that's how it goes. Someone please correct me if I'm wrong.


~Angie~

Gluten free since May 2004

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I am extremely sensitive to something. I don't think it is gluten. I have the problem with reacting from odors. For me tomato and chili powder make me flush, heart rate picks up. I even had it happen last week after waiting in the doctors office. I went in fine and after 15 minutes in his environment I was feeling like a caged animal.

I have cut out all grains, legumes, nightshades. I still react. Now I am compounding medications. Vitamins make me sick. I am trying to figure out what to take.

Somebody mentioned it takes a longtime to heal. How long is too long to just becareful and wait? I am worried that if I ignore the nerve stuff it will become permanent.

I am wondering if I should be looking into immunology, or check my liver levels. My reactions are not stomach related. It is sweats, flushing, nerves, pain, migraines. I have tried hard using a diary to find triggers. I cut out anything that could be suspect. I even stopped using tampons because they are made from rayon which comes from corn cellulose.

My husband has gone completely gluten free at home with both food and personal care items just incase I was getting it from him. It really has not helped.

I am kind of scared that all I am told is to wait. I hoping what I am waiting for is not something serious to develop. I have been gluten-free 7 years. Grain free 4 months. Eating low salicylate diet 4 months. At first I thought it was better and now it is back again.

Am I missing something?

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