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15+ Years Suffering W/ Mis Info.
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Hey guys,

My name is Jamie and I'm currently 25. I have been contaminated with gluten my whole life, and been suffering in silence without even knowing.

I have ended up being on sick leave from previous work up to 4+ months because my body was so broken down, and I got other symptoms from celiacs like:

Gluten ataxia, constant head pressure / pains, 100% blocked sinus for years, muscle weakness, lost of appetite, depression, anxiety and the list goes on.

As things got worse I indulged into things to make me feel better, but in the long run have made things worse. Much much worse. Things are obviously better now, but I can't seem to get well.

Doctors have no clue, and they laugh at me when I tell them what's up. They believe I'm a hypocondriac and they have usually never even heard about Celiacs disease / gluten sensitivity.

I have been to dietitians, hospitals and what not. Nobody have been able to help me...

I tried going on a 100% gluten free diet beginning a month or two back. Things started great and I did my research. Progress was made and I started to feel gradually better. I now realize what I have been putting down my food hole also may contain gluten. As I am super sensitive, but don't get any proper symptoms it's hard to judge if I have been contaminated or not.

So I pray that someone here has some knowledge that they can help me with.

My goal is to eat healthy, eat as fresh and organic as possible. Making sauces and other additional things on my own from scratch. It is just very overwhelming. Especially being in term6 at Vancouver Film School ans have a lot on my mind. I have now stopped buying "gluten free" labelled foods. Gave away everything I cannot eat, and everything I am uncertain about.

How can I know what I eat is gluten free as i can't feel properly if I got contaminated??

I just get so damn furious because nobody out there can help me... I keep staying in this limbo.... and I am so IU$%)($)$?%(#)?QUY#EW(=IBEJLZKJ sick and tired :/ Life is not enjoyable at this point any more.

Thanks,

Jamie

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You will be able to tell, with time, whether or not you have been glutened. REALLY.

Anxiety is a symptom of gluten contamination. So- you are having a symptom.

My life is a strange combination of whole raw and cooked simple foods, and a few manufactured items that do not set me off. Some of the problem is gluten, other of the problem was the alternative ingredients and the preservative/antibiotic residue. The list of manufactured items changed over time (years) and will continue to change, as manufacturers either become more conscious and determined to be accommodating, or cheaper, careless, and less so. It took a while to figure out the "avoid" list, it did not happen overnight. In general, anything with a grain ingredient that was run through a conventional harvesting/processing system, then used as an ingredient, is a potential problem for me. And it looks like I may react to oats, even the supposedly gluten free ones, so that means some brands of gluten free flours which also mill or use oats in some lines are out, as are some rice chips that use oat bran. But getting rid of diet sodas did me a huge favor, as well as ditching Splenda. Can't do millet or flax, and have to be extremely careful with corn- most corn flours available here are too cc'd, even the supposedly gluten free ones.

Example: Since I am low carb, high protein, and I make almost all my baked goods, I had to change where I purchased nuts (old nuts, purchased locally retail, changed their label to say manufactured/packed on lines with wheat :angry: and I was reacting) and had to clean up a bunch of equipment, had to buy new baking pans, may give away a few old ones- what a PIA. <_<

You will be able to still purchase gluten free labeled foods, and some conventional ones, but it is a matter of just figuring out WHICH ONES. This means you may have to make your food life very simple, keep a food diary/log, and then, after finding safe foods, slowly add back in one at a time, to see what the problem is. It is no use condemning yourself to avoiding all these different types of foods, if it is just one or two ingredients.

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There is no one set of rules for how a celiac should eat because what is right for one is wrong for another. You have to do an awful lot of trial and error (and make quite a few food donations) along the way until you figure out what agrees with your particular body. The simpler you keep it to start with, the easier it is. Don't bother with exotic sauces and fancy shmancy. Just start out with a few foods (and log them as Takala suggests). When you are pretty sure that what you have is not causing you problems add in something else.(one at a time). If you add in a bunch of things at once you can't tell what is getting you. It is a bit boring and tedious at first, but so worth it to get ir right. This way you will end up with a pantry/fridge that contains only foods that agree with you.

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Thanks guys!

I guess the only option is 100% raw, organic food and add on one item at a time like mentioned.

It is just so incredibly boring to eat food without any additional stuff like sauces etc, but maybe this is a great excuse to get crackin' and learn some basic recipes

Takala: I don't buy much gluten-free labelled items and frankly am about to leave those excluded for a while. Used to bake my own bread bad in Norway with a swedish flour that was gluten-free and fairly good. It's hard to access in Canada so I

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Fellow Vancouver celiac here :)

I can relate so much to your post -- I had all those gross symptoms too. In the beginning cutting gluten I've found it's hard to differentiate between possible cross contamination, other food intolerances (dairy, soy, corn, nightshades, coffee, etc) & just general healing. It wasn't until I cut gluten completely that I realized I had other food intolerances, which I was mistaking for gluten reactions. Lactose intolerance is common for celiacs, for instance. If you still eat dairy you could try cut it for 2 weeks then add it back in & see if you react. If you react to it, there's the chance you could tolerate dairy later on, once you're healed from being gluten-free.

For the first 8 months of me being "gluten free", I was still eating a lot of packaged "gluten free" foods, but I've since found instead of switching to all gluten-free versions of foods (some of which are made in a wheat-processing-facility), it's best to stick to whole foods. After being sick with gluten for so long it's important we're eating as much good food as we can -- usually means avoiding packaged stuff, even the 'gluten free packages'. Luckily, meat, eggs, fish, fruit & veg are all naturally gluten free & safe :)

Making your own sauces is the way to go. I've been infusing bottles of olive oil with herbs &/or garlic cloves for extra flavour. Stock up on safe spices: McCormick brand (glass bottle with the green label) is gluten-free.

Cooking in batches is a good idea too; freeze individual meals in ziplocks.

Choices sells a lot of gluten-free (safe) things & they have a rice bakery that does only gluten-free baking. They have ridiculously good "sourdough" rolls! Enjoy Life & Glutino are safe brands for snacks too. Silverhills makes two great gluten-free bread (the best I've tried), "Chia Chia" & "Mack's Flax". They are usually in the frozen section of SaveOnFoods or at Planet Organic. Make sure you get the gluten-free version though, as they also make regular bread with identical names.

If you're going to buy packaged, look for the gluten-free in a circle label; that means it's certified safe. Some products say 'gluten free' (as in no gluten ingredients added), but if they're made in a wheat facility, they're not safe for the super-sensitive.

A great source for certified gluten-free nuts/dried fruit/choc/candy/treats/baking goods is: nuts .com; they sell bulk & ship to Canada. Nuts & trailmix (you can buy bulk ingredients & mix your own :) are easy grab&go snacks. Did I mention they're CERTIFIED gluten-free?! (Just make sure you're shopping in the gluten-free section only; they also sell reg stuff).

If you do any baking (or are willing to try), google Elana's Pantry; she has lots of really simple easy recipes (bread/muffins/desserts inc. meal ideas). I am not the baking type but her recipes are great & pretty much foolproof. Best of all, most recipes use the same base ingredients so you don't have to buy lots of different items!

I found going "paleo" at first helped immensely. I've been eating this way for a month now & my symptoms are finally fading. My gluten-free diet was not enough. Elimination diets or restricted diets (like paleo) are an option to look into if a gluten-free isn't helping. Also, a full-spectrum multivitamin, digestive enzymes & probiotics are helpful to take in the beginning to support your digestion.

Otherwise, for cross contamination, make sure you have your own toaster, set of wooden spoons, teflon dishes, scratched cutting boards, colander.. all of those items can 'hide' gluten.

Hope some of this helps :)

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I had almost exactly the same symptoms as you, missed a LOT of work, and also the same battle with doctors. It's so depressing when you know you feel ill, and these experts with years of medical training look at you and call you a faker. Many of my coworkers also though I was faking when I missed work, which really hurt. The problem with Celiacs is that the symptoms can be all over the place, and all my doctors wanted to do was treat the symptoms, and not find a common cause. I KNEW there was a common cause, and it was through a process of trying different elimination diets that I found the source. I have ZERO confidence in doctors now, because they did nothing to help me get better.

I'm quite new to gluten-free as well, and still learning about what is *really* gluten-free. At first I ate a lot of the gluten-free breads because I missed sandwiches, but I've since given them up because they didn't taste great, were usually full of preservatives, and they were packed with calories. I've found completely changing my eating habits to be easier than trying to find substitutes for the things I used to enjoy.

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I'm so sorry to read that all of you are having the same problems with doctors, symptoms, diet, etc...as I am, but I am so glad to have found this forum so I know I'm not the only one going through this!

:)

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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
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    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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