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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

15+ Years Suffering W/ Mis Info.
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7 posts in this topic

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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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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    • What did you drink and where did you drink it?   NOTE if you drink something at a bar using their glasses your asking for trouble BEER IS EVERYWHERE in most bars and a CC hell.   If it was at home and a non grain based liqour then I would be really concerned that it might just be alcohol. I personally can not really drink much of anything any more. I love rum, and I cook with it sometimes in sautes. I also have rum extract/butter rum extract/and rum emulsion I use in shakes, homemade keto pudding/ mixed into dishes. and even add some to drink to give it a rum flavor lol.
    • I can only think of two things, 1 something you put on your potato was contaminated like the butter container could have crumbs in it or something like that as mentioned before, and you could be having a reaction to dairy or what ever was put in it.......IF it was just plain potato and you reacted with bloating and cramping you might have a carb issues, tad rare and most associated with additional auto immune diseases but could be in which case a diet of fats and protein would be your answer much like it is for me now days. What all have you eaten in the privous 8 hours including beverages, condiments, spices and foods?
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