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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.

Gluten-free Vs. No Gluten Ingredients
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6 posts in this topic

I was just diagnosed on Monday and am trying to figure things out and am hoping someone can provide some insight. I am trying to understand how much I should be concerned about cross-contamination, both at home and outside the home. When looking at lists on-line, such as Trader Joe's No Gluten list, I am finding some companies stating No Gluten Ingredients instead of Gluten Free. Is this something I need to be concerned about? Is there a way to determine what is considered safe, if produced in a facility that also produces products that contain gluten? Thank you in advance for any information.

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I initially didn't worry about this, in part, because I used very few products at first. I didn't try to substitute everything but just ate what was naturally gluten-free. Over time I have added in and tried more products and have come to see that I'm very sensitive and have clearly reacted to products that were labeled gluten-free but produced on shared equipment. It said on the box that the equipment was cleaned according to allergen control procedures and that they were tested to be under 5ppm. When I contacted the manufacturer, they told me that another one of their products was made in a dedicated(gluten-free) facility. So, I stick to that one. It is a personal decision where you want to draw the line. I personally feel that there is a greater risk of cross-contamination with dry products if they are made on equipment or in a facility that is shared with wheat. When they say "no gluten ingredients" then you don't really know if it is in a shared facility or on shared equipment. You could call or e-mail the manufacturer to ask them about it. Many have shared their experiences with reacting to various gluten-free products so there is some risk involved, even if it is slight. I may not react to the same one that someone else does but the cummulative picture tells me that there is some risk. We all have to decide for ourselves if it is worth it. You can always choose to buy only products made by dedicated gluten-free companies in dedicted gluten-free facilities. It's limiting but it's safe.

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Thank you very much for all the information and sharing your personal experience, very much appreciated!

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I tend to read labels very carefully and avoid products with any kind of gluten in them; however, I don't seek out totally gluten free dedicated line foods. This may be because my reactions haven't been as extreme as others have.

You will become an expert at reading labels in short order. It's probably easiest to start off with totally gluten free products and add in others as you feel comfortable.

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As far as cross contamination at home there are many tips on this website. Personally, if something with gluten "touches" my stuff I consider it contaminated. If I am cooking a gluten free dish and a non-gluten free dish I can't use the same spoon in both. I have to use two different sets of utensils. Dishes, cups, silverware should be washed in hot soapy water or I personally prefer it to come out of the dishwasher before I consider it safe to use. For example, I went out to eat last week and I couldn't figure out what made me so sick...I remembered the deep fried onion rings that were on my food when it arrived. Silly me pushed them off, didn't see any crumbs and ate the food. Well, I was sick within minutes of eating. I am still learning too.

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Keep in mind that, today, any label that discloses possible contamination sources is totally voluntary. There is no law or regulation requiring it, so the absence of such a disclosure on a label does not mean anything.

Do you ever eat in a restaurant? If so, the kitchen is a shared facility and the dishes and cutlery are shared equipment.

Do you have any gluten-containing products in your house, perhaps for other family members? If so, then your house is a shared facility. Do they have their own dedicated dishes, cutlery and dishwasher? if not, then, well, you get the point.

When I see these notices, I consider the type of product and the likelihood of a problem, while keeping in mind that the next product over may be just as risky while not telling me.

When I see "may contain traces of ..." I worry more, but still realize that this may be nothing more than a CYA statement for a shared facility.

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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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