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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.

Cross Contamination? ?
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Hi all, I'm soon to be going gluten free and was just wondering how important itis to check for cross contamination?

Is it because of it still being a possible danger for our intestines?

Or/and is it because it can really make us feel sick?

And how far do we go? Have separate toasters etc?

Sorry if this is a daft question, but wonder how careful i'll need to be

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It isn't a daft question. It isn't one that anyone can answer either. Different celiacs/gluten intolerants have different levels of sensitivity. My husband can eat any gluten free thing around, and I have to obsess like crazy about the slightest contamination or I get sick. My daughter is somewhere in between. It just depends. The large majority don't have to worry much. To be sure whether or not your intestines are being damaged despite a lack of symptoms, you would need a follow up colonoscopy.

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Hi all, I'm soon to be going gluten free and was just wondering how important itis to check for cross contamination?

Is it because of it still being a possible danger for our intestines?

Or/and is it because it can really make us feel sick?

And how far do we go? Have separate toasters etc?

Sorry if this is a daft question, but wonder how careful i'll need to be

Hi VeggieGal!

I think all Celiacs need to be somewhat vigilant about CC.....don't quite agree with different levels of sensitivity. Damage can happen whether you feel it or not. I think most of us who appear very sensitive, like myself, just have the pleasure of really feeling a hit badly when it happens. Other don't but when they had their biopsies done, there was a lot of damage.

You want to be vigilant but not paranoid.

Many mainstream foods are naturally gluten free and most food stores, in the UK also, have a listing of their gluten-free products. I tend to stick with dedicated facilities for bread and things like that because I do react to small amounts but I think it safer to do so. Genius bread, from the UK, is a dedicated company and have some very good products. I do not usually eat from shared facilities but that mostly applies to anything like carbs...bread, crackers...things where there would be a lot of flour flying around. Some companies do a good job of keeping things separate but you may have to call and see how serious they are about that before making a decision.

You will need a dedicated toaster, for sure, and replace any wooden spoons, colanders which may have been used for pasta, and any pots or pans with porous surfaces. Stainless steel or enameled cookware is OK.....hard surfaces and not porous. But cast iron, if not coated, or teflon coated pans that are scratched up, should be replaced. I found there was little I needed replacing so don't panic and think this will cost you a lot of money. It shouldn't. No one else should be using these items for anything but gluten-free food. Ditto for wooden cutting boards. Once you have these basics taken care of, then the rest is just replacing food.

It's Christmas! Ask your family for a gift certificate to a cooking shop where you can have fun picking out some new items. :)

I wanted to ask....do you have a lot of GI problems? Does your gut hurt after eating something with gluten? It definitley makes things easier if you do! Who wants to feel sick to their stomach? :(

I don't think you will need a colonoscopy, either. That's overkill, unless you are having problems after going gluten-free. Most people heal up fine but it can take a while for you to feel much better, depending on your symptoms. Patience really becomes important but I guarantee you, looking back in a couple of years from now, you'll wonder why you didn't do this sooner. The difference can be remarkable.

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I don't know if you have come across coeliac uk yet. They do a handbook each year of gluten-free foods which is very useful. It covers a very wide range of foods not just specialist ones.

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Oh thanks for your replies, its really helpful to have as much info as poss.

Yes Gemini I don't want to get paranoid but do want to be careful. Luckily Its just me and my 11 yr old son so will get him to eat similar things to me to make it easier.

With regards to GI problems, i think ive just got used to the pains over time..i remember many a time scouring medical books and my dad saying i was an hypochondriac and my doctor would put everything down to stress (luckily I have a new gp). I recently went gluten free for about 4 weeks and when I started eating it again for testing, I couldnt believe how ill I felt in comparison ie, stomach gripes, stabbing pains although my main

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I don't know if you have come across coeliac uk yet. They do a handbook each year of gluten-free foods which is very useful. It covers a very wide range of foods not just specialist ones.

Thanks CMW I will check it out :)

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Oh thanks for your replies, its really helpful to have as much info as poss.

Yes Gemini I don't want to get paranoid but do want to be careful. Luckily Its just me and my 11 yr old son so will get him to eat similar things to me to make it easier.

With regards to GI problems, i think ive just got used to the pains over time..i remember many a time scouring medical books and my dad saying i was an hypocondriact and my doctor would put everything down to stress (luckily I have a new gp). I recently went gluten free for about 4 weeks and when I started eating it again for testing, I couldnt believe how ill I felt in comparison ie, stomach gripes, stabbing pains.

I suppose time will tell if and when i eat cross contaminated food and hopefully i will learn from it !!

You sound like many of us.....I researched things also to find out why I was in such excruciating pain yet no one else seemed to be interested in finding out. The docs will tell you it's either acid reflux or IBS.....NOT! Those are just symptoms of a larger problem and many times it's food related.

Look at the Genius website. They even have just started advertising Indian Naan bread....gluten-free! Makes me want to fly across the Pond for some. :P

After time, if you follow a strict gluten-free diet and then take a gluten hit (this happens to almost everyone in the beginning), the reaction can be more severe. It's just something that happens to many and, I think, a good indicator that you are healing well. Once you cleanse your body of the evil stuff, reactions become more pronounced.

Your son will adjust fine after he realizes there is still much you can eat and the fact he'll be feeling better!

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Well my son is too scared to even have the blood test so I was thinking of trying him gluten free for a while with me and see if he gains energy etc.

Yeah thanks the genius website looks good, I'll give it a try. I did send for a free hamper from Glutafin and was dead impressed with their products..think there was a naan in there too!

Although I think I might find it difficult at first going gluten free, especially for grabbing quick snacks etc.

I've always tried to be abit of an health freak learning about nutrition and my drawers are full of vitamins.... I realise now its because I was lacking in energy etc and was always looking at ways to feel better! Hopefully I now have my answer so im just looking forward to new the challenge :)

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Well my son is too scared to even have the blood test so I was thinking of trying him gluten free for a while with me and see if he gains energy etc.

Yeah thanks the genius website looks good, I'll give it a try. I did send for a free hamper from Glutafin and was dead impressed with their products..think there was a naan in there too!

Although I think I might find it difficult at first going gluten free, especially for grabbing quick snacks etc.

I've always tried to be abit of an health freak learning about nutrition and my drawers are full of vitamins.... I realise now its because I was lacking in energy etc and was always looking at ways to feel better! Hopefully I now have my answer so im just looking forward to new the challenge :)

Sounds familiar...... :D

Really.....it isn't all that difficult, if you like to cook. I never had any withdrawal but was so sick at diagnosis, it was a welcome relief to eat food that didn't make me sick. It's a good time to go gluten-free as there are more and more mainstream products to help with the transition. More important for kids because good luck trying to get an 11 year old to eat a whole foods diet. They will rebel if you remove too much. Some cookies or a little treat will show them that this isn't the end of the world. I had a very easy time finding gluten-free stuff in England. People seem to be more aware than in some parts of the US. I think once your son feels better, he'll make the connection and it will be easier for him...especially if Mom is gluten-free too!

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My 5 year old had his blood test last week on a paediatric day ward. The nurses were fantastic at dealing with a nervous child. I found it different having nurses well used to dealing with kids.

I thought no way would we be able to do it as he melted down before his skin prick test (nut allergy) 15 minutes before.

It took maybe 4 minutes.

Sounds like you know what you ard doing.

There is some very good gluten-free food available here.

Good luck

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Ive heard that Sainsburys are pretty good for gluten free altho I wasnt overly impressed with Asda or Tesco.. I think cooking from scratch is the way to go ..might make a good cook of me yet lol.

CMW, well my son has got more nervous as hes got older but I know getting him blood tested at some stage is a necessity. Do kids have to go through a biopsy in the UK? as I was reading somewhere that in the US they might not have to...but then is an 11 year old classed as over the age limit anyway I wonder?

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I haven't got to that stage as we are still waiting for blood test results. I am kind of going with staying in denial until we get bloods.

There seems to be a lot of variation everywhere on what is needed for diagnosis. I think to get the prescription gluten-free food you may need to. Maybe someone else can chime in?

I must confess I was sneaky to get my son to do it. He knew we were going for the allergy tests and I mentioned that I would talk to the doctor about my possible celiac, but failed to mention it might involve a blood test or more needles.

He had it done from his hand after a freezing spray. He sat on my lap with his arm behind me and we looked a where's Wally while they took blood from the hand behind so that he never saw the needle. I know that set up wouldn't quite work for an 11 year old but just wanted to give you an idea how good paediatric nurses can be. He was rewarded with a magazine too :)

Edited to add - he will need to be eating gluten to get the blood test and biopsy done, which is a good reason to get it done sooner. It can be hard to reintroduce gluten after being gluten-free even a short while.

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Hi all, I'm soon to be going gluten free and was just wondering how important itis to check for cross contamination?

Is it because of it still being a possible danger for our intestines?

Or/and is it because it can really make us feel sick?

And how far do we go? Have separate toasters etc?

Sorry if this is a daft question, but wonder how careful i'll need to be

There are no universal answers to these questions.

Yes, at some point, a high enough level of cross contamination WILL cause damage, to just about any celiac. But studies suggest that levels of 20ppm is the threshold for causing damage to most celiacs. But that's a really, really small amount, so, in effect, it's important to check for cross contamination. (If you could see a gluten containing item contaminating your food (a crumb in your peanut butter jar), it is definitely too much.

Whether it will do damage and make you feel sick, or do damage without making you feel sick depends entirely upon your body. Everyone is different.

Separate toasters are an absolute must. Separate condiment jars (or at least avoiding double-dipping) are also a must. Separate preparation areas can be very helpful, and avoiding things that are very difficult to fully clean is important as well. Things like pasta colanders (especially plastic ones) and wooden spoons and cutting boards are VERY difficult to completely clean. Cast iron pans absolutely can't be shared (though you could likely scour down thoroughly and re-season an old one), and even things like non-scratch pans with scratches in them can't be totally cleaned.

Other things to keep in mind are crumbs on counters, and if anyone in your kitchen bakes with wheat based flour - which can get airborne for a while, then settle as a dust on surfaces, and be very difficult to thoroughly clean.

**IMHO, 20ppm is a ridiculous measure. 20ppm is a density, not a quantity. If I eat one million units of food that is contaminated at 20ppm (say, milligrams, so lets say I eat 1kg (2.2lbs) of food) I get 20 units of gluten (in this case, milligrams). But if I'm really hungry that day and eat 4.5lbs of food, I'm going to get 40mg of gluten, even though the food I eat has the same contamination level. I get twice the dose, because I ate twice as much food. So saying what the density of contamination is doesn't actually say anything about what the dosage for damage is, without stating your assumptions about how much is consumed. Very irritating, I think.

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Cmw...Yes think im going to have to bribe him in some way to get him tested (could be expensive :( !") but will try to keep him on gluten until the blood tests at least

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Hi Tarnalberry, thanks for that info... theres alot to think about. Guess i'm going to have to just try my best and take it one step at a time. Sooo much to learn, but I'll get there :)

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I am guessing a magazine wont cut it with an 11 year old. I already miss the days when a single sticker was enough for bribery :)

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I am guessing a magazine wont cut it with an 11 year old. I already miss the days when a single sticker was enough for bribery :)

yep those stickers were once wonderful.....gone are those days ! ! !
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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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