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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Alexolua

Am I Doing Anything Wrong?

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Well, been gluten and casien free (hopefully) for 22 days now. I'm not expecting to magically get better all of a sudden, but not really noticing anything yet. So this post is asking if I'm doing anything wrong, and other such things.

Also.. seeing GI Doc again at the end of August, and he doesn't believe I have any problems with gluten. Small Intestines biopsy, was normal. Blood work was inconclusively, and if I'm not feeling any better by the time I see him.. he'll say that shows I don't. Enterolab says different, and just concerned the family support I currently have, might become less, if doctor re-affirms I don't!

And he says Milk isn't a problem either! He claims that since I don't feel the reaction from milk within an hour, I have no problems with casien. I feel it the next day, usually later in the day. I KNOW I react to milk, because it's the same way every time I have milk. Doesn't matter what else I have.. sigh, ranting.

Anyway, me, health wise.. was just a slow, long progression of health worsening since.. like 1993 maybe.. with just some stomach cramping. I think the gluten has just gone after the large intestines, which the GI Doc says isn't possible, of course. Though makes sense with the symptons I have, and with milk affecting me later, since it needs time to get to the more damages area, right?

Okay.. so what I'm doing to aviod gluten, casien.

Got a new pot for cooking, and a pan. It's a non-stick pan. I don't see how that could have gluten in it? I just liked how I didn't need to put anything else in the pan.

Got a new spongue for cleaning too, and keep that and pot and pan seperate.

I haven't gotten any new cups to drink with. Didn't think that was needed, maybe I should get new ones too?

Using the same knife and forks, and spoons (all metal).. didn't buy any new. Maybe that's a mistake?

Though avioding our plates. Using paper ones instead.

I used a bowl once, for a gluten-free cereal and some rice milk, but decided to stop that, since bowls maybe not safe?

Haven't bought any new cooking sheets for the oven, I just put tin foil over them, so any gluten traces on them should be kept off food.

I have had some Lays products they claim to be gluten-free.. though they have that thing on their website saying they could have gluten in them, so think I shouldn't have anymore of that.

Have had some skittles and Starburst, which I've read on here is gluten free.. so that should be safe? Oops if there's casien in them.. argh.

Have had some gluten free products from the store, and I read labels to make sure no dairy.. ugh.. reduces selection.

Maybe it could just take a long while though? Gluten never seemed to cause any real reactions, just worsening health over time. So I don't think even if I was getting traces, I'd know about it. Ugh.. so people real sensitive, lucky in that regard! lol.. sigh.

Answers, comments, anything all welcome. This was part rant, part ask for help! =)

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Hi Alexolua,

Well, there is alot of questions in your post, but I'll try to address a few of them.

First the milk issue. You still might be senstitive to milk, even if your reaction takes a bit longer than an hour. But regardless, you can speed up your gluten recovery time by eliminating all dairy anyhow. So trying gluten and casein free for a while is a good idea. Try for at least two weeks, then add a little bit of milk and if the symptoms return, then you've got your answer. Personally I get a worst stomachache from dairy than I do from gluten, but it goes away sooner. Check all the ingredients of everything you are eating, there is dairy hidden in a lot of foods and not just listed as milk or casein. This also includes whey, sodium caseinate, lactose, and the obvious ones like powdered milk or milk protein. It is not easy being casein free on top of gluten free, but there are so many people out there who do follow the gluten-free/cf diet that you should be able to stick to it pretty well with help.

Starburst and Skittles do NOT have dairy in them. They should be fine.

I think you are doing fine with addressing the cross-contamination issue at home, but make sure you are staying away from all crumbs and such from the counters and tables.

I hope you start feeling better soon. But don't expect you feeling better to get your doctor to support you. It didn't work with mine. She still insists that it is IBS and wants me to eat MORE wheat fiber! I know that I am gluten intolerant and that has to be enough for me right now. My Enterolab results say positive, and that is enough for me. And I do feel so much better being gluten free, and casein free. Just try not to get contaminated too often, that just seems to do me in far too often.

God bless,

Mariann

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Thanks for the reply.

So I shouldn't be scared to use our bowls? Or be better to get new ones? Also with cups, they have had milk in them.. should still be okay, or no? And fork/knives/spoons.. should be safe?

And yeah, I hate whey! LOL.. there were all these gluten free products I found that had whey in them, made me wanna cry!

I think though, it seems gluten free products are much better at labelling if something is containamented.

Though to make matter worse, you could say.. also pretty sure I'm allergic or intorlent to nuts.

So, trying to be casein, nut, and gluten free!

And actually, my doctor has been quite understanding of my wants.. even said if I'm feeling better when I see him, then good! I have been gluten-free/cf for 3 weeks.. unless I messed up somewhere, like with the lays.

Hmm.. think that's all I got for now. Thanks! Oh, and in your opinion, better to stay away from Lays then too? And sorry, this post is question packed too, lol.

Thanks again! =)

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Oh yeah, and to aviod crums and such.. like if I'm putting my spongue down, I put it on a paper towel, so hopefully safe there! Think I'm doing better than when I first started. =)

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No need to avoid old cups, bowls, plates or silverware.

richard

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I think the level of caution is very dependant on the person. I don't eat anything I know or suspect to have gluten in it, but I use the same plates, pots, etc in my house except for wooden spoons which are designated specifically gluten-free or non-gluten-free (and also one for vegetarian food only since we have vegetarian friends). I don't obsess about whether a bowl was once used to hold cookies because that level of paranoia is really bad for my nerves and is likely to add to my symptoms more than 1/100th of a gram of bread crumbs, IMO.

Also, regarding milk- I normally don't get my symptoms from it until the next day (usually the next morning) but they are very definitely milk related and quite severe. I can eat small amounts of dairy with little to no symptoms, but the more I eat the greater the symptoms. Thus I don't obsess about cutting it down to no contamination there either, I just keep tabs on it and don't eat a bowl of ice cream unless I'm prepared to pay for it later. But I might eat a single cheese puff without worrying about it, or put a bit of shredded parmesan on my rice pasta without any concern.

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Alexolua: I've been gluten free (with lotsa slips at first) for 12 weeks and casein free (with one bad slip) for almost 2 weeks. I went casein free after I did a milk free 36 hour test (in anticipation of my Enterolab results). My dramatic reaction to a 1/4 c. 'lactose free' milk convinced me I needed to avoid all dairy even before my E-lab results said gluten and casein antibodies. BTW 'whey protein isolate' in TWO SMALL BITES of a gluten free/lactose free "Protein Fusion" frozen juice bar after a 10 day CF period made me VERY ILL within 24 hours of ingesting that tiny amount. Just as I experienced with gluten avoidance after a short gluten free period, tiny amounts of casein give me terrible reactions. However my casein symptoms differ slightly from my gluten symptoms. Both are very gastrointestinal, but different symptoms help me trace the source of my painful reactions.

I'm sorry to hear you don't tolerate nuts either. I rely on peanut and other nut butters on toast for quick breakfasts, since I don't tolerate soy milk right now. I like PB&J on toast well enough I don't want to try rice or nut milks after doing high fiber gluten cereals and casein filled milk for YEARS to cope with my irregularity symptoms. BTW eliminating the dairy did even more to resolve chronic constipation than eliminating the gluten. CAN YOU TOLERATE SOY? That would give you a great dairy substitution. There are many different varieties and brands of soy milks, yogurts, ice creams, margarine/butter substitutes and even Gluten-free Casein-free dark chocolate bars, if you can tolerate soy.

Have you checked www.gfcfdiet.com which provides dietary intervention support for parents of children with autistic spectrum disorders? They have a great list of 'forbidden' ingredients which contain either gluten or casein. I had just about gotten the list of gluten ingredients memorized when I got my official E-lab casein intolerant diagnosis. So the GFCFDIET website's list has alerted me to all the forms of dairy ingredients hidden in foods.

Feel free to email me to share struggles and/or triumphs with your Gluten-free Casein-free experiences or just keep posting your questions here. Several of us are Gluten-free Casein-free, and maybe others also can't eat nuts. Above all, IT DOES GET BETTER. Yesterday I actually had my FIRST painfree day since starting the gluten-free approach 3 months ago. :D I can't remember how many YEARS I had struggled with abdominal pain before that, but I was given the "IBS" and lactose intolerance MISdiagnoses over 10 years ago. I received that diagnosis after I finally told a doctor about my symptoms which I suffered for MANY years. Going through a day undistracted by abdominal pain was a strange but wonderful experience. I look forward to many more days like that. ;)

BURDEE

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Thanks all for responses! =)

catfish -> Yeah, I'm still kinda in crazy mode, a bit.. lol.

burdee:

I'm not sure about Soy, I should just drink a big glass of soy milk to find out, if Soy is bad or not, lol.. though haven't found any soy milk I actually like enough to do that with.

I do have Rice Dream's Rice Drink. Seemed decent.. so, think I'd like to find that ice cream you mention!

Did find a soy margarine though.. which to me seems to taste just like butter! Quite happy with that.

That website, I should go visit too.. kinda haven't been too proactive in looking up CF stuff.. trying to get a handle on the gluten-free part.. was enough at the time, lol.

Hmm.. only question currently I got, is if anyone knows of any brands of potato chips (or junk in general) that are gluten-free without the contamination Lays may have?

I need to go to the store, and write down the phone numbers and such on the products to find out.. but if anyone knows off hand, that'd be easier! LOL

Till later. =)

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Alexolua: I don't think Rice Dream's drink is gluten-free. :o That's why I tried soy milks and then bought some almond milk. Maybe someone else can verify this, but I vaguely recall they used barley in processing that beverage. :unsure:

BURDEE

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Oh shoot! I wasn't even thinking about gluten-free when I got it..

Need to think in terms of gluten-free/CF, both!!

Least I haven't been drinking it that much, like only twice. Didn't enjoy it that much.

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I also thought that Rice Dream was gluten-free, but heard that they use barley enzymes. :-( That was a bummer, but I did feel better after eliminating it from my diet. Sorry for the bad news, but hope that helps!!

Brenda

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Thanks Brenda.. and yeah, I got rid of the Rice Dream. Ended up having some of the Rice Dream icecream too, that wasn't dairy free when it claimed so! Ugh.. so, not buying anymore of their stuff. =)

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Remember to check spices and seasons and read labes for "natural and artifical seasoning" which can contain all that stuff you don't want to eat.

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