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How Careful Do I Need To Be?
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Hey, I'm new to this group! Also newly (semi) diagnosed with celiac disease. I'm DQ8 positive, but as i've discovered that isn't always very accurate, but ive been having stomach issues for over 9 months. Trying out the gluten free diet to see if it confirms diagnosis. I've been gluten-free for about a month, but am still getting sick about once a week (which is a lot less often than while eating gluten.) ANYWAY, I'm trying to figure out if I'm still getting sick because I am still getting small amounts of gluten or because it isn't Celiac Disease that I have.

My questions are:

If a product says "manufactured in a factory that also produces wheat ect" is that off limits? It seems as though only walmart products state that kind of thing.

If a product says "may contain trace amts of gluten" is this also off limits? I have been staying away from these things, but like i said, it seems like only walmart brand states these things, and if i look at another brand it doesn't have a warning like that.

When you eat out at resturants, do you ask the cook to clean the grill and take other precautions?

Sorry for the questions. I'm trying not to be too psycho about how careful I am, but it seems necessary.

Thank you so much!!

April

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There is no way I'd eat something that said may contain traces of wheat! As for the facility thing- it is up to you. When eating out you may need to tell them to clean the grill, etc., depending on what you are ordering. Any amount of gluten will harm you, even if you do not see the same symptoms. Good luck, and be careful!

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Hello & Welcome

You need to be 100% with the gluten-free lifestyle. I would not eat anything that stated may contain traces of wheat or gluten. The made in a factory that also process' wheat products. Many of the lines are dedicated lines or cleaned after every use.Others may not be. This statement is put on packaging so they can't be sued, legal issue with the new labeling laws....

If you are a very very sensitive celiac ( which you are not) then I probabl;y would be extremely careful...

Its good to ask questions that is how we learn.

We always try to eat at restaurants that have a gluten-free menu or knowledge of what gluten is! Most sports bar type places do not have a good track recoed. Ie: Applebee's,TGIF'S Even ththe chicken breast is flash frozen with a glaze that is not safe for us.

Chili's

Carrabas

smokey bones

carino's

five guys burgers

red robin .

Wendy's

boston market

plus many many more have gluten-free options....

hth

mamaw

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How Careful? -- Very, very careful. Always.

With people new to gluten free eating it often is a cross contamination issue. Did you get a new toaster? New baking pans? Do you prepare gluten filled food in the kitchen? Share cutting boards etc. I realize that it is not always possible to buy new appliances and cookware but can you scour some of the ones you have and then use them for nothing but gluten free items. Any cuts in a nonstick skillet can harbor gluten. After a while the chance of getting cross contamination will go away if you use the pans only for gluten free items. Continuously going between the two types of cooking increases the chance of cross-contamination.

Also despite what many say the cosmetics and even cleaning products can "gluten" you. Check to make sure that everything from your toothpaste to your hand lotion is gluten free. I have been doing this for 5 years but still slipped up in using Sensodyne toothpaste on my dentists recommendation. (The Sensodyne company recommends that you use AquaFresh Sensitive)

Also what do you do for hobbies? Fun activities? Crafts? I will never forget how sick I got when I grouted the tile in my kitchen. Never crossed my mind that the grout had wheat in it. If you have to do this either buy the premixed stuff or have someone else mix the powder well away from your breathing space. Many adhesives including good old library paste have wheat in them.

The reason people call this a lifestyle change rather than a diet is because so much more than eating is involved in staying healthy.

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I've been wondering about the cross contamination also. My nutritionist told me about a cereal that was supposed to be gluten free (was even on the box) but on the list of ingredients it said it was produced in a facility that makes wheat products so i kept away from it. I've been keeping "normal" food here for my boyfriend so i guess I need to start segregating things. Time to get a new toaster, and this is a perfect excuse to get a new set of pans like I've been wanting.

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the "processed in a shared facility" question is tricky. if you have a shared kitchen - even if your friend brings a granola bar into the house - you have a shared facility right there. it is certainly possible to avoid cross contamination in shared facilities, and it is also certainly possible to have consistent problems with cross contamination. you have to decide for yourself based on your experience and other people's experience what the right answer is FOR YOU, as there really is not a universal answer.

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Hey, I'm new to this group! Also newly (semi) diagnosed with celiac disease. I'm DQ8 positive, but as i've discovered that isn't always very accurate, but ive been having stomach issues for over 9 months. Trying out the gluten free diet to see if it confirms diagnosis. I've been gluten-free for about a month, but am still getting sick about once a week (which is a lot less often than while eating gluten.) ANYWAY, I'm trying to figure out if I'm still getting sick because I am still getting small amounts of gluten or because it isn't Celiac Disease that I have.

My questions are:

If a product says "manufactured in a factory that also produces wheat ect" is that off limits? It seems as though only walmart products state that kind of thing.

If a product says "may contain trace amts of gluten" is this also off limits? I have been staying away from these things, but like i said, it seems like only walmart brand states these things, and if i look at another brand it doesn't have a warning like that.

When you eat out at resturants, do you ask the cook to clean the grill and take other precautions?

Sorry for the questions. I'm trying not to be too psycho about how careful I am, but it seems necessary.

Thank you so much!!

April

I am struggling w/the same question and just today (after 3 months of gluten-free) went out and bought by own baking sheets, wooden spoon and collander. I felt GREAT at first, now I'm back to diahrrea and I can't figure out why??? I did have gluten-free oats for the first time in about 8 weeks on Wed and, although I had was struggling w/some loose bowels before that, I'm back to diarrhea about 4 times a day for 4 days since eating the oats. I know I could have other intolerances, but I'm wondering if it's more CC - I'm careful, but not super careful, escpeially when it comes to dish rags and dish towels....btw, how DO you clean counters off when you have gluten eating people in your house too? Do you always just use papertowels??

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I did have gluten-free oats for the first time in about 8 weeks on Wed and, although I had was struggling w/some loose bowels before that, I'm back to diarrhea about 4 times a day for 4 days since eating the oats.

Approximately 10% of celiacs cannot tolerate even gluten free oats. You might see if taking them back out of your diet helps.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
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