mama.liz07

I checked out this last article and then linked from there to a study done by the FDA. I thought this was interesting. "In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease on a GFD that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten." https://www.fda.gov/media/81500/download

Mine did too and because of that, I just assumed certified foods would NOT be produced on shared lines. I was very surprised to learn otherwise. And for foods that say "gluten free" but aren't certified, when I called and asked about cross contamination, the companies often said, "there is no chance of cross contamination." I assumed that meant dedicated lines. I now understand that "no chance" often means they wash thoroughly and test. (you have to get very specific with the way you ask your questions). I'm sure shared lines (especially when certified) are fine for some people with celiac, but not for others. I guess my son and I just happen to be the hypersensitive type. We are doing much much better only using products made on dedicated lines!

Thanks! That is a massive list!

Thanks for sharing! I'm glad you've figured out what works for you too! And I agree--I think most companies do a good job following the guidelines of the FDA, certification groups, etc. I just didn't realize until recently how many of my products--even healthy ones like butter, chicken, frozen veggies, canned fruit, etc...are processed on shared lines. Trace amounts just seem to be too much for me, even if they are at accepted levels. Gonna try the gluten-free facilities for a while...seems to be helping!! 🙂

Well, that's good to know. But I sure have been getting sick on shared equipment foods. When I looked at the regulations--how often they have to test, how large the sample is, etc, I think there could be parts of the food that are higher and parts that are okay. And they don't have to test every batch. But whatever is happening, my son and I finally getting well. Trading out shared lines foods for dedicated gluten free line foods. Same types of foods, just different brands. Might be helpful to others too. But I'm just a celiac mama with a celiac son, definitely not an expert. Take my list with a grain of salt! And thanks for the info!

Gluten Free Facilities Ancient Harvest Badger lip balm (Look for gluten free label. They produce some products in another facility) Bakery on Main Better Body Foods Bob’s Red Mill Bush’s beans Cannon Fish Carnation Evaporated Milk Carrington Farms Coconut/Ghee Choice tea Crunchmaster Crackers Dakota Grass Fed Beef Derma-e Endangered Species Chocolate Enjoy Life Everyone Soap Fischer's honey Food Should Taste Good Fourth and Heart Ghee Gluten Freeda Gluten Free Pantry Glutino Green Mountain salsa Green Valley Dairy/Cream Cheese Hillary's Allergen Free Foods Hodgson Mill Gluten Free Honeysuckle turkey Hope Hummus Jollytime popcorn Kettle Brand Chips King Arthur Kinnikinnick Foods La Croix sparkling water Libby's Pumpkin Lil'l critters vitamins Lundberg Malk Minute Rice Musselman's Nick's Sticks Once Again Nut butters Organicville Pamela’s Products Polaner fruit spread Purely Elizabeth PUR gum Red Gold Tomatos Schar Skippy natural no stir peanut butter Sky Valley Foods Success rice Tessemae's Thousand Hills Beef Tinkyada Udi’s Gluten Free Waterloo sparking water Wholesome candy Wholeme clusters Wyman's frozen fruit Xochitl Dedicated gluten free lines—shared facility Blue Diamond (crackers only) Jason’s (toothpaste only) Country Archer Nuts.com (separate part of the building) Walden Farms ***Please use this list carefully. My information is only as good as the representative with whom I spoke. Production process and ingredients could change so this list is time sensitive***

FYI! Certified gluten free foods (tested below 10ppm) are often made on shared equipment. Also, foods labeled gluten free (tested below 20ppm) can also be made on shared equipment. Cumulatively, this could be too much gluten. i.e. If you use too many brands that all contain trace amounts of gluten then you could accumulate too much gluten, even if the individual product amounts are below accepted levels. Brands that use Shared Lines (gluten foods made on the same equipment as gluten-free foods) Alter eco chocolate Amy’s Arrowhead Bird's Eye frozen veggies Blakes shepherd pies Bolthouse Farms Breyers ice cream Classico Color kitchen cupcake colors Conagra Country life vitamins Drews Erewhon From the ground up Gin Gins Grandy oats Haagen-Dazs Hellman's Imagine Foods Jeff's Natural Jalapeno stuffed olives Kind Kraft foods Lance Late july Lotus Foods Lovely Candy company Nature's Bakery Nature’s Path Nestle Organic Valley Orrington farms broth Outshine popcicles Pacific Foods Purdue/Harvestland Chicken San-j Simple Mills Stubbs Unilever Vans Wild Planet fish Natural Sea Salmon So-delicious **NOTE** This is not an exhaustive list. My information is only as good as the representative with whom I spoke. This list is time sensitive. However, I am FINALLY getting well after cutting out ALL brands that use shared lines!

Wow, thanks everyone! I don't have time to reply to each person right now, but I am going to read and consider everything. We'll make this work! :-D Really appreciate it!!

Thanks for your replies! I love the baking mat idea. What do you use to wash down the table? And gloves...you are probably right--he wouldn't play with his lips with gloves on. Maybe just at home would be enough to break the habit. Something to think about. It's nice to know we're not the only one! :-) Any other ideas? :-D :-D

Hi! My 9 year old son and was diagnosed with celiac disease about a year ago. Since then, we have discovered that he is VERY sensitive to trace gluten. Also, he's just one of those absent-minded, really smart, day-dreaming-type boys who is always in another world, thinking...thinking. And when he is thinking, he usually pulls at his lips without realizing it (we have tried EVERYTHING to stop this habit with no success yet). Plus, he just isn't always the most aware of what his hands have touched (in another world). So, in light of all that, we're trying to figure out the best way to handle birthday parties at party locations that have lots and lots of gluten everywhere. Like, chuck-e-cheese...gluten all over the tables, chairs, little kids with greasy pizza hands touching all the games, etc. I can bring our own food and I can wash his hands before eating, but the odds of him sitting through the whole meal without touching the glutened table/chairs, etc...and then making it through all the games without ever touching his lips...eek!!! The jump houses are worse b/c then the pizza grease is all over the inflatables and he's getting it all over this clothes too. We've gotten glutened at several birthday party locations with the cake/pizza problem, even though we are really careful with hand washing, walking to the table without touching anything, etc. I'm not sure what to do. It's pretty much the only time he gets glutened now b/c we're too scared to eat out anymore and our house is completely gluten free. I don't want to cut out birthday parties too... Any suggestions? Thanks! Liz

Thank you for your responses. Cycling lady, we had a pretty good diet to begin with. Avoided processed foods and ate lots of whole foods, so I think it is probably the gluten free diet that is helping him. I did do some reading and learned a bit about his gene-type. There are celiacs with this gene, it is just rare. Looks like he might just be a rare case. Going to follow-up with the dr to find out more. Appreciate your help and advice. It is good to remember that it will take some time to heal...I'm definitely a bit impatient to see him fully recovered! :-)

Okay, the dr just wrote a note on the test. "Celiac genes not present. Not likely that he has celiac disease. Most likely a gluten intolerance." But the test says equivocal. ? Confused. Background, he had a weak positive antibody test. When the pediatrician called with the results, she didn't tell us to stay on gluten, so, we took him off gluten. He has been off gluten for over a month. His GI symptoms cleared up and he started gaining weight again for the first time in over a year. Plus, his nutrition blood tests have improved. But, he still hasn't started getting taller (height growth had slowed down a whole lot). I have 1st degree relatives with celiac disease. I tested negative for antibody test (wasn't a complete panel), but in spite of that, I react strongly to gluten and have felt much better since I stopped eating it. So I have been thinking maybe I have celiac disease like them. I'm really worried b/c his growth has slowed so much (short and thin). If this isn't celiac disease like we thought, then what on earth is going on? Guess we could try a gluten challenge and do an endoscopy...oh that sounds like torture. Any thoughts?

We decided to do a genetic test on our older son and these are the results: DQ ALPHA 1 02:01, 04:01 DQ BETA 1 02:02, 04:02 Celiac gene pairs: equivocal The dr will call next week, but I was researching and trying to see what this means this weekend (just curious). I haven't seen a 04:01 or 04:02 in anything I've read...anyone know what all this means?

I'm essentially in the same situation you are, except my blood test came back negative. I don't think I need the definitive diagnosis to eat like I have celiac (i.e. be really careful and not cheat). I have two family members with celiac (one with a negative blood test too) and when I went off gluten I felt better than I've felt in years...and then when I ate gluten recently I felt awful again (still do). My body does not like gluten and I likely have the gene for celiac disease. I could even get tested for the gene which wouldn't require going back on gluten. Positive gene, body hates gluten...that'd be enough for me. But, if you need a more definitive, standard diagnosis I guess you do what you have to do. Every situation is different. Hope you feel better soon! :-)

No, it wasn't a complete panel...just a TTG. That's really frustrating. Good to know though, thanks!! I still feel really fatigued...hope it calms down faster than months :-( We've thought through everything I did Friday and Saturday and simply can't think of anything else that could have caused such a reaction. Nothing else changed in my diet and no one is sick. I was feeling better off gluten and now I feel like my old, worn-out self again. For me personally, I don't think I even need testing to convince me that I shouldn't eat gluten. We already have to be super careful with cross contamination with my son, it wouldn't be hard to just join in. Thanks for your help!!!