One of the many, many frustrating things about celiac disease is that you can get glutened and you can have no friggin’ idea where it came from. It happened to me last month and though I’m almost recovered, I still have no idea how I got hit.
The latest “Dear Gluten Dude” comes from a Mom who is down and out and whose frustration level is reaching a boil. Even though her house is totally gluten free, she got glutened but she doesn’t know how or where. So she is reaching out to us for help.
What are some hidden sources of gluten that she should be looking for?
As always, thanks in advance for your input.
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Dear Gluten Dude,
I am at my end point. Not kidding. I am gluten free, my house is gluten free and my daughter just got CD diagnosis.
I got glutened.
Luckily I have friends to step in and help with after school activities. My husband, my friends, we have scoured to house…can’t figure out where it came from. I haven’t been this sick in a long time. It takes me 5-7 weeks to feel “normal”.
I have PTA, room rep, publications, book fair…I CANNOT get sick.
Where do you look when you think you have checked everything? I don’t eat out…I have actually started to prefer not eating b/c it makes things worse. I can’t run to the BR every five minutes and run a meeting. I can’t put my saint of a husband through this.
I am just so frustrated.
So again, I ask the guru, where do I look for the hidden stuff?? I have done all the labels in the house, soap, shampoo, lotion…sorry to come across so down and out, but I just need a punching bag and my trainer won’t let me use his! Lol!
It’s in damned near ALL food labeled “gluten-free.” We’re at the same point in our household; sick and tired of being mysteriously glutened. However, as of late, we’re discovering that even products made in a gluten-free facility contain gluten. For instance, Bob’s Red Mill responded to us yesterday and they said their products are tested 19ppm or under. Well, that’s not safe for a Celiac. You must beware buying processed foods. We’re moving to a diet free of processed foods. We’ve got to feel better. Myself and my 4yo son have Celiac and I’m sick and tired of being sick and tired. I’m disgusted at the labeling standards that are literally making us sick. This also means that eating in restaurants is not suggested. Not only because it only takes 1/5 (one-fifth) of a bread crumb to make us sick, but also because they are purchasing products labeled ‘gluten-free’ which likely are not safe for us. I hope you get it figured out.
Totally agree with you! We don’t trust any product labeled gluten-free any more. Sticking to the basics in our house now. Just had to stop using Bob’s Red Mill, too – found it was affecting us all (our whole family is gluten-free).
Also starting to buy from companies that only produce products that contain no gluten. For instance my flax (www.greatplainsflax.com) comes from a company that just makes flax. My teff comes from a company that just does teff (www.teffco.com/products). Rice products from (www.lundberg.com) I might not be able to do this with every food we eat, but I’m trying to do it with as many as I can.
And I’ll also add that for many celiacs removing corn and dairy from the diet as well as yeast may be helpful, too.
When you say yeast, does that include active yeast for making GF breads?
Here here! I only eat 1-ingredient foods unless I make them from scratch myself… all from one-ingredient foods. Also, I rarely eat any ground gluten-free grains or nut flours unless I grind them myself because I’ve had such issues with the processing facilities.
One other thing I discovered… stoneware & ceramic ware (i.e. Pampered Chef) along with a lot of nonstick cookware is notorious for harboring protein particles of anything that has ever been cooked in it. Ever. It took me a while to figure out that my ceramic bakeware was making me sick, but when I did, I got instant relief. We use stainless steel or glass cookware and that has drastically helped my health.
I thought I was going crazy a few weeks ago when I was glutened in my own kitchen. Turns out it was a Bobs Red Mill product. Never again!!!
Bobs Red Mill, is probably the biggest lie in gluten land. If you look they also process Wheat Protien products. I asked them about this several times and have never received a response. It is ridiculous that the label Gluten free doesn’t mean gluten free. 20ppm is a slap in the face of every sufferer of Celiac disease, thanks FDA
We’ve all been there. We sympathize. It’s not fun.
It probably wasn’t anything you did or can do anything about. It was the guy at the meat counter, or the vegetable truck, or any place else your food was handled outside your control. That would include “certified gluten-free facilities”. Stuff happens when you are handling a lot of stuff.
Unfortunately Gluten is EVERYWHERE..I would suggest the make up, or skincare products you use..shampoos, conditioners, deoderant and things such as that. OR..maybe you are succeptable to airborn gluten..? Just a thought.
Trying to figure out shampoo now. I’m dxd since 1999 and very dilegent. Have been using Burt’s Bees for years but recently found out they don’t test for gluten although there isn’t any gluten in the shampoo soooo their reply to my question via email was “ no gluten in the ingredients but they share equiptment with gluten containing products.
Hi,
I’m sorry to hear of this. One time I got glutened by feeding my pets. I washed my hands after feeding them, but the particles got in the air and I inhaled it, which I’ve read can be worse then ingesting it ( I don’t know. ) But I’m wondering if you have pets? Any pets at all. The ONLY gluten in my household is the fish food for our Siamese Fighters. I stay away from it and have been fine, but would love to find a brand that doesn’t have wheat in it.
If you don’t have pets, have you checked all hair spray, shampoos, make-up, etc, etc?
OR, your husband or anyone doesn’t happen to work with dry wall? Or does anyone work in a bakery or any type of exposure they might be bringing home?
Hope you find the culprit asap!
Kelly Baker
Same thing happened to me. I developed DH after nearly 9 years GF. The doc was sure I was eating gluten, but I’m not. We’ve had to go so far as getting GF cat food, and all personal products (shampoo, lotion etc) have to be GF. I almost never eat out anymore. Just found out last week that drywall and joint compound can have gluten in them – this I discovered after working with both to repair a hole in my wall. I feel as if I must constantly be on guard against everything. I will be moving to a diet free of processed foods as much as possible. I won’t put anything in my mouth unless I know it’s GF (as much as you can know), not even a mint from a restaurant – things I used to assume were safe. That’s a bummer to hear about Bob’s Red Mill contamination. Some GF flours have a higher rate of cross contamination than others. 🙁
Also check:
handsoaps and household cleaners – all Method brand soaps and cleaners from Target are celiac safe
Shampoo – we use head & shoulders
makeup – I use Afterglow brand
lipstick/lipgloss/chapstick – we use Perfectly Posh
Facewash – I use Neutrogena naturals
body wash – I use Perfectly posh
deodorant – I use Tom’s
Toothpaste – I use Tom’s
Pet food – we use the gluten-free IAM’s
airborne – We don’t go anywhere that there was flour being used in the last 24 hours (also consider the deli that is right by the bakery. If you’re buying sliced meat or cheese there, flour could have settled on it. Before we go in any house, we ask about airborne gluten (baking mixes, pancakes, cakes, etc.)
Lotions – we use coconut oil
some of the soaps have oats, but don’t seem to be marked certified gf oats. are they safe??
I have been recently diagnosed coeliac. I refuse to become OCD. Conflicting info some saying don’t worry about cosmetics etc others say do. For my own well being I am trying to navigate this very different/difficult landscape. But I refuse to isolate from friend’s and family or inflict this extreme way of life on them. That is not to say I am not being very careful and, this is new to me. However neither can I tolerate the processed gluten free foods they make me nauseous and bloated from the excessive sugar and fats in them. Pretty sure I’d be a diabetic within 6 months. Had a shop bought gluten free sandwich last week and felt ill afterwards, the ingredients list was so long so not sure which one affected me so badly. So basically eating plant based foods eggs, pulses, fish and some meat. Can’t imagine how I’ll cope if I ever go out to eat. Interestingly Italy has a high level of coeliacs, particularly children… apparently the government there has issued strict guidelines to all restaurants on how to adhere to providing gluten free foods.
Have you checked your make up? Toothpaste? Lotions?
Or perhaps you have a crock of gluten free shortening in your house that you are using without realizing that this same crock has been around since before you went gf and likely was contaminated? I recently bought a brownie mix clearly labeled “GLUTEN FREE” and it wasn’t until after I brought it home and set about mixing it that I saw in the fine print on the back that it is processed on shared equipment that also processes wheat. Do you check and recheck your products every time? I have heard stories about people buying a product year after year knowing it was gluten free and then randomly getting sick because the manufacturer had changed the way it was made and the consumer never thought to re-check the item because it had always been ‘safe’.
Whatever the case is I hope you get it figured out 🙁 Wheat belly is no fun!
We have given up most every processed food. The previous comment about Bob’s Red Mill is an eye opener though. I am also vegan because it is helping my body heal. Dry beans, brown rice, fresh fruit, fresh vegetables, brown rice pasta, coconut and almond milks. I wash everything but the pasta prior to use. I have issues with most of the cross reactive foods too. Dairy is a horrible trigger for me.
Our issue is when my kids go to their dad’s house or to my parents’ house. My child with celiac also has autism. She doesn’t understand that she can’t eat things. Neither household wants to accept how serious the gluten issue is.
Oh that’s a bad problem, I wish you well in determining the source.
Here are my ideas:
-toothpaste, body/hair care products, make up, chap stick, sunscreen
-pet food
-vitamins and supplements, unless they specify gf, don’t use them, fillers are problematic
-spices? spice blends?
-are you purchasing spices, grains, nuts, legumes, seeds etc in bulk? Stop immediately, this could be the cause. Only buy prepackaged nuts, seeds, grains, spices that say they are gf until you figure out what the problem is.
-coffee cups if you do drive through, their hands may be covered in sticky donut when they pick up your cup and pass it to you
-are you picking up other people’s pens to use for signing things? same potential problem as coffee cups
-are you inhaling gluten in the grocery store? I don’t allow my kids anywhere near a bakery or the baked good section of a regular grocery store
-I’ve heard rumours of things like strawberries causing gluten reactions because they often have wheat/hay as ground cover where they grow to prevent weeds. Pickers touch the hay and then the berries, and you have contaminated fresh produce. We eliminated strawberries as a result.
-I’ve read a study about mushrooms being grown in hay/wheat contaminated soil. We eliminated mushrooms just in case it was true.
-perhaps you have an additional sensitivity. We had previously eliminated dairy, and we had to drop soya as well. Soya and dairy are in almost all processed foods, including gf foods. If you truly have eliminated all sources of gluten, go for a diet that is completely unprocessed. Go grain free with only protiens and veggies and fruit and this will not just allow your body time to heal, but as you slowly add things back in, maybe you can find the culprit.
Maybe you’re getting glutened outside of the home. The break room of my last workplace was practically covered with bread crumbs and bits from people’s meals (disgusting, I know). Although I don’t know if other people’s lack in cleanliness ever got me glutened, I always felt like I had to be extra careful in the break room, around other people’s desks, etc. So, maybe you are getting contaminated at your kid’s school or the PTA meetings or something? I don’t know if this would happen, but I suppose it’s something to consider. Hope you figure it out!
Do you eat corn products? I notice problems with my family when they eat tortillas corn chips and dairy. Consider trying an auto immune protocol diet for a few weeks and see if you notice can improvement . Then slowly add foods back into your diet. CD is an auto immune disease us it is very likely you are eating many foods that will make you feel badly. Nightshades may also be causing symptoms.
Agreed! Just found this out myself. Went on an anti-inflamatory diet for a month and it made a huge difference. I feel the difference when I don’t follow it.
Anti inflammatory foods like pineapple blueberries salmon turmeric help me also. When I did my food diary and got diagnosed with Celiac disease we discovered all of a sudden I was also sick from corn, most coffees, lentils, chickpeas, peanuts, and a few others. I have nonresponsive celiac disease and airborn particles or particles on my skin trigger full blown celiac episodes lasting average of 5 to 7 weeks. I can’t even pet peoples dogs, enter their homes, nor enter their cars. I am a complete hermit. I cant even live in the same building as gluten. I have been forced to live from campsite to campsite in nature. And I even get glutened from other peoples campfires if they burn paper. Also paper towels often contain gluten so every time you tear a sheet it makes it airborne plus you are touching it. I lost my job and apartment because of celiac disease. No one understands. I even get sick from close talkers who ate gluten. And 5 to 7 weeks of no nutrient absorption and tissue damage making it difficult to walk is no joke.
I feel for you. Something that helped me is looking at other grains, and getting rid of processed foods as much as possible. A lot of the commercial GF foods just are not good for you, not worth the trouble they cause or the money they cost.
There is a lot of research out there vis a vis other grains causing problems too. Yes, this feels a little overwhelming, right back to the “now what do I eat” conundrum, but worth a try.
Soy and corn can be problems for celiacs, esp. GMO crops. So what happened to you might not be gluten-related, unfortunately.
I hope that you get feeling better soon.
Joanna
I agree. You could be reacting to gluten-like proteins in other grains like corn and GF oats. Soy and dairy could be issues too. I had celiac cross-reactivity testing and learned I was highly sensitive to sesame seeds and amaranth!
When I get glutened and actually can identify the source, it’s so much easier to deal with. When you spend so much energy living ‘clean’ and then get hit, it is very maddening!
I’m happy to share where I’ve found gluten hiding in my own house:
1.Listerine
2.Hair Dye
3.Natural flavors
4.My husband’s kisses
5.Shared computer keyboard (teens! grr!)
6.makeup
7.wooden cutting board/spoons
I’m sure there’s more. That’s all I can think of right now, since I’m on the tail-end of being glutened. Brain fog is bad.
What did it this time? My friend was checking to see if her grandbaby’s Gerber “puffs” can was empty. Gust of wind blew the dust in my face when she opened the lid. I started coughing… and I kid you not… it made me sick.
I hear your furstration. As clean as we try to live, it seems gluten is lurking everywhere.
Another suggestion, and perhaps others can speak to this better than I, is that you may be having a reaction to something else in your diet?
“PTA, room rep, publications, book fair,” This doesn’t leave much time for resting and tending to your health. You may need to look at your busy schedule and think about how to minimize your stress level. Doing THIS may be even harder than finding hidden gluten!
My wish for you is that you find out the cause of your health issues. Keep us posted on what you find.
p.s. I’m just going to state a couple of obvious just in case – soy and/or oats?
Hi there,
I know this might sound strange but if everything else in the house seems ok, have you checked if you’re lactose intolerant or have may be developed a response to another ingredient?
I only say this because I too went through something similar not so long ago and found the culprit to be lactose & carbohydrates (incl. rice). Also, for some odd reason I don’t tolerate Glutino brand of products well. Perhaps, it is a certain brand of product that you had that didn’t sit right with you.
Technically I was diagnosed with celiac disease 2 years ago, but I have been healthy only for the past 6-8 months.In addition to being gluten-free, eliminating lactose and reducing my carbohydrate intake has helped me feel better.
I understand these are not definite answers to your questions and might leave you feeling flustered and panicked. But, take it easy and one step at a time. Perhaps consider having a food journal to eliminate what could be the issue?
Good luck,
Hope you feel better soon and finally figure out what’s going wrong where. 🙂
Cheers!
been living the GF life for 32 years now. My rule of thumb is that GF foods are not GF and especially nowadays the easiest way to get glutened is to order something off of a gluten free menu at a restaurant. When first diagnosed I originally cut back to just a few foods I could tolerate then added other foods one at a time so I could keep them isolated. Same thing with soaps, shampoos, and any chemicals in the house. My gluten allergy had made me sensitive to just about any substance but the key was controlling gluten exposure while my body’s hypersensitivity slowly went down. It took several years to accomplish this. It may be that the hidden gluten trigger is a different non-gluten substance that makes your body react as if it has been exposed to gluten. If I stay GF for a long period of time I’m then able to tolerate non-gluten triggers but once I get glutened again I become very sensitive to the other environmental triggers again.
I’m going with one I haven’t seen mentioned…prescription drugs. Did you get a prescription filled recently, change meds, or start new pills? Manufacturers frequently change facilities to gain cost control. Issue is what was made on machines before your drug. Also what was on prescription tray before yours. Someones wheat laxitive on machine before your cholesterol med, you get the idea.
Would agree getting rid of all wooden cutting boards & utensils probably a good idea. Especially if “you’ve had them forever”. Peanut butter, jam, butter, mayo are all “communal condiments” where crumbs can find a home.
GF processed foods are also something to look at labels closely. Made in a facility that processes wheat is a red flag especially on new food you tried. Anything out of the ordinary??
Heck dips& salsas at meetings are frequently contaminated before you get there.
Anything new within last 2 weeks. Did you buy eye liner, shampoo, try just a bite of should be GF snack? Even sample at the grocery store, in my case new GF sausage…they were handing out stuck to a pretzle stick wrapped in napkin 🙁
Maybe it’s not all gluten? Maybe there’s other foods you are reacting to. Myself I cant do dairy & sugar – fruit juice, honey, etc along with garlic & onions which cause the same symptoms as being glutenized. Just a thought.
MaggieC-is that a fructose thing? That sounds like what I’m dealing with concerning my fructose malabsorption.
Oddly enough I found barley as an ingredient in hand lotion. Tossed that. And, I get a very bad reaction to agave. Very similar to getting glutened.
I read a story once about a woman who couldn’t find the source of her consistent but random glutenings. They went through everything in the house, her car, work, anywhere she had been and as I’m sure you have they found nothing. After a lengthy ruling out of this, then that, and the other thing they finally figured out it was her husband. Every time he had gluten during the day (breakfast donut or lunchtime sandwich) and came home and kissed her she was effected. The article had said that normally this wouldn’t effect someone but a combination of her extreme sensitivity and his ‘ineffective spit’ (it wasn’t acidic enough to breakdown the gluten in his mouth, even hours later) were the culprit.
Passing thought as room mom or PTA have you licked envelopes (especially a lot of them) or passed out treats? Helped with the bake sale? Or going into easter have communion?
Vitamins? Prescriptions? Even if it was gluten-free when you purchased it previously it might not have been this time. Did the pharmacist fill the prescription on the same tray as the prescription before yours? Even if the med is GF, the capsule that holds it might not be.
Food color, flavoring…. Was anything “packaged on equipment that also processes wheat….”
Do you still use pots and pans that were once used for foods that contained gluten? Gluten can get stuck in scrapes in pots and pans, especially the non stick type. It can get stuck on containers, utensils, and any kind of food prep container. Mixers, blenders, coffee makers, dishes, anything you can think of. Some things that have scratches may need to be replaced and some need an extra scrubbing
I know I’ve gotten glutened from grocery shopping. I try to stay far away from the bakery and cover my nose and mouth on the flour aisle. My store puts the GF flour beside the regular flour and you can smell and sometimes see flour on other items. We do injest through our nose.
I do not eat in restaurants because I am very sensitive, but I do go a visit with friends and have gotten ill from breathing in gluten. I won’t go near a bakery or Italian restaurant because of airborne gluten.
I suspect I have been glutened from kissing my husband even though he washes his face and hands and brushes his teeth before coming near me.
Also, recheck products that you have been told are GF in the past. Formulas get changed all the time. This can happen with food and beauty products. There are many hair dyes in salons that are GF but often the hair sprays are not. I bring my own.
I am careful also that when my dog gets groomed that they use a GF shampoo and products. All dog treats and food are GF. My dog licks me all the time and I wouldn’t risk gluten in her mouth.
Method cleaning products are all GF. I even check my laundry detergent and dryer sheets for gluten. Wouldn’t want my dishwasher soap to contain gluten!
I avoid packaged meals. I also react to all grains and have had to go grain as well as dairy free.
I call before a dental appointment and call all manufacturers to make sure anything that goes in my mouth is GF.
Many medicines have gluten and/or dairy so I have most of mine compounded.
I would check candles and fragrance sprays. What about your perfume? Envelopes and some sticky items and glues contain gluten, no licking envelopes.
Playdough contains gluten.
I would ask guests and family to wash hands when entering my house. Watch for dirty, contaminated hands in the ice maker and on handles. Good luck!
Jane I would like to pick your brain as you seem vet knowledgeable. Can you email me? Shelly
Do you still use pots and pans that were once used for foods that contained gluten? Gluten can get stuck in scrapes in pots and pans, especially the non stick type. It can get stuck on containers, utensils, and any kind of food prep container. Mixers, blenders, coffee makers, anything you can think of. Some things that have scratches may need to be replaced and some need an extra scrubbing
All cleaning products like laundry detergent, dryer sheets and especially dishwasher detergent. All Method cleaning products are GF.
I am sensitive and get glutened airborne. We injest through our noses. Careful at the grocery store, the bakery smell has gotten me. The GF flours are on the same aisle as regular flour and I cover my nose and mouth because the small is strong and it is in the air. Flour packages also leak and I can see it dusted around sometimes. Also, I avoid bakeries and Italian restaurants. I do not eat at restaurants but meet people sometimes. If they are baking a lot of gluten, the flour is in the air.
Careful of gluten hands and faces. Have all people that enter your home wash hands. Gluten can get into ice makers and on handles from guests.
Envelopes, glue and sticky things contain gluten. No licking envelopes. Playdough as well.
Careful of burning candles and fragrance items and sprays. What about your perfume?
There are hair dyes at the salon that are GF but many hairsprays and styling products are not. I bring my own.
I have my dog groomer use GF shampoo and feed my dog GF food, treats, and chews. My dog licks me and I wouldn’t want gluten in her mouth.
Have you re-checked your regular food products? Formulas change and you need to make sure they are still GF. Also, this has happened with my shampoo before so check beauty products again too.
I have read that some paper products like bowls and plates may contain gluten but I do not know much about that.
Anything that touches your body, you can breathe in, or touches your food needs to be investigated. Good luck!
Thanks for the list!
Gluten is sly when it hides, as you already suspect
Remember, it’s in more than just food.
Anything “fortified” is a possible suspect
For example, check your SHAMPOO .
Believe me, your bathroom is dangerous
From lotions to toothpaste to gels for your do
Wheat protein is almost analogous with “hold”
Which brings me to the next on my list — GLUE
Yes, that’s a great place to check with your scope
As its often without an ingredient list
So do not lick your envelopes
But use a sponge, even postal clerks resist
And if not found in your stationery
You might as well recheck your pantry again
Trusted ingredients lists can suddenly vary
Without any other change in the packaging.
Best of luck on your hunt
And I hope you soon are feeling better.
Hey Gluten Dude, sorry for the attention grabbing stunt
But I think it’s fun to offer advice in meter.
Nice job on the creativity.
Creative effort, but wrong info.
There is no gluten in the glue on envelopes.
That’s a myth.
http://www.glutenfreedietitian.com/articles/BLOGGlutenInAdhesivesBlog.31.pdf
Do you get drinks (soda, tea, coffee) to go? Some people react to the glue in the cups. Take your own if possible.
I also found out that when my thyroid hormones are out of wack, I have similar symptoms to being glutened. Find out what yours are and do a little research on normal ranges; don’t take your doctor’s word for it. Good luck. 🙂
Cat litter can also have it, so if you are sensitive to airborne (we are at my house) then that can be a problem.
Dairy alternatives – some rice milk etc, say that they’re gluten free, but the contain barley and have under 20ppm… Still too much for me.
If you’re not sure of a food, email the company. I’ve had to double check that when they say it is gluten free, that it’s completely free, not just up to 20ppm.
Also, could have been something that’s mislabelled. Foods are recalled all of the time, so we never really know what we’re eating 🙁 after all, we’ve been duped by horse/beef…. Let alone an odd bit of gluten..
Hope you discover what it was!
Think about things that don’t have ingredients like coffee. Our bodies are still pretty sensitive for awhile even after staying away. Something I keep on forgetting to mention, most of us have a delay. Mine is always 8 hrs. Go back your delay time and remember what you did or ate. Thanks GD for switching me back to GF Canada. Brent Alan Dedick (Hoodlum:) I tested a 1ppm beer and 8hrs later was big time sick. I think the taste put my body and mind back into shock. As soon as you worry about it, usually will make it much worse. Good Luck
Hi,
I’ve also had to recently go to the doctor because my symptoms don’t seem to be improving. I did get better once I started on the gluten free diet but now some of my symptoms are back again :(. The doc recommended I check my diet again and make sure it’s 100% gluten free.
I didn’t think I would be that sensitive to gluten in shampoos, lotions, etc. But I guess I have to start looking at that. I can’t believe there’s so many places where gluten can hide?!!
Although, I do agree with Harpreet. Sometimes there can be other foods that are making you sick. I recently noticed that I react badly to Glutagon gluten free rice pasta. Even though I’ve been eating it for the last couple months, I’ve suddenly developed an intolerance to it. I have to also watch my portion sizes. Sometimes if I have a bigger than normal portion of carbohydrates I get glutened-like symptoms.
Good luck to you :). Hope you figure it out soon.
OMG! I am going to have to move into a bubble!
Some of these suggestions are a bit silly…some are completely wrong,….some just show a lack of understanding….some just show that people with OCD tendencies really enjoy having Celiac….a few are great.
For example – this belief that if a product tests at less than 20 ppm that means it has 19 ppm. Doesn’t work that way. It could have 5 ppm or 0 ppm. Using that same test, the inside of a banana or coal in the wall of a coal mine, would test at less than 20 ppm. ( I realize this might bring out the people who believe that someone injects bananas with gluten in order to keep the Celiacs out of power).
What’s really funny is, I know quite a few people in “real life” with ” under- control” Celiac and I am the most careful of all of them. Where are these people who think that being in a crowd or touching a doorknob will gluten them? The people that believe modern glue has wheat in it, no matter what the envelope and glue companies say? The ones that are afraid to pet a dog? I guess they must stay home in their bubble.
I am not trying to say that we shouldn’t be careful. I’m not trying to say that some product might bother you but not most Celiacs. I just wish people would use a little common sense and not believe every Internet rumor or blog. But if you choose to – my son is selling some pills that will protect you from the Zombie Apocolypse. they come in pretty colors and have a lovely fruity taste. The little ” S” on them assures you that you have gotten the real Zombie Safe Pills.
I hear you Lima and I had a feeling this post might bring out some misconceptions about hidden sources of gluten. The last thing I want is for this blog to be a place to spread unwarranted fear. I will address this in an upcoming post. Thanks for your comment.
I enjoyed reading all the comments, not Lima so much! It has been an uphill battle for me for the last year and a half after being diagnosed with CD. Uncovering every product after product containing gluten. I also have been called ocd but if folks got the reaction from products contaminated with gluten
they would ocd also. Just when I think I have cleared my home of any contaminated products here comes another on. Some of us really do a very low tolerance to gluten. A friend of mines mother asked me if the way I ate wasn’t boring. I told her it was not the way I had chosen to eat but rather a life or death way of have to eat. There are a lot of people that don’t understand even those with wheat or gluten allergies or even celiac how severe some of us react. The way I found your website is because I too have been glutened in the last week and the only thing I could imagine was a candle that I burned to cause my allergies to go haywire and then got sick. I google the question can candle cause a celiac attack or do some candles contain gluten. To everyone on here that suffers from this, I understand! Before being diagnosed I had already made some change but did not know I had celiac. Example, I was using Paul Mitchel shampoo because it was the only shampoo that did not contain gluten is what I found out after the fact. I had also stopped using all tooth paste and found that aqua fresh did not give me any reaction or irritations in my mouth. Of course with this product also I found out after diagnosed wit cd that aqua fresh did not contain gluten and to date have read that crest had removed glutted from their product several years ago. I an currently really struggling with finding floss picks that don’t have some hidden ingredient the package won’t even say that it is mint flavored. Very aggravating. I am very healthy and after a lot of research have settled into my gluten free lifestyle and don’t expect a lot of people to understand but if you have celiac we do! Will check back for updates and more hidden culprits. Its very surprising.
Initially after being diagnosed with Celiac I did go into a panic and I am very sensitive to those that have celiac and have not taken the time to read all the information out there which is what I did for months. I buy my vitamins at GNC and all that I buy there says Gluten Free. A year and a half later I am doing lots better eating better cooking more reading more labels using google a lot. It is a very individual approach and it depends on how long we have been diagnosed and the process to feel the calm. I now know that I wont have to live in a bubble I don’t have to drink beer, gluten free or otherwise something I can go without. Saltgrass Restaurant has gluten free bread, you must ask for it. Olive Garden has a good gluten free menu the pastas are good, again you have to ask for that menu. All these thing I have discovered and is making my world easier. Good luck to everyone on your gluten free journey.
Why so cranky baby panda?
We’re all different
I doubt anyone living with celiac or intolerance is enjoying any of it or wants to live in a bubble.
Please don’t judge. People are just looking for information where they can get it.
I can say that my own personal celiac reactions have been so severe that being a little OCD is not a bad thing.
I hope you find a little tolerance for anyone just trying to get info where they can.
They’re just trying.
Good luck to you
When it comes to the glue, I guess it’s a matter of trust. The official position is that envelope glue is made from corn but many GF products claim to be gluten free and are contaminated. Here’s an article that speaks to that.
http://celiacdisease.about.com/od/Coping_with_Celiac_Disease/f/Does-Glue-Contain-Gluten.htm
It would be unlikely to get glutened from a doorknob but possible. If you have ever lived with kids you might understand. A kid eats a PB&J sandwich and touches something, you touch it and eat something without washing your hands and you have just been cross contaminated.
These were extreme ideas because this person could not figure out what could possibly be the cause of their getting glutened. If you can solve this person’s problem, please do. Thinking outside of the box is not a lack of common sense, it is an effort to help someone by brainstorming and was offered in a sincere and caring manner. No need to be rude and critical. You can respectfully disagree and share your opinion and knowledge.
Lima Bean was in now way being rude or critical with her common sense post. Common sense is sorely lacking on many Celiac sites because many people fail to educate themselves on how this disease process works and what is truly an issue for Celiacs. It’s obvious from reading these posts there is a general lack of understanding going on.
The OP does not even know whether she was actually glutened or has developed another intolerance or just needs more time to heal.
Other intolerance’s can produce the same symptoms as a glutening but most people jump on the ridiculous bandwagon and offer advice that has no basis in science or reality. For me, if people want to make their lives harder than it has to be or live in a bubble, have fun with that. Just don’t pass on erroneous information to those new to this lifestyle and freak them out thinking they also need to go purchase a bubble to live in. Good grief!
Here’s the bottom line: We need to strike a balance between being careful and living in fear. I do not live in fear but am ungodly careful. At the end of the day, I can’t let my disease control me. And one more thing…it’s not always the gluten that is making us sick.
Lima Bean makes sense to me &. Gemini tells the truth.
I am going to get involved anymore with convincing people that gluten
is not the boogey- man hiding in corners (or in coffee cups, on door knobs, in grocery aisles, on toilet paper rolls, on people’s shirts on a bus or on banana peels).
There is almost always a reason for a chance glutening. If people look at what (or where) they ate that was different, they will see where they took the hit.
The only result I can see from all this myth-spreading nonsense is someone reading it and panicking…. thinking “holy crap!. I’m doomed! I can never eat out, wash my clothes, write a letter, drink coffee, feed my pet, take a shower or live my life.”
This is simply not the case.
In the end, people need to become AWARE, well- informed self-advocates and I can only hope they will
understand that not everything you read on the internet is the truth.
Read a reliable source like Tricia Thompson or the book Real Life with Celiac Disease by Melinda Dennis and David Leffler.
apologies–correction…that should say” I am NOT going to get involved anymore”
….the bright sunshine is messing with my view of the screen. 🙂
The problem is We don’t have enough answers about this disease and when it comes to our health we get scared, which makes things worse.
But this being the one place where people can treat celiacs with respect and empathy, can we just acknowledge that when someone says that are experiencing gluten symptoms, that they might know their body and what this feels like to them vs a stomach ache?
Hey maybe the person is wrong, but they can hear that on a million other websites talking shit about celiacs “complaining too much.” We have to educate one another with well researched information without assuming that the studies we read have the final answer. YET! But we will get there. We are all in this together!
A list of where “hidden gluten” can sneak in:
In broth, like at Chinese restaurants
Foods fried in common grease in fryers: chips/tortillas at Mexican restaurants
Tortilla press – is the same one used for flour and corn tortillas?
Pizza – are there dedicated areas or baking dishes?
Imitation crab in sushi
Careless food preparation in restaurants
Communion wafers
Lipstick, lip gloss, or Lotions that come in contact with the mouth and get swallowed
Chewing gum
Herbal teas or teas with malted barley (labels should indicate barley)
Medications
Condiments
Colanders and toasters
Dog food/shampoo (just be sure to wash your hands after handling)
Marinades
Soy sauce
Salad dressing with soy ingredients
Great subject!
I view the Gluten Free World as a Spectrum Disorder. There’s not a 1 size fits all, even for people with Celiac Disease.
I confess, as a GF (Celiac) Chef, I do a low-grain diet, I just feel better on it. I see many bloggers posting many, many delicious recipes that I, myself, can not tolerate. And it’s not from direct Gluten Exposure. I get Gluten-Like Symptoms from Xanthan Gum, all Oats and GMO products (like Corn and Soy). My best advice – Learn to cook from scratch with items that are naturally Gluten Free vs. GF junk replacement foods.
When reading labels – Watch for non-specific ingredients like Natural Flavorings and Spices
Dr. Fasano, a leading expert on Gluten Related Disorders, discusses that in the Autism community, many can not tolerate Gluten and Casein. That there are 2 Peptides that permeate through the lining of stomach, causing many adverse reactions. * I believe many of us with Celiac Disease, could also react to these Peptides, thus mimicking a Gluten Exposure.
I feel that many of the core people who have been in this GF industry for a while, really do come from a good place. Such as Bob’s and the people on Capital Hill (ACDA). Beth Hillson, Andrea Levario, Dr. Fasano and Carol Fenster, are a few examples of the people who are leading the way with the ACDA. They are working with the FDA and Capital Hill, to create and finalize the Gluten Free Labeling Laws. My hope is that once the GF Labeling Laws are finalized, that manufacturers will adhere and be vigilante in their testing.
Through open, supportive dialogue, we can make our community stronger and united.
Websites like yours, only help to increase the awareness of problems and find solutions.
Bravo Gluten Dude. Hope to see you on a bigger platform some day. 🙂
Many thanks Denise. I hope so too 🙂
Three Celiac’s in our family, all with some kind of skin response (hives and/or DH blisters) so makes it easy to discover what “got” us.
Some past items:
Sugar
Salt
Pepper
Water that was filtered through a water filter that had a wheat based product as a component of the filtration element.
And then there was the time that I started to unload my cart and noticed the conveyor belt was covered with flour from a leaking bag belonging to the customer in front of me.
Just can’t get far enough away from this stuff to always be safe.
We cook from scratch, using whole ingredients, garden a lot, raise our own eggs, and wash and peel anything that can be washed and peeled. No gluten is allowed in the house, and still we get glutened.
We are 3.5 years into this, and it does get better each year. We get more knowledgable about how to be careful, we take fewer risks with Glulten Free products, and our guts heal so the “zaps” affect us less.
We also have a “new product” protocol for any GF manufactured product we want to try.
First – it must be certified GF.
Second – we contact the company or search the website to see if we can find out what number they certify to.
Third – we use a home test kit to test the product ourselves. Fourth – the family member who wants the product eats a HUGE amount of it in one day to do a “bio” test.
If it passes the bio test, then we deem it safe enough for us. At least that way, if someone gets sick, it’s only one of us and not all three.
These are the things that work for us. Remember, everyone is different. So they may not apply to you.
Remember – people once thought the world was flat – brainstorming is important.
Good luck to all of you on you GF journey.
Hi Susan! I have a few questions for you:
I also react to salt (table or sea salt) and granulated sugar. So:
1) How did you figure out that that was the problem specifically?
2) How do you know that it’s a gluten issue vs. another sensitivity?
3) How is it even possible that it is a gluten thing??? I’m genuinely asking, since I have reacted too, but it doesn’t really seem possible for it to be a gluten thing. Just wondering, since I’m trying to figure it out myself 🙂
Next question! You mentioned that you have a gluten testing kit at home. Where did you get that and how does it work?
Thanks!
Amanda
Hello,
What water filter did you react to? Thanks.
What exactly is in shampoos, conditioners, lotions & make up that we are looking for?? They dont say “wheat” specifically. However, I am pretty sure those are the last items I’m needing to replace?! Help!
It’s a good question and I don’t have a specific answer. Perhaps a call to the manufacturer…
Wheat germ oil, sometimes labeled “triticum vulgare,” is used because of the high amount of vitamin E….which makes me wonder about any unsourced Vitamin E (also labeled tocopherol…I might have spelled that wrong).
L’Oreal has a list of names for wheat-containing ingredients: https://ftp.epowercenterdirect.com/LorealContent/Loreal%20Gluten%20List.pdf
Want a list of gluten-free makeup? Talk to this gal: http://www.glutenfreemakeupgal.com/gluten-info/gluten-free-makeup-list-1st-2014
Unfortunately hydrolyzed wheat protein is in Fredric fekkai a shampoo and conditioner I’ve been using. Maybe check for that.
I’ve been gf for 3 years now and failed to check the label and had problems.
Lesson learned
Also recently found I picked up a deodorant that had gluten
Again my recklessness
And go figure, in toilet paper, yeah seriously
Check all labels and websites which you probably already do
Good luck
I have to be careful in the aisle that has the regular flours in them and can’t even go into a subway restaurant.
I’ve spent the last few weeks racking my brain about possible sources of my latest glutenizing episodes, which I’ve managed to avoid for years. I read labels like crazy and make 95% of my meals from scratch.
I woke up with the answer: spray starch! (Ingredients on household products are not required to be listed.) This was a can my husband (non-celiac) used on his shirts and I unthinkingly used it on a half-dozen tops and to touch up sheets left in the dryer too long. In addition to my specific gluten reactions, I also was itchy wherever there was contact that would turn to welts when scratched.
Rewashing everything stopped all the symptoms but it will take time to recover. Other hidden sources: self-tanning lotion and hair dyes. Cyrex Labs has tests for gluten cross-reactions from other grains. I was surprised to see mine included teff and tapioca along with corn. Well worth knowing.
Definitely worth using GF Makeup Gal list to choose products. And buy a dedicated toaster if there’s any past or present gluten use. Good luck, all!
I wanted to comment on corn allergies, I have to ask anywhere I go out to dine whether their tortilla chips, corn bread or tamale dough is gluten free. Some Mex. restaurants use a flour mix corn and white or wheat. Some cornbread is also made with a mix. I don’t cook all that much but I do know that old fashioned corn tortillas were made from grinding corn. I eat regular corn at home but have not noticed any allergies. I want to ask about beef and celiac? I am
completely lactose free and no more acid reflux so I take no meds for that!
Apparently, plastic and wood utensils/containers can get “infused” with gluten, in the same way tomato sauce can turn Tupperware orange. I recently made the mistake of mixing up a batch of tuna salad in a plastic container that we’d used for years for mixing pancake batter. Then I ate the tuna straight out of the container all afternoon.
I’m still not 100% sure that’s what did it, but I’m getting over my most severe glutening since starting GF (only about six weeks ago, but still, it’s like being back at square 1 and worse). I’ve been Googling the heck out of everything I’ve eaten lately and this is the most likely suspect. So yep…next time I make tuna, it’s definitely happening in the GLASS bowl.
Also–if this is not really a thing and I’m creating/feeling fear for no reason, somebody please feel free to tell me. I’m a big appreciator of Gluten Dude’s “don’t live in fear” philosophy, especially (as now) when an unidentified exposure makes everything scarier.
Einmal im Jahr, im Halbjahr oder im Quartal sitzen Führungskraft und Mitarbeiter
beieinander, pass away Ziele der kommenden Periode zu besprechen.
Well… I’m sad to hear about the Bob’s GF stuff but I wonder if that is why I’ve been having trouble recovering from the January gluten incident. Our dogs also eat GF partly for me but also because my girl had tummy troubles before and the grain free food seemed to do the trick. I didn’t catch my hair stylist before she used some stuff on my head once that had wheat protein in it and my head itched for days. My eyes used to itch and burn when I had on mascara until I decided to try GF mascara (Eco Bella) and no more burning!
We do have chickens and ducks which are fed gluten-containing feed so I wonder too if eating their eggs may be a problem. We always wash up ourselves and their bowls/feeders in the garage, and if we come in from outside, we wash up in the bathroom before heading into the kitchen. I also keep an “animal shirt” handy which I put on over my other clothes before I go out to deal with the critters. We are very careful about handling the feed but I wonder if wearing gloves would be better. Can handling gluten containing feed cause a digestive reaction or would that be more likely to cause a surface reaction?
I don’t live in fear (well, maybe a little) but I do want to do what ever I can to stay healthy.
Thanks for all of the input!
What most people are only now beginning to understand…. is that ALL grains contain gluten….the research clearly shows..going back many many years that celiacs DO react to ALL GRAINS…. the “wheat gluten only” hypothesis has gone waaay farther than it ever should have.
not only that, the only real cure for celiac disease is to eat a diet containing only meat, eggs, veggies and as much fruit/fruit juice as you want.. Fruit can be the only carb. Not even potatoes, nuts or beans are alright and I am not sure why that is. Maybe anything with phytic acid sets it off?? AS someone who has DEVOTED my entire life to this cause…20+ years of myself as a guinea pig, and speaking as a “true celiac” whose younger brother died at the age of 21, and I was very close myself, spent most of my youth simply fighting to survive. Well I did and the only way for me to be 100% better is to eat only veggies, meat and fruit. I have even found that sometimes I react to gelatin…interesting that gelatin is animal glue and gliadin is “vegetable glue.” Also casein is a glue.. Most celiacs know to avoid that. With celiac disease there is not proper stomach acid to cleanse the villi of these glues in the gut.
Rachel,
Sorry to hear about your brother and your ongoing struggle. I was diagnosed in adulthood but like you can only eat meat, veggies and fruit (allergic to eggs). The Autoimmune Diet has information about perhaps why the other foods cause reactions.
Although I am not as sensitive as some coeliac’ s having eaten gluten with consequences for 50 years I’m allwly moving towards A Paleo diet as I’m sure it’s not just gluten that’s affected me my whole life. Hence the glutened and don’t know where / why….
The only way to be sure that your child is not exposed
to porn is to take the responsibility of installing a web filter to block all porn. However, there are still some very good ones around that
will help you overcome you addiction. Once you start watching porn every day, more
than once and you feel like you can’t stop — that’s when you have A PORN ADDICTION.
With the advent of internet accessing porn websites and reading stories related
to extreme pornography is very easy. What you should remember in such circumstance is that foreplay is
the key to making a woman climax and making her experience orgasms of her life.
It was a closed set (only the director and actors, and maybe
the script supervisor stay on the set).
I have celiac now for 4 years things are a little better I have been gluten free and still get sick more often then I like. My life is a nightmare afraid to eat out afraid when we travel don’t want to socialize for fear of getting glutened. I have changed everything from diet to dog food cat food hair dyes make you name it I changed it. I just found out last week that the protien in coffee causes me to be sick.. I loved coffee and had only 1 cup per day in the am. Each day I was sick for about 4 or 5 hours not knowing why. I researched and checked all my foods and then found out about coffee it has been 3 weeks no coffee and no morning stomach problems. Drs don’t know and they don’t tell you when yoou are celiac you need to change your whole life not only your food. I never ate processed foods anyway. Now I stay on Paleo and grow my open herbs and some veggies. I trust nothing. It is very hard when only you in your home has to be gluten free. I fear it can be brought into my home from someone else.. My husband trys to help but he really dosen’t know. I suffer from anxiety had panic attackes and didn’t want to leave my home for months. I have been in therapy now since July and it helps. Many sleepless nights and long tired days. I am not the same women I once was. Oh and one other thing this diease is expensive. Sad in Savannah
Society has placed a stipulation on addictions and some argue if this
can even be classified as real addictive behavior.
It’s anything from a feeling such as being depressed, alone,
being bored to something you saw. Consciously every man knows that sex is great
and this girl is hot, but physically the response could be dull or non-existent.
Hi friends, how is everything, and what you would like to say about this paragraph,
in my view its in fact amazing for me.
Ok… I am just getting around to reading this. I was diagnosed in Jan 2015… and it is now Oct 2016. My overall general health and ability to not be bent over greeting the porcelain god has greatly improved this last 18 months… understanding cross-contamination was a whole different game. Have I managed to stay “unglutened”? Nope, nada… and yes it sucks. This year, I have gained what I would deem a hyper-sensitivity. Getting FDA terminology has helped with the purchasing of “ready food”.
Gluten Dude, you said it well… striking the balance between overly cautious and paranoid. We must not be paranoid, but we must be abundantly overly cautious.
* I just got frustrated one day and got rid of everything not steel or glass in my kitchen. I replaced it all.
* I learned that the bedding to barn animals is highly contaminated
* My beloved Starbucks isn’t working for me. If they could just follow some simple procedures in isolation…
* I use baking soda for toothpaste and Crest Whitener (I checked) for mouthwash
* My dentists is ultra careful with me
* I take extra vitamin C (lipospheric) to assist with my immunity (which is tanked)
* I check, check and recheck labels on food, drugs, and cosmetics
* My husband’s gluten is all outside of the house.
* My cats and dogs are gluten free
and yet…. there is life!
To be honest though, I haven’t left my house for a week…. and I haven’t been glutened in two. 🙂
Life is always about striking that balance…
For us it was cross contamination. My daughter would dip her knife in the mayo, spread it on her bread (with gluten in it) and then dip it back in the container for more mayo. I then used this same mayo on my son’s gluten free bread. Same could happen with mustard, butter, etc. We ended up having to have a fully gluten free kitchen because kids and adults continued to forget and make mistakes. Also, if you use the same kettle to cook pasta and gluten free pasta make sure to really scour the kettle in between. Again, we just had to eliminate it completely from our kitchen and let no-one bring it in our home. My son vomits violently for hours if he has a microscopic amount, it’s not worth it. Also, I hate to say this but host contains gluten, even the “gluten free” ones. If it doesn’t have a certain amount of wheat it isn’t considered host. A child at my son’s school was being continuously glutened and his mom was far more careful than I am (i.e. she had the lunchroom put his carton of milk off to the side). Turns out it was the host.
What if I told you wheat berries are the forbidden fruit the bible clearly states will surely bring death?