February 11, 2011


A Big Gluten Mistake

I ate gluten.  For the first time in over ten years I actually ate gluten.  Not just a crumb or a bit of cross contamination.  I ate it.  But it was an accident.  It was an accident that was completely my own fault and could have (should have) been avoided.  I hope you will enjoy my little story, and hopefully learn from it.

Last week, my oldest son brought home a cold.  It didn’t hit me like a normal cold because my sinuses didn’t feel congested.  I was tired, though.  Very tired, and my head was definitely not right.  It must have settled in my ears a bit because I felt slightly dizzy at times. 

image Image via office.microsoft.com

Thursday I didn’t leave the house, but by Friday I was feeling pretty good, I thought.  I needed to go to the health food store for a few things, and I took along some coupons I had for free coconut milk products.  I was sent the coupons so I could sample the products for review.  Now normally, I only review gluten-free products which usually come from gluten-free companies.  In this case, the products were dairy free, but not necessarily gluten-free.  Most of them are naturally gluten free like coconut milk or coconut yogurt, so I had in my mind that all their products were gluten free.  That was my mistake.

After getting some milk, kefir, and yogurt, I headed over to the frozen dessert section and saw some boxes of ice cream sandwiches.  They were calling to me, and I picked out two boxes.  It never occurred to me that they were not gluten free.  I never looked at the ingredients.  I bought them without though to gluten.

I went home and ate a dairy free banana split ice cream sandwich.  Granted, they are mini sandwiches and pretty small, but still.  It was an ice cream sandwich.  I thoroughly enjoyed it.  At least I had that pleasure.  As I was chewing and swallowing the last bite, I thought to myself, “They did a really good job on the wafer part.  I wonder what flours they used.  It tastes just like the gluten-filled ice cream sandwiches I remember.”  Then the light bulb went on.  It was too late.  I had eaten the whole thing.  There was nothing left to spit out of my mouth.  The deed was done.  I started saying, “Oh no.  Oh no. Oh no….”

image Image via office.microsoft.com

I pulled the box out of the freezer, but I already knew what I would see.  Wheat flour.  It was right there, plain as day.  How could I be so stupid!?!  I thought about throwing up, but it’s not something my body does.  I’ve thrown up twice in my life and the last time I was 14.  I went through three pregnancies wishing I could throw up, but I never do.  I knew I couldn’t make myself do it, and I didn’t have any ipecac. 

I called my husband who reminded me to take enzymes.  I keep some around to take with me when I eat out.  It seems they do help reduce symptoms.  The ones I had are these gluten peptide enzymes.  I took four plus two other general enzymes.  Then I waited.  I chatted online with Shirley of gfe.  It helped just to tell someone who would really understand.  She minded me that I would need to detox.  Good advice.

I ate the ice cream sandwich in the afternoon.  I was not hungry for dinner that evening and it was some time after dinner that I began to feel bad.  I had a lot of burping and felt like I could vomit, but never did.  Then I had lots of gas, and finally diarrhea.  I’m sorry to be blunt like that, but it’s just reality with celiac disease. 

I do think the enzymes helped.  There were a few symptoms I did not have.  Usually, one of the first reactions I have is to suddenly become very sleepy.  I was tired for days, but I never had that extreme and sudden sleepiness.  Also, with “bigger” reactions in the past I have had intense abdominal pain.  It’s a pain that I have only had with gluten and is different from any pain I get with other digestive upsets.  I was really happy not to have that.  The thing that worried my husband the most was a mental reaction.  I have shared before about how gluten can affect me mentally.  While I was out of it, as you will see in a minute, I didn't have any major mental issues to deal with.  I'm very thankful for that.

image  Image via office.microsoft.com

The next day, Saturday, I was in my pajamas all day.  I can’t remember the last time I did that.  I slept for a large part of the day, and lounged around for the rest.  I ate little because I simply wasn’t hungry.  Green tea and oranges were what interested me and I figured they were good options. By dinner time I decided I was ready to eat a little.  There were lots of leftovers and everyone was fending for themselves, buy my husband and I sat down to eat together.  I had warmed up a small plate with a little leftover curried roast and carrots.  I had one small slice of beef and a small amount of rice with the vegetable mixture on it.  Here’s where I realized how out of it I really was.

I was about to start eating when I noticed my right thigh felt quite warm.  It was unusual, and I couldn’t imagine why it would feel that way.  It didn’t go away so I put my hand there and felt something very strange.  I grabbed a hold of it and took a look.  It was my beef!  It was on my lap!  How it got there, I have no idea.  I told my husband, “This is pathetic.  I’m a mess.”  I can laugh about it now, but it wasn’t funny at the time.
It took several days for me to feel mostly back to normal, and now that I’m there I’m ready to talk about it.  When I was sick, I had not interest in sharing the story, but I think it’s a good reminder of how diligent we need to be.  I’m usually so careful, but in this case, a little illness was enough to bring down my guard. 

The next time I’m at the store and not feeling up to par or just mentally distracted in some way, I will remember this accident.  I will read yet another label.  I will force myself to be diligent, because it is worth it.

blue question mark
Have you ever made a really stupid mistake like mine?

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I have dreams (nightmares) that I am eating something with the family and as I finish it I realize that it was a gluten filled meal. I always panic when I wake up until I am able to reason with myself that it never happened in real life.
I am sorry about the 'contamination'. I hope that you are feeling better. Thank you for sharing your story. I will definitely be more diligent with label reading.
When I was newly diagnosed I was at the grocery in the healthy section. I was so excited to see a graham cracker right next to the rice bran cracker I had just tried the week before. I bought it and brought it home. It has been a few years ago now, so I can't quite remember, but, I don't think I ate any. I think my husband was the one who asked me, "Did you read the ingredients?" I felt so dumb when I saw the wheat. It was the same company and they were right next to each other, so in my excitement, I just grabbed it. It is so easy to do. I occasionally catch myself, oh wait, I can't eat that. I get in such a habit of eating GF, but it is scary how easy it is to miss it one time.
I've had dreams, too! Too funny!
Oh geez Linda, that sucks! I think all of us free-from'ers have been there at one point, but never wish it upon another. I guess those little reminders have to happen once in a while!
My daughter went away with her grandparents for the weekend last summer. I had thoroughly explained to my mom (who is not always the brightest person) how my daughter couldn't have gluten, and she assured me she had it under control. Then my daughter was sitting at dinner devouring some nice fried chicken, when suddenly my son asked her, "doesn't that have gluten in it?". They looked at my mom and she got wide-eyed and said, "oops!". When I heard that story I wanted to smack my mom!! People who aren't sensitive to gluten don't understand how huge that "oops" is. My poor daughter felt horrible all weekend and she could have had a much happier time if grandma had been a little more careful. Sheesh!!
Just a few months ago, I did a very similar thing. We were at the grocery store looking at some GF/DF ice cream that we normally buy, and noticed they had a new flavor Cookies and Cream, I grabbed right away as I knew my daughter would be so excited! I got home and we opened that pint up and started eating. As I was putting it away in the freezer, the word wheat caught my eye from the tiny print in the ingredients. Yup. It had wheat flour in it! The same packaging and the same allergy statement as the GF/DF products, except they left the word gluten out of it. I completely freaked knowing that with the slightest of cross contamination I get severe migraines, fibromyalgia like pain, diarrhea, nausea, fatigue that lasts sometimes more than a week. I panicked! At the time did not know about gluten enzymes (which I have now). My husband kept trying to tell me I only had a few bites I would be fine, and I just kept saying really? I walk through a room where someone is eating gluten and I get sick (slight exaggeration!) and I just ingested spoonfuls of it?! I was so mad at myself for not checking the labels, I always check labels on anything we buy even if we have had it before. I was angry with the company for not making a distinct difference in the label and allergy statement. And yes, I wa down for over a week, and my daughter whose reactions usually more delayed than mine and usually shorter, followed suit 3 days later... I hope I never get caught up in the moment and forget my role as the food dictator and not forget to read my labels, but it happens.
Too often now I realize I haven't read the label on something that USED to be safe. Candy bars may be my biggest problem in that, since candy manufacturers change ingredients fairly often, and I'm more likely to buy one of those at an odd time, like on a trip or after a long day shopping, when I'm already tired. Ice cream treats are probably my second biggest temptation -- because they change often, and because it's so easy to break one out and eat it quickly...and then remember to look at the label.
Linda I have nightmares like this. I'm so sorry you had to live it. I hope you are still taking good care of your system. Make sure you are drinking green smoothies to help. When I decided to eat 95% real foods I got to stop reading labels. I just don't trust the manufactures that much. I get the food recall emails and every day there are at least 10 and some are about undeclared allergens. But sometimes you just want a box of something. Why do they make it so difficult.

I hope you are feeling better and remember it will take some time for that to leave your system so be good to yourself.
Oh Linda, I'm glad to hear you're on the mend and the incident wasn't as bad as it could've been! Yikes. Thanks for sharing your story, I find the range in reactions/symptoms fascinating. My husband made a stupid mistake once, only it was kind of intentional. After his first year of being GF he decided he wanted a beer. Well, let's just say he won't ever do that again! And I sure won't let him :) We need to get some enzymes, I just don't know where to begin as there are so many on the market!
That is awful! I hate it when I assume things without fully thinking them through. Luckily so far on my second round of gluten-free eating I haven't had any slip-ups!
Hi Linda, I'm so glad I was able to lend an ear on that rough day and like others, I'm really happy that your reaction wasn't worse. Yes, bad enough, but I've heard about folks going into comas after ingesting gluten in such a large amount. Those stories are not urban myths either. My doctor told me about her son's girlfriend who was celiac, but a non-accepting teenager, purposely eating a hamburger with gluten bun and going into a coma for two days. Similar stories have been posted on the celiac listserv about members who ate pizza thinking it was a gluten-free pizza. So I'm glad that ice cream sandwiches have relatively little wafer. After having a reaction to my homeopathic remedy for accidental gluten ingestion, I'm going to be carrying Glutenzyme with me and Immodium AD (per usual, for when the reaction is "that kind"). Dr. Jean Layton (Gluten Free Doctor Recipes) takes Glutenzyme whenever they eat anything questionable (like in a restaurant where cc is always a concer). So I do think enzymes can be helpful. And, Glutenzyme is relatively inexpensive. I'll check out the one you link to, too. My former doctor says it takes 6 weeks to get gluten out of the body after an accidental ingestion of a small amount. She says that after one goes gluten free initially, it takes 6 mos to get it out of the brain. Fascinating stuff ... from a distance. None of us wants to actually find out or prove the numbers. Finally, both I and my son have the dreams that we've eaten something gluten free. We wake up in a panic that we actually did do it, but thankfully, they've all be nightmares so far.

Keep detoxing with hot steamy showers, walking (or other aerobic activity), hot water with lemon, and all the other remedies.

I'm sure your post will help many, Linda! As Diane says, eating real, whole foods as I know you do most of the time (we all see your scrumptious recipes!) definitely makes such occurrences less likely.

I've done this! I love the Mi-Del gluten-free arrowroot animal crackers and Mi-Del gluten-free ginger snap cookies. Well once I bought the package and ate them and they weren't the gluten free ones! The packaging looked exactly the same, was in the same place as the gluten-free version at the grocery store and even had the words gluten-free on the outside of the package. Unfortunately, they were wheat cookies and the words gluten-free on the package were just included within a list of their other available products. Arrrgh!
I ate a whole egg salad sandwich and commented on how good the bread was. When they told me it was Mrs Bairds, I almost died. Two whole slices of bread with gluten!! For some reason, it did not make me sick other than take away my appetite for several days. Of course, it damaged me internally.
Don't feel bad I did the same type of thing last night. It wasn't with the gluten though it was soy. (I am Gluten Intolerant, Dairy allergic, and Anaphylaxis to soy.)I have also been sleep deprived due to sick kids, husband, and then myself. We went out to eat. My family wanted a Mexican family meal that I knew the meat seasoning contained soy. I didn't think about it, and forgot to order myself another meat. About halfway through my second taco it started. I was sitting there holding my half a taco thinking why am I having trouble breathing. My sleep deprived husband looked over at me and the light went off. He said Raye your not supposed to eat that meat. I am still recovering today. I have a tight chest and a swollen sore throat.

It happens to all of us.
Oh ouchies, Linda. I've had dreams where I've done that. And I've certainly been glutened through cross contamination. But I've never out and out consumed it straight up. I'm so sorry that happened to you, but yes it is a good reminder of how diligent we all have to be. Thanks for sharing your story.
Thanks for sharing your story! I needed to hear this because it's easy to forget how bad you can feel when you have felt so good for so long off of gluten. You think a little gluten can't hurt. Tonight I am going out to dinner and the place picked was a pizza place. I was going to just go with the plans and even eat the pizza! But, a friend strongly encouraged me to be honest with the person I was going with. After reading this I am even more glad I was honest about it!
Oh Linda, I am so sorry to hear your story (although vey glad you shared). I can totally relate to being a witch and mentally not there when being glutened, although my reaction isn't as immediate as yours. About ten years ago I was diagnosed with moderate to severe ADD, Via a series of computer tests. Then 2 yeas ago I was re tested by Measuring my brain waves (an EEG) and declared perfectly normal. I can only conclude that the gluten made gave me brain fog so bad that it simulated
ADD. I'll tell you eating a gluten free diet has really
given my life back. I am no longer fearful of being sick
in public, I am a better mother (that wicked
witch...crushed) and I feel so much better all around. I really appreciate you sharing your story. It's good to know how others are affected too.
Thank you for sharing your story Linda. I am sorry you had to go through that. I hope that you get to feeling completely back to normal soon. I think almost anyone dealing with food allergies and issues, has done something similar to this. It can be so hard to always keep on top of reading labels.
One year my best friend was visiting us in Virginia. She and I went to Sam's and then the grocery store together. I used to LOVE Twix. So out of old habit, I picked one up, and ate it. It dawned on me later what I had done. WHY she didn't say anything to me, I will never know, but I can't believe I just picked it up and ate it.

When I eat a big amount, it doesn't bother me as bad as a crumb. It will eventually start to bother me if I do it more frequently.

On Tuesday nights, my daughter and I are taking the Wilton Cake decorating class at Michael's. For the first class last Tuesday, we had to buy the Wilton frosting. There was no gluten, but it was processed in a plant that has wheat. I bought it anyway. On Wednesday I started to get a headache. I tried to ride it out. Oops, big mistake. By 4pm I had a MAJOR migraine, I was laying on the bathroom floor when my husband got home. I called my chiropractor, and he took me in. It was my reaction to the wheat. He adjusted me for it, and then adjusted my neck. THANK GOD it worked, and that he could see me. I was about to have my dad take me to the hospital. UGH!! And I didn't even eat any wheat, just the cross contamination.
Also, I wanted to say that it messes with my head too. I get really depressed, and I just don't know why. THEN when I wake up the next morning with my rash all over my abdomen, arms, or breasts, it becomes clear what had happened. I really hate that part. I really screws up my whole day or even days. My poor family has to deal with my craziness during those times.

I was watching a video online about how celiac can affect your intimate life too. I was glad to see that, because at least I understood what the challenge has been all these years.
I did! I went to a little Mexican restaurant I've eaten at before (taco salad--just lettuce, plain rice, cheese & salsa and some veggies). They had tacos - hard & soft shells. I know Old El Paso hard shells (as most) are corn so I ordered three tacos. Got back to the office and ate the 1st one...thought it was strange tasting, but not "that" strange as I was starving. Ate 1/2 of the 2nd one and realized the hard shells were just fried flour tortillas. Never asked - never thought about - just assumed. Weird thing is I didn't have much in the way of ill effects which sorta made me wonder if the blood tests and endoscopy were wrong....(yes, I know they weren't) :(
Oh man, so sorry! I was saying "oh no-oh no" with you as I read. :(

I didn't outright eat gluten but I had a "trusting" moment with a restraunt that I've eaten from their gluten free menu before--but at a different location--and I didn't grill them and ask a bunch of question because I'd had their stuff before. BIG mistake. They glutened me. Probably hadn't trained the chef.

I threw up this time but I seem to rotate between ejection methods. :( Many of your other symptoms are the same as mine.

So sorry you had to experience that. I too learned to ALWAYS ask. You never know when the chef is out or things have changed.

So sorry to hear this, but so glad you shared your experience. I was still recovering from the flu when I went shopping last week and was looking for something to tempt me back to eating again. It had been days since I wanted to eat and I bought an Amy's mac and cheese. Just as I started to unwrap it to heat it up, I realized I bought the regular wheat kind and not the GF. Close call and lucky I saw it. Funny how we can be so vigilant and then make a mistake like that.
Every Sunday my grandmother cooks a big Cuban meal for the entire family, kids, grandkids, neighbors... you get the idea. She, long ago, converted her recipes to be GF/DF, learned about the dangers of cross contamination, & educated the family on the intricacies. I have never gotten sick eating one of her meals... until a few weeks ago. My grandmother had a party on that Sunday. She thought I wasn't planning on attending Sunday lunch so she made a meal Saturday evening and left instructions for people to heat the food up and enjoy. I decided to come last minute, heated up my chicken soup, and took a big bite. Then it hit me... these were NOT my GF rice noodles. I rushed home and was sick for the next 2 days. It's a good reminder. Sometimes I get too relaxed, I guess.
Yikes! That happened to my housemate (also gluten-free) not too long ago. We're all diligent, but every once in a while we slip and miss something. So glad you're feeling better, but it sounds like it was a rough couple of days.
Oh, I am so sorry! Most of my mistakes have been in trusting other people who say that they've made me gluten-free food. I am so appreciative that they go out of their way to think through ingredients so that I can eat something at a potluck or a work event that I have often erred and taken a risk that I shouldn't have. I can remember being so sick after a dear friend told me that her casserole was definitely wheat free. She went through the list of ingredients and they were all naturally gf. I was thrilled and tentatively took several bites, enjoying the fact that I was eating something other than fresh fruit at our breakfast. Just as I was thinking that something just tasted too bready, I heard, "OH MY GOSH! I FORGOT!!! There's croutons in the crust!" Ugh!
My daughter gets really bad reactions....blisters in her throat, bad stomach cramps, really bad runs, vomiting, sinus gets clogged all up, her head starts to hurt really bad. There is absolutely nothing that helps her. All we can do is try and flush her out with water. It happens, even to the best of us. We all try really hard but its almost impossible to be perfect about it.
Oh Linda, I'm so sorry...I can totally relate to your mental symptoms. I, too, have really weird mental stuff going on if I ingest gluten, even the slightest amount...It seems that no matter how diligent we are, accidents happen & no matter how hard we kick ourselves, it doesn't change the fact we have to deal with the consequences. I've shed many a tear about that. :-) I'm glad to hear you're feeling better...
That's awful! Thanks for sharing your story. I've purchased items with gluten, but fortunately caught my mistake before actually eating it or feeding it to my family. After almost 6 years of being gluten free, I think I've got it all figured out. But sometimes I get too relaxed and confident, and forget to read the labels. Thanks for the reminder. Glad you're feeling better.

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