Day 136 – What will happen if I eat gluten after being gluten free?

I often wonder what would happen if I ate gluten now, four and a bit months after being gluten free? I have read on other blogs what happens to them and it can be very serious but with me, I have never suffered from serious symptoms and that is why I had untreated Coeliac disease for so long, possibly as long as 20 years.

I know a couple of months ago I got stomach cramps, nausea and a bloated stomach from eating pan fried fish that must have been dipped in flour, but what would happen if ate a piece of cake or a scone? I have sometimes secretly (and deviously) thought that once a year on my birthday, I could have a scone or something equally glutinous. How would it affect me? Would the symptoms be worth the sheer pleasure of eating it! What would one scone each year do to my already severely damaged gut (I don’t like that word but it is a medical term so I guess I can be ok with it. My mum used to think it was a swear word). Would the symptoms now be worse since not eating gluten for so long?

Well, today I found out. Not by choice but by accident. After having a wonderful hour or so in the cookbook section in Borders with Aitch and Haitch, we decided to go to Smith and Caughey in Queen St for a coffee and something to eat. I had heard they had gluten free bread and sweets.

I ordered bacon and eggs on gluten free bread and then I asked if they had any gluten free sweet options. The lady said they had a passionfruit cake that was gluten free and pointed to a beautiful looking pile of little round sweet cakes. I said I would have one of those as well. Then when she opened the lid, she took out a cake that was sitting beside the passionfruit ones and it was clearly different to the others but I didn’t think anything of it and thought that would be gluten free as well, as it was in the same display container.

When we sat at the table, I cut into the cake to see what it looked like and it looked like the light springy texture of a wheat flour cake. So I got up and took it back to the lady at the counter and asked if she was sure this was gluten free because it didn’t look gluten free. She assured me it was, so I went back to the table and took a bite. I was sure it tasted like wheat flour but then, maybe they use an amazing gluten free flour that tastes really good. So I had another little taste and then another little bit.

Then my bacon and eggs came out on the gluten free toast. So I pushed the rest of the cake away for afters, and started eating the lovely scrambled eggs and bacon. I know I shouldn’t have been eating my cake first but I was intrigued as to how “normal” tasting it was.

Then about 5 minutes into eating the bacon and eggs,  I suddenly felt light headed, really hot, nauseous, strangely unable to focus and felt like I was about to pass out. All I could do was put my knife and fork down and stare into space. Haitch asked me if I wanted to go outside and get some fresh air but by this  time I needed to get quickly to the ladies toilet as my stomach was started to feel rather odd and scary.

We came home straight after that and all afternoon I have felt “fragile”, lethargic, heavy, exhausted, not able to focus and very sleepy.

Well, now I know what happens to me if I eat gluten after four and a bit months of being gluten free. I definitely won’t be having anymore secret and devious glutinous thoughts.

I sent Smith and Caughey an email and I got a very supportive reply. They also went back to their baker to ask about the cake and what the ingredients were and all of the ingredients listed were gluten free. All I can do is put this down to a strange phenomena, as I have no idea what happened.

UPDATED 5 June 2011
I went back to Smith and Caughey yesterday and bought a takeaway of the same little cake and brought it home. When I ate it, I could taste the rice flour and had no effects from eating it at all. I still have no idea what caused the reaction above. Now I really don’t know what would happen if I eat gluten as I am not sure if the above reaction was caused by gluten or not. Maybe one day, I will just have to have a wee test. Gosh, am I brave enough? I will update this post if I ever do that.

UPDATED 3 January 2012
I ate brown rice salad that unknowingly contained gluten. The rice had been soaked in soy sauce overnight. If you would like to see how my body reacted to this, check out this post.

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33 Responses to Day 136 – What will happen if I eat gluten after being gluten free?

  1. David says:

    I’m sorry to hear that you found out the hard way what Gluten does to you now.

    At least you know now that you don’t want to ruin your birthday by ‘treating’ yourself to Gluten on the day.

    I hope you’re feeling better now.

  2. Much better thanks, David. It took about 6 hours to feel better again. I’m probably a bit lucky as some people take weeks to come right after eating gluten.
    Good timing as well because my birthday is coming up in a few days :-) You never know, I could have been tempted.

  3. darnkitty says:

    Now that it’s over with, I bet you are a bit relieved that you can finally stop thinking “what if”. That must be a good feeling, so at least something good came of all this. It’s nice that you got a supportive reply, but also bad that they got it wrong. Sounds like though, that you’re able to spot these sort of mistakes and hopefully it won’t happen again!

  4. Oh my gosh, this scares me! I sometimes think like you, and say….I wonder if I’ll be ok if I eat just one slice of pizza… I didn’t get mirgaines everytime I ate gluten before. But I guess since my body is used to absolutely no gluten now, it won’t be pretty.

    That sucks that the waitress assured you it was gluten free, even though it wasn’t!

  5. Janet NZ says:

    Oh you poor girl! But, I agree with the others – it is good that you know now, and that you wont be tempted.

  6. Juanita says:

    Ack! What an awful experience!

  7. Thanks for all of your comments. I am still working with the store to see what may have gone wrong.

  8. Lois Parker says:

    I have just tried some ‘glutenzyme’ pills I bought. I was visiting my sister and even though she was very careful it is hard in a bread-eating household and with a less careful partner to keep me safe. Within twelve hours my eyelids felt as if they were stuffed with lead shot and I was getting gut ache and brain fog. I took one of these pills three times a day for the rest of the visit and felt heaps better. I had given up visiting people for more than three hours at a time, so this may well allow me to lead a more sociable life – though have no intention of deliberately testing with actual gluten-bearing food!

  9. Amy says:

    I decided to eat a piece of cake at a wedding ceremony recently. It looked extremely good compared to most cakes and was chocolatey too. I’m also allergic to soy so chocolate is usually out for me (which made me even more tempted)…

    My symptoms were the worst ever. I could barely walk about 4 hours after I had the piece. Thankfully the reception was over by the time I was at my worst.

    I’m almost certain that the cake you were served would have contained gluten. Often restaurants have GF flour and flour nearby and the preparer may have used the wrong ones in the wrong items.

    I really don’t like the texture of most gluten free cakes at all. The signs that they’re ‘different’ to regular cakes become apparent as soon as you make the first cut. Especially with chocolate cakes. So since then, I (and a friend of mine who’s also coeliac) have done some research with regard to cake recipes and mixes (I just made a post about it yesterday) and the flourless chocolate cake recipe apparently turns out to be really quite cakey :)

    Thanks for sharing your experiences; and the temptation that surrounds so many of us – one that we often are afraid to admit (which I was – until I gave in).

  10. Jolene says:

    I’ve been feeling awful the last few months — just worn down, headaches, muscle aches, no energy, brain fog — and then I decided to go gluten free. Within a week, I noticed almost all of my symptoms were gone. Then, last week, I decided to have a couple of beers (okay, okay, and a slice of bread) and I was in agony all night with trips to the bathroom every hour. Any doubts I had about a gluten intolerance were laid to rest.

    Thank you for your post. It helps me to know I’m not the only one out there suffering with these mystery symptoms and to finally get to the bottom of what is causing them.

    • Hi Jolene, Thank you for stopping by and leaving a comment. Not very pleasant is it. Gluten affects our bodies in so many ways. I am wondering if you asked your doctor about the blood test that can be done to indicate coeliac disease and what the outcome was?

      • Jolene says:

        I saw my doctor about a month ago for a series of blood tests, but neither he nor I suspected gluten, so the test was not done. It wasn’t until after I saw him and my results came back normal that I started doing my own research. Being desperate for some answers and finding that I suffered from a large number of the symptoms of gluten intolerance, I decided to try it. It has been amazing what a difference I’ve seen. But I have not had the official tests done. I don’t have the rash or more severe symptoms, so I don’t know if I have full blown Celiac’s — maybe just an intolerance? I plan to have the tests done eventually, but not until I switch doctors. My current doctor has a nasty little habit of treating me like I’m making everything up.

        • Sounds quite familiar after reading other blogs. Time to change doctor’s, isn’t it. I don’t have a rash and I was asymptomatic before I was diagnosed. Coeliac disease presents itself in so many different ways. The only problem is that you need to have been eating gluten for some time before you have the test. Maybe it would truly be a great idea if you stopped being gluten free now, go back to eating gluten for a few weeks (eek, I know) and then ask your dr for the blood test. That would be a good start and the blood test is so easy.
          Good luck. I really feel for you.

  11. Norma says:

    Thank you all for sharing. GF is a new way of life for me for and your info is at times more helpful than any medical advise. It’s a dangerous road learning what you can and can’t eat and always helps to find your stories so quickly.

    • Norma says:

      …Forgot to share a recent story…while staying with friends, I was assured that all foods would be gluten free for our duration. There was plenty for me to eat such as fresh fruit and I was able to make some foods for myself. But the one day when I trusted they made a gluten free meal, smoked chicken I was skeptical as anyone who’s suffered for so long. I trusted and felt bad as soon as I went to bed. Morning came and I was miserable for about 4 days afterword. In conversation later the next day, the subject of the meal the day before came up that the chicken was BEER BUTT CHICKEN!!! What is in beer? Wheat! They thought it was safe for me to eat because it was not “poured” on the chicken but obvisouly absorbed. Even still, It affected me and I will not eat something I did not witness how it was made again. Hard for others to understand safety…don’t leave your health in the hands of others for fear of offending.

      • Oh my gosh! Funny, before I was diagnosed, I invited my neighbour for dinner one night when her husband was overseas. I hadn’t realised she was a Coeliac and had never really heard of the disease before.
        She replied by saying that she was a Coeliac and had to eat gluten free and that she found it easier to eat at home and kindly declined my invite.
        I felt a bit put out and thought that it can’t be that hard!
        But of course, now that I am a Coeliac, I totally understand and have done the same to others. And yes, it is that hard for people who aren’t Coeliac’s to know how to truly cook gluten free.
        Good luck and thank for sharing.

    • Hi Norma,
      It is so hard when you are starting out, isn’t. Thank you so much for leaving this comment. I really appreciate it and am so glad my blog can provide you with some information.

  12. bigman says:

    never diagnosed wth celiacs but im only 19 and have been on gluten free diet for about a year now wth small exceptions on holidays, a few weeks ago me and my friends made a gaint cookie and reeses i had the cookie for the hell of it i didnt get a head ache but it did make me really sleepy and feel full

    • Hi Bigman,
      Thank you for your comment. Feeling sleepy does seem to be quite a common symptom after eating gluten and the feeling full after eating the cookie was possibly being bloated. I am sure the giant cookie wasn’t so giant that it would make a Bigman feel so full :-)

  13. Avan says:

    I’ve never had any issue with my food until I was 15, where I fell from a bike and experienced near death phenomenon. Upon which I began to feel sleepy over gluttonous food. And the situation will get so intense that I will drop cold. There’s also a hard, burning feeling in my chest like as if I am suffering from a heart attack, and palpitation as well. My senses become very blurry, and a mild discomfort over the back of my head. My mouth will dry out, and I will need to gulp water like I’ve been stranded in the desert for a whole day through. This usually lasted for 10 hours and it will slowly subside. If I take plenty of water, and let myself drop on a bed, I will recover faster. Else, I will have to suffer for that solid 10 hours… Gosh!!

  14. wendekelly says:

    Thanks for stopping by my blog (http://homesteadinginsuburbia.wordpress.com/) earlier! I too am gluten free and last night actually, we went to our end of the year cub scout cookout and i ate about a half of a hot dog and bun. Within 10 mins, puffy tummy, headache, stomach ache….and so on! I was miserable all night and the this morning! I just keep reminding myself about how bad I KNOW I will feel if I eat that stuff! Just remember how GOOD you feel without it! :)

  15. karen says:

    after 6 months GF, i ate a wheat pizza which i thought it was GF!! next day i spiked a fever. the day after that, extreme fatigue…followed by symptoms of neuropathic pain in hands, legs (that is how i figured out i was gluten intolerant)…and about 3 days of tiredness and lightheadedness. Lots of mucus for about 2 weeks after that!!! Just terrible!!

  16. Naomi says:

    I decided to give up gluten recently because I was experiencing mad exzema in my ears!! This had been going on for a few years, and nothing I tried stopped it, except the gluten free diet. Well last night I went out with some friends and ate 4 pieces of bread… I’m also a vegetarian and the restaurant had everything meat… Well after the bread my ears itched alllllll night, and i sat on the potty all night!

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