My Friend Is Coeliac, What If She Decides To Eat A Piece Of Cake?

[kellynolan82]

I have a question: My Friend is Coeliac, What if she decides to eat a piece of Cake?

This is her statement:

I have been following a gluten free diet for a little over 11 years. I'm pretty certain I have coeliac disease and have excluded gluten from my diet for all this time.

I notice that when I do consume small amounts of gluten (i.e. less than 1/100th of a piece of bread worth of gluten) I don't seem to have a problem at all.

The other day, I was served croutons and was told they were gluten free. I wasn't so sure as they tasted a little different but I kept eating away. I noticed I had slightly more flatulence that evening and some extremely 'slight' symptoms but I was in no way unwell.

As I avoid gluten like the plague for a vast majority of the time, however, I have forgotten what a normal slice of cake tastes like in comparison to gluten free slices of cake. I can often tell whether a cake is gluten free or not just by looking at the texture of it when it's cut.

But what if I'm at a gathering? And an irresistibly yummy normal cake is on offer? And I decide to have a slice for myself?

As I have been vigilantly avoiding gluten (and my gut is in good shape) what would be the impact of taking a slice of cake for myself and eating it? It would only take 3 weeks for my gut to heal and seeing as though I'm quite asymptomatic that should be ok once a year or so shouldn't it?

Let me know your thoughts on this! Thanks.

What do you guys have to say? Do you feel that it will only take 3 weeks for her gut to heal should she 'give in' or do you think it could do damage that will take longer to heal (even if only once a year)?

[hh73]

This is extremely dangerous.

The damage she is doing to the inside of her body for a few moments of pleasure is not worth it. She cannot see the damage that is taking place when she does this. The flatuence you described is not the whole story - there are major reactions her body is having to the gluten, especially concerning antibodies. It will take months for her antibodies to stabilize after just one small exposure to gluten. She needs to wise up and stop playing games with her body.

[kwylee]

I'd have to first wonder what prompted her to remove gluten from her diet in the first place; not that I disagree with the notion - I'm one who really believes that gluten is probably harmful in some way to most humans.

If her body does not tolerate gluten for whatever reason, then she is doing harm each time she ingests. I don't know what would happen if I purposely ingested a couple of croutons, much less a whole piece of cake (and I don't want to know). At this point, I have only the mild and short-lived neuro symptoms associated with the rare cross contamination, so in that way I am like your friend. But I would not put that stuff in my body knowing that it was doing damage in the long run. Just because avoidance keeps you asymptomatic doesn't mean it's not a serious health issue.

[rdunbar]

from a risk/reward perspective this is like crossing a busy street blindfolded.

the upside is that you may get to the other side of the street.

the downside is obvious.

is it worth it??

[kellynolan82]

from a risk/reward perspective this is like crossing a busy street blindfolded.

the upside is that you may get to the other side of the street.

the downside is obvious.

is it worth it??

So by what you're saying, is it possible that she might be able to eat the whole piece of cake without her immune system responding negatively or noticing the gluten? I never realised that this is possible...

[txplowgirl]

She might then again she might not. She may have symptoms immediately then again it might not affect her until 2 or 3 days later. But she will still be doing damage to her system.

If she does this then she will get to where she will start doing it more often. Eventually she will start feeling the effects and then she might have irriverable damage. Just my opinion. Take it for what it's worth but I wouldn't risk it.

[kellynolan82]

She might then again she might not. She may have symptoms immediately then again it might not affect her until 2 or 3 days later. But she will still be doing damage to her system.

If she does this then she will get to where she will start doing it more often. Eventually she will start feeling the effects and then she might have irriverable damage. Just my opinion. Take it for what it's worth but I wouldn't risk it.

I thought she'd most certainly have a violent reaction. She tells me that she plans to do it once, only once. She just wishes to gauge the texture of a normal piece of cake to help with her cooking experiments for gluten free cakes

The coeliac society says it takes three weeks for your gut to heal after consuming gluten. I believe this is for trace amounts only and does not take into account the definition of 'gluten-gorging'.

Any one else able to clarify how long the damage could potentially last? That's mainly what she's interested in I think.

[rdunbar]

So by what you're saying, is it possible that she might be able to eat the whole piece of cake without her immune system responding negatively or noticing the gluten? I never realised that this is possible...

NO!! I'm saying that it would be nuts for her to eat gluten anything!

just like it would be nuts to walk across a busy street blindfolded.

it's a suicide mission, and you have nothing to gain from it.

you can get to the other side of the street by walking with your eyes open.

I think it's important to learn the science behind why gluten is so bad to get exposed to at all if you are celiac.

it's a 6 month hangover of inflammation every glutening, and we are'nt sure what the impact will be down the road in terms of how suseptible one will be to cancer, and other maladies that celiac opens the door for.

forget about your level of discomfort, or the symptoms as the thing to avoid.

think about the guaranteed inflammation, and the attack on your tissue as the thing to avoid.

^^^ wait a minute; she is consciously willing to damage herself for a triviality??

I'm afraid she may have a self-destructive bent for just entertaining the idea for a second.

It's the equivelent of going without water for a week to see what it's like to die of thirst, imo.

it's sad when you can't reach someone who needs help, but ultimately if we are grown-ups, then everyone makes their own decisions.

however, you can inform your friend as best you can what the risks are, and if you check into it further, I feel like you will find that they are heavy. heavy risks even getting exposed to small amounts.

I used to be a chef, and worked at the top resturants in San Francisco. I had to quit when i learned about celiac, and especially cross contamination.

if your friend is cooking in a gluten environment, and is working with it, she most certainly is getting glutened in trace amounts on a daily basis, anyways, and is'nt realy gluten free yet.

anyways, that was my experience.

I did'nt start showing improvement until I got away from that.

[kellynolan82]

^^^ wait a minute; she is consciously willing to damage herself for a triviality??

I'm afraid she may have a self-destructive bent for just entertaining the idea for a second.

It's the equivelent of going without water for a week to see what it's like to die of thirst, imo.

She believes that she'll be ok if she only does it "once a year".

I'm not convinced though.

[Skylark]

You need to tell your friend that the big issue is developing other autoimmunity, refractory celiac, and the chance of a rare but dangerous cancer.

Her immune system will always notice the cake. There will be T-lymphocytes recruited to her intestines to do celiac damage. Whenever the autoimmunity starts, there is a chance it can spread. People who don't stick to the celiac diet can develop Sjogren's syndrome, Hashimoto's thyroiditis, or Graves' disease. The celiac response can also spread to the nervous system or skin (dermatitis herpetiformis), making it worse when she is exposed to gluten by accident. Cheating, even occasionally, definitely increases her risk for developing more autoimmunity.

Celiacs who cheat on the diet also risk developing refractory sprue, a form of celiac that is no longer responsive to the gluten-free diet. This is unusual, but people on the board have had it happen. Along with refractory sprue, there is a rare but dangerous intestinal cancer that has a higher incidence among untreated celiacs. I don't know how much cheating occasionally increases risk, but is it worth a piece of cake?

[bigbird16]

I thought she'd most certainly have a violent reaction. She tells me that she plans to do it once, only once. She just wishes to gauge the texture of a normal piece of cake to help with her cooking experiments for gluten free cakes

The coeliac society says it takes three weeks for your gut to heal after consuming gluten. I believe this is for trace amounts only and does not take into account the definition of 'gluten-gorging'.

Any one else able to clarify how long the damage could potentially last? That's mainly what she's interested in I think.

She may have a violent reaction; she may not. This may be the one thing that pushes her body too far; it may not. We're individual in our reactions and the damage done.

As someone who used to bake and decorate cakes a lot (as in I wanted my own bakery and have done wedding and shower cakes), I can almost understand her desire to create something the same or similar or even better. Almost. There's nothing in this universe--reward or aversion--that would make me want to put a piece of regular cake anywhere near my mouth again.

As a baker I say this. The best way to get a great cake is to experiment. Bake and bake and bake. Try different things and test it all on friends. If they like it, she's got a good cake. It doesn't matter if it has the same texture. What matters is that it tastes good at this moment to the people eating it. People like cake, and I swear that if you have a good recipe with a slightly "different" texture, they can't tell. They'll just rave about the taste.

I'm rebuilding my cake repertoire, learning again how to bake. Some of the cakes I've made wouldn't be fit for the birds much less people; with other cakes, no one has been able to tell anything was different. Tell her to focus on the future with her cakes and not worry about what's past with the baking.

Cheers,

Katherine

[lynnelise]

I agree with the above, could she not have friend test her cakes and tell her how they compare to a gluten cake? I think other than the fact the she will react to the cake, whether she notices it or not her body will, if she does this then she may become dissatisfied with gluten-free treats. I remember when I first started the diet I thought all the breads were terrible, now I love Udi's and find the ones that grossed me out in the past to be very tolerable. I really think I needed to forget what "real" bread tasted like before I could appreciate gluten-free bread. If once a year I ate a slice of sourdough bread I be reminded of how different gluten-free is and wouldn't be satisfied. I think her experiment would just trigger her to sneak more and more treats in and eventually completely sabotage her health.

[jenngolightly]

she may become dissatisfied with gluten-free treats. I remember when I first started the diet I thought all the breads were terrible, now I love Udi's and find the ones that grossed me out in the past to be very tolerable.

Agree. When I first went gluten-free I hated the texture of baked goods - now I love them, and they're treats that I give myself very occasionally (even bread). For my birthday I made the new Betty Crocker gluten-free cake and topped it with homemade gluten-free corn-free chocolate frosting. It was delicious! Perfectly moist and chocolaty with rich, creamy frosting. I was in heaven. It was just as I remembered birthday cakes had tasted 5 years ago.

Go figure - no one else liked it. That's okay, more for me.

I think it might take another 5 years to get used to gluten-free baked goods if I cheated like the original poster's friend. Licking the bowl of a gluten-free cake is definitely sub-par, but the end result is decadent!

[rdunbar]

when she says "I avoid gluten like the plague the vast majority of the time.", it leads me to believe she cheats on a regular basis, anyways, and she is just trying to justify what she wants to do, in total disregard for her own future, and well being.

personally, I would'nt be able to handle the heart break of watching a friend self destruct like this. I admire your trying to intervene, it's very noble of you.

she needs to get it that once a month is too much, once a year is too much, just ONCE is too much.

cheating and hoping that your immune system won't notice this time is purely wishful thinking. the reality is that she is unleashing a cascade of antibodies that are going to attack her every single time she cheats.

[Takala]

Real food tasters tend to chew and then spit it out.

Seriously, if you're testing recipes, you try them out on the glutenoids.

Most normal cake is dominated by the overwhelming frosting, anyway. I believe this is to cover up the lack of quality of the cake it is supposed to be framing. If you can't make a decent gluten free frosting, well, there is little hope.

The gluten free bakery an hour and a half from here makes these frosted buns so ridiculously good, that they get a lot of normal people in there every time I've been there. ( I have pulled the buns apart carefully at home and tried eating just the insides, checking out the texture, and the cake part is equally good. My husband, a glutenoid, concurs that these would "pass" for most people as regular, the only way he can tell is that he has compared both kinds now for years, back and forth, and he knows how to compare textures. ) The look on some kid's faces in the bakery, when the adult/parent says "you can have anything here you see" when they are with their little friends is just priceless.

[kellynolan82]

when she says "I avoid gluten like the plague the vast majority of the time.", it leads me to believe she cheats on a regular basis, anyways, and she is just trying to justify what she wants to do, in total disregard for her own future, and well being.

personally, I would'nt be able to handle the heart break of watching a friend self destruct like this.

Good point.

I believe she actually has been really vigilant. I think (just reading between the lines) that at a recent party she saw one of the 'nicest-looking chocolate cakes ever' (or as she quoted - she didn't give in that night).

She dines out a lot, she's not really into making her own food and seeing as though so many restaurants and food service outlets are good about dietary requirements it seems a motivating factor. I can assure you she does her part by asking the restaurant or outlet to take care with her order(s) but of course there's always a risk in this regard.

I also keep hearing the following from so many ignorant people:

"If a crumb falls onto your plate and ends up in your mouth, you might as well eat a slice of bread!"

Just seems like some who don't know about this condition have very strong views about what we should or shouldn't be eating.

[Monael]

I agree with a previous poster. If her cakes taste delicious, who cares how the textures compare? Not only that, but even gluten containing cakes have varying textures. Think pound cake vs. angel food cake. Among others!

Once I went on the gluten free diet, I realized that things would be different. But seriously, there are so many other things to eat, why risk your health? I used to looooove pie, cake and cookies. Instead of eating those treats, I just substitute with either ice cream, chocolate bars, caramel corn, etc. I am still working on the bread substitutes but so far rice cakes are replacing bread for my sandwiches.

The thought of cancer or other neurological issues is enough to keep me honest. I hope she reconsiders, before she lives to regret it.

[rdunbar]

I also keep hearing the following from so many ignorant people:

"If a crumb falls onto your plate and ends up in your mouth, you might as well eat a slice of bread!"

celiac is an autoimmune disease. the dangerous effects are caused by an autoimmune reaction in which your immune system attacks your own tissue,

causing imflammation in the gut, the brain, the skin, the nervous system.

you hear about IgG and IgA antibodies, but i've learned recently that it just part of the picture,

theres agglutinin, gliadin, glutenin, gluteomorphin (drug like response), prodyorphin, transglutaminase, glutamic acid decarboxylase.

I don't know much about all of these, but it may explain the varied presentation of symptoms that individual celiacs have.

the idea of healing is to stop the production of these antibodies, and peptides.

a bread crumb doesn't stop the production.

either does a slice of bread.

what does stop it is NO gluten. unfortunately, there is no 'get out of jail free card' by having a little. theres nothing proving that there IS a safe amount of gluten. your system senses the presense gluten in it, and, what does it do?

it produces antibodies to attack your tissue. I'm not sure that it says, "oh, thats not enough gluten for me to get to work"??

I've gotten a panko bread crumb in my mouth by mistake eating sushi a few years ago, and spit it out, realizing what it was, and I was barely able to walk; I had an episode of losing my balance, (ataxia), and the lot of other symptoms. seriously, it was a nightmare situation being out in public, and feeling helpless.

you won't convince ME that the residuals of a bread crumb is a safe amount!!

here's the study: "a milligram of gluten a day keeps the mucosal recovery away; a case study" Fedirico Biagi 2004

cliff notes: 1/60th of a teaspoon of wheat flour (only of which a tiny fraction is gluten there being literally 100s of proteins in wheat),

a day will prevent healing of the gut lining.

If your friend eats out all the time, i'm wiling to go out on a limb here, and say that she isn't to square one of the healing process. 11 years being 'psuedo' gluten-free may be better than gluten bingeing the whole time, but don't be fooled, and confuse this with the healing process.

I know from experience, i did what shes doing for @ 3 years, unfortunatly. I did'nt know about this stuff, and about CC, or the extreme potency of gluten. I did'nt ever knowingly cheat, even, but I now realize i was leaking gluten into my body every day w/ CC, and eating out, and working with it.

I just got sicker, and lost weight.

packaged 'gluten free' foods that have trace amounts have the same effect, imo.

I did'nt start getting better until i made the 100% commitment to make all my own meals, and do everything i can to eliminate gluten from my lifestyle all together. (eating only meat, veggies, and fruit,)

for me, having cooked (and baked, sadly 4 years) for most of my life I feel fortunate that i'm kinda over it when it comes to the foodie scene, and fancy foods, or ethnic food. I've seen it all, and don't feel the draw at all, that seems to be very common among other celiacs.

I started cooking for work as a teenager, and I'm 44 now; I worked at Gary Danko in SF, a michelin 5 star resturant. i worked 60- 80 hour weeks, i burned out a long time ago on food.

I just don't view food as entertainment, or even as art anymore. I just don't care.

what i DO care about is having a rewarding, happy life that doesn't get cut short by cancer.

I've had major depression/ anxiety problems my whole life, and for the first time i feel like it's getting better, and that life for me could turn into something that i had never imagined.

it's so exciting for me. learning this has literally been the best thing that ever happened to me.

it's no contest for me, anyways.

[Elfbaby]

OMG...where is this bakery?!

[maximoo]

how come you spell celiac with an O? -- Coeliac is that gaelic or european or something? just curious...

[ravenwoodglass]

how come you spell celiac with an O? -- Coeliac is that gaelic or european or something? just curious...

That is the European spelling

[maximoo]

ok thanks what I thought.

[kellynolan82]

Thank you for all your comprehensive replies. Well, the wedding day came; the cake looked so decadent and delicious even I could barely raise the bar for myself, but I managed to resist.

The same couldn't be said for my friend. She gave in (which I suspected she might) three days ago and still is not in good shape. She was in agony for about 48 hours; could barely walk about 3 hours after having the cake and we were almost thinking of taking her to hospital. Is it normal for coeliacs to react to wheat this badly?

She doesn't feel like eating either and everything seems to be making her sick (including 100% gluten free foods). Even rice. I hope this was not the spell of a new autoimmune disease.

Any tips on how to get her back so she's well soon? Like things to eat, drink, etc. Her stomach is not happy!

[GlutenFreeManna]

Thank you for all your comprehensive replies. Well, the wedding day came; the cake looked so decadent and delicious even I could barely raise the bar for myself, but I managed to resist.

The same couldn't be said for my friend. She gave in (which I suspected she might) three days ago and still is not in good shape. She was in agony for about 48 hours; could barely walk about 3 hours after having the cake and we were almost thinking of taking her to hospital. Is it normal for coeliacs to react to wheat this badly?

She doesn't feel like eating either and everything seems to be making her sick (including 100% gluten free foods). Even rice. I hope this was not the spell of a new autoimmune disease.

Any tips on how to get her back so she's well soon? Like things to eat, drink, etc. Her stomach is not happy!

You may need to take her to the hospital. Everyone's reactions are different but what you describe is not uncommon. My immune system was so much under siege one time after an accidental glutening that I developed brochitus which turned into pnuemonia. Hopefully this was a lesson for her she will not forget. Make sure she getting lots of water and other liquids, especially if she is have diarhea (hospitsal can give her an IV of fluids if she will not drink anything). I like to eat bland food when I get glutened but I do go through a couple days where I want nothign to eat at all. If she is having trouble with constipation then she can take a laxative to help get the gluten out of her system faster. She is just going to be sick for a while and there's no way of knowing how long because it varies from indivudual to individual. Mine usually lasts for at least a week and up to two weeks if I have no other complications (like the time I caught brochitus).

[kellynolan82]

My immune system was so much under siege one time after an accidental glutening that I developed brochitus which turned into pnuemonia. Hopefully this was a lesson for her she will not forget.

She says that she's never been this ill from gluten consumption in the past. I was quite surprised it got to that point myself, as she has often managed to 'get over it' within a day.

I don't know that she has learnt. She said it was just like what she remembered prior to her gluten free days. The texture was very appealing too; but I try not to focus on getting consumed by 'things'. I guess it's our own choice really. But I think it might be a good wake up call for many of us. I certainly won't be going near anything 'gluteny' anytime soon.