Related Articles

77 Comments

  1. 1

    Susan Boyko

    I can relate to wanting to go off the gluten-free diet on occasion. I LOVE pastry. Unfortunately, it doesn’t love me back. So to help me stay diligent I have the following posted on my mirror so I can read it every morning (forget where I found it) –

    “Why it’s important to stay vigilant on remaining gluten free with celiac disease –

    12 Glutenings a year increases your chance of cancer 77%

    It takes 28 days to heal your mucosa and 4 months for your body to stop making celiac antibodies that are attacking your body.”

    This works for me – just imagining all those little suckers attacking my body creeps me out. So – do you still want that cake just because it’s pretty???????

    Reply
    1. 1.1

      Kari

      Those are truly scary statistics!! Would you mind citing where you got the info? I would really love to share that with a few of my family members who don’t think celiac is real and that cheating is no big deal.

      Reply
    2. 1.2

      Hap

      Kari

      Susan mentioned that she did not remember where she got the info taped to her mirror; however, even though I can’t vouch for her mirror’s 77% cancer increase statistic, I can emphatically state that in my own personal case & that of my Mom, glutening causes a 100% increase of risk for cancer. My Mom is currently being healed from Stage 4 B cell, mantle cell, NHLymphoma simply by eating as free of gluten as humanly possible. My Mom’s oncologists’ medical file for Mom is over 8″ thick to validate this info. Mom’s oncologist doesn’t fully understand the results but she instructed us to keep doing what we’re doing because it is obviously working after the chemo quit working. Mom’s bone marrow biopsy was 89% cancer cells in April 2013 and Mom’s tumors are now “melting” away. Mom is still kicking and doing pretty good!

      My own glutened caused cancer issues included skin cancer, esophageal cancer, precancerous colon polyps, GERD, my retina falling apart, 50 of the Dude’s “symptoms of CD” chart symptoms, etc. etc… I have done everything I can to eat healthy and return to good health for last 19 months. It must be working because in last 2 weeks several people have commented how healthy I’m looking again. Yayyy!!!!

      I recount this info so you can give it to your family members. Since I am an attorney, I’ll give them an Affidavit and a sworn testimony deposition, if it helps them believe you. Celiac Disease and NCGI/NCGS is a brutal autoimmune disease/condition that gets progressively exponentially worse over time the more gluten consumed.

      GDude and Irish Heart and others here perform a wonderful service as advocates to save people’s lives. Non believers cannot assume that there are no immediate consequences solely because there “appear” to be no immediate consequences. My Mom has endured 3 rounds of Stage 4 Lymphoma since 1998 before we finally discovered it was gluten causing it all along. I began having my first symptoms (coughing up fresh blood during every upper respiratory infection) 22 yrs ago and it was not until the last 4 yrs that the conglomeration of symptoms almost killed me that I discovered gluten was the cause of the systemic autoimmune response. I’ve not had a single respiratory episode since being GF the last 19 months.

      Mom and I are returning to wonderfully good health again simply by not eating gluten – it’s great to be alive instead of dying last year like we both most certainly would have died if not for Jennifer Esposito acting as our first CD advocate in 2012.

      I hope your relatives love you enough to listen to you. Sorry, I repeated all of this for those of you who already know but I did so only for Kari’s convenience since Susan did not remember where she got her mirror’s daily reminder – a very good reminder. Believe me – gluten can kill you and almost did kill me – please be responsible & not cheat even a little bit every now & then.

      Reply
    3. 1.3

      Juniper

      WOW. Those are some frightening statistics in black & white. I wish we could find the source.

      No piece (or taste) of cake is worth sacrificing our health. THIS IS OUR LIVES, PEOPLE!

      Reply
    4. 1.4

      Hap

      Kari & Juniper

      The following link to PDF reports extensive study emphasizing lifetime adherence to GFD for celiac patients and sobering results of failing to strictly adhere. I found this last yr when I started researching the link between my celiac, my Mom’s NH lymphoma and my Mom’s sister’s and my Dad’s brother’s deaths from luekemia.

      There is much much more research available; however, since Mom & I are living examples, so far, and proof of the statistics in this report, we don’t need any additional proof to remain strictly GF for the remainder of our lives.

      Being & staying GF, no other medication of any type at this point after chemo stopped working, is healing Mom of NH Lymphoma and has already healed me of all cancer as of today since my last CT scans in March, 2014.

      I suspect Susan’s mirror’s info is a conglomeration of various research since the attached PDF contains a related 77% statistic, which was also cited in other articles.

      Susan’s other statistics have been mentioned in U of Chicago reports; however, I can’t currently read all of these scientific reports until my eyesight heals so I defer to Irish and Lima if they want to provide any additional details, explanations &/or rebuttals. I’ve made my choice to remain GF forever because I was healed from cancer as a result of being GF and I’ll probably never change my mind or take any future chances as a result.

      I had to do the research because my life depended on the answers. Hope this helps.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378455/pdf/gut00609-0067.pdf

      Reply
      1. 1.4.1

        Juniper

        Thanks so much, Hap. I don’t know if you’ll see this message, but I just now saw your message and I’m so thankful you posted the link. Frightening statistics indeed.

        Reply
  2. 2

    Sue in Alberta

    Seriously??? Cake??? What’ s with the asking for “permission”? So, you’re one of “those” Celiacs, are you. Every time you sneak a bit of this or just taste a bit of that, you erode ANY credibility you might have had. Does this reflect right back at anyone else with Celiac? YES!!!!! I won’t even bother going into the long term damage you’re doing to yourself as GD has already touched on it and I am guessing you already know, on some level, anyways. Or maybe you don’t but PERMISSION?!?! You choose but I ask one thing, how about having a disclaimer everytime you tie into croutons etc. Something like, ” This is so irresponsible and don’t judge anyone else with Celiac because this is just willful stupidity.”

    Reply
  3. 3

    JamieG

    Well said Gluten Dude! I totally agree 100%. No cheating, not even a crumb, is EVER allowed!! Thanks for standing up for all of us that live with this disease in a world where many treat it like the latest fad.

    Reply
  4. 4

    Cynthia L.

    are you for real? Do you not know that besides feeling sick for days weeks after ingesting gluten the constant damage you are doing to your insides can lead to much more serious problems. you are a fool and should know better than to contemplate eating foods that you know have gluten in them. Right now i seem to have come in contact with some gluten and the rash on my elbows and knees not to mention the itch on my scalp that feels like cooties, so why in the world would one knowingly gluten themselves. when i see this outward damage to my skin it makes me think of the damage on the inside of my body that i can’t see but only feel the results of. Like Dude says you are hurting all of us with your stupid decisions. idiot.

    Reply
    1. 4.1

      Nichole

      As gluten dude said we are a community. And as a community we support each other and do not call each other fools/idiots/stupid. We all have our own struggles. His is cheating, so we should be giving him the strength to resists cheating instead of calling him an idiot.

      Reply
      1. 4.1.1

        Cinyin

        yeah Cynthia L, we’re not helping each other by pushing each other away.

        Reply
  5. 5

    Jersey Girl

    GD-

    Wtf? Seriously. After all the medical & social community has done for our cause? Look, I know I am sounding a bit harsh here but whoever this person is, is totally screwing our cause. After all the awareness (lets just forget the barts/dr oz’s/kimmels of the world for a sec) and time all of us have given to help each other. Gah!

    Don’t eat the cake. Do it for all of us. Do it for yourself.

    grrrrrr-
    Jersey Girl
    ——————————————————————————–
    “You’re a victim/Of the system/You are your own worst enemy/Know your enemy”

    “Restless Heart Syndrome”

    Reply
  6. 6

    Kate

    There are SO MANY good things to eat that ARE gluten free – why any celiac would deliberately eat something that isn’t is beyond my comprehension. Wedding cake is often baked weeks in advance and frozen – it isn’t even very good! Really, this person sounds like someone who needs to grow up. Not being able to eat the cake at a wedding is NOT one of life’s big problems – get over it!

    Reply
    1. 6.1

      Juniper

      Yeah, totally agree. Wedding cake = boringest of the boring.

      Reply
  7. 7

    Sandra

    Absolutely NOT! Read the first comment about cancer risks. I have a friend whose sister had celiac died from complications associated with celiac because she believed she could cheat on the weekends. It was a horrible painful death at 40. Is it really worth a piece of cake? It’s suicidal to eat cake or cheat on any gluten! Be diligent, be totally gluten free!

    Reply
  8. 8

    Katy

    As a celiac who also gets few symptoms when I accidentally eat gluten I sympathise with the craving, but I would never, ever, EVER eat it! It’s just not worth it.

    The temptation and idea that gluten won’t hurt us “just this once” is going to be there, especially on days when you feel like giving up completely, but the only way to carry on is to realise the damage that is being done inside – whether there are symptoms or not.

    Since being diagnosed 6 months ago I’ve been super strict and never knowingly eaten gluten. We all know the diet is frustrating, but there’s nothing worse than an “on-again-off again” celiac! Sometimes we just need to remind ourselves to put the cake down, whether we want to or not! (It probably doesn’t taste as good as you want it to anyway).

    Reply
  9. 9

    Lisa Mims

    Um, no, “You should not ever eat small amounts of gluten.” For whatever reason, I don’t react that much to small amounts of soy sauce–and I ate it, twice a week, for about three years, with a significant other who wasn’t really willing to eat something else. (I didn’t know soy sauce has wheat in it, and I’m very careful about gluten, otherwise.)

    Over a course of years, I developed microscopic colitis, which is a curable, but incredibly nasty side-effect of celiac and gluten-intolerance. Basically, it’s chronic diarrhea, and you can get it from only semi-regularly eating very small amounts of gluten. It takes years for the gut to heal from it, and that’s after you have microscopic colitis for years. (It develops slowly, sometimes.)

    Chronic diarrhea. If that’s what you’re after, keep eating gluten.

    Reply
  10. 10

    Kathryn Joy

    Amen!!

    Reply
  11. 11

    Rachel K

    I have heard of these people who cheat but I don’t understand how they put themselves through all the pain? Maybe the symptoms and reactions are different but for me, I will vomit violently for 12 hours and be in bed for four days feeling as if I’m being punched by Muhamad Ali. So I would never purposely do that? Is it like the same people who are “cutters” where they purposely cut themselves? It’s just shocking to me.

    Reply
  12. 12

    Hap

    After over a decade of strict GF and only a FEW croutons caused the emailer/permission seeker “flatulence & … ‘slight’ symptoms” – I think her body’s immediate response answers the question as to whether gluten damage starts again very quickly.

    As Susan said above, “12 glutenings/yr increases cancer chances by 77%”

    Like others in this Celiac Community who have and/or are still fighting Cancer and other extremely debilitating effects from this horrible CD and/or NCGI, no one could force feed “normal cake” to me, much less entice me to eat willingly. The permission seeker needs to change her mindset and get used to her new normal.

    With all of the wonderful, healthy, tasty GF options produced by Jennifer’s Way Bakery and Jules Shepard and others, there is no reason for a CD / NCGI person to ever eat gluten filled baked goods again.

    When the inconvenience of change is overpowered by the pain of not changing…then we change … If the “permission seeker” continues down her current path of cheating then the pain of not changing will cause her to change, if it’s not too late!

    Reply
  13. 13

    Shannon

    Take your own darn cake and be safe!

    Cheating is terrible for your body but if you don’t care about that fight the fight for the rest of us who are enjoying the weddings, birthday party and other events without cheating. When Celiacs cheat it makes it look like cross contamination and such are no big thing. For a lot of us those croutons would have laid us low for days if not weeks. I wonder how often when we get accidentally glutenend we have some cheating fellow celiac to thank for the lack of diligence.

    Serious pet peeve!!!!!!!!

    Just say no!

    Reply
  14. 14

    Mary

    I echo the “Noooooooo!” You will have an impact on how you, and the rest of us are looked at and treated as a community. It’s hard enough to be taken seriously with all the fad aspects and jokes going around about being gluten free. Stop it!
    Here’s my tip: Bring your own beautiful gluten-free cupcake so you can celebrate and enjoy your friend’s wedding!

    Reply
  15. 15

    thetxlady

    Dude are you POSITIVE this isn’t bart trying to get you to say his “kinda gluten free” cookies are safe “sometimes”?

    I make wedding cakes & don’t care how pretty a refrigerated for a week+ cake LOOKS it still tastes like rat poison. Now it may be chocolate flavored rat poison with raspberry fruit filling…but its still poison!!!
    Also I’m calling BS on flour frosting…THERE IS NO SUCH THING!!! Fondant is sugar & oil, buttercream is sugar & lard, “whippy” is heavy cream & sugar…seeing a theme here? Its sugar sugar & sugar with a rat poison center.

    Reply
    1. 15.1

      Gloria @ glutenfreepoodlehome

      That made me think this letter was a fake. Who ever heard of putting flour in frosting?

      Reply
      1. 15.1.1

        Sheryl

        Certain cooked frosting recipes do have a flour base (I know, because I’ve adapted my aunt’s recipe with GF flour)–however–it is not the kind of icing that I would EVER use on a wedding cake. It’s creamy, but it’s not wedding-cake caliber frosting. That said, the thought of eating regular cake gives me the willies. Bring your own cake, arrange something with the baker or chef (a GF cupcake?) or sit it out and eat GF cake when you go home.

        Reply
      2. 15.1.2

        Valerie

        Some years back I worked at a bakery that had a signature buttercream made with cream, butter sugar and flour. Before I knew I had celiac, I would eat those up so fast, best frosting I ever had until that point.

        Reply
  16. 16

    Connie

    This letter is such a cry for help! Oh honey, you need to get yourself educated about what you are doing to yourself.

    As another of the “not too many symptoms” celiacs, let me tell you what happens when you eat gluten for 20+ years without knowing I was celiac. I got PCOS. I ended up with endometrial cancer 40 years before most people get it. I have endless problems with vitamin deficiencies, which have now lead to thyroid nodules, so I have to have my thyroid removed.

    It may only cause a few symptoms now, but they compound. Don’t do it to yourself!

    ::hugs::

    Reply
  17. 17

    SueS

    When a friend says, ” Can’t you cheat once in awhile??”, I always say~~just imagine it sprinkled with those little mice poison things. Would you eat it then? Because it is basically the same to me.

    Reply
  18. 18

    Kathy

    AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!
    My brain hurts.
    And, it’s not from gluten.

    Reply
  19. 19

    Jennifer

    I understand your cravings. I don’t get them often anymore, but just the other day I had a huge craving for one of those junky super burritos wrapped in a chewy flour tortilla (I know…I know…yuck..it’s not even real food. My daughter looked at me like I was crazy). But…even if someone had set one down in front of me at that very moment…I would NOT have eaten it. It. Is. Not. Worth. It. I never, ever cheat. It is my solid commitment for life. I just shift my focus away from what I can’t have to how much better I feel, now that I am gluten free. Even if I knew that a little wouldn’t cause severe symptoms for me to FEEL, I couldn’t do it. The road to feeling well has been too long and way too rocky for me to look back now. Enjoy the wedding. Focus on the celebration and forget about that cake. Bring a decadent GF dessert for yourself if it helps. Good luck!

    P.S. If you want a good visual on how cake makes people crazy and laugh about it go to http://hyperboleandahalf.blogspot.com/2010/10/god-of-cake.html . It is not a celiac website, just a funny story. Don’t be the god of cake.

    Reply
  20. 20

    Lima bean

    You know, wedding cakes rarely taste as good as they look. They have to make the cake a few days in advance. Some places freeze them for a few weeks. Some just cover the cake in fondant and let it sit for a few days before decorating. If you really want to cheat with a piece of cake, go to a good bakery and get a nice fresh piece of your favorite flavor. but don’t do it because I said it was ” OK”. You need to be responsible for your own actions not blame them on others.

    Reply
    1. 20.1

      Eileen

      I’m with Lima Bean. Wedding cake might look pretty but it’s just not that great to eat.

      Reply
      1. 20.1.1

        IrishHeart

        Never tasted one that was all that great myself, Eileen. :)

        Last summer, I went to my cousin’s daughter’s wedding in another state. Before I went, I talked with my cousin who was very gracious about my questions (she knows I have celiac),
        The caterer handled the GF people’s meals so expertly. There were 6 of us “Gee Freers” , my cousin reported to me before hand.

        Our soup course was different and our salads were ‘crouton-less” and prepared separately and the entrees did not have gravy on them (who cares anyway–a good filet does not need “gravy”) but when dessert rolled around and they cut the cake and brought out ice cream, I whipped out some giant homemade GF oatmeal coconut chocolate chip cookies and all the GFers got one of those. (I found out who the other 3 besides my mom, cousin and I were…) .The people said the cake was “kinda blah” and my cookies were very much appreciated. One elderly woman whom I had never met before in my life was so tickled by the GF cookie I gave her, she got teary eyed.
        She said she was diagnosed 30 years ago and had always been leery of attending functions for this very reason.
        I said, “But, we should have a treat too… I wasn’t going to miss out and why should you either? :)

        Her niece gave me big hugs. LOL.

        Reply
  21. 21

    Liane

    When I see the question in reference to cheating, I always wonder. I can’t even have one small amount of gluten and I am running for the restroom! To me, it isn’t worth the pain I go through. When people offer me cake, I often say, “I am sorry, I can’t have my cake and eat it too.” I NEVER look at it as being deprived.

    I can’t tell you how many times someone will come to me at church, all excited, they made gluten free brownies…just for me. I get to the deserts and see they have put them on the plate along with everything else. The next comment is, “oh just brush it off.” Sorry, I am sick just thinking about it. My reaction to gluten is too violent to take the chance. My reaction when I see even a crumb of bread is like some people’s reaction to a spider.

    Reply
  22. 22

    DHead

    Interesting article. I wasn’t sure why you were all fired up at first but you supported your tone with good reason.

    I have been putting a few things together to write my next blog post about Celiac diagnosis. As some of you may remember, I bashed the Celiac community when I first started Gluten Free Thin. I didn’t understand why celiac’s got so upset about the gluten free hype. Well, now I do. And the reason I do is because I have educated myself. I spend hours upon hours reading different blog posts, articles, publications, etc. and have come to the conclusion that Celiac disease is NO laughing matter whatsoever.

    To be honest, I believe I have celiac disease. I started my gluten free blog under the impression that I have a gluten intolerance, not CD. Simply put, I was ignorant on so many levels. I have read countless stories about people who finally decided to get tested after years or feeling like shit. These stories are SO similar to mine that it is scary. Before any of you tell me I am crazy for thinking this, let me stop you.

    I know my body the best and can tell you that something has not been right for a very long time. I have had stomach issues since I was a kid. Never really thought too much of it though and I try to stay away from the doctor as much as I can. So stupid, I know. It doesn’t stop with the stomach issues. I could go on and on but I will save the juice for my blog post!

    My dilemma now is trying to figure out how to get tested. Here’s the thing: I guess you could put me in the same category as the person who sent you the email in that I may slip up from time to time and eat something with gluten in it. I notice side effects right away. My stomach starts to rumble, the food doesn’t digest, my fingers swell up, my stomach swells up and so on. With that said, eating gluten from time to time isn’t something I consider to be necessarily dangerous to my body. However, if I have celiac disease now we are talking about a different animal. Then it IS dangerous for me to be eating gluten. Then I really have to watch for cross-contamination and inspect labels with scrutiny. I know a lot of you will say if you are in question about whether or not you are a celiac then don’t ever eat gluten again. That’s not really the point though.

    The point is, it is annoying not knowing whether or not I have this auto-immune disease. And for what I am gathering, it is almost impossible to get accurate test results if you are currently staying away from gluten. People have suggested I start eating gluten again for a few weeks so that I can a definitive answer. Well my answer to that is a big fat NO. Why would I poison my body for a few weeks when it could be ripping apart my small intestine? I just don’t see the logic in that. There has to be a better way. How about a genetic test? I don’t know all that much about it but have heard it can be done if you are not eating gluten.

    So I am trying to figure out what to do and how I can find out if I have friggin’ celiac disease or not. I would greatly appreciate some help and suggestions!
    Thanks,
    DHead

    Reply
    1. 22.1

      Sarah

      I’m in the same boat. I believe I have celiac disease because I have so many risk factors associated with it (positive for DQ8 gene, hypothyroidism, IgA deficiency, confirmed and suspected vitamin/mineral deficiencies, etc.). However, my tests came back negative. I won’t go into the whys or hows because it’s a long, complicated story. The gene test won’t diagnose celiac disease but will tell you whether or not you’re at a higher risk for developing it. One copy of DQ8, which is what I have, is considered moderate risk. I would love to have a definitive, reliable test done that’s not dependent on eating gluten or having gluten damage present. The “in vitro gliadin challenge” seems to be closest to that, but it’s only done in celiac centers, and I have no idea which ones. I asked Dr. Fasano about it at the Gluten & Allergen Free Expo in Atlanta. I’m seeing a specialist in Atlanta that I’m hoping can help with finding a location, but I’m not sure how much she will be able to do.

      Reply
      1. 22.1.1

        DHead

        That’s some good info, Sarah. Thanks!

        I am sitting here thinking to myself that there MUST be a way to be able to tell. Its hard to believe that with all of this technology, there isn’t a definitive way to test someone like us. Maybe one day…

        Reply
        1. 22.1.1.1
          1. 22.1.1.1.1

            Lima bean

            I think the person asking about cheating ( the ” guy” in the topic blog post) got a lot of great answers to think about.

            Reply
  23. 23

    KV

    I might do it…one day or one time. I wouldn’t tell any of you, and I wouldn’t do it more often than once in a blue moon, but I’d it at some point. I have been planning to do it at some point for about 2 years now and haven’t actually done it. But one day I’m going to eat Popeyes chicken and a few biscuits, scarf down a bunch of cupcakes, and drink a 6-pack of beer. And then I’m going to suffer physically for about 72 hours, be exhausted for about 6 months, and hate myself for at least several days. One day… Maybe… But I won’t ask for permission.

    Reply
    1. 23.1

      Hap

      Please reconsider your Popeye’s plan. My pharmacy client’s roommate from college is a general practice MD. He saw my eye patch a couple of months ago & asked what happened. I told him yrs of undiagnosed CD.

      This MD recounted a recent episode of his CD patient for many yrs who unwittingly ate 1 Popeye’s biscuit one day with her husband. She knew better, she just had a brain fart & messed up. Two weeks later after spending a good long stint in ICU and her husband planning her funeral, the doctor confirmed that since she had been GF so long that the one biscuit was such a gluten overload for her system that her body reacted with anaphylactic shock, which thankfully did not kill her.

      Be sure to reconfirm your health insurance premiums are paid up and your burial plot is paid before you go on your planned binge just in case. Sorry to be negative but that’s the truth.

      Reply
      1. 23.1.1

        KV

        1. I’m probably going to keep planning this for many years to come and never actually do it. Don’t destroy my dreams, Hap! :)

        2. I have never heard of a Celiac having an anaphylactic response to gluten. I don’t believe that happens. It would have to happen in places other than one 2nd hand anecdote for me to take a risk of dying from a single glutening seriously. I’m not going to shop burial plots every time some jerkface pulls croutons off my salad in the kitchen without getting me a new salad. I’m going to die from something one day, and while it may be tangentially related to the fact that I have Celiac, it’s not going to come from one biscuit unless I choke on it! :)

        I was “mostly” joking about my cheat day. “Mostly.”

        Reply
        1. 23.1.1.1

          Lima Bean

          I agree. If that were the case, we would all die or be hospitalized from an accidental glutening. Unfortunately, no matter how careful we are, we will get glutened once or twice in our lives. Also, anaphylactic shock is an allergy reaction. Celiac is not an allergy.

          Sometimes people like to exaggerate to scare people.

          Honestly, if someone wants to “cheat” once and see what happens, it shouldn’t really cause too much damage. Its only if this cheat leads to more cheating – the repeated exposures to gluten are what add up to damage. Not saying a person might not feel awful with 1 exposure, just saying its not lasting damage.

          Reply
        2. 23.1.1.2

          Hap

          KV

          1. Understood – don’t want to stand in way of your dreams, in jest or not, which reminds me of
          “Deep into that darkness peering, long I stood there, wondering, fearing, doubting, dreaming dreams no mortal ever dared to dream before.”
          — Edgar Allan Poe

          Which adequately describes my dreams of ever wanting to eat caramel cake again at one of my favorite restaurants.

          2. I know this Celiac Community is so very precise, which is great, so I should not have used less than precise language. The MD actually said, “for lack of a better explanation, her body responded LIKE an anaphylactic shock because the Popeye’s biscuit contained more gluten in one dose than her body had processed in years.” Sorry I used “with” instead of “like”. I agree with everyone’s “allergy” comments. Regardless, this lady will probably never eat a Popeye’s biscuit again as long as she lives.

          3. The only reason I thought of this situation was KV’s dream involved Popeye’s, which was the same restaurant as the MD said caused this lady’s reaction. I’ve nothing against Popeye’s, of which I ate a lot before my Dx, and would regularly do so again if I could. They really are great biscuits.

          4. Lima, I’m certainly not trying to exaggerate to scare anyone & will provide Dr.’s & Patient’s Affidavits if requested and readers want to see to make their own health decisions. I agree that we would all be in hospital often if accidental glutenings caused such reactions. I only recounted what a MD personally told me regarding his patient’s personal reaction to eating a Popeye’s biscuit since that was KV’s dream.

          5. CD obviously involves a spectrum – on one end are people who don’t even know they have the disease & on the other end are people like Mom & I who almost died from ingesting gluten. Everyone must figure out where on the spectrum line they fall and calculate their own personal risks of gluten ingestion. My point with my comments today are, even if you think you know where you fall on the spectrum, it is not wise to play with fire and assume because there are no immediate apparent consequences for you from ingesting gluten that there are no long term consequences. I firmly believe for some people that gluten has exponential consequences. If I had only known during the last 22 yrs that eating gluten would cause me to be sitting here today unable to play golf and hoping I get all of my vision back and don’t go blind for the rest of my life, you can bet your last $, I would never have ingested a scrap of gluten for the rest of my life.

          My comments are not for everyone, but if my comments help even 1 person then I have helped repay the debt of gratitude I owe to Jennifer for speaking out about CD & GDude for his efforts & hard work for maintaining this website.

          Reply
        3. 23.1.1.3

          thetxlady

          Put me down as an example this kind of anaphylaxis is real!! Went to catering sampling & if I’d have had an epi pen in my posession would have used it. Was worried when they served me tofu as part of my “special just for you all gluten free meal” but didn’t think much of it till we got to dessert. They were so good & they said they’d even made a thumb sized portion of GF cookie dough special for me. Yep, fell for it & polished off each one. The cookie wasnt gluten free!!! Felt it burn down my throat & took 2 benedryl. Kept trying to pay attention to the meeting while my skin started to flush & burn while my throat started to close up brain went so foggy I kept having to ask people to repeat themselves. 8 more benedryl & a lot of water later people start noticing me changing colors. I ask about the cookie again & chef smiles “you didn’t actually think we made up a special batch for something that small did you?” WHAAAAAT?!?!
          After 12 benedryl I’m able to breathe properly bones are burning & have a long train ride home. I was in bed for 4 days unable to eat more than mashed potato & soup because an asshole chef I’m stuck with using thinks gluten free isn’t real. My throat was already half closed when the benedryl started working.

          Reply
          1. 23.1.1.3.1

            Thankful for Whole Foods

            Do NOT use that chef. Get platters from Costco, change your venue…. If it were me I would do anything NOT to use that chef. No one should treat people that way. out and out lying that makes someone sick is WRONG!

            Reply
    2. 23.2

      Betsy

      Well, yes. The LW’s question made me think about people who write to advice columnists asking for permission to cheat on a relationship (like, why would you even ask?). People are adults and can do what they want to, but if so, they certainly don’t need someone else to sanction their decision. But I guess that’s why some people struggle with addictions to gambling, food, alcohol, drugs, work, etc.

      On a side note, I found that the time and diligence required for a GF DF diet served me quite well last year when I particiapted in the National Diabetes Association diabetes prevention program (awesome program, BTW) b/c of family risk factors and a slightly elevated BMI. I lost 25 pounds counting fat grams alone, and have no issues keeping it off, because I have become so used to THINKING about what I’m putting in my mouth. And of course I don’t want to get diabetes either.

      I, too, wondered about “flour frosting”, but did a search, and apparently there is such a thing (if people can imagine something, cooks will make it; ergo, deep-fried Twinkies).

      My local GF bakery has such yummy goodies that people on a regular diet love their offerings. We should all be so lucky. Trader Joe’s GF brownie mix is very good, easy, and travels well once made.

      Reply
  24. 24

    Kara

    I kinda feel bad for the guy or gal who wrote the email, because he/she probably didn’t expect to get pounded by the entire celiac community on this blog.

    Nevertheless, I do agree that cheating is in no way acceptable. I think we all (at least I hope we all) know that eating gluten damages us, but I think many of us forget that our decisions do affect the perception of the rest of the world regarding celiac disease and its seriousness. We need to watch out for one another and hold each other up.

    Reply
  25. 25

    IrishHeart

    Never heard of a wedding cake with “flour in the frosting” and whenever I see another “is it okay if I cheat?” question posted on a forum or blog where celiacs try to help others, my first thought is always (something unprintable) followed by “this person is just messing with us”. Often, it is done to get people riled up.

    Let’s just say it is “real” for the sake of discussion. :)
    Telling someone who only gets minimal symptoms that they could develop lymphoma or other AI diseases or have a miscarriage by continual cheating is just a waste of time. This person does not care about that!

    Unless you have actually had multiple miscarriages or developed cancer or whatever other collateral damage comes with years of undiagnosed celiac, you never, ever think it’s going to happen to you! And all the “scare tactics” in the world are useless. When you are young, you think you are bullet proof.

    So, instead of everyone working themselves up over this, maybe you should all just say “Go ahead. It’s your life. You already know why you should not ingest gluten, so do what you want. .”… and let it go.

    I know I am.

    Reply
    1. 25.1

      CD

      Marie Antoinette just came to mind as I was reading your AWESOME post IH. “Let them eat cake.”

      Reply
    2. 25.2

      Connie

      >Never heard of a wedding cake with “flour in the frosting”

      Oh yeah, its a thing now. Aldi, which has an awesome gluten free line, has frosting that plainly lists wheat flour in it. So I’ve seen it with my own two eyes. I started ranting about it at a knit night and one of the gals turned out to be a baker who said its a cheap way to enhance mouth feel, and that a good baker wouldn’t use it.

      Sounds like the maker of this cake was more concerned with how it looked than anything else.

      Reply
      1. 25.2.1

        IrishHeart

        Heya Connie & CD! :) always great to “see you”.

        I’ve been making my own from-scratch cake frostings and ganache (long before DX) and I know these “flour” recipes exist, but honestly, no baker is going to use it on a wedding cake. I even asked my friend (a chef) who caters weddings down here. They use fondant to preserve the cake’s glorious facade for days. No flour involved.

        Even if s/he did eat it, (and again, we are all assuming this question is legit) I can’t see the point of worrying about the “flour in the frosting”..!! for the love of mike…the piece of cake will cause some pretty good damage, whether the letter writer believes it or not.

        We’re all talking about the small issue when we should be looking at the big picture.

        All I can think of is that scene from Butch Cassidy and the Sundance Kid when Butch is trying to convince Sundance to jump off the cliff into the water…and SD is only concerned with the fact that:
        .
        Sundance: “I can’t swim.”
        Butch: “Are you crazy? the fall will probably kill ya!”

        https://www.youtube.com/watch?v=1IbStIb9XXw

        Reply
    3. 25.3

      Hap

      CD

      Good point – we all know how things worked out for Marie and permitting cake eating.

      I also agree with you & Irish, we can warn until we’ve exhausted ourselves, but everyone still has to make their own decisions. We’ve fulfilled our responsibilities by issuing the warnings and what non believers do with those warnings is their own business.

      Reply
  26. 26

    Vicky

    First, I would like to empathize with you, as everybody was eating my baby nephew’s yummy-looking (and smelling) baptism cake, I was munching on carrot sticks. Sure, my waistline is probably grateful but I sure wish I could have been part of the cake-eating crew. Nobody questioned my choice or tried to serve me a slice, bless their souls.

    However, how do you know the state of your intestines? If you react only slightly, to me it sounds like you accidentally cheat on a regular basis. Hear me out: I’m undiagnosed but I have ditched gluten almost 5 months ago (already?!) and I really do not cheat unless it’s by accident. At first, eating something contaminated made me sleep for a week. It guess it could be considered “slight”. Now, after cleaning out my body of all gluten, I get wonderful bathtoom issues, which I’ve never had in my life. I believe I react more strongly because I am now clean.

    You may wish to rethink the strictness of your diet. Not reacting much could mean you get poisoned on a regular basis. The strenght of your physical reactions are in no way indicative of the stuff going on inside. Ever heard of “silent celiacs”? They have no real outside symptom but their intestines are a wreck like any of us.

    Please, for your health, and please for the credibility of your fellow celiacs, bring a gluten free cupcake and even a few extra if someone wants a taste! Sometimes people relate more to you after they eat your food. My family (mom, dad, brother and sister-in-law) all eat my gluten-free cooking and baking, and I believe it’s helped them realize that they can make yummy things I can eat while not sacrificing their tastebuds’ pleasure.

    Please do not cheat. The reactions are not the same from one time to the other, but your intestines always suffer.

    Reply
  27. 27

    anna

    Yes folks, flour frosting is a thing, but you may not have heard of it because it’s more of an archaic recipe, before the days of store bought tubs and cream cheese frosting. Think old-school church cookbook days.

    With regard to cheating, please don’t because celiac is such a credibility battle already. I have a family member who claims to be “gluten sensitive” but then will do stuff like eat cheesecake but leave the crust. Or some old ladies from my church who are in ill health in general, who also claim to be “gluten sensitive” until the cake gets served…

    I’ve gotten away with being more picky by claiming to be a “full-blown celiac” (not my words) but eating + other people + social gatherings is just a recipe for massive awkwardness or breaking out in DH for days.

    Slightly off topic: Say, theoretically, you went to someone’s house for Thanksgiving, say, and the person forgot and put flour in the turkey bag. You ate it unaware, and got sick afterward. Should you tell the person you got sick? If you do, you will look rude. If you don’t, they will think that a little bit won’t hurt you. (note: this didn’t actually happen… yet).

    Reply
    1. 27.1

      KV

      Turkey bag???

      Reply
      1. 27.1.1

        Thankful for Whole Foods

        KV, many people put flour inside the turkey roasting bag.
        This site gives a bit of info about what it is:
        http://www.reynoldskitchens.com/products/oven-bags/turkey-oven-bags/

        Reply
  28. 28

    Tina

    Believe it or not, my gastroenterologist actually told me that this was okay. I had a follow up endoscopy one year after diagnosis, and to my relief the results showed complete healing. My doctor was thrilled to give me the news. He then went on to say that now that I am healed, if I would like to treat myself on occasion, like on my birthday, it would be okay. His logic was that it was apparent that I knew how to follow a gluten free diet, that even if there was on rare occasions some inflammation, I would heal up relatively quickly.
    Sadly, I’m still with him—but I have never followed his advice! I don’t trust doctors anymore

    Reply
  29. 29

    Jennifer

    I have to admit that when I first went gluten free, I was a bit lackadaisical about possible cross-contamination. My symptoms were mild, so it didnt’ matter that much, right? My sister was better about watching what I ate than I was! I avoided gluten, but not strictly enough. Then a couple of years ago just before Christmas, I (unknowingly) ate three pieces of a casserole that had crescent rolls on the bottom. An hour later, I was throwing up all over the parking lot at the grocery store. After about 3 years gluten free, my body didn’t know how to handle the poison anymore! After three more bouts of losing everything I had eaten that day (and probably for the two or three before that!), I managed to make it home and holed up there for the rest of the day. The last round of expelling poison was over about 2.30 pm and I didn’t dare eat anything until almost 9 when I was finally so hungry I couldn’t stand it anymore. The worst part of the whole thing was that I was heaving so violently, I couldn’t breathe and ended up aspirating some of the bile. It was one of the worst Christmases I can remember, since I was sick with bronchitis and laryngitis for three weeks after that little incident! Any time I’m tempted to cheat, I just remind myself that it is definitely NOT worth that again! Sounds like the person above is in serious need of a support group. It’s so much easier not to be tempted when you know you’re not alone. :)

    Reply
  30. 30

    Terry J. Wood

    Nothing tastes as good as being healthy feels.

    Why would you ever “cheat” on the diet that has given you your life back? It’s a godsend. It’s a miracle. People with other diseases would kill for a “cure” that is this simple. We are so lucky.

    But if you want to have your cake and eat it too, surely you have heard of Jules Shepard and her wonderful gluten free flour. Honestly, get some of her flour and bake yourself a gluten free cake. Jules will give you the recipe.

    Jules has entered her creations into baking contests and kicked the butts of bakers who used wheat flour. That’s right. She’s gone toe to toe with “real” flour and come out on top. Don’t assume that just because something is made with “real” flour that it tastes better. That’s simply not true. Done correctly, gluten free can be every bit as good. We’re not second class any more!

    Reply
  31. 31

    Claudia

    Oh hell no you shouldn’t eat gluten. I avoid that crap like the plague. Since I found out I have Celiac disease, I have not frequented a fast food place except one time to get a soda. It might taste good going down, but you will suffer later. Maybe you will get sick and maybe you won’t. But whats going inside the gut at a microscopic level is a different thing. If you want cancer, osteoporosis, severe anemia, and never feeling well, then its your rodeo. Don’t do it. Bring your own treat and toast the happy couple with some champagne.

    Reply
  32. 32

    Night Diamond

    Honestly, cheating is a very bad idea, you may not feel this time so bad or next, but there will be a time that you will regret what ever it was you may have eaten. I do not wish to sound preachy, that is the last thing I want but after a month nod half of being GF, I can honestly say hades no to that mess.
    When after months , and years asking omg am I crazy, a hypochondriac , or in pain, I finally got my answer. Trust me I felt very ill and freaked out pre diagnosis, still freaked out post diagnosis due to the list of what could go wrong if I didn’t stop eating the way I did. It took one word, a painful , sad and utterly terrifying word “lymphoma”. Things became very real and personal., as I lost a very close immediate family member to that illness. To this day she is missed badly, I honestly believe it was undiagnosed celiacs. I’m not trying to guilt or scare, as I am not a perfect person. I’m still trying to give up vices , however life, and family is prettier than anything I know, and more cherished than a diamond from Tiffany’s or Cartier, trust me they are just things like that cake pretty but just being there that day means far more than eating something that isn’t good for you. Going gf and staying that way is a life commitment to my family and hubby. Don’t do it , love life and the moment far more than that. Again sorry for long winded ness , emotionalism and if I seemed preachy .

    Reply
    1. 32.1

      Night Diamond

      Addendum, I myself do not have the L word as I call it, just it scared me. Just wanted to clarify that

      Reply
  33. 33

    Scott T

    ” You understand you have an autoimmune disease, correct? This is not an allergy.”

    I think I get what you are going for here, but to me, thinking of it like an allergy would be exactly the way to think of it. If my son comes in to contact with peanuts he will possibly die. He is allergic. Come into contact with non gluten free food damages your insides and hurts your overall health. Cheating is not an option.

    It isn’t about ciliac, but this is a great comic that illustrates another way to look at restrictive diets: http://kateordie.tumblr.com/post/57576692783/it-isnt-the-choice-for-everyone-but-its-the

    Reply
  34. 34

    Kathy

    Been thinking about this all day. :)
    http://youtu.be/BNjcuZ-LiSY

    Reply
    1. 34.1

      IrishHeart

      lmao :)

      Thanks for that, Kathy…I love Eddie Izzard.

      Reply
  35. 35

    Nikki

    I think GD could have answered the question just with that Michael from The Office clip he included. That’s fricking hilarious!

    Reply
  36. 36

    Teresa W.

    Has anyone else had a blood test diagnoses that screams celiac and then the biopsy show it mildly like 1 and 1/2 points out of 4 points. This is the way my grandaughters doctor explained it to us and she has no pains when she eats gluten and has never had weight loss or diareaha with it.

    Reply
    1. 36.1

      Terry J. Wood

      I have a friend who just turned 50 and had a routine colonoscopy. It revealed that she had some flattening of the villi. A blood test came back positive for celiac disease. The hard part for her is that she feels fine. It would be much easier to follow a GF diet if she felt awful, but she doesn’t.

      There are “silent” celiacs out there.

      Reply
      1. 36.1.1

        IrishHeart

        That’s very odd.
        Not sure how a colonoscopy revealed flattened villi.

        The large intestine does not have villi. The small intestine has villi where absorption occurs. Celiac is diagnosed by small intestinal biopsy via endoscopy. These are two very different procedures.
        From two different “ends” . :)

        Flattened villi are not visible to the naked eye, which is why a biopsy is performed.

        If your friend was diagnosed with celiac based on a routine colonoscopy and not an endoscopy, but the celiac panel was “positive”, I’d suggest she go for a second opinion. I know I would.

        She could have elevated tTg from some other medical condition (It can be falsely elevated in people who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis.) or her GI doctor took a huge gamble for some bizarre reason and went all the way up to her small bowel during the colonoscopy ?? and then, somehow decided based on no clinical symptoms whatsoever ….to biopsy that particular area ??

        Some people have a hell of a time getting properly diagnosed and they follow the diagnostic protocol —and hers somehow occurred during the wrong procedure, in the absence of symptoms, and the GI doc supposedly found the exact part of the small intestine with damaged villi via colonoscopy? !!

        This is a huge long shot and a medical fluke, IMHO and should be written up in a medical journal.

        And she should play the lottery because she is very…. “lucky”. (?)

        Reply
        1. 36.1.1.1

          Hap

          Irish

          As usual, yours was a great explanatory reply above for Terry. I posted a PDF link for Kari and Juniper above, which I found early in my research and which, like Susan’s mirror reminder, stated all of the proof I personally needed to remain strictly GF for life. I can’t read all of that fine print right now so please correct/update my comments with more recent research if necessary for the sake of accuracy since Kari was interested for her family.

          I remembered our prior baklava discussion when replying to KV above – I would still choose your GrandMother’s baklava over anything at Popeyes if I ever decide to jump off the GF cliff – not likely.

          Thanks again for your advocacy, all of your hard work & the insight you’ve provided for me in fighting this disease. I hope most people have enough common sense to continue listening to you. I greatly appreciate GDude & this virtual reality home which has educated, encouraged, humored & gotten me through the last 4 sometimes dark months. I originally came here in February to ask GDude to properly thank Jen E for me & I kept coming back because of the wonderful people in this close knit Community. I don’t have anything else to say about CD from our end of the CD spectrum. As you stated above, interested people will either listen or not; however, the whole process was very therapeutic for me to understand what I’m up against in fighting CD. I hope those of us who should eat strictly GF will have the will power to do so and experience the same great support from this Community which I experienced.

          After a couple of prior self imposed exiles from GDude Land for my eyesight, although improving, another preemptive exile for both eyes this time is now required.

          Thanks again to the awesome Dude, Irish and everyone else in this great Community! I learned a lot about social media that I never had time to learn before. Our family will keep on remembering Mrs Dude in her quest for good health. I just didn’t want to leave without saying “Thanks” and so long until later when hopefully we “see” each other again!

          Hap

          Reply
          1. 36.1.1.1.1

            IrishHeart

            Hap

            Take care of your eyes, your body and your well being.

            We’ll still be here when you get back.

            I send best healing wishes!

            IH

            Reply
          2. 36.1.1.1.2

            Gluten Dude

            Hang in there Hap. We’re not going anywhere. Do what you need to do for YOU. I will toast your health the next time I raise a Tito’s.

            Reply
  37. 37

    Lima Bean

    LMAO! You spammers need to get a better program for translating from your language to English!

    Reply
    1. 37.1

      Gluten Dude

      As the blog grows in popularity, it’s become much more of a target for spammers. Trying a variety of approaches to combat. Such a pain.

      Reply
  38. 38

    Becky

    Here’s the thing: there is delicious gluten-free cake. At my wedding, we had a big white wedding cake that was not gluten-free and a smaller, flourless chocolate cake that was gluten-free. As the bride, I ate ONLY the gluten-free cake. It was delicious! And guess what, more people wanted the chocolate than the regular wedding cake–we had none left It never occurred to me that I would eat anything but gluten-free cake, even at my own wedding–it is just not worth the risk. My birthday was last week, and everyone at the party ate gluten-free cake and thoroughly enjoyed it (I recommend King Arthur mixes if you don’t want to make one from scratch). We also have several dedicated gluten-free bakeries in my area that make great cakes and cupcakes. Treat yourself and your villi to one of those!

    Reply
  39. 39

    GFHardy

    When it comes to cheating on the gluten free diet, there is never ‘one last time’

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2016 Gluten Dude: The Naked Truth About Living Gluten Free | Website by Altera Web (alteraweb.com) | Legal Stuff