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92 Comments

  1. 1

    Cynthia L.

    yet another example of why we celiacs are not taken seriously. deep breath and baby steps.lol

    Reply
    1. 1.1

      Gluten Dude

      Finding my happy place :)

      Reply
  2. 2

    Christa @ Edible Balance

    We’ve all been where she’s been, at least a good portion of us have.

    I was diagnosed over 12 years ago. There was NOTHING available, no one knew what gluten free was, let alone celiac disease. I longed for the food I couldn’t have, so I did cheat on pizza, beer, quesadillas. I eventually saw that light, I knew I couldn’t do it anymore, so I started focusing on whole foods and getting rid of the processed gluten free foods as well.

    But guess what? No one was there to talk to me about it. No one that understood what we go through. I wish there was. I am now that advocate wherever/whenever I can and have the opportunity to do so.

    Kudos to you Dude, for not food shaming her. I think we have enough of that going around. More compassion for each other is desperately needed these days.

    Reply
    1. 2.1

      Gluten Dude

      It’s a process that varies for all of us. I’m glad you got where you need to be.

      Reply
      1. 2.1.1

        stew

        How the heck can one ” cheat” ??? I would throw it up as soon as it leaves my stomach and be dry heaving for the next 5 -6 hours and THEN the fun diarhea starts. How the hell can a celiac cheat?
        just sayin

        Reply
        1. 2.1.1.1

          John

          The thing is, not every celiac has acute digestive symptoms from ingesting gluten. I’ve mentioned elsewhere in the comments on this very page that I’m one of these “silent celiacs”. Pre-DX, for years I used to eat two biscuits of Weetabix for breakfast almost every morning and often a sandwich for lunch or sometimes leftover pasta from last night’s dinner. Didn’t notice one lick of stomach pain or similar discomfort from any of this. When I got the DX, I didn’t even know that such symptoms were typical, so in retrospect it was a shock.

          I haven’t ever cheated myself, but when you’re “silent” and the only damage is internal and you don’t immediately pick up on it, then I can understand, even if I don’t condone, how it might be tempting to cheat, especially if your old eating habits involved eating lots of non-GF foods. It’s like smoking. You don’t pay for all that internal damage until maybe 20-30 years later when the doctor says you’ve got emphysema or lung cancer.

          Reply
  3. 3

    MJ

    Christa, uh no, we haven’t all been there, and not so sure about a good portion of us either. I’ve never once cheated. I have enough problems trying to avoid accidental reactions (I’m one of those super sensitive types). I can’t even begin to imagine what would happen if I ate a donut.

    Reply
    1. 3.1

      Sarah

      ok, deep breath, pet peeve time.
      ALL people with celiac are super sensitive. All of us. Even if there are no outward symptoms damage is happening inside. It’s a defining feature of our super fun disease. It drives me nuts when people ask me how sensitive I am; like if I don’t have immediate symptoms it’s ok to not be as careful. It’s not ok.

      I just had to get that out.
      Thanks for letting me vent.

      Reply
      1. 3.1.1

        MJ

        Not sure what you mean. Do you react to eggs if the chickens are fed wheat? Most celiacs don’t, I do. Get a full DH rash and majorly sick. I’m ok with pasture fed eggs. The same is true for chicken. And grain-based gluten free foods like Namaste, even if they’re processed in a gluten-free facility. After years of trial and error, I estimate I react to between 1-3 ppm. Most celiacs don’t. Super sensitivity is a real condition, Fasano has done a study on it and discusses it in his book. I follow his super-sensitive diet of only eating plain rice, fresh fruit, veggies and meat. Otherwise I stay sick. I agree that the term “super-sensitive” gets thrown around far too much, and that all celiacs are very sensitive. But there are real, measurable degrees of difference.

        Reply
        1. 3.1.1.1

          Sarah

          Not trying to belittle your symptoms or call you out on anything. I know there are many different manifestations of this disease.

          I get asked by friends, relatives, servers… How sensitive are you? What happens when you eat wheat/ barley/rye containing foods? These questions are at the root of my peeve. It’s like asking ‘you can have a little, right?’

          Most of my symptoms are internal, still terrible but mostly invisible. Does that make it ok for me to cheat? Absolutely not.

          It has got to be hard for asymptomatic celiacs to stay on track.

          Reply
      2. 3.1.2

        Sarah

        Well said Sarah
        From a fellow celiac, and Sarah,
        I was just out last night and the waitress told me I could eat something out of their fryer, which they cook everything in, depending on how sensitive my reaction is. As you so clearly stated we all react differently, but the same internal damage is being made.

        Reply
        1. 3.1.2.1

          MJ

          This where the terminology fails us. From a layperson’s perspective, all celiacs (and NCGS) are super-sensitive. They have no comprehension what the term actually means within the celiac community. A restaurant has no business asking “how sensitive” we are, and Glutendude does a great advocating this. There is -no- celiac who should be eating fries out of shared fryer. Standard allergen-safe practices should be consistent across the board. True super-sensitives, like myself, don’t eat at any restaurants. It’s not an option.

          Reply
  4. 4

    Jess

    She is lucky that you took the time to talk to her about cheating.
    She may need to hear similar advice again and again, but it will, hopefully, eventually stick. We need to keep helping each other out and supporting each other through our gluten free lives–although none of us have chosen to have celiac disease (or NCGS) it connects us together from all over the world.
    Thank you for being a role model by speaking up and sharing your experience Dude!

    Reply
    1. 4.1

      Gluten Dude

      I actually emailed her this morning making sure my talk with her came from a good place and her response was thus:

      “I knew exactly where you were coming from and there was no remote offense taken. I appreciated it so no need to even explain!”

      Reply
  5. 5

    Shirley @ gfe & All Gluten-Free Desserts

    Well done, GD. That was a difficult situation for sure, but you’ve helped her, her family, and all the folks she’ll be speaking to in the future.

    Thanks, and thanks for sharing with us. We can make a difference with both individuals and groups, if we do it right.
    Shirley

    Reply
    1. 5.1

      Gluten Dude

      We have the power Shirley…

      Reply
  6. 6

    Tabitha

    What a great post. I’ve recently found out I am Celiac although I’m unlikely to ever have a DX as I won’t risk re-introuducing gluten. I am trying to be that voice I hope you don’t mind but here is my story and voice http://wp.me/p3V8TQ-z4

    Reply
    1. 6.1

      Gluten Dude

      Not at all…the more voices the better. Welcome to the community.

      Reply
    2. 6.2

      Mandy

      Tabitha, thank you for telling your story. I too experienced similar neurological symptoms for several years until a doctor suggested testing me for the celiac genes. I also carry two genes. My testing also led to my mother’s diagnosis as well. She had no symptoms or known as a “silent celiac”. Oh and I love your blog Gluten Dude!

      Reply
  7. 7

    Ken

    I just think of all the damage I did to myself for 43 years before I was diagnosed. A lot of it is still lingering. Continuing to willfully ingest gluten… she may as well bang her head repeatedly against a wall.
    I have mentioned my celiac co-worker who does the occasional Chinese take-out crapshoot. I said almost the same thing to him. I don’t get it. Maybe it was easier for me to go completely gf because I cook for myself and I had already been eating mostly fresh meats and veggies. The hardest thing became eating out.
    But people count on me. Cheating isn’t an option.

    Reply
  8. 8

    Connie

    Dude, I thank you for taking the positive approach. In sales and marketing we talk about the power of touch. Typically it takes three to six touches for someone to go from being interested in a product to being a customer. In this case, you just gave her a touch to remind her to get her act together and stop cheating. I know it doesn’t seem like much, but these touches add up. She’ll enjoy the doughnut now but when she’s suffering the effects, she’ll remember what you said.

    It’s these powerful, one on one conversations that help people, and they’re all positive. I was at a party three weeks ago and had another of these conversations, and by the end of it, the person had agreed to get tested for celiac, because she was experiencing a lot of the classic signs. I got an email from her yesterday explaining that her colonoscopy showed positive for celiac. Bingo!

    We have so much positive power as individuals. Celiacs are some of the most empathetic people I know. We need to use our power for good!

    Reply
    1. 8.1

      Gluten Dude

      Awesome Connie. You just may want to let the person know you can’t test for celiac via a colonoscopy.

      Reply
  9. 9

    Musicmidget

    I guess the varying degrees of reactions that we all have make a difference in our willingness to cheat. Maybe that and how sick and scared we were at the time we got diagnosed. A good cross-contamination hit will have me down for a couple weeks. If it was only a day or two, I might be more willing to risk it. But like Ken said, too many other people are counting on me. My kids and my husband shouldn’t have to be subjected to that because I just HAD to have a donut. Hopefully this woman will see the light and be a good example for her celiac daughter. Because if her daughter witnesses that behavior, she’ll think it’s okay to cheat too.

    Reply
  10. 10

    Jersey Girl

    GD-

    Great post. I don’t personally know many celiacs (except of course y’all on this kick ass blog) so I haven’t personally come across this. For some reason it angers me. And you know why? Because she just threw all the hard work and dedication that we have gone through. Further, she has two kids. what the hell?? Whose going to explain to them that mommy was too tempted by a donut and know she has some sort of cancer/impairment/disability & can’t take care of them like she should.
    I don’t cheat for myself, my ten year old daughter and the community. I am glad that I wasn’t there GD, I don’t know if I could have had the delicate hand that you used….

    grrrrrrrr.
    Jersey Girl
    _____________________________________________
    “Look, if you had one shot or one opportunity to seize everything you ever wanted in a moment, would you capture it, or just let it slip?”
    “Lose Yourself”.
    Eminem

    Reply
    1. 10.1

      Gluten Dude

      Looking back…I now wonder if I was too delicate. I just emailed her a link to this page hoping she gets the message even stronger.

      Reply
  11. 11

    Gloria @ glutenfreepoodlehome

    Two and three decades ago just about the only people being diagnosed with celiac were on their death bed. We were thrilled to live and feel well. I knew who died from celiac. I knew a woman who was diagnosed so late that she could never eat again and was fed with TPN through her artery for the rest of her short life. I really think people need to hear that! Now so many people are being diagnosed, which is a GOOD thing, but some were just a little sick, and don’t get very sick when they eat gluten. To the woman you spoke with or anyone like her: Do what I say, not what I do does not work with raising children. Set a shining example. If you smoke your child will be more likely to smoke even if you tell them not to. When she is a teenager she will eat gluten because you do.

    Reply
    1. 11.1

      Gluten Dude

      One of my favorite parenting quotes is “Children don’t do what parents say. They do what parents do.”

      Reply
  12. 12

    Terry J. Wood

    The other day a friend shared her recent diagnosis of celiac disease with me because she knew I’ve been eating gluten free for the past 9 years and needed some advice. She’s what I guess you’d call a “silent celiac”. She didn’t know she had the disease and only found out because of a routine colon cancer screening. (She just turned 50.) Her doctor put her on the diet right away.

    She’s having such a hard time with this because she doesn’t feel sick. It’s hard for her to see the incentive to eat gluten free. I did talk with her about the cancer risks and gave her some web sites to read. I told her to call me any time if she needs help. I also told her that there’s nothing we can’t find a substitute for. (I bake with Jules Shepard’s flour!)

    But I can see why people such as broadcaster Keith Olbermann say they cheat now and then. Without symptoms it’s really hard to give up those donuts. And it encourages others to do the same.

    In a way it made me glad that I’m not a celiac, but have non-celiac gluten sensitivity (NCGS). I get so sick within minutes of eating gluten. It’s a tremendous reinforcement to stay on the diet. There is no thought of cheating. The swift punishment bans any thought of that. No gluten containing food looks good to me. It’s a terrifying thought to even make a mistake.

    It sure beats counting on will power alone to stay the course!

    It’s good that you spoke with her, GD. She needed to hear from a fellow celiac that she needs to take care of herself — and that baby that’s on the way!

    Reply
    1. 12.1

      John

      As a silent celiac myself, I can speak (but only to an extent) to the challenges of being one (incidentally I was diagnosed from a failed hemoglobin test at what became an aborted donation trip to the blood donor clinic; it was traced back to celiac malabsorption).

      When one lacks immediate checks & balances (acute symptoms), I think how easily one adapts to the sudden, permanent shift of the GF life is related to one’s pre-DX lifestyle and how much gluten one was initially eating.

      In my case, I’m in my 40s and it’s been 14 months since my DX but I’ve never cheated even just once nor do I ever intend to. I say this neither as boast nor to condescend to cheating silent celiacs, but to underscore that I likely had a best-case silent celiac scenario re: staying GF.

      Pre-DX, my idea of dinner was typically a portion of meat (steak, pork chop, chicken breast, fish) with steamed vegetables or salad and a baked potato with sour cream & chives (or occasionally rice). Omelettes were (and still are) another favourite, with typical fixings: cheese, peppers, onions, mushrooms, ham (or sometimes salmon or oysters). GF stuff all around, there.

      Not having the greatest kitchen skills, I also never baked so I wasn’t much one for fancy desserts. Usually I’d just have some fresh fruit or yogurt with nuts & berries if I wanted something sweet to finish. Cakes, pies, cookies, etc… I ate these only as a guest in someone else’s home. Moreover, as I live alone, I’ve also not had to watch others under my roof enjoy foods I no longer eat.

      I also never indulged much in junk food. I already knew and cared enough about nutrition that (for example) fried, fat- and sugar-laden doughnuts were already a very sporadic part of my eating 15+ years pre-DX. For nearly a decade until 2006 I went to an annual weeklong conference where table after table of doughnuts were laid out daily, free for the taking, as many as you wanted. All that time, I never touched *one* (they nearly revoked my Canadian passport over this lol).

      Fast food, same thing. A rarity. I ate pizza a lot in my university days at parties and such but once that time and the partying ended, so did the pizza. It became a food I associated with the student lifestyle and never ate nearly as often afterward.

      Eating out had also become a rarity, not out of design, it just happened that way. I dined out once in my last year of pre-DX life, at the invite of a friend with a 2-for-1 coupon due to expire.

      Even my drinking habits had already shifted. Maybe I’m a bit lazy but I’d grown tired of lugging a burdensome case of beer to every get-together and decided to travel lighter with one or two bottles of wine or spirits.

      In short, much of my lifestyle already happened to be either GF or conducive to the change. I was nutrition-conscious and already reading food labels to learn what I was eating.

      This was an advantageous starting point to embark on a permanent, completely GF lifestyle (but don’t get me wrong, like anyone else I’d still prefer the freedom of non-GF living). Almost all the factors of how I would cope with this new lifestyle swung my way, a happenstance for which I consider myself fortunate.

      But I recognise that not every celiac, silent or not, will be this advantaged to start their GF journey. Some people like to frequent eateries and indulge in pizza or fast food every so often. Some folks really like that doughnut with their coffee break. Some share their home with others who may not truly get what a huge change this is. Some people enjoy fancy, flour-based desserts and have a hard time letting go. Some folks have never before bothered and aren’t used to poring over food labels. And others really prefer beer over other types of drink but might live in an area with limited/non-existent GF beer options. For these people I totally understand that the adjustment will be harder than mine.

      So, yes, I take a very dim view toward others who knowingly cheat, as it makes things harder for the rest of us in the bigger picture. But based on my own experience, about as free from hardship as one could dare to dream, somehow I don’t feel fully entitled to openly confront a GF cheater, especially if I don’t know the person well — even though perhaps I should, from a broader viewpoint.

      Reply
  13. 13

    Shannon

    I really really just do not understand it. Why do some celiacs eat gluten and why do some nonceliacs eat gluten free? It just boggles my mind. A co-worker just told me that she tried a gfree bagel and that she loves them..(great!) and then she told her sister about them and she loves them…(great!) and that if I can’t find any at the store anymore it’s because they bought them all. Cue the uproarious fit of laughter. Wonderful. I also have a headache. Can you please buy all the tylenol off the shelves too please?

    Reply
  14. 14

    Melissa

    You made a good point with her. I would also say, though, that when it comes to some public it may be just as strong for them to know that celiac’s surround them AND they are constantly tempted to cheat because good options aren’t as available to them. It may increase an underground advocacy for celiac’s if she had just continued with ‘even though I know cheating increases my chances for an earlier death and other medical problems’. Then, immediately, people are on the lookout for safe food choices for all.

    Reply
  15. 15

    thetxlady

    Big day of the convention I’ve worked on for a year is screaming up & last night again dealt with the GF giggles “let’s get some gluten & sprinkle it on everything” even after the speaker chair told me one of our influential speakers is gluten intolerent & “a real gassy miserable a-hole after hanging out drinking with them”. I asked him to relay I have celiac so “I got this” (while passing around samples of flavored okimomo nuts GF & cherry vanilla is damn tasty) & to just email any other special needs so can prepare. & then there it was “oh we should get a big bowl of gluten & sprinkle it on everything” (speaker chair takes the GF packets & rubs them all over a left over pizza crust (GROSS)) I pointedly ask over the giggles which one of the gluten seeding project is taking my job while I’m recovering in the hospital? (Shock) point at one …ok so you get to speak on joe’s topic when he gets sick. Not funny got it? Silence.
    I then return to conversation with chair assuring that yes there will be several GF products in the baskets because that’s the stuff I can personally taste…laughs all around.

    Cheating & gluten bullying just piss me off. Woman with the ability to have children & 1 with celiac already stuffing her unborn with gluten in my world would have been worthy of a child abuse report. That kid didn’t ask to be poisoned any more than the baby of an addict or alcoholic!! We all know the damage she’s causing herself impacts that baby. With the number of celiacs that can’t have kids, I would have gone full bitch & asked how long she had been poisoning her children?

    Reply
    1. 15.1
  16. 16

    Mike Irwin

    Hey Dude and everyone else,
    I was in europe in january this year and while german and other languages isn’t a problem for me I wanted to have a fling and enjoy myself. I know better and paid dearly for it losing 6 lbs in 5 days.
    It was the first time since my diagnosis in 2009 that I cheated and the last.
    Fast forward to yesterday a woman was getting an order of poutine(fries with cheese curds and gravy) and tells me she has “a wheat allergy” I asked is it worth what the food does to your body? She said no but she does it anyway cause she doesn’t want to go GF

    Reply
  17. 17

    Stephanie

    I am SOOOOOOO surprised you didn’t stand up right in the middle of that orientation and call her out. But your approach was much more tactful and probably much smarter when you’re dealing with a pregnant woman – She probably would have burst into tears and you would have looked like the bad guy instead of being the “Celiac Super Hero” that we know you are. :)

    Reply
    1. 17.1

      Gluten Dude

      I need a cape and a pair of tights ;)

      Reply
  18. 18

    Jamie

    Pregnant and eating gluten?? I’m currently pregnant and absolutely TERRIFIED of what any amount of gluten could do to my developing baby. I have never cheated on this diet and although I’m craving some gluten filled foods like mad, I would never risk my health which in turn would also effect the baby. *smh*

    Reply
  19. 19

    Mary

    As someone with a rather quiet voice, with admiration and respect for those with the stronger voices, thank you for this GD:

    “There are a few strong voices in our community and that is awesome. But they don’t have the power of a million smaller voices.”

    In my smaller quiet way I know I have helped or encouraged a few others I’ve occasionally come into contact with. :)

    Reply
  20. 20

    dee

    You definitely have more restraint than I do. I would have said something more like, “how’s that poison you are feeding yourself … while you are pregnant?” But that’s because I am one of the ones who lived with Celiac symptoms since childhood and didn’t get diagnosed until I was 48 and very close to dying. Lots of irreversible damage done to this now 61 year old body. I never fail to inform anyone who has Celiac and cheats because they think, “oh a little gluten won’t hurt” that they are playing with fire by doing it. It does kind of upset me that this woman said what she did on a college campus, a place of learning. Perhaps she just doesn’t know that Celiac can be deadly, even to those of us who do everything we can possibly do to be 100% gluten free. 20 ppm is actually not gluten free. ANY gluten can eventually do deadly damage to a Celiac’s body. That’s the difference between having Celiac and being gluten intolerant/sensitive.

    Reply
    1. 20.1

      Mary

      Well Dee, it looks like I’m not the only one. In and out of GI offices from 6 yrs old on, how on earth it was missed (along w/ another lower GI congenital condition that very nearly took my life 2 and a half years ago) is beyond me and often infuriating. I have some irreversible damage as well. I do not understand people who cheat. At. All. Perhaps it’s because I’ve never been asymptomatic and suffered for decades being mis-diagnosed over and over. Hindsight being what it is, I now know that many other health problems I had were definitely related to gluten. That really makes me both angry and sad. The ones that cheat…they’re doing all of us a severe disservice.
      I may be more quiet and laid back by myself but as a mama lion…if this had happened when my kids were going to college, I never would have had the restraint the Dude did. Then again I’m pretty sure the woman would never really ‘heard’ me. I doubt I would have had any impact on her life or choices because of that. I learned some restraint when my passions get the better of me and now…no need to ever defend my children who are adults. They do a much better job than I could ever do advocating for themselves! Dude, #nevertoolatetolearn #teachanolddognewtricks

      Reply
  21. 21

    CD

    Oh my. I was never in the position of “cheating is an option”. Once diagnosed Celiac and went gluten free, that was it. But then again, the symptoms were completely unbearable and I was on my deathbed from a lifetime of gluten consumption. I suppose I understand why someone would feel they can cheat if their symptoms never escalated to the point of being bedridden. I also hate these products like “gluten cutter” for the same reason. They really should be held accountable for marketing something this dangerous. I hope this woman will do her homework and realize the risk she’s not only putting herself in, but her unborn child. So sad. This is another reason doctors need to educate their patients better when they give people this diagnosis rather than just sending them out the door.

    Reply
  22. 22

    dee

    Wanted to also say we have to inform doctors, as well, because they are a huge source of misinformation. A rheumatologist once told me, “oh please, a little bit of gluten won’t hurt you” when I asked about whether or not a medication was gluten free.

    Reply
  23. 23

    Georgette

    Great job, dude. Seriously. I’m only a little over a year, but it’s a pain in the booty..I have had reactions to things that I believed were g-free and it was, well…a pain in the booty.
    I am happy that you said something to her. We need to educate as many people as is possible to do. That makes me crazy that her unborn child is exposed to that. My word.

    Reply
  24. 24

    IrishHeart

    I was deathly ill and incapacitated upon diagnosis and it has never once entered my mind to cheat. People who cheat do it because they don’t get “that sick”. And they cheat often.

    Trust me on this one: this woman will ALWAYS cheat.
    Why do I say that? Because if she is unwilling to take care of her body with a developing child inside her, she doesn’t really care what ingesting gluten will do to her. And this makes me angry and sad for her children.

    As someone who suffered multiple miscarriages and could never carry to term (because back then, I did not know I had celiac)
    I may have been unable to speak calmly to this woman.
    I may not have been motivated to speak kindly to her as the vocal celiac advocate I am, but rather by sheer anger at her reckless behavior.
    and I may have slapped that donut right out of her hand.
    And I probably would have told her bluntly to never, ever again tell a crowd of people that she cheats with celiac disease.

    You know I’m all about the “go ahead and cheat if you want –it’s your life”–but this is not just about her—it’s her unborn child and her little one who sees her cheating and she’s setting a lousy example. It’s not just “one donut”..she’s doing it all the time –which means constant inflammation and villous blunting and that is affecting the nutrients she–and the baby–are receiving.

    Yeah, I’m being judgy on this one. Tough. It’s a baby involved and it’s her damn job to protect it at all costs.

    Reply
    1. 24.1

      Kathryn Joy

      Yep, I’m with Irish on this one…

      Reply
    2. 24.2

      Mary

      Dear IH, I know your story with trying to conceive and carry to term. My heart aches for you and others who have experienced the same. I don’t know how I was so blessed to be able to have two myself especially being mis-diagnosed since I was a child. Though I went into premature labor with my second and it was a very scary time, I got one of the best Maternal Fetal Medicine OB’s in the city I lived in at the time and he saved both mine and my child’s life! It seems this woman has no idea what she’s doing, knowing she has Celiac… one child that already does and cheating??? Not to mention her child in utero and to have been so irresponsible in saying what she did…I won’t even go there except to say I probably would have read her the riot act if my daughter was attending that school if I had known I had Celiac at the time and what I know now. Within a couple of years, among many other things, I started having increasingly severe female troubles. Multiple procedures, multiple surgeries. Pretty awful to say the least. Fast forward a decade from the birth of my second child, my quiet steadfastness in never surrendering, never giving up, I finally had no choice but to have a hysterectomy….I’m am forever mindful every and each day how lucky I was and am. My first has NCGS…because she was already on a gluten-free diet because of being so sick and unwilling, which I totally get… to go back to eating gluten to get a positive DX. She already has developed a dairy allergy on top of that. My son is asymptomatic, has no noticeable problems but I’d love to know if he’s carrying the gene. I don’t know the facts on genetic testing and it seems that there’s a lot of controversy out there on that. So many are not so lucky to even be able to conceive or carry to term and this woman has to come to her senses and take responsibility for what others take for granted. She’s playing with fire. I know this is long-winded but yep, it’s the mama lion in me and the compassion I have for those who haven’t been able to have a child.

      Reply
      1. 24.2.1

        IrishHeart

        Hi Mary,
        yes, I also went on to develop major complications that resulted in an early complete hysterectomy. I spent 10 years in that pain and misery and yes, I do believe it was all complicated by unDxed celiac–as does my GYN, the reproductive endocrinologist I saw (who was the GYN’s husband) and my GI celiac doc. They all feel bad there was no concept back in the 90’s that celiac could cause those problems so, of course I was never tested for it. They just kept testing hormone levels and the thyroid, and doing invasive testing of all sorts. I left no stone unturned trying to have a baby, but none of it worked because of course, the underlying cause was not discovered until much later.

        Anyway, enough about me. That’s all in the past and there’s little to be gained from constantly looking in the rear view mirror–except to be able to try and enlighten other women to the devastating consequences of untreated celiac.

        And despite what some people believe, the genetic test is reliable–if done through a reputable lab like prometheus. Have your doctor order it for your child. Simple blood test.

        http://www.uchospitals.edu/pdf/uch_007936.pdf

        Reply
        1. 24.2.1.1

          Mary

          Hi Irish,
          Thank you for the link! When I hear it from you, I know I can count of it. The University of Chicago Celiac Disease Center is something you turned me onto a while back with a link in a another post. I hadn’t thought to check there. Concern and emotions sometimes cloud my thinking.
          I will pass the info on to my daughter, so she can get a real picture instead of the NCGS from the blood work she did have, coming back negative for Celiac. I’m thinking of course it did because she had been gluten free for some time. I will pass it along to my son as well. Both are very independent, strong minded and in their upper and late 20’s. Hopefully they will listen to their mama. I don’t know if their insurance will cover the costs but they can discuss that with their Drs. A big ‘ol virtual hug to you! If I could do it in person I would :)

          Reply
          1. 24.2.1.1.1

            IrishHeart

            Mary
            If you are a diagnosed celiac, celiac testing is strongly suggested
            for your children, so, if he has a savvy enough doctor, the doc will
            go for the least invasive way first.,especially if your son is asymptomatic. As I recall, with insurance covering part of it for me, the co-pay for that gene test via blood work run through prometheus labs was around $75? I think.

            His doc needs one of these:

            http://www.prometheuslabs.com/Resources/Physician/Test_Requisition.pdf

            And yes, of course her celiac panel is invalid is she was GF at the time.

            Good luck!

            Reply
              1. Mary

                That was a heart! Thank you Angel! Copying the link to send to both of them via email now.

                Reply
  25. 25

    Lima bean

    What really bothers me is that she doesn’t care what the antibodies are doing to her unborn baby! If she was taking heroin in front of people, she would be thrown in jail. But it’s Ok to kill or damage the baby with a donut?

    Reply
  26. 26

    Charity

    Great reminder for Celiac’s and those around them! We are not all the same and just because some don’t take their disease seriously doesn’t mean that that’s okay! There are people who have diabetes and don’t take care of it, that doesn’t mean diabetes isn’t a real disease! Thanks for taking a stand for the 1% + of fellow Celiac’s

    Reply
  27. 27

    Ashley

    Great job! I’m not sure I would’ve had the courage to do the same.

    Reply
  28. 28

    IrishHeart

    I had another thought and I have to say it:

    People who cheat may not have “bad symptoms” from it, but this behavior shows they still do not get the “it’s still eroding your gut lining !” part.

    Nor do they seem to grasp the “the more you do that, you are causing more AI disease processes in your body” part. ( Do they WANT thyroid disease, heart disease, kidney failure, pancreatitis, Raynaud’s, Sjrogen’s, lupus…lymphoma? because those are all possible with untreated celiac disease)

    And where does this lack of understanding come from? well, it’s probably because they did not take the time to learn about celiac disease AT ALL.

    And frankly, I am not sure why we have to spread “celiac awareness”to a fellow celiac…we spend enough time doing that with people who have never even heard if it.

    This whole subject just makes me shake my head ….:(

    I once heard of a GI doctor who told a celiac support group it was okay to cheat on occasion…it’s a damn good thing I wasn’t in the room.

    Reply
    1. 28.1

      Gluten Dude

      I hear your frustration and I’m with you.

      Reply
  29. 29

    Tabitha

    Do you know when someone sets what appears ‘unfair’ rules. I always want to break them .

    And when it comes to fun and food, food should be fun. Surely we should all be supporting each other and seeing what we can do so that nobody feels eating crap is an option or they’re missing out not having a donut.

    We are the people who will push the demand to offer alternative gluten free snacks that are tasty and good for you.

    Also please stop judging a pregnant woman. It’s tough sometimes growing another person. We should be supportive in this community and try and help not preach to others.

    Now sounding a bit preachy myself but let’s try and educate through support and love.

    Reply
    1. 29.1

      IrishHeart

      With all due respect Tabitha…I have to disagree.

      There are plenty of tasty GF goodies options out there. And you can bake thousands of delicious creations too. Many GF bloggers and bakers generously provide their recipes…there are also TONS of packaged goodies here in the US she could eat.

      No need to eat a krispy creme donut filled with gluten. NONE

      It’s not about “not being supportive to a pregnant woman”.
      So, please don’t say that to me.

      I AM supporting her by telling her to stop doing this to her body.

      If you do not get that part, I can’t really explain it any better.

      Sorry, but I come from a position of losing many babies to celiac (BUT ONLY BECAUSE I DID NOT KNOW I HAD IT!)

      And I am not alone. I speak for all the women who lost them because they did not know they had it either.

      It’s not our fault, We didn’t know.

      SHE KNOWS.

      yes.. it’s a sore subject for me. I am very supportive and generous to the GF community. I will go the extra mile to school people and get them started on a GF life. I have given 3.5 years to my fellow GF peeps…but there’s no way I will say “it’s ok for her to do this.”

      Reply
      1. 29.1.1

        Tabitha

        I’m so sorry I didn’t word my comment very well. I wasn’t questioning your support at all or you. I totally agree with your comments and am passionate about the welfare of all babies.

        I made my comment because wgst there are some great comments on here I couldn’t hep but feel the tonne of some of them was not helpful and it was possibly becoming to focussed on this one woman rather than the wider situation and others in this position.

        I didn’t make it to any one person and I too was not judging anyone. I have benefitted hugely from the support in this site and comments. Do than you.

        I too lost a baby in pregnancy. Now I wonder if Celiac was the reason. I’m so sorry to hear of your losses and did not mean to offend with my previous comment.

        Reply
        1. 29.1.1.1

          IrishHeart

          Tabitha,

          I have seen too much collateral damage and lost several people I love to the complications of untreated and long- undiagnosed celiac. I know what it did to me and my own family.

          I will support anyone in the GF community in most any way I can: send care packages, send books, talk on email, skype or on the phone, go and have lunch with them, take them to my own GI doctor when theirs have not done the job properly, recommend places to eat, show them how to clean out their pantry and what foods to stock, send go picnic packs to storm-tossed areas, buy GF wafers for church goers, hold someone’s hand as they go through their testing, send money to support their bakeries, etc etc… whatever it takes,if it’s in my power, I’ll do it…but I will not support anyone’s cheating. It’s a foolish thing to do and I just can’t condone it in any way. I make no apologies for that. I do not think of it as being judgmental or unsupportive really; I just think of it as holding fast to my own principle on this one.

          It’s not condescending or preaching or food shaming either (a term I saw earlier) –just because those of us who think this is a very bad idea express our opinions on the matter.
          And I hope that clears up my position on this topic.

          Cheers, all! :)

          Reply
    2. 29.2

      Mary

      Tabitha, I understand how you feel and your way is usually mine but I’m with Irish on this. Jennifer Esposito says “Food should be enjoyed, not feared”. Between her and Jules Shepard there are many choices out there that most can consume and even order online. There are so many people in the community that don’t have to go through the process (or already have) of healing Intestinal Permeability aka Leaky Gut Syndrome, which can take a very long time on a very limited and strict regimen.
      A Krispy Kreme donut while lecturing a group of prospective college students, with a child with Celiac and one in the “oven”? Nope. No way. She needs to be there for her children in the future w/o all the serious complications and conditions that can happen. AND they need her to set a good example. I don’t think I’ve ever been so vocal on one blog ever before..in fact I know I haven’t been..but this one’s got me feeling fired up. All children from the very young to older need to be advocated for. If she’s not going to take responsibility then I’m going to add my voice to protect the innocent. She’s aware of her condition, the one of the child she already has, and must be accountable for the one on the way as well. Ok folks I’m done with this blog. I’m about to be reduced to tears.

      Reply
  30. 30

    happy gf

    Its so hard to speak up about celiac. I think most people do not want to reexamine their own diet, so it makes them very uncomfortable to hear that this food (wheat, supposed to be healthy) can have such a profound negative effect on a person. They react with skepticism, ignorance or confusion. It hurts when I start to explain that I’m not eating so-and-so’s delicious food because I have this disease called……..and they start talking to someone else about an entirely different topic. You are very brave to approach this person and educate them!

    Reply
  31. 31

    Lima bean

    Perhaps we must all carry a fresh gf baked sweet with us at all times? In case something like this happens to us! We can snatch the gluteny treat away and replace with a nice gf one! I’m sure people only cheat because they didn’t realize there are delicious gf foods. Yeah! That’s the ticket!

    Reply
  32. 32

    Terry J. Wood

    Also notice that she’s taking “gluten cutter”. To me this says she’s not accepted that she needs to stop eating gluten. She’s trying to medicate herself.

    Sadly, there is no magic pill (even the pills currently in clinical trials) that will allow a celiac to go back to eating gluten as if they were disease free.

    A lot of people still hold out hope. The haven’t accepted that our bodies are telling us that we weren’t meant to eat wheat, rye and barley GRASS.

    We’re not cows. We can’t digest these grasses. And in us it wreaks havoc when we do. It’s true for celiacs and the NCGS.

    Until she accepts this as fact, she’s going to continue eating it and she’ll continue to damage herself.

    Reply
  33. 33

    dee

    Now that I have learned about food, I no longer want to eat gluten proteins. As was pointed out by Terry, we aren’t meant to eat grasses, and, having raised horses most of my life, I found that horses don’t eat the seedheads. Once the grass goes to seed, they won’t eat it. There is a built in mechanism of toxicity in every plant, and the seeds in grasses are impossible for anything to digest unless the protein is first broken down. Not denatured, but broken down by fermentation. That’s why grass eaters were made to chew cud. So they wouldn’t die if they got seeds. Even with oats, the horses pass them through in original form. They don’t digest them. And horses fed grains are more likely to colic than those who aren’t. I am often grateful for the knowledge about food that this disease has forced me to learn. Us Celiac’s and NCGS, in my opinion, are like canaries in the mineshaft. There are many in the human species who cannot tolerate certain proteins, and so we need to be very mindful of what we put in our bodies as a species instead of thinking everything in a grocery store is fine to eat. When you learn what food actually is, you don’t miss the poison that was killing you at all. I suppose, in the long run, it is good to have the disease and recognize what we can and can’t eat. If we pay attention, our genes will be the ones that survive. No drug will cure a disease that comes from eating food we aren’t built to digest. Might mask symptoms, but it won’t cure the disease. Only cure for food poisoning is to not eat poison food. I wonder if that woman would eat rat poison if it tasted good. Gluten is poison to us. And we just have to speak up anytime anyone trivializes that fact.

    Reply
  34. 34

    Alexis (GF in Orlando)

    Before the last 2 weeks, I had never met a celiac that cheats. I was excited to meet one of my brother’s friends who has Celiac, then she informed me she cheats. I just wasn’t sure what to say beyond “you shouldn’t do that.” I was totally in shock, and thought she might resent me getting in her business, so I didn’t say anything else about it. Then this week, one of my blog readers admitted she eats gluten on a post on my Facebook page. I mentioned to her that she is risking cancer, sent her links to some of your blog posts, encouraged her to private message me, and told her there is a local support group forming soon, where I hope to meet her. Such a tough situation. I am not sure how much to push people. It makes me so sad that some of my fellow celiacs are willing to do this to themselves.

    Reply
    1. 34.1

      Gluten Dude

      And they’re not just hurting themselves…they’re hurting the community. I so wish they would see that.

      Reply
      1. 34.1.1
  35. 35

    Sarah Miller

    I do not technically have celiac disease, however I have ulceractive colitis (inflammatory bowel disease). I have had the disease for now just over 10 years. My colon is severely ulcerated in 2 places and my villi is also damaged. My naturopath/nutritional therapist, which is also a natural doctor and biochemist has strictly forbidden that I eat gluten. I am also highly lactose intolerant. The older I get the harder it is becoming to stay in remission. Staying gluten and dairy free is a large part of my treatment. On the odd occasion that I have eaten gluten, I immediately get severe bowel symptoms. I am at the end of my tether. Although I am originally from the UK, where coeliac disease is gaining more support, I have living in the med, where only now a few gluten free options are available in shops. I feel depressed & alienated, & am considering moving back to the UK.

    Reply
  36. 36

    Rachelle

    Celiac runs in my family, but thankfully I only have a gluten sensitivity. I was diagnosed back in 2007. I decided to go cold turkey. I have felt SO. MUCH. BETTER. I don’t know if I could have gone cold turkey if my mom hadn’t already been gluten free. It can be a very hard transition if you don’t have support. I was also diagnosed with a sensitivity to casein (the milk protein). I decided to cut gluten out first, and then later cut out dairy because I thought it might be too hard to do both at once from the start. I have finally decided to do it. This is my last month of dairy, and then I am going cold turkey again.
    Since I went cold turkey, I have been served glutenous items accidentally, and boy could I tell a difference. Not even 15 seconds after I swallow my ears start hurting, I can’t concentrate, massive migraine, and then the stomach problems start. My husband wanted to take me to the ER one time, but I couldn’t muster up the strength to get up off the floor.
    Thankfully I had very supportive friends who don’t question my needs, or try to tempt me with wheat filled goodies. I have never purposefully cheated, and I never plan to. It’s just not worth it!!

    Reply
  37. 37

    Shauna

    I’m glad you said something to her. In this day, it seems all of us (myself included) are afraid to say much.
    I have two of three young daughters who are gluten-intolerant. One is way more sensitive to gluten than the other, but there is no cheating in this house. Our new pediatrician asked us just how strict we are; she was surprised how serious we are about it (sad, means a lot are cheating). I only have to look back and remember my gf kids’ pain, their exhaustion, and their many awful symptoms.
    In my opinion, the best thing a parent/loved one can do is give up something yourself. Then, there is no guilt. No feelings of “well, maybe a little will be okay ’cause I feel so bad…” There is a true feeling of solidarity. The one thing that “A” cried about (hey, she was just five) were Krispy Kremes. So, I made a deal with her: that until she could eat a Krispy Kreme, neither would I. You must understand, I love Krispy Kremes. I love them like nothing else. I still miss them. But I will not cheat. Because it helped her, a lot. We can lament together about how good they were. That it stinks to give up something you really, really like. But, it helps when you have a buddy. Good luck and health to all of you!

    Reply
  38. 38

    Kimberly

    I am going to be the black sheep here! I got diagnosed with crohns and celiac disease a few years ago. I used to get remicade infusions for my crohns, but my insurance stopped covering it so I dont get them anymore. I think I ate gluten free for 2 months. That was the longest I could do it. I just cant give up on the foods I love. I dont feel sick anymore like I used to, and I dont believe that I could be doing that much damage if I am not feeling anything. I know this is not true, and I most likely am, but for now, I cant pass up chinese food and pizza and what not. Those 2 months I ate gluten free, I felt so isolated from my family and friends. I broke down in tears when people around me ordered delivery and I couldnt. I just dont have the will power. Not to mention I do not have the kind of money to afford gluten free foods.

    Okay that was my little rant. I know alot of you are going to bash me, but try not to. Thanks!

    Reply
    1. 38.1

      dee

      Kimberly, as many have said here, once someone knows the dangers of the disease there is nothing more anyone can do but support them in their journey to regain health. Should they choose not to try to do that, in the case of an adult, there is not much more we can do. This woman was at a public gathering suggesting it was okay to cheat when you have Celiac. It isn’t. Not if you want to live a decent life. I have known people who have died from both Crohn’s and Celiac. They weren’t given a choice because no one told them about gluten until it was too late. I can only sigh, and feel badly for you that you obviously don’t have the support system you need to do what is best for your body. Being gluten free isn’t easy. We all know that. It is your choice, in the end. Just, please don’t tell people it really is OK to eat gluten with your diseases. It isn’t, and we need the general public to know that. Best of luck to you.

      Reply
    2. 38.2

      IrishHeart

      Kimberly,

      With both celiac and crohn’s. I find it astonishing that you say you don’t have any symptoms from eating gluten. That’s just denial.

      Eating GF is not more expensive. Meat, veggies, seafood, fruits, dairy, eggs, even potato chips–these foods all cost the same–, GF or not.

      GF pasta and bread may be more expensive but you can buy them in bulk and save money.

      We all know it’s the GF JUNK food that costs big $$$.

      I am not “bashing you”. Why do people assume that helping people to see they are killing themselves is “bashing”?

      If we are all honest here, we’d see that’s just people choosing a word to put on others when they are making excuses for their own ill-advised choices.

      You’re just begging to lose your colon entirely. like my poor cousin who wears a colostomy bag if you don’t stop destroying your intestinal lining. That is just a fact.

      You think it’s hard to watch others eating junk food? Oh hon, “hard” is changing your own colostomy bag. :( Hard is trying to live a normal life (have sex, have babies) wearing that thing.
      Uncontrolled celiac will bring you more grief and sorrow if you develop heart disease, lymphoma or reproductive problems.

      You need a support system to get yourself on track with eating well and taking care of yourself. The route you’re going—you’re going to have serious health issues you can’t even imagine.

      No insurance company can deny a patient medications for treatment of an AI disease. Call them and tell them the situation.
      You need to take better care of controlling the disease processes in your body.

      Please, talk to someone –a local support group for crohn’s and/or celiac can help you—and stop eating crap gluteny food ASAP.

      Good luck.

      Reply
      1. 38.2.1

        Mary

        Oh Irish you really nailed it here. I never doubt what you have to say but I have a couple of questions of my own for you.
        First, I was advised to be careful buying things in bulk. Lo and behold at a natural food store I frequent, they recently put up a sign that said “Maybe be produced in a facility that also produces wheat…etc.”…reminds me of Amy’s, and other products I used to but even though they said “gluten free”. So do I throw out the various things I spent good money buying? I haven’t noticed any repercussions and I am very sensitive to any CC. Careful label reader I was from way back in the day before my DX, I missed that fine print until you savvy folks brought it to my attention when I joined this community among many other things. Yeah I thought I had it covered…but I have learned so much here! To think I used to wonder why I kept getting sick. It also included some packaged products/pasta I bought but that was before I found out I had developed other food allergies and intolerance’s from being diagnosed so late in life and intestinal permeability.

        Second my nutritionist said not to put down Celiac Disease because other conditions I have developed…and the others I may develop…might not be covered by my insurance because of the “pre-existing” condition of CD and to say “NCGS” instead. She’s pretty damn good and had worked with, and consulted with Dr. Fasano when he was at UMD Celiac Research Center. They even had a dispute when one of his and her patients was not healing once. It turned out she had developed a severe dairy allergy, was resistant in changing and Alessio didn’t agree. It turned out the woman did indeed have a serious dairy allergy and upon my nutritionist’s hard-core advice, even though she had a hell of a time giving up dairy, she totally improved, no longer was nearly an invalid and was able to move around much more easily.
        Now my nutritionist is very strong and I’m following her advice to first heal my leaky gut which is taking a whole lot longer than I thought it would. At first I thought Man, I’ve got this! I’ll be better in 6 months and look so much healthier! Hmmm…still having trouble maintaining weight. I lost 50lbs at my worst in short order.
        You’re my “go to source” in this community for reality checks and links.
        You say “No insurance company can deny a patient medications for treatment of an AI disease.” Does that include Medicare?
        I don’t like the idea of deception or hiding things and I’m beginning to wonder about a few things.
        Thanks in advance for your response.
        Mwah!

        Reply
        1. 38.2.1.1

          dee

          Hi Mary. I know my name here isn’t Irish, but I am on Medicare. They can’t not pay because of Celiac, or anything else for that matter, being a preexisting condition. In fact, because of the new health insurance law, no insurance can deny coverage because of preexisting conditions.

          Reply
          1. 38.2.1.1.1

            Mary

            Thanks Dee! That’s been a big concern and question for me. I have a relatively new primary care provider, did indeed put down Celiac, and am scheduled for an appointment this upcoming week to address some issues that have persisted and a few that have developed. Something is seriously wrong with my spine, my neuropathy has gotten much worse among quite a few other things. I may have developed some new thing and am going to have those addressed as well. I’m still not absorbing my nutrients properly. Too much damage done, and it’s taking quite a while to heal.
            I’ve started to question the path my nutritionist has me on. I haven’t gained much ground in over a year since I started seeing her out of frustration with my GI doc. New PCP has recommended another one that is some distance for me but hopefully she will be of more help and assistance than the one I’m leaving. I know the 7-10 year diagnosis rate, but 50 years…really?? Especially because I’ve had trouble since I was a very little girl that I’ve been painfully aware of and started seeing GI docs by the time I was 6 once and non-stop since I was 9. God help me. I’m getting older and it’s really taking a toll on my health overall, so this is good news. I’d really like to be around for awhile longer.
            So yeah, back to the original subject of this post, with as careful as I am I really don’t get how anyone could…or would ever cheat.
            I know I’m symptomatic but for some years I “functioned” rather well for a Celiac. Or I got used to dealing with the pain and dysfunction and hid it as best I could. One 20 yr marriage down the drain and years later a promising long-term relationship ended a year and a half ago. Grown kids some distance away, I’m on my own to figure this out as best I can with the help and support this community provides. I can’t even remember how on earth I found it last October but I sure am glad I did. My own research was leading me around in circles and Celiac is not the only complex GI issue I have. I had an 8-10 hr ER surgery for a rare congenital colon condition…also missed…(I just visit the dr rants when I need to!) with less than 50% chance of survival and a very long hospitalization and recovery so that kinda took precedence for awhile.
            So far I’ve been the comeback kid quite a few times in my life so hopefully I’ll come back from how long and far I’ve gone down from CD.
            I’m sitting here pondering posting or deleting this…TMI? Oh the *fun* of being quiet and introverted…
            F it! I’m going for it.

            Reply
            1. IrishHeart

              Mary

              I honestly think the advantage of having a celiac diagnosis on paper is that any relevant follow up care and appropriate testing will be covered.

              Make sure you have the right tests done, ok? You deserve proper
              follow up care. I put the tests in the thread that you can find if you click my name right here.

              Best wishes,
              IH

              Reply
              1. Mary

                Thank you. Though I know it’s not appropriate for everyone, I’ve been on a a Paleo diet that is also anti-inflammatory and alkaline. I developed dairy, soy, corn allergies and have been advised to stay away from all grains. I used to take a lot of high quality supplements but I wasn’t absorbing them so now the ones I do take are liquid, powder and/or sub-lingual. Serious absorption issues, clinically malnourished, constantly prepping, cooking and eating I’m still hungry. Who can eat as much as I do and look like me? In the past I was even a bit overweight for my tall yet small frame but loved my curves that no longer exist in the slightest.
                I’ve only put back back on 10 of the 50+ lbs I’ve lost in over a year. Not attractive on an older woman.
                I’m preparing for my upcoming Dr’s visit this week so I’ll be using much of the info on your site to take to him. Good news is that my thyroid panel came out within the normal range. Someone’s got to find out what on earth is happening to me and assist me on a path of real healing.

                Reply
                1. Mary

                  *Add a problem with nightshades to that. Oy!

                  Reply
                  1. Mary

                    Arrghh..I’m tired today. I forgot to add auto-immune protocol. I can take some supplements and absorb them though they are few. I also have gotten so tired of sweet potatoes, being hungry and that I finally gave up and started eating some rice since I’ve always got Kind bars stuck in my purse anyway for emergencies along with other food I carry with me anytime I leave the house. I’m always packing food. Cheating thread that this is, I admit going against advice and eaten or drank items with sugar in them. My blood sugar will drop and my thinking/focus goes out the window.

                    Reply
        2. 38.2.1.2

          IrishHeart

          When I said to Kimberly “buy in bulk” I did not mean from places that are not certified GF. or in bulk bins.

          I only meant buy multiple packages of things like GF pasta and flours or crackers from something like Amazon. It’s cheaper in multi-packs.

          Any pre-existing condition should be covered by Kimberly’s medical insurance, as far as I know. That’s what diagnostic codes are for. She is diagnosed with Crohn’s and celiac, therefore, I do not understand why they would no longer pay for the medication for Crohn’s that they had been paying for all along., It’s an established condition.

          I have no clue what your insurance covers nor should you change anything based on what I said to Kimberly.

          Reply
          1. 38.2.1.2.1

            John

            Yep. At least three problems with buying from bulk bins:

            (1) The product generally has no label so you don’t know if it’s already cc’ed before it even leaves the factory en route to the grocer.

            (2) Even if it leaves the factory in a non-cc’ed GF condition, the bin into which it gets dumped at the grocer might have been filled with flour the day before and not cleaned carefully enough (if at all).

            (3) Even if it leaves the factory in a non-cc’ed GF condition and the bin into which it gets dumped at the grocer is clean and has never been soiled by a cc’ing product, the scoop might have just been used perhaps moments ago by another shopper to get flour from some other nearby bin.

            I don’t trust bulk bins. They follow the Anna Karenina principle: all potentially non-GF in their own way.

            When you’re GF, “buying in bulk” can refer only to buying in large quantities, possibly for a price break. On non-cc’ed goods of course :)

            Reply
            1. IrishHeart

              John said;

              “they follow the Anna Karenina principle: all potentially non-GF in their own way.”

              yowzers….a Tolstoy reference applied to a comment about bulk bins and CC…bravo!! lol :)

              Reply
              1. John

                I should prob confess that I haven’t actually read the book but have seen the AKP applied in a number of unrelated contexts. GF food happens to be a great example of an AKP system. If it’s not completely right, then it’s completely wrong.

                Reply
                1. IrishHeart

                  It’s a miserably sad, five- hankie story anyway.

                  Reply
            2. Mary

              John,
              #1. Very good point!
              #’s 2 and 3, At this particular store the nuts or items I’ve purchased have been in the same bins that you lift the slot at the bottom and put your bag under so it doesn’t involve scoops.
              They were taken over by a new company and just recently the sign that was put up about the items *may have being manufactured in a facility… Well not more buying any more of those. I looked for pre-packaged items but they don’t carry them.

              So now I guess it’s just online buying for small amounts of things I need or can use.
              When my youngest left for college I moved away from the more metropolitan area I lived in for decades to a small waterside village. There are very few options of buying anything even remotely close by.
              It’s a drive to even get to the place I mention and not much else around. Even the doctors are limited, practices are full to the max and most of the specialists are overwhelmed now.
              My current new doc, the upcoming new GI and my nutritionist are all quite a haul away. Though beautiful, time to seriously consider getting off this island and the surrounding areas. I’d like to be closer to my kids anyway.
              If I’m lucky I may have a grandchild or two in the next few years.
              Irish is right about Anna Karenina…though I appreciate the principle!

              Reply
  39. 39

    Mary

    Shite! Forgot to thank you IH for the links to the genetic testing and download for my adult kids! My daughter (the supposed NCGS one) responded very quickly saying thanks and she saved the info for future testing. She’s getting married in a couple of months and will have much better focus, time AND insurance through her soon to be husband. (She works endless hours for a non-profit…not the best health insurance).

    My son is absolutely slammed with work, going to be traveling half-way around the world with his girlfriend to see her family whom they haven’t visited in 2 years…and a very sick aunt of hers going though chemo. He and I usually communicate more often and I’m sure he will respond as soon as he can.

    You’re an angel!

    Reply
  40. 40

    Gemma

    Hi :) I love what you do here and have nominated you for the Very Inspiring Blogger Award. :) check out my latest blog post for more info! http://www.breadoralive.com.au/home/the-very-inspiring-blogger-award

    Reply
  41. 41

    dee

    Mary has reminded me of yet another problem a Celiac can develop when they “cheat”. An intolerance to other foods. Once the autoimmune cascade goes on for a long time (for some that could mean 5 years or more, for others a matter of only one or two years) the immune system can become extremely heightened to proteins or amino acids of any kind. I was reminded of this today as I trimmed my rapidly growing out of control tomato plants and my arm broke out in a horribly itchy rash from contact with the leaves. I am thinking this means all those beautiful tomatoes on those plants will be going to my grandchildren and my neighbors. I can’t help but wonder if the new proteins being made in laboratories by biotechnology scientists and then inserted into the DNA of foods could be a problem for those with Celiac. I only eat organic now, but just started that 2 years ago. Hmmmm

    Reply
    1. 41.1

      Mary

      Good point Dee. When I referred to ‘cheating’ it regarded sugar in some beverages like a fermented ginger ale that helps with any nausea, more than ginger tea, and some gluten free snacks I eat once in a while, which at this point doesn’t help the leaky gut syndrome I developed from being diagnosed so late. It also help to hear that for some it takes more than two years. I can’t even possibly imagine someone having celiac ever cheating on purpose because they think it’s too hard or think they will be ok or safe if they do. The cost and risk is too high and life, no matter how long or short is too precious.
      One of the reasons I eat organic and clean as possible is one, that’s always been my style and two, especially now, the increase in gastro problems I’ve heard about related to the biotech industry and gmo’s is concerning. I know everyone has varying opinions on this but for me I’d rather stay far away from that in my situation. It would be great if we could at least get those things labeled but it’s a powerful industry with tremendous lobbying.

      Reply

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