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121 Comments

  1. 1

    Sue in Alberta

    Nope. I’ve got nuthin’. I have sat and stared at the cursor and not one positive thing has come to mind. In fact, I am “not enough coffee, sinus headache, itchy rash” away from a rant.
    Oh and NO I didn’t “CHEAT”.

    Reply
  2. 2

    Natalie

    I am new to the celiac world, being diagnosed last year. But I can not cheat. I can not even imagine cheating. The pain I am in if I do eat something I shouldn’t, is unbearable.

    A friend of mine who has celiac told me the hardest thing when you change your diet is withdrawal and cravings from foods that you enjoy. She was so right. But I think I learned quickly after spending the day before my wedding throwing up in the Target bathroom.

    You really can’t eat it, celiac is not just an allergy, it’s a disease. Even if you can’t feel the pain, damage is still happening. The damage causes your body to become malnourished and exhausted. I am sorry, but you really need to suck it up. For your own sake and the sake of your children.

    Reply
  3. 3

    Ken

    I’m no expert on addiction. I quit smoking over 10 years ago and it was one of the hardest things I’ve ever done.
    Giving up gluten wasn’t. Can’t eat that? Ok I won’t.
    Then again, compulsive eating is a real thing. Admitting she has a problem is a step. She needs to get some professional help.

    Reply
  4. 4

    Earlhamite98

    First year I was diagnosed I cheated here and there, thinking, that it’s okay, I can handle it. Thing was, then I probably could because my body hadn’t had a chance to heal – so I wasn’t noticing the difference in how awful I was feeling. Then finally after a year of being clean and then “letting” myself cheat, I became so violently ill I nearly ended up in the hospital. It was a wake-up call for me. I will never purposely cheat again. And now that I know what it feels like to feel healthy (most of the time, I do have Celiacs after all) I don’t ever want to purposely make myself sick again. Not even for the sake of a croissant.

    Reply
  5. 5

    katej

    The only way to get rid of the cravings is to get rid of the gluten. I had the most appalling PMS before diagnosis, it went away about a year after going gf.
    I know GD is not a fan, but substitute food can be helpful while you are getting used to CD. I eat much less of it now than straight after I was diagnosed. It helped me to feel I wasn’t missing out.
    My advice would be to get rid of everything in the house containing gluten, ensure you have a tasty gluten free substitute on hand for when you are tempted, and hopefully as your body heals the cravings will subside.
    Listen to the Dude, get well soon. And don’t eat gluten.

    Reply
  6. 6

    Comrade Svilova

    It sounds like she has multiple foods to avoid, and perhaps hasn’t been able to set up her life so that staying within her safe foods is easy. I know that when I get behind on food shopping or end up out of the house for longer than I expected, it becomes more stressful and challenging to stick to foods I know are safe (and for me, that means only certified foods from dedicated facilities). So I sympathize, but at the same time, it sounds like a first step would be making sure that she has lots of quick, tasty options on hand so that when she’s stressed or busy or craving something, it’s easy to make the healthy choice.

    Like others posting here, I can’t imagine wanting to cheat, and it’s become really easy for me to say “no thanks” when out at a restaurant with friends. But only part of that is because I know how sick gluten makes me. The fact that I always have had a big, satisfying gluten free meal at home before going out also makes it very easy for me to turn down foods that I’m not 100% confident about. So I guess that’s my main suggestion — make it easy to say no by being prepared (which takes time and planning of course, and isn’t itself easy, but it’s easier than being sick).

    Reply
    1. 6.1

      Sally

      Absolutely agree – preparation has been key for me. I use Sundays as a cooking day to prepare for the week, and it’s helped a lot. I feel much less deprived when I have plenty of options available to me.

      Reply
    2. 6.2

      Alice

      Absolutely this. It’s all about starting from where you are, and the substitute foods are a great way to do that. (Though depending on how severe her nut, soy & egg issues are, the number of prepared foods to choose from may be pretty damn small.) Once you find some foods you like that work, make it a priority to have those around – it’s SO much easier to have things you don’t have to think about.

      Also, I def. hope that you can find a counselor or nutritionist to talk to about the compulsion side of things. Those of us who don’t deal with cravings like yours don’t know how to deal with them, really – we all deal with the practical side (how to have options on hand to make it easier, how to avoid CC, etc.), but I feel like you need to *also* talk with people who are dealing with that compulsion.

      If $ is an issue, maybe see if there’s an Overeaters Anonymous group anywhere near you? I think that their model can get overused when people talk about losing weight, but I think they could be v. useful in dealing with this level of craving.

      Reply
  7. 7

    Denise - noglutenhere

    Never, never would I ever eat gluten again, period! I miss it too, but I don’t miss feeling ill everyday!!!! The day I found out I had celiac disease, I said out loud to myself and everyone –> ” I will never intentionally eat gluten again! ” that is how sick I was, I don’t ever want to go back there again-EVER! I am also a two time different cancer survivor myself, and the struggles I went thru for Celiac was just as bad as having cancer!

    My grandmother died from lymphoma, looking back I am sure she had celiac disease first.

    I have a daughter that has the lymphoma gene, celiac too, I want her to have a healthy life, what kind of mom wouldn’t set a great example just for that!

    Anyway, not one speck of feeling sorry for anyone that eats gluten on PURPOSE!! No pitty party given!!! Take them apples…. They’re gluten free!

    Reply
  8. 8

    GF and More

    I entirely agree GD. It is just food. And we are lucky that we have a condition that can be treated entirely *with* food – no meds needed. I have never ever been tempted to “cheat” because it just harms me. The pain that I get from the slightest amount of gluten or cross contamination is crippling. Headaches, the feelings of stabbing with a knife and lemon juice in my gut, nausea, brain-fog, weakness, being glued to the bathroom floor in a heap, crying… no thank you. No temptation there. And knowing the internal damage that gluten does to my body in the long term, the intestinal damage, the elevated risk of other diseases that *can’t* be managed without major intervention – why would I do that to myself? I feel so so much better without gluten in my life. I am a functional human being. I can’t see tossing that away.

    Yes, it is hard. One of the hardest things I’ve had to deal with. It is just food, but food is a necessary part of life. Food touches something as simple as grabbing coffee with a friend to catch up to something as tricky as an important business dinner. But there is always an alternative, even if it means saying “I’d love to catch up and enjoy your company but won’t be eating because of a medical condition.”

    What is harder than the food is the treatment by other people and the perception by society at large. Yes, I know to some extent to get a thicker skin and not worry about what other people think. But easier said than done in the face of some of the comments we all get. GD has been so good about spotlighting and dispelling the misinformation: to me, that is the hard battle as a celiac, more so than resisting the gluten item at the table.

    Reply
  9. 9

    Lisa Kener

    I am going to leave some encouragement for this person because it sounds like she is trying to do the Paleo Autoimmune Protocol. I am on the same diet right now and it is extremely difficult to stick with it long enough to heal. I have been going back and forth between paleo and the AIP for a few months because honestly, it is almost impossible to stick with AIP for more than a few weeks unless you have a lot of time to cook ahead.

    To this person or anyone else who is not healing, check out http://www.thepaleomom.com/
    Tons of information and recipes, and she has a new book and cookbook coming out.

    Also this website was helpful to me, and she has a wonderful cookbook as well: http://autoimmune-paleo.com/

    For me, once I understood the science behind why paleo is the best way to go I am NEVER tempted to cheat. I actually feel sorry for people who eat the standard American diet because I see how harmful it is for everyone, not just people with autoimmune disease.

    If you are struggling you need to inform yourself. Read Dr. Terry Wahls’ book MInding My Mitochondria for more about nutrition. Or read Grain Brain. Or It Starts with Food. There is tons of research out there that will make you so grateful that you HAVE to eat this way. I swear you will never want to eat bagels again, and if you get your diet under control you may live to be 120. :)

    Reply
  10. 10

    Musicmidget

    I agree with Ken. She definitely needs professional help. And if she has children with food sensitivities/allergies she simply cannot cheat. She has a responsibility not only to maintain her own health, she also has a responsibility to teach her children how to maintain theirs. It sounds like they have celiac too – or NCGS at the very least.

    For some people, fear is not enough. I’ve watched several people in my own family continue to smoke after having cancer related to tobacco use. For the life of me I can’t understand it. For them, the addiction won out over the fear. Fear was enough for me. Before I was diagnosed, I really thought I might have had cancer. The thought of my two very small children growing up without me broke my heart. Once I found out it was celiac, I cleaned out my pantry, started the diet, and never looked back. But that’s me. Some people just can’t see it that way. I truly hope she gets the help she needs. For her sake and the sake of her children.

    Reply
  11. 11

    The Atomic Mom

    Perspective? If I were to let my son cheat with his food allergies, he’d die. So there’s that. It really is just food, find something else, and learn to love that.

    Reply
  12. 12

    Alice

    Before I was diagnosed with coeliac (as we spell it in the UK), the only person I knew who had it was a close friend of mine who cheats more than I thought it was possible to cheat. She eats Danish Pastries for breakfast every morning and instagrams her Chinese food and pizzas. She goes out to restaurants which only serve pasta-based dishes and doesn’t give a damn. I completely forgot she was coeliac once and cooked her pasta and garlic bread for dinner – and she ate it without a peep.

    I know that I would never do any of those things, and I don’t understand how she can because it hurts so much. She has a lot of other illnesses, and she blames them for her pain – but I can’t help but wonder how much better they would become if she just stopped eating gluten. She doesn’t even feel guilty.

    So, in conclusion, I feel sorry for both this woman and my friend – but in my firm opinion they are acting like children and need to take control of their cravings and their health.

    Reply
  13. 13

    Jersey Girl

    GD-

    I get your point. It is very hard for me to associate heroin addiction to gluten/grain/egg/etc. intolerance. but, hey maybe for her she really has a strong hardwire addiction to her brain. My advice would be to her to never have anything that you cannot tolerate around. find a support group.

    xo-
    Jersey Girl
    ————————————————————-
    I found it hard,
    It was hard to find
    Oh well, whatever, never mind.
    Nirvana

    Reply
    1. 13.1

      Gluten Dude

      I so love your quotes :)

      Reply
  14. 14

    kara

    The only advice I can think of is to see a nutritionist or dietitian. Someone who can help you set up a food plan. Help you figure out what to buy, what you can eat. Something that works for everyone in the home.

    I understand food cravings, and there are GF replacements out there. Crave bread? Try some different brands until you find one that you like. Cookies, crackers, cakes…all out there. Recipes with a little trial and error can be changed. Eating bread puddings every day for a week while I experiment with different GF breads to find one that worked really well. And I didn’t hear any complaints from my family. (We may have gained a few pounds, though!) Search and find the foods you can have to fill those cravings, and keep those on hand. Don’t even buy the ones that you shouldn’t eat.

    And you may be surprised by what you don’t have to give up.

    Reply
    1. 14.1

      Kathy

      Right on!
      (says the lady who went out for Pamela’s GF pecan shortbread cookies last night – damntheyregood)

      Reply
  15. 15

    thetxlady

    Been here, felt this & survived only because I wanted to live. It really is this simple: are you so selfish that you will continue poisoning yourself until your husband has to stay home & care for you while you die from cancer OR do you care enough about your kids, yourself & your marriage that you will do whatever it takes (including in patient treatment) to get yourself clean? This simple LIVE DIE…PICK ONE!!!
    You very likely are a host for candida. The way my naturopath (functional medicine doc in insurance book) explained it is the sugar feeds the invaders that keep me fat, sick & tired all the time. The cravings for in my case little debbie swiss rolls, are these aliens trying to continue to survive. Roommate thought teasing me with them was funny & the psychotic fiend reaction she got was something neither of us expected. Much like dealing with an alcoholic we agreed none of those things in the house until I could control myself…FYI frozen snickers are twice as good yet still gluten free.
    Getting to the core of my anger on this…my 3 babies died because I had no idea what this disease was. I never get to feel pregnancy or have the excuse of hormones or possibly ever have kids even through adoption because of social services ignorant views on this disease. You on the other hand, have multiple kids, a husband that presumably makes a boat load of money as pilot, sales rep, consultant yet want to hear boo hoo you…sorry all out of pity today!! You already have what thousands of celiac women would kill for & would rather give it up because you’d die for pizza & doughnuts? Please give your husband & kids my number when you die from cancer. I’m past needing pizza to make myself feel good & I’m dying for a family like you’ve got & are too selfish to care about long term consequences of your actions. Want to embrace the suck? Try dating with this disease!!

    Reply
  16. 16

    Kathy

    I grieved when I got my dx. But only for the years I lost trying to figure out what was wrong with me. When you are that sick for that long and somebody says “here’s your treatment / here’s your cure”……. So many of us live in complete fear of going out and getting accidentally glutened, why would I do that on purpose??
    Sure, it’s a pain to prep ahead – to find a restaurant to go to you can trust, to pack your own food for an outing because you’re not sure, to tell people constantly “no thank you” to food offers. But, IT’S WORTH IT because IT’S YOUR LIFE!
    One of my best friend’s just found out her 10 year old son has type-1 diabetes. She remembered something I said to her after I was dx’d, that it was all about establishing a ‘new normal’.
    I wish this woman luck, because it really sounds like she does need help, but my sympathy is limited.

    Reply
    1. 16.1

      Gluten Dude

      I use the term “new normal” all the time.

      Reply
  17. 17

    Wndrlnd78

    I’m actually very disappointed with this article and most of the comments. There are some who really struggle with food, some in big ways. Watch my 600lb life for an eye opener. I think it’s so unfair to tell someone, who’s asking for help, to basically stop whining and suck it up. She’s struggling. How about offering ways to help instead of putting her down? I have been struggling too. I have found that the best thing for me was juicing to clean out. I follow rebootwithjoe.com the recipes are delicious and for me taking food out for a few days altogether really helped jump start better eating habits for me. I’m not a big fan of the GF bread substitutes and things, simply because they really are not good for you. BUT, if they help with getting through for a little bit until you can get a handle on the diet than go for it. Do your research and find out what places around you are safe for you to eat at. If you can’t find it in you to do it for you, look at your sweet children and do it for them. Reach out for help. A nutritionist reLly helped my sister and a fellow celiac really helped her too. Apparently not here, on this day. Hang in there!

    Reply
  18. 18

    Julie Anderson

    I understand the urge, but not the repeat behavior. I’ve been GF almost 6 years and cheated once, about a month in. I landed in the emergency room for 12 hours and spent the next week on broth and rice. No matter how weak I get, that experience galvanizes me against the lure of everything I can’t have. I hope she finds the strength to take care of herself before she has a similar experience.

    Reply
  19. 19

    Jackie

    To the woman who wrote the letter to GD, my heart goes out to you. I wouldn’t wish celiac on my worst enemy. As you are already dealing with multiple food issues within your family, I am sure that your diagnosis can feel like it’s enough to push you over the edge. Balancing young children and a travelling spouse is incredibly challenging – I have lived that life as well. If feeling awful isn’t enough motivation for you, and if the fear of future health problems isn’t enough motivation, try focusing instead on the love that surrounds you. Your husband and your children love you so much, and they want you live a long, happy, and healthy life with them. And I bet you want that as well! Focus on the long term result – being healthy and enjoying your children as they grow up, because you love them as much as they love you.

    I am also a firm believer in celebrating small victories. Praise yourself each time you say “no” to an item containing gluten that you really, really want to eat. Reward yourself, whether it’s with a GF treat, or a chat with a friend, a bouquet of flowers for your home, etc. – whatever makes you happy. Each small victory pushes you towards that long term goal of good health.

    Good luck!

    Reply
    1. 19.1

      tara

      I am with you jackie! she needs some support. i am only Gf i cannot imagine taking out another component of my diet. it would feel incredibly overwhelming. Perhaps she needs to start small. Cut out one or 2 things at a time and go from there. To some food is a huge part of life and not everyone has a good support system and that’s the key in the beginning if you ask me. I have never intentially cheated nor do i ever plan to but boy i still want to !!! My advice, do it slowly, celebrate small victories and PLAN your meals and stick to that plan. Good Luck.

      Reply
  20. 20

    BJMarley

    I understand her urges to eat. I have been the mother with a toddler whose husband traveled for work. I know it is very difficult. When I was in that situation, I also turned to food for comfort. Most of that comfort food was glutenous and full of carbs.

    I wish other people who commented had been less judgmental. Unless a person has been in that situation, he or she can’t know how hard it is to turn away from comfort food. Tough love doesn’t work for everyone. Some people need support and caring. Tough love just drives some people back to the very thing they are trying to avoid.

    My children are teens now. My husband no longer travels for work. I am not in the same place I was before, but I can still understand her struggle.

    I recently realized that I am non-celiac gluten sensitive. I quit eating gluten about 3 months ago. A few weeks after I had stopped eating gluten, my husband brought home fresh, hot doughnuts for the children. I opened the box and before I realized what was happening I had eaten 3 doughnuts. Eating those doughnuts was a rush, a real sugar high. I would have eaten more, but I suddenly realized what I was doing. Had someone tried using tough love on me at that moment, I probably would have rebelled and missed the lesson I learned when the achiness of inflammation started up almost immediately. I spent most of the next 36 hours in pain. Now I have such a strong mental connection between gluten and pain, that I am not tempted to cheat.

    What I would like to say to the community is that if you have the ability to eat clean, keep eating clean. That self-control is wonderful. But if you have self-control, don’t despise people who are actually fighting an addiction. And to those people who are fighting an addiction, try focusing on the positive. Focus on the yummy things that you can still eat. Plan and prepare ahead like others have suggested. Don’t buy foods you can’t eat. And get a real life buddy to help support you in making good food choices. If those things don’t help enough, ask for a referral to a dietitian or a counselor. You don’t have to struggle alone.

    Reply
  21. 21

    AllergenMenuMom

    I would guess her issue is less about wanting to eat gluten and more about not having found the safe foods she craves yet. People focus a lot on what they’re giving up, but forget to enjoy exploring all of the things they CAN have fully. I would tell little miss cheater pants (nicknamed with love) to be sure you’re not just taking foods out. Also, add foods in. There are a multitude of safe foods out there that you have never tried yet (no matter who you are). Explore, have fun, and incorporate the ones you like into your diet regularly. Keep them on hand ALL THE TIME. Pretty soon you will be craving safe foods. I’m off gluten for myself and dairy, eggs, peanuts, and tree nuts for my kids (at home and any time I’m with them, which is all the freakin’ time). It can be challenging to combine restrictions, but I can assure you, there are safe foods out there you will love and crave. No more cheating!!!

    Reply
  22. 22

    Jennifer

    I was at the Celiac Symposium in Chicago last year. There were 2 big takeaways for me – 1.) There are a large number of people with Celiac Disease that cheat, something like 55% of patients. So this woman isn’t alone. 2.) Dr. Alessio Fasano reiterated to the group that Insulin is to Diabetics what a gluten free diet is to Celiacs. Food for thought- no pun intended!

    Reply
  23. 23

    GF MOM

    I understand that you are struggling. It is not easy having small children to care for on your own. Besides all the complications you and others stated above, no one has mentioned that a side effect of not following a GF diet can be a deficiency in vitamins and minerals which can lead to depression. It sounds like you have a variety of reasons for depression. Look into getting help! You deserve it and so does your family!

    Reply
  24. 24

    Terry

    I feel so FORTUNATE now. I was able to figure out (on my own because no doctor at the time could help me) that I was gluten intolerant. I used a food diary and traced the source of my illness. I was so grateful that all I had to do was stop eating wheat, rye and barley and my health would return. I’d often say to myself that “nothing tastes as good as being healthy feels”.

    I was so lucky to meet Jules Shepard on line. So much of the quality of my life returned because of her recipe blog! She’s done more for many of us than most doctors have.

    I finally feel that I have recovered from this illness, because I have found so many substitutes for the foods I’ve missed. I no longer long for anything. I have it all. I feel so fortunate!

    But look at what this woman tells us she must give up. She’s not just going gluten free:

    “I cannot eat dairy, any grains, nuts, seeds, eggs, soy, or night shades.”

    That’s a LOT of things. A LOT.

    I eat more rice than the Japanese! I have it at every meal. Corn is next in line. She can’t have ANY of that?

    She might as well be on a paleo diet, except that she can’t have nuts and seeds or eggs!

    And potatoes and tomatoes are out too? No cheese or yogurt?

    Yes that would take away a good portion of my current choices. What’s left? Steak, bacon, some fruits and salad? (You can only eat so much meat, no matter how delicious it is.)

    I would say she has a significant challenge and she can’t do this on her own, that’s clear. She needs a support group. She needs to focus on what she CAN eat and make the most of that. She’s needs a Jules Shepard of her diet world to give her hope that there’s life after this restrictive diet. And this diet needs a NAME to remind her that it can be done and it need not be tasteless!

    I suppose that I could do this if I had to. I like being healthy again. But it would a tough battle and very sad to do this alone.

    So don’t be too hard on her Gluten Dude. Be thankful that YOU (and I) don’t have her troubles.

    I’m not sure I could walk a mile in her shoes.

    Reply
    1. 24.1

      Lisa Kener

      I completely agree, and there IS a diet for her, called the Autoimmune Protocol. It is a modified Paleo diet without nuts, seeds, eggs, nightshades, dairy and sugars.

      It is not designed to be followed forever. You follow it long enough to heal the gut, which could be several months to several years if you have a lot of damage. Then after that you begin to add foods back in until you find what works for you and follow as close to a regular Paleo diet as possible.

      All it requires is some dedication and some good recipes that can be easily googled under “paleo autoimmune protocol.”

      Reply
  25. 25

    Jean

    I believe there is a lot we don’t yet know about addiction. And, given that each person’s biochemistry is different, there are a wide variety of responses in our bodies to going gluten free. That being said, there are no options (that we presently know of) to removing the food that causes you harm in order to be medically safe. Find substitutes, find a support group, read the posts/comments on this website. Many of us have been overwhelmed by life situations and then have no energy to do what we need to do for ourselves in order to heal. We have to support ourselves in order to be able to help others. Easy to say, hard to do.

    Reply
  26. 26

    Christa

    I hope this woman reads these comments and reads this one. YOU ARE NOT ALONE!!! Please go to the website http://www.oa.org. I am a compulsive eater (or food addict). It is as much of a problem as alcoholism or drug addiction. What you are describing is what goes through every compulsive eaters brain every day…until we learn the Overeaters Anonymous program and find there is a way to control this (and the best part is that this program is totally free!!). You don’t have to be overweight to be a member, you just have to want to stop eating compulsively. It will change your life, I promise. There will most likely be a meeting in your area that you can check out….and you should. I was diagnosed with celiac after I had been in OA for a few years, and it helped me so much with this new group of food I had to give up (gluten). I was able to use the program to simply incorporate this new food restriction into my life. You have nothing to be ashamed about, there are thousands more people who act and feel like you do, and those same people who can help you get healthy and happy.
    Hope this helps :)

    Reply
  27. 27

    Gloria @ glutenfreepoodlehome

    I have never intentionally cheated in 18 years of being GF. That being said, I completely understand where she is coming from and sympathize with her. As I am a dietitian, I deal with many different diseases that people have and this is not much different than someone with out of control diabetes who eats a bunch of sugar and doesn’t take their insulin regularly, or a cardiac patient that still goes to McDonalds daily. Or a 400 lb patient who knows they should not eat so much. Just because we know what we should do does not mean we can do it 100% of the time. She needs some professional help from a dietitian, Dr, counselor. If she were my patient I would give her sympathy and then strongly tell her what she is doing to herself and then we would work through the steps to get well. 1) Maybe she has never been 100% GF. The cravings won’t go away untill you are off of it.This is often the case with diabetics who have a sugar addiction. 2) Maybe she has some depression or low self esteem. This is often the case with obese patients. 3) maybe she has a limited knowledge of nutrition or cooking and needs help with meal planning and substitutions. 4) maybe she has some nutritional deficiencies or hormone imbalances. i.e. people with low magnesium crave chocolate. The fact that she falls off when she has PMS is a clue. I hope she reads my comment and seeks out some people who will help her. Beating herself up because she can’t do it is pointless. This isn’t working for you, try something else. And “Don’t dig your own grave with your knife and fork.”
    If she is reading this please go to my blog at glutenfreepoodlehome.com and get my contact info and email me if you need anything.

    Reply
    1. 27.1

      DebFezz

      Well said, Gloria, although I wonder if the woman who wrote the letter could have even gotten through the gauntlet to finally get to your message without just throwing in the towel. This was some pretty serious piling on.

      Thank you for being a voice of empathy and pointing out that there might be, and very likely are, many other factors going on with the letter writer.

      People grieve loss differently….and the loss of a major food group is worthy of the grieving process. Getting stuck in a phase do the process isn’t uncommon. Denial, anger….back to denial.

      I am married to a man who was born in Italy….he is one of nine kids…we all live within a 40 mile radius so huge food centered gatherings were common. Pasta, bread, cakes, more pasta, more bread…and the circle continued. So suddenly I needed to beg off of those things. It wasn’t easy when no one in the family had ever heard of gluten intolerance or celiac.

      I dreaded family gatherings because I would be exhausted trying to explain for the umpteenth time that no I could NOT have “just a tiny bit”.

      I tried taking my own food, only to get that old world look from my in laws that I was implying their food wasn’t good enough for me.

      But back to the point….some people will never get to the point of total acceptance of what is best for them. Some will reach out for help and compassion, hoping that today might be the day they can resolve to accept the new reality. Piling on with the “just suck it up” lecture doesn’t seem, in my opinion, all that helpful.

      Reply
  28. 28

    Jaana Flaherty

    I really think it comes down to how serious your physical consequences are after you ingest gluten. For me, it feels like I’m dying. Aside from having intense pain in my stomach and lower back I am In bed, with extreme fatigue, body aches, headaches, I want to rip my eyes out from my head because they too hurt so bad and sometimes even throwing up along with of course the diarrhea. It feels like an awful case of the flu and stomach bug. So if you haven’t experienced consequences so harsh that it makes you hate anything that has gluten in it, I don’t think I would want to stop either. It always comes down to choices but also consequences from those choices. Good luck I hope you find it in you to stop. Your long term consequences will far out weigh anything currently.

    Reply
    1. 28.1

      DebFezz

      I couldn’t agree more, Jaana.

      Reply
  29. 29

    BobL

    You are not trying hard enough.
    You are being lazy.
    And most of all, you are not using your imagination.
    Do some research and find good gf recipes that interest you.

    Reply
  30. 30

    Shannon

    I think a bit of sympathy and a bit of tough love are both in order.

    Celiac sucks out loud! I am pretty sure everyone on here agrees. :). I also struggle with compulsive eating and various other food sensitivities (dairy, eggs, tree nuts and peanut) so I can relate. I really struggled the first few months and I would cheat. Then I made up my mind ENOUGH!!!!!!!!! And I become militant about keeping myself safe from gluten. After about two weeks the “compulsive” craving to cheat went away. It doesn’t resurface unless some of that poison slips by me.

    Be strong! Clean up your diet! Make sure you aren’t getting cross contaminated!

    Shannon

    Reply
  31. 31

    Lori2

    While I’m not a fan of positive thinking, if you believe you can’t resist eating something, you are setting yourself up for failure.

    Reply
  32. 32

    Tina

    I totally get what she is saying about the cravings being harder when PMS is going on. Any time hormones are going crazy everything gets harder! I may be totally off on this, but this lady sounds like she may also be an emotional eater. And all those glutens are great comfort foods! While I am not an emotional eater, I had a family member who was. She completely destroyed her health because she ate to soothe her emotions. Much like the alcoholic who cannot stay away from alcohol even though he knows it can cost him everything, the emotional eater does the same thing with food.

    Perhaps connecting with a group of people who have the same struggles will help. There are support groups for everything. Addictions suck…and food can be an addiction. She needs to find a way to overcome the addiction. Hoping she does that!

    Reply
  33. 33

    Claudia

    Since I was diagnosed, I have never cheated. I am too scared to cheat. The few times I have been cross-contaminated, it was hell on wheels. The only thing I would say is you are setting up yourself for adenocarcinoma of the small intestine and Non-Hodgkins lymphoma. Both cancers have a POOR prognosis. Not worth it. Celiac closes the big Gluten door, but even though the gluten free door seems narrow, once inside its a pretty big room. I have widened out my diet and I don’t—repeat don’t feel deprived. Nuff said stay away from gluten.

    Reply
  34. 34

    Rosa

    Since you are most likely the family cook and shopper. Quit buying the junk! In my house since I’m the one with celiac everyone has to eat GF. Also look into Paleo. I was diagnosed with breast cancer 2 weeks before being diagnosed celiac. Trust me I do not want to have another cancer.

    As Nike says:

    Just Do It! You deserve it.

    Reply
  35. 35

    Miss Dee Meanor

    We have to remember that some people are asymptomatic or only have a mild reaction when they consume gluten. I have such a hellacious response to eating that there is nothing in the world that could make me knowingly consume it. I’m not in a place where eating it causes no physical symptoms so I’m not one to judge how well my willpower would hold up if the reverse were true.

    I would suggest seeking help as others have suggested. If it something that you simply can’t control, you have taken the hardest step by knowing it’s deadly to consume it and you feel powerless to control the urge. Also, like most alcoholics can’t have alcohol in their home and must avoid places that serve it, I feel you need to be sure nothing containing gluten enters your home. Buy substitutes for your favorite gluten foods and get your entire family on board with this. If you already know you can’t resist it, then don’t make it easy to get your hands on it.

    Good luck!

    Reply
  36. 36

    Celiac Mindwarp

    I had dreadful gluten cravings before I realized I am NCGI. Once I went gf, I was fine while I ate paleo, but when I let odd bits of bought gf food (damn those bagels) I slipped back into addictive behaviour. No gluten, but plenty of junk. I am badly affected by any type of sugar.

    I went back to paleo 2 weeks ago and ta da, cravings gone.

    You have to quit gluten for sure. It may be worth looking further to spot if anything else is provoking addictive eating.

    Remember all that gluten affects mental health in many people, and going truly gf may help a whole host of issues.

    Reply
  37. 37

    Heather

    I was almost angry when I first read this post. After thinking about it a few hours I have calmed down and I realize that people who cheat must not realize the ramifications. I am going to tell you exactly what keeps me from cheating. I’ll do my best to keep it brief, but no promises :-)!
    My mother struggled with food her whole life. Her staples were, tomatoes, eggs, Lays plain potato chips, baked potatoes and Breyers vanilla ice cream. She ate those items every day at 5 feet tall and 95 pounds she struggled to gain weight and muscle strength her entire life. She was a firecracker and every moment she was feeling well she was going non stop. I loved her energy and positive, never complaining attitude…I really envied it. The way she could push through pain and illness was amazing. She was hospitalized so many times over the years, mainly for extreme pain in her gut. They were never able to give her an exact diagnosis of what caused the pain. Starting around the age of 13 I was taught to give her weekly B12 shots and monthly iron injections. This went on for many years because her levels were so low and she could not absorb vitamins in the pill form, but the doctors never understood exactly why. Eventually the iron injections stopped working and every three months she went to the doctor’s office and would spend the day receiving the iron through an IV. This made her feel pretty sick, but after a day or two she felt better and it was worth it to have energy for the next couple of months.
    December 28, 2010 I received a call at 4am. My parents were visiting my brother and nephew for the holiday’s. They were in Delaware and I was in South Carolina. I was told mom had been rushed to the hospital with severe pain, but this time it was different…and I might want to get there asap. There was no chance of getting on a plane because of the bad weather so I made the 9 hour road trip in 8 hours. I got there just in time to say goodbye. She was not awake and was so bloated she was bigger than the hospital bed. She looked nothing like my fun, loving, happy, sweet, petite mom. Her intestines were so infected they ruptured causing sepsis throughout her body. There was nothing they could do. I like to believe she could hear me when I told her how much I loved her and that she was an inspiration to everyone. She was only 60 years old.
    The doctors now say they are sure it was Celiac Disease. I was diagnosed with Celiac Disease last year. From the moment I was diagnosed I have never touched gluten, at least not on purpose. My mom did everything she could to live life to the fullest. She wanted nothing more than to continue watching her family grow. Why would anyone intentionally gluten themselves? If you do you may end up with cancer or go through what my mom did. Remember when you gluten yourself on purpose it’s not just you being glutened, but your family and friends. If you end up with cancer those around you will be the ones taking care of you, and if you pass away unexpectedly they are the ones left to grieve. Just think about everything you will miss in life…in your children’s lives! My mom knew there were foods that made her sick, but she didn’t know the root of the problem was gluten. You do, please think about the consequences…there is no food worth the physical and emotional pain. If you really do have an addiction to foods then please seek help, if not for yourself than for your loved ones.
    Thank you for reading my not so brief post.
    Gluten Dude…you are fantastic thank you for taking time and energy to keep your blog going!

    Reply
    1. 37.1

      Val

      Thank you so much for sharing, Heather, we all need to hear the scary truth when we need a kick in the **tt… like me right now, for instance. It must be painful for you to relive all this, I really appreciate it.

      Reply
  38. 38

    Ophelia Bell

    Maybe this is insensitive, but I don’t understand what is so hard about it. I can understand how hard it can be for people with many food allergies, but gluten? It’s pretty easy.

    The problem is that our lives have become so busy that we want to rely on others to fix our food. My friends thought I was weird growing up, having a mom who cooked nearly every night of the week. But back then both of us were lactose intolerant and it was safer to prepare our own food.

    I’ve learned that if it is made with gluten, you can make it or buy it gluten free. If you know where to shop and how to find deals, it isn’t as expensive as you’d think (I love bragging that my husband got an Udi’s pizza for FREE!). It makes it easier if you prepare your food and don’t rely on quick take out most nights. Also don’t let yourself get too hungry. Carry around nuts or jerky. You’re more likely to eat whatever if you’re ravenously hungry.

    Reply
  39. 39

    Leah

    I am not going to tell you what you already know…….. but will suggest maybe try making you home gluten free, remove the temptation or change your habits which lead to you eating gluten. If it truly is an addiction or habit it will change in time. Good luck

    Reply
  40. 40

    Lisa Mims

    I’m inclined to think her problem is circular: I don’t eat red meat, eggs, and anything that might be cross-contaminated or was made in a shared facility. I get sick otherwise. Since I made my peace with not eating those three things, I don’t get sick, basically ever. I also don’t crave those things. It’s not a self-control issue, because where food is concerned, I have very little. It’s more, “out of mouth, out of mind.” If food is a drug, and you’re not eating the things that make you sick, your brain doesn’t ask for those things. I don’t crave wheat pizza, because I haven’t had any in fifteen years.

    Seriously, within the limits of my allergies I eat whatever I want. If you’re a, “whole foods person,” shut your ears. In the last month, I’ve eaten Mounds bars, Lara Bars, lox, cream cheese, several pounds of smoked herring, more kinds of cheddar than I could count, a box of gluten-free chocolate bars, a raft of rice noodle dishes, gluten-free doughnuts, bagels, bread, cupcakes, at least two hundred gluten-free corn tortillas with butter, gluten free waffles and pancakes, gluten free fries and even four or five gluten-free chocolate shakes. (Not all at once. That would be gross. -0)

    I also have a fondness for eating homemade coleslaw and gluten-free pizza at midnight. Last night alone, I spent an hour making a huge citrus salad, because that was all that I wanted.

    Am I overweight? Of course. Am I unhealthy? No. My glucose, blood pressure, cholesterol and every other marker is so good that my doctors ask what I’m doing. Do I have food issues, and control around food issues? Hell, yes.

    But, I’m not sick. I love food, and I’ll admit to eating too much, just because it’s there and it tastes good. The one place I insist on having control–is that I can’t eat anything I know will make me sick. Maybe if she gave herself permission to be addicted to food, but said she couldn’t eat what makes her sick, then it would be easier to stay gluten-free?

    Reply
  41. 41

    Humbug

    Find the ‘want’ behind the ‘should’.

    At the moment you sound like you are putting yourself in a place where you feel deprived. This is easily done – just tell yourself you mustn’t do something. This is how to grow an addiction.

    You’ve just got to find the reasons why you WANT to avoid gluten. We all have different reasons – you need to find yours.

    Once you have found your reasons, start treating yourself like an adult, rather than a naughty child. Instead of saying ‘No’, say ‘you can if you want, the decision’s yours’ and then bring to mind your reasons why you want not to eat gluten foods.

    For me it was paleo. It gave me a positive reasons not to eat grains. I want to be as well as I can, to have more energy, to be stronger, to look better (and with a bit of tweaking, paleo is paying off for me). Also, it gave me a forum shared with other people making positive choices (rather than HAVING to do something because of a disease which is just so unfair…. and I wish…blah…craving…).

    Reply
  42. 42

    E.J.

    The letter writer might have fewer strong cravings once she gives herself a chance to heal and genuinely goes gluten free. I used to have insane, intense PMS cravings. It turned out it was related to the subtle nutrient deficiencies I’d had before I knew I had celiac. After several months of no gluten, the cravings went away. If you never give yourself a chance to feel better, all you’ll think about is what you’re missing, rather than how horrible it is to eat something that makes you sick. I’m also allergic to soy, milk, nightshades, citrus and most nuts, along with having celiac. It does suck. There are days I’d like nothing more than to have a piece of pizza. But, now that I’m better, if I actually get near enough to such a thing to smell it, I find it’s actually rather repellent. The connection between how sick it makes me and the thing itself is a great deterrent. When all one knows is being sick and having abnormal digestion, it’s harder to make the connection or to realize the difference a safe diet will make. It only seems like a great loss, not the gain that it actually is.

    Is your husband supportive? It sounds like your house is full of gluten. It will be much harder without a supportive spouse (I know–mine wasn’t). Ideally, you should get the gluten out of the house. If this is not possible, you need a “safe space” in your kitchen. Nobody is going to take you seriously or support you in getting better if you won’t take it seriously.

    Ultimately, it is up to you. You need to decide if eating a bagel is more important to you than neurological degeneration, pain, lymphoma, and the rest of the long list of what happens to untreated celiacs. In my case, there was also constant itching, rashes and throat swelling from the allergy items as well.

    I should add I no longer have to worry about PMS cravings. After a lifetime of untreated celiac and other health problems (partly related), my gynecological problems became so severe I had to have an emergency full hysterectomy in my mid 30s.

    To be honest, it sounds to me as if your problem is deeper than merely learning self-control. Have you considered counseling? Do you have compulsive tendencies in other areas? Depression (which can be related to untreated celiac)? Self-harming or destructive tendencies in other ways? At the least, it sounds like you might have compulsive eating issues. This is a genuine problem that can require professional help, and goes beyond others telling you to get over it and pull up your bootstraps. I think your problems go beyond your diet, and you should consider getting help that goes beyond writing to a blog. I mean this in a concerned way, and am not trying to sound unkind.

    Reply
  43. 43

    Lisa Mims

    One other thing: the important thing here, is to stay gluten-free.The other intolerances and allergies may resolve if you stay gluten-free. I used to be lactose and fructose intolerant, as well. Even after twelve years of being gluten-free, those things did not go away. Then, I had a biopsy that showed a small amount of damage, even after all that time of trying to be gluten-free. I went back through everything I was eating, and cut out anything that might be cross-contaminated (nuts, dried fruit, beans and anything made in a shared facility). After another year, the lactose and fructose intolerance went away.

    If you are celiac, the only thing that really matters is being gluten-free. The rest will either resolve itself, or it’s basically just an intolerance or allergy that isn’t causing the kind of damage that gluten can.

    (Casein may the exception to that, but it probably depends on your ancestry. )

    Reply
  44. 44

    Jennifer

    When I was trying to figure out what was wrong with me, I did waver back and forth with eating gluten. But once I realized that there was no denying that gluten was the problem, I have never looked back. The thought of eating anything with gluten, even delicious pastries or warm chewy bread, does not even tempt me anymore. The thought of getting glutened terrifies me because I feel so bad when it happens. Maybe that is the cut off. The worse the potential reaction, the more likely you won’t crave it. In my case, heart palpitations, extreme weakness, intestinal troubles, and panic attacks are enough to make gluten almost repulsive most of the time. I do still love the smell of certain foods, but it is not a problem. The only problem I have is when I am unprepared to eat at a restaurant (impromptu invitation) or at someone’s house. In those cases, I choose not to eat. It is simply not worth it to me anymore.

    Reply
  45. 45

    Celiyak

    I never cheat on my gluten-free diet, but for some reason, after being gluten-free for two years, I suddenly started having symptoms again. That’s when I started the Specific Carbohydrate Diet (SCD). On that diet, you spend a few days eating a very limited selection of easy-to-digest foods and then gradually start adding “legal” foods and homemade yogurt into your diet. The idea is to give your intestines time to heal while eating foods that don’t challenge your system. Lisa is right about how other tolerances disappear when all gluten is gone for a period of time. (By the way, SCD is actually very similar to Paleo, so many Paleo recipes work perfectly.)
    I have had great success with SCD so far. I feel so good now that I’m not even tempted to cheat.
    Sure, I miss some foods, but I certainly don’t miss the D.
    Like some of those who have commented earlier, I set aside a few hours on the weekend to prepare lots of food that I love to eat. That way, when the cravings hit, I have a lot of gluten-free options. I have a blog called Celiyak at http://www.celiyak.com where I post recipes and advice for the SCD and gluten-free diets, if you’re interested.

    Reply
  46. 46

    Nicole

    They say that there are celiacs that have no symptoms or very few symptoms ( not saying this is the problem here) and I have to say that, because I was so sick and non-functional for a good part of the time, there is no way in hell that I would ever cheat. I often wonder what I would do in an emergency situation, or if I was without food for a while. I think I would rather starve; ripping up my intestines, the fatigue, the chest pain, etc. would not be worth it. I am grateful for all of the pain and suffering I get from accidental glutenings.

    Reply
  47. 47

    Keratee

    After being diagnosed with celiac, I’ve never cheaten. From my first gastroenterologist visit when I was told it might be celiac, I stopped eating immediately. There was no binge fest. I just went cold turkey!!! The amount of pain and suffering I went through after being diagnosed I knew I could never cheat. It would kill me, literally!!

    How does the fear of having multiple food intolerances, diseases, weakened immune system, weight loss, weight gain, diarrhea, constipation, infections, skin conditions, malnutrition, a DECREASED life span, etc not scare you…. Again, how do these things not terrify you?! Unless I’m just being a pansy. Well I rather be a healthy pansy than one that lies in bed or sits in doctors room for weeks on end.

    I’m sorry but I don’t get it either. Only you can do this for yourself. No one else.

    Reply
  48. 48

    Catherine N

    I understand how difficult it is. I do. I never did one of those “heal the gut” diets, but maybe just cutting out the gluten would help as a start. America’s Test Kitchen has a GREAT cookbook out for gluten-free. Do a clean-out of all the gluten first. Then, once you are used to the gluten being gone, then worry about clearing out of nightshades, etc (unless it is a death-causing allergy).

    So go baby steps. Cut out the gluten first, that is the biggie. Find yourself some safe alternatives to gluten products…what do you crave? What do you enjoy?

    I found that the mochi rice cake things are something I enjoy as a breakfast alternative (I wish I could find the chocolate ones locally). I eat too many chips, and too much cheese. Too much dried fruit. But I also do indulge in chocolate, Nutella, etc. I have found I do better in the summer with dairy when I can get the local stuff.

    Then you can slowly move forward with cutting out things… one at a time. Cutting out everything, all at once, is going to make it so much harder.

    What are the kids sensitive to? If you find some good treats for them, that will also help you. Look for vegan and raw cookbooks, it won’t help so much with the soy, and there is still some gluten in some of the raw cookbooks, but they will give you ideas. Good luck. (I miss croissants and filo, that being said, I could never cheat. I have become very sensitive to gluten)

    Reply
  49. 49

    Brian

    I’m 3 months into a Celaic diagnosis and, yeah, it sucks. But you know what . . . there is no easy way to get around it. You just can’t eat what you used to eat, period. And this coming from a guy that LOVED beer. loved it, loved it, loved it. And bread. ohhhhhh, the bread. But – once diagnosed – it’s all in the past. I haven’t touched any of it, and – at times – it certainly has not been easy. Not at all. But, if you want to get better, you just have to do it. As Nike says, just do it. It does take willpower, and preparation for sure. No doubt about it. I drink more water now to reduce cravings. I have noticed that being GF has reduced my cravings for sugar and sweets, so . . . perhaps it all just takes time. But, you can’t cheat and expect to get better – it probably won’t happen. It’s like being on a lifelong diet, with a gun to your head, I know. But . . . you will be MUCH better off for it. Gluten does NOT do a body good.

    Reply
  50. 50

    An Allergic Foodie

    I try not to judge people. We all react to life’s challenges in different ways. I see people every day who have health issues far worse than mine. I’ve also come close to dying two times during surgeries, so I’m pretty happy to be here eating my gluten-free, dairy-free, soy-free bagel! :)

    With that said, this week I posted on my blog about sometimes being in denial about a few of my food allergies, but these are not life-threatening (they’ll just cause me to spend the morning in the bathroom). I am NOT in denial about my celiac disease and I never intentionally cheat. In fact, I usually spend so much time making sure my food doesn’t have gluten in it that I forget about my other allergies.

    I often wish I only had gluten to worry about. It would make eating so much easier for me and my family.

    Reply
  51. 51

    IrishHeart

    We’ve covered this “I can’t help myself, I cheat” thing so many times on here and on celiac.com, that I often wonder if anything anyone says is worth the effort. But I am willing to give it one last go. :)

    I know several recovered alcoholics and addicts of all sorts who will tell you all that threatening a celiac with lymphoma or kidney failure or any other gloom-and-doom “what may happen down the road” if you continue to consume gluten is about as effective as telling them back in the day: “You know, all that booze, coke, heroin, smoking (or just fill in the blank) is gonna give you cirrhosis or lung cancer or kill ya”. It does not work. Period.

    Unless you are hit with something so deadly serious, you think you are bulletproof.

    Bottom line: I do not buy this excuse —

    ” My whole life is food. I know I need to be a good example. Many of you are likely aware of how gluten and dairy effect the opiate receptors. I feel like I need an addictions specialist.”

    Celiac medical experts will acknowledge anecdotal reports of gluten withdrawal but they always hasten to point out there’s no scientific data or research that substantiates the condition.

    Nothing in the medical literature supports a true gluten-withdrawal syndrome, says Guandalini. “It’s hard to account for it.”
    Support for the theory that peptides from certain foods exhibit powerful opioid effects gained ground in the late 1970s. Researchers at the National Institute of Mental Health demonstrated the conversion of gluten into peptides with potential central nervous system (brain and/or spinal cord) activity in 1978. However, the research was preliminary and conducted on laboratory mice, not humans.

    “To date, subsequent data confirming an opioid effect in humans has not been published.”

    You do not need an addiction specialist, hon. You just need to
    stop making excuses for yourself and make a plan. (I know many people with multiple food intolerances and I live with several food intolerances and a histamine intolerance myself, so I am not being unsympathetic in the least. You may think you “need” these foods, but you just “want” them. I want dark chocolate and red wine every night, (who doesn’t?) but the histamine in them gives me symptoms much like a glutening and makes me miserable. So, I don’t ingest them. I find something ELSE that satisfies that sweet tooth craving.)

    If you are continually sabotaging your medically- necessary GF diet, you may have an underyling problem you need to address, yes…. but hon, it’s not “gluten and casein is like an opiate” and I can’t stop myself…. Sorry.

    Make a list of foods you CAN have, create a menu, make a shopping list, ditch the cheat foods…and cut the malarkey.

    Reply
    1. 51.1

      Gemini

      You did it again, Irish! You pulled out exactly what was in my brain and beat me to the punch! Ha, ha!

      I must be the only Celiac who doesn’t think this is a very big deal and I have 3 other AI diseases to boot. I think because we are given the gift of a disease that can be pretty much reversed, if you follow a strict gf diet. Not so with cancer and many other maladies that plague people today. I am so thankful I didn’t need chemo or radiation and am in awe of those who withstand this so called treatment and come out well on the other side.

      I also have trouble with the whole “bread is an opiate” crapola. No… bread tastes good and people eat so much of it they don’t want to give it up. Food is emotional and it’s pure emotion they are feeling, not a heroin-like withdrawal. Plus, you do not have to give bread up. I have found amazing breads that taste every bit as good as their gluten filled counterparts. We also make our own bread in my household. But I am also open to change, good change, and that helps to flavor my responses…..no pun intended.
      I would much rather eat gluten free than be in the pathetic state I was in 9 years ago, its as simple as that.

      I do feel bad for those who struggle so hard to be gluten free but I really don’t understand that. I have a sister who cheats too but she is not officially diagnosed. She complains after how bad she feels but the complaining has become more quiet because she does not get any sympathy from me. She complains around people who enable this behavior.

      Irish’s last sentence pretty much says it all….as usual, very good advice! You just have no idea how good you can feel once you ditch the bad food!

      Reply
  52. 52

    donna

    I don’t get it. How hard is it to say “That will hurt me. No. Not worth it. Not for me.” and then walk away?

    I found out I had a fructose intolerance maybe 10 years ago. It’s rare and hereditary, but finding out that’s ‘all’ it was after generations in my family were misdiagnosed with diabetes because they spilled sugar in their urine, well, made me smile. So I don’t eat fruit. and I feel better. Done.

    Ditto with lactose. Then a couple years ago with gluten. By now I’m on a roll, and it’s just a matter of taking more items off the list to feel truly good.

    Tomorrow, who knows? I’ll find out I’m allergic to the two foods (a slight exaggeration) I can still eat: green beans and potatoes. But so freaking what? My motivation is to feel GOOD and live WELL.
    I’ll figure it out.

    The one thing I won’t figure is that anything that makes me sick is worth it or even tempting. Sorry if this sounds harsh, but I’d equate those feelings to a serious mental issue — that there’s a lot more going on behind the scenes — not a mere craving or lack of willpower.

    A reasonable adult with celiac disease or a strong gluten intolerance would shy away from a slice of pizza as quickly as she would from poison ivy, no? Oooh, I just need to feel the green between my toes! Yeah…yeah, NO.

    Reply
  53. 53

    justagirl

    for some of us, the negative effects of being glutened 1. don’t happen right away, and 2. are worse the longer we are GF.

    what this has meant for me, is that in the beginning – first two years or so after diagnosis – i did not notice any remarkable improvement in how i felt. i mean yeah, there was SOME improvement, but i was used to feeling like crap and eating whatever i wanted. so going GF/mostly GF equated to feeling just a little less like crap but not being able to eat foods that gave me genuine pleasure and comfort. it is very hard to maintain willpower like that.

    the longer i stay 100 percent GF the more sensitive to gluten i become. both a curse and a blessing, that. but i still rarely react immediately. so that means if i’m really tired or stressed i might reach for that same gluteny food that has given me pleasure and comfort in the past. yes, i react more clearly and distinctly now, but it’s usually at least a few days later. so the subconscious connection is not there. it just doesn’t work like aversion therapy for me, as it seems to for others.

    i’m glad for the people who have an easier time eliminating gluten completely from their diets. it has been, and still is, an incredible struggle for me. i’m diabetic besides, and lactose intolerant, and reactive to food dyes, so while yes, there’s food i can eat, there is just so, so, so much i can’t. i have to watch calories, carb-to-protein ratios, overall carbs and the types of carbs, read every single label on every single product for the ingredients that will make me sick, try to function with others who don’t have to do all this, find special expensive foods and make sure i have a way to prepare them when i’m out and feel like a reject while i’m doing it, pay so much more for food i like so much less, and so on and so on. yes, i understand we all go through stuff like this but i just get genuinely tired of having to focus so much on “only food.” it’s not only food. it’s a huge chunk of my mind’s real estate and a great deal of time and effort on an endless daily basis.

    and then sometimes i just desperately need to feel like a normal human being again. and i’ll eat a bagel. because the GF equivalent sucks and i’m a jewish girl from NY/NJ who just sometimes really wants a proper bagel.

    so yeah, i feel for the letter writer, and can give her every bit of sympathy. nothing about celiac or gluten intolerance is easy, or fun. that people CHOOSE to avoid gluten still astounds me. why would anyone willingly do this? those are the people i have no sympathy for. but for one of ours who is struggling? you bet i do.

    Reply
    1. 53.1

      justagirl

      and i want to add… i have absolutely fallen in a relieved kind of love with Gloria and her glutenfreepoodlehome.com site. her GF recipes are some of the most honest, normal and comforting i have ever seen. i look at the stuff she makes and posts pictures of and i want to try all of them. it’s the kind of food your mom would make, homemade and accessible and delicious looking… and safe. and the recipes look DOABLE. for someone like me who doesn’t care to cook and finds it more of a potchke than it’s worth, i’m willing to try my hand at most if not all of her recipes. i wish i’d seen her site years ago. anything that brings me closer to feeling normal is a godsend.

      Reply
      1. 53.1.1

        IrishHeart

        “and i’ll eat a bagel. because the GF equivalent sucks and i’m a jewish girl from NY/NJ who just sometimes really wants a proper bagel.”

        “so that means if i’m really tired or stressed i might reach for that same gluteny food that has given me pleasure and comfort in the past.”

        And that’s your choice, hon. But just know this….EVERY time you do it, you start up the inflammatory response in your body and if you think a bagel (or any gluteny food) is worth it just for the momentary delight it gives you in your mouth
        and justify it with “I am a Jewish girl from NY/NJ”, then you really do NOT get what it means to have celiac. Sorry, but this is just making excuses over and over again.

        And Gloria would be the first to tell you the same thing, I suspect.

        You are equating being “normal” with one food substance.
        I am normal and I do not eat gluten. It’s the new normal, honey.
        Embrace it.

        And if you have diabetes and celiac, you may need help from an endocrinological nutritionist. Bottom line –don’t cheat, hon.
        You are just messing with disaster.
        And this is said with love and concern. :)

        I weep for all of you young people who think you can get away with this cheating stuff. You all need to meet more people in their 50’s, 60’s and 70’s who went undiagnosed for YEARS. It would be eye-opening for you. Really!

        These are people who suffered multiple AI diseases, mental dementia, infertility, miscarriages, kidney damage, cancers of all sorts, chronic pain, neurological disorders, diabetes, thyroid cancer, hair loss, crippling arthritis, lupus, etc, etc. etc. They did not KNOW what was going on until it was too late. YOU ALL KNOW how to AVOID this crap. Yes, you are LUCKY to be diagnosed young. Get it?

        Here is the best advice I can give any young celiac: Grow up. Find a way to get past the “poor me” thing and stop eating gluten. Period.

        Like the Dude says…It’s just food. And there are plenty of GF options to make you happy.

        Reply
      2. 53.1.2

        Catherine N

        I understand completely why you feel this way. Yes, it is a colossal pain being gluten-free. But at the same time, there are more and more options out there. No, no really good gluten-free bagels yet. But you know, feeling more normal is so much better for me than eating out.

        I have a horrible time when I’m with family, I feel like such a nag, because I’m paranoid about wiping down crumbs, about “what did you put in that”, about not eating leftovers because all it takes is one speck of gluten to kill me.

        But would I go back to eating gluten? No. I’m finding higher-fiber, healthier ways to stay gluten-free because that is what I need. Now, I was able to ease into gluten-free, because I stopped eating wheat, and then I noticed I was having reactions to gluten, (spelt, rye, etc) so went cold turkey.

        But at some point you do have to take the plunge. And yes, there have been days when I’ve looked at a pizza ad or something. But I have some comfort food options in the fridge/freezer. I have a strategy for when I am craving cookie dough. (little bit of butter, sugar, vanilla, cinnamon, g-f oats and raisins). Find strategies that work for you….

        Reply
  54. 54

    IrishHeart

    And one more thing

    Anyone who says “I stay 100% GF”
    and then says
    “I cheat”…

    is fooling herself.

    You do not feel well because you are cheating.

    It really is as simple as that.

    Don’t kill the messenger. The messenger is on your side.

    Reply
  55. 55

    Donna

    Nope! No sympathy whatsoever! I was diagnosed in 2009 and have not “cheated”(–and I really HATE the word cheated in this context because its NOT cheating–) ONCE! That is just pure and simple stupidity! I got glutened accidentally the other night (I have NO idea where it came from) and I am paying dearly for it!!!!! If this woman can take the pain, the gas, the bloating etc, etc, etc, then more power to her but QUIT the whining about it. Don’t tell anyone either way—-meaning don’t tell people that you have Celiac and all the other ailments and don’t tell people that you are “eating this but shouldn’t be” ie “cheating”!!!!!!

    Reply
  56. 56

    Carmel Shaw

    I feel for this woman but I have no sympathy for her. Sure a lot of you are saying it must be hard….well boohoo! Of course it’s hard and the more you fight it, the harder it gets. If she has children with food sensitivities then she should already be aware of what to stock in her kitchen. She needs to empty her kitchen of all temptation for starters, and then see a dietitian that specializes in Celiac disease for expert help. Only then will she get stronger and begin to feel free of her addiction to cheating. In the long run it’s best for her and her children’s future with her. Just TRY you will be amazed with the outcome.

    Reply
  57. 57

    justagirl

    see, here’s the thing… i never said it was OK for me to eat gluten food, or for the letter writer or for anyone else. what i said – without judgement, finger-pointing or opinions about anyone but myself – was, i get it. i feel it.

    the letter writer has every sympathy from me. she obviously won’t get it from many here. nor will i, for that matter. but that’s ok.

    my internal struggles with all of this are MINE. and i struggle with it every single day, for reasons you may understand, and for reasons you may not. you don’t know me or my world or the life i have lived in the last 45 years. nor do you have to.

    if the letter writer is struggling with this, for whatever reason, that’s enough for me to say, i hear you. i get it.

    no one has ever said that to me, celiac or non-celiac. and you know what’s funny? overall i am treated better and with more consideration from non-celiacs. at least a good many of them TRY to get it, and can show me some kindness as i struggle.

    kindness to someone struggling won’t kill you.

    Reply
  58. 58

    Constance

    Wow. So many comments. I did not read them all, but I must respond to this post.

    I do not feel harshly about this woman’s feelings, nor do I judge even though I can understand the urge to judge her now that I’ve gone through my “transition” and am in touch with how great it feels to eat organic naturally gluten-free healthy fresh food so much that when I look at the “gluten food” it almost turns my stomach because I know it’s not healthy even for those without gluten intolerance or celiac. The human digestive system does not digest the gluten protein, our digestive systems have not evolved to digest the grasses (wheat, etc.) so why eat the stuff anyway, especially now that modern wheat (and all the substances derived from it) has no resemblance to the ancient grain we think of as growing in beautiful golden fields? It’s been turned into Monsanto gluten, it’s a nightmare.

    My transition came relatively easy for me because I’ve always enjoyed healthy food, BUT I say “relatively” easy because it was NOT easy, and at times is still depressing, especially at social events where there are a dozen things I know would be really safe and healthy for me (like poached salmon, fresh fruit, salad, etc.) but I often do not take the chance because of the Real Bitch: cross-contamination. That’s depressing!

    We all may feel the urge to judge this woman (even just a little bit) because we all know that the fact is that healthy satisfying food is something this woman CAN eat even when avoiding all the things she cannot eat. HOWEVER, I say not so fast, don’t be so quick to judge.

    She says she feels “addicted” but I think what she is really feeling is HOPELESS. The actor who died was Philip Seymour Hoffman, and life was too painful for him for reasons only he could know. After using drugs to escape when he was young, he avoided drugs for many years and then got into the heroin and accidentally overdosed, an easy thing to do as I understand it with the heroin on today’s streets. How unbearable life must have felt for him, for him to take such a risk for some short relief from the pain. I certainly don’t judge him, so I’m not going to judge this woman.

    Life is hard, it just is, and when something makes life harder and isolating, like a diagnosis of celiac or gluten intolerance, then that can push one into a serious depression, and NO, it is NOT “just food.” That’s like saying “air is just air.” Air is not just air, it is essential for life. And when the air is polluted and you get a sinus headache or worse you have breathing difficulties from asthma, then air is EVERYTHING. Tell the alarming number of children developing asthma that “air is just air.” You wouldn’t say that to them, so don’t say “food is just food” to this woman.

    Like air, we need food to LIVE, and when something so essential for life that is supposed to nurture our bodies and our spirits becomes something that hurts us, that is VERY DEPRESSING. You have to go through a process of reshaping your relationship with food, and that is very hard, even if you are single and on your own, but especially difficult if you are living with other people. And if you are taking care of others, as this woman is caring for children, then ALL DEPENDS ON HER, but who is there FOR HER?

    Eating is often enjoyed as a SHARED experience. After learning you have gluten intolerance or celiac disease, and, in her case, other food sensitivities as well, the first thing to go is the shared experience of enjoying a meal with others. Suddenly, you are on the outside looking in while everyone else passes the bread basket. LONELY. And that’s leaving out the endless questions we all get so annoyed about: “Are you really that sensitive? Too bad you can’t enjoy this bread it’s delicious. Oh this homemade pasta is to die for!” (Well, yes, in your case it is you think as you sit there hovering over, guarding really, your [hopefully] gluten free meal you decided to order against your better judgement shielding your plate from the person next to you eating hidden gluten sauce their pasta flicking around on their fork spattering it dangerously close to your plate.)

    So much for the warmth and relaxation of the SHARED EXPERIENCE of eating together. Your stomach is in knots, you’re wishing you were home watching a movie ALONE as you try to fit in, picking at your plate, and WAITING for the whole freaking ENDLESS agonizing experience to be DONE WITH.

    DEPRESSING!!!!

    The shared experience of eating with others is PRIMAL. When you can’t eat what everyone else is eating because what everyone else is eating is poison to you, it is an ASSAULT on a Basic Primal Comfort. Humans are pack animals. It goes back to when we roamed in tribes and sat around the fire eating the beast that was hard fought for from the hunt. Are you done with that bone I think I see more meat on it give it to me. It’s natural and nurturing EMOTIONALLY to SHARE meals. It is an essential part of feeling like you BELONG.

    I’m just guessing here, but maybe this woman is, on a deep level, trying to fill this Emotional Void and Depressing Isolation with gluten food and all the other foods she shouldn’t have because these Forbidden Foods which EVERYONE ELSE CAN EAT now have a Perceived Power to make her feel better, to make her feel like she belongs, and she just can’t say Goodbye to these Forbidden Foods, thus the endless cycle of what she is experiencing as an addiction. She is calling it that because she is stuck in a cycle. She is stuck in this cycle, I suspect because she has no one who is truly supporting her to find THE ALTERNATIVES that we all see so clearly. She has not yet found another way to NOT feel isolated, to NURTURE HERSELF, to prepare food that is TRULY SAFE and truly fulfilling for both herself and her children, and anyone else she wants to invite over for dinner at HER HOME. LET’S HELP HER!!!

    Reply
    1. 58.1

      margaret

      I couldn’t agree more. I am amazed at how judgmental most of the responses are. Even though the mind may know that eating gluten = all kinds of misery (illness) now and down the road, we’re programmed as social beings to look at food quite differently. Not food as poison but food as fuel, pleasure, sociability. Itjust isn’t that easy (having said this, I never cheat, am never even tempted to cheat, but I am depressed a lot of the time, mostly for the reasons that Constance describes so well in her post above).

      Reply
      1. 58.1.1

        Constance

        Margaret, thank you for your honesty about your own feelings of depression. There is really nothing inherently “wrong” with feeling depressed! It’s good to admit it, it’s good to just feel it and acknowledge that we have every reason to feel depressed. Until we ALL (here in this online community) accept this, how can this support community be fully supportive so that we can pull each other OUT of our bouts (big and small) of depression? But our culture punishes those who are depressed, our society gives people drugs so that, what? Others won’t be made uncomfortable by our depressed mood? So that no one has to look at the underlying CAUSE of the depression? We are supposed to be relentlessly optimistic or else be seen as weak, or lacking in self control, or just somehow “lacking.” Nothing could be further from the truth. We are a tough group of people, we found our way HERE after all, to GlutenDude, right? We’re not giving up, we are reaching out. I challenge anyone who must avoid gluten in order to stay healthy to tell me they never feel depressed, that they don’t do nosedives into despair and frustration, at least occasionally, when, for example, they are out of the safe zone of their home, and attending a social or business function and find themselves lying to people to avoid The Conversation because really, that is the easiest thing to say, “I already ate,” or, “I had a big lunch,” whatever it takes. That’s just an example. There are thousands of scenarios depending on who you are and your circumstances. Depression is a powerful emotion, but validation is more powerful. We need more validation, and if we can’t give that to each other, who will?

        Reply
        1. 58.1.1.1

          margaret

          Constance – I very much appreciate what you wrote. One of the hardest aspects of celiac and depression (in my opinon) is the “it’s just food” mantra. “It’s just food” to me means that I am continually being confronted with the idea that there are diseases that are far, far worse. It’s just food – it’s not cancer; it’s just food – it’s not ms. And so on. Close to home, I’ve seen my daughter grow up with diabetes 1 (sometimes not complying with the (then) strict diet, by the way), go to college, medical school, marry, have a healthy baby (!) and at 42, still struggle with the daily routine of blood monitoring and insulin pump. What’s “it’s just food” compared to THAT? It’s hard to truly accept my own feelings of sadness and depression when I see how “easy” celiacs actually have it. I grew up with the idea that you have to make the best of things (my mother would warn me about having FSFY days – they were not tolerated) and acknowleding my right to my own feelings of sadness is tough. Anyway – just some thoughts in appreciation of your posts.
          And for anyone skimming through this longish reply: the “it’s only food” I’m talking about here is a bit tangential to the main discussion that GD raised.

          Reply
    2. 58.2

      justagirl

      Constance,

      thank you. i can’t speak for the letter writer, but that was the kindest, most understanding and most real thing i’ve ever seen written in regard to all of this.

      so much love and appreciation. <3

      Reply
      1. 58.2.1

        Constance

        Thank you justagirl, I appreciate what you say about what I wrote. I think that if everyone were to be completely honest about all this they’d have to admit the elephant in the room: depression at least on some level, popping in and out of our daily lives as we live with this. I believe we don’t like to talk about it because we don’t want to sound “down” to others or ourselves, we don’t want to admit any level of depression especially when we have all worked so hard to get where we are in terms of living gluten free in a world of gluten. But it is a constant threat, the depression associated with having to not ingest gluten when we are surrounded by it. There really needs to more discussion about this. We need to bring this out of the dark corners and shine light on it, constantly, and not be judgmental with others or ourselves.

        Reply
        1. 58.2.1.1

          IrishHeart

          Constance
          I am always up front and honest about anything having to do with celiac.If you know me at all from this blog or from c.com, you know I am honest and open and offer my help to anyone in need. So, I am saying this straight up: I am not “always depressed” because I have celiac.

          I do get frustrated by the lack of spontaneity it brings,of course!

          but I am not going to agree with you that I am secretly ‘depressed on some level” Sorry. Not going to lie about that just to prove some sort of solidarity that you think all celiacs share and just hide from others.

          I do understand that people get upset and saddened about having celiac and the difficulties that it can present. But to live life fully, at some point, you have to get past the sadness and move on.

          I go to weddings, bars, people’s homes and social functions of all sorts. I vett the caterer, I talk with people about celiac without shame or fear they may ask me questions about “why I am not eating”. Most of my friends have learned to cook GF safely for me. We worked together on that one.

          But if someone is continually depressed, then the level of acceptance is not there.

          I am not dismissing anyone’s feelings of sadness! I have had moments of those, too and I have great compassion for someone who is just learning what it takes to live with celiac and being GF….but to use the word “depression”…means something entirely different. That’s a pervasive state and it’s no way to live.

          Celiac specialists suggest some people may need counseling after diagnosis. There’s nothing wrong with seeking help to cope with this disease if anyone continues to feel depressed on a daily basis.

          Coping with celiac is as important as controlling it with diet.

          Again, offered IMHO and no judgement. Just because some of us have a different opinion, it does not mean we are judging or lacking in compassion. I do not like being accused of either of those two things– as it simply is not true.

          Reply
          1. 58.2.1.1.1

            Constance

            Irish Heart, I do remember you, and I remember that we have always been on the same page! I think perhaps we still are, I just think this particular post about this woman has touched a lot of nerves, especially given that her destructive behavior is hurting her children. If she was one of those parents who brought home pizza for the rest of the family, and left their child with celiac to fend for themselves, I would have zero tolerance, in fact I think that would warrant a phone call to child protective services.

            But the woman who is the subject of this post is miserable and in a very dark place, and she seems to be punishing herself enough as it is, feeling like a horrible person which is helping to keep her in this endless destructive cycle. But she is reaching out to this community as she finds herself and her circumstances unbearable. She gains nothing from people judging her, or scolding her, at least we should not assume that scolding and harsh words will somehow translate into a successful “tough love” outcome. Maybe it will, but I think it would be overlooking the emotional place this woman is in, and even if the “tough love” approach worked, it may not last. The underlying depression this woman is suffering from needs to be validated and addressed.

            It is very unfortunate that the word “depression” has evolved to have such a negative stigma associated with it. I blame Big Pharma for that, all those advertisements for drugs to treat people’s “depression.” To watch all those ads on TV one would think the entire population was suffering from clinical depression, or, that everyone should walk around in a state of emotional flatness or perpetual optimism ALL the time. Stomp out that depression, wherever and in whoever it pops up! That’s the message of our society.

            There is a big difference between “clinical” depression and situational depression. Situational depression can be very fleeting, can come and go, or can last for months. It’s a normal part of life. When we grieve a great loss, we grieve for months. If months turn into years, or if grief leads to self destructive behavior, then that’s not a “normal” process. There is also a strong link between depression and anger, but that’s another tangent.

            It’s my opinion that most of us here do not suffer from clinical depression, but at least the occasional situational depression, if only for a brief period, say, when we get glutened and have to spend the day in the bathroom, OR, if you prefer a different word, we get “bummed out” when we get glutened.

            If I replaced the word “depression” with the words “bummed out,” “super bummed out” or “slightly bummed out,” would that help my message? I can understand how the word “depression” all by itself would touch a nerve because many of us, especially before our diagnosis, were told “it’s in your head” or “maybe you’re just depressed.” How infuriating that was! When I got glutened, I would be the first one to jump up and say, “NO! I’m not depressed, I’m SICK!”

            But being sick can be depressing, or at least a real bummer.

            It is also IMPOSSIBLE to “accuse” (your word) anyone of being depressed. The word “accuse” is a declaration that someone has done something wrong, and being depressed, or bummed, or slightly bummed, is not a wrongful act.

            Most all of us have gone through tough times and achieved a hard won level of success, so when we read about someone who is knowingly making themselves sick it is scary to read, and nearly impossible to “tolerate” in any way. This all reminds me of the often true saying that those who are the most harsh on cigarette smokers are the ex-smokers!

            I am not validating the destructive behavior of the woman who is the subject of this post, I am validating the depression that is so obviously behind it. And validating someone’s depression is NOT making an “excuse” for the destructive behavior that results from it (as some comments by others have suggested).

            What I ACTUALLY said in my posts here was that having gluten be like a poison for us is, “at times is still depressing,” and that “[We] have to go through [or have gone through] a process of reshaping [our] relationship with food, and that is very hard,” and, “I challenge anyone who must avoid gluten in order to stay healthy to tell me they never feel depressed, that they don’t do nosedives into despair and frustration, at least occasionally.” Maybe I need to emphasize my words of “at least occasionally.”

            I said that I believe that “depression at least on some level, [pops] in and out of our daily lives as we live with [needing to avoid all gluten to be healthy].” The emphasis here being on “pops in and out.”

            I NEVER said that we are all ALWAYS depressed on some level and therefore should band together into some sort of dark “solidarity” (your word not mine) of our depression, I NEVER SAID THAT!!!

            I NEVER presumed to quantify the seriousness or duration of feelings of depression. I simply said that I believe depression related to our special challenges is a “threat,” not a constant in our lives. I do not see this as a radical idea.

            Depression is a club nobody wants to be “accused” of belonging to, or to have ever belonged to in the past. But depression is not a four letter word.

            I do challenge anyone who accidentally gets glutened and has NO idea how it happened, and as a consequence is debilitatingly SICK for two weeks, to tell me they did NOT, at any point during those two weeks, feel any sense of a loss of control over their daily life, that they did NOT on any level feel DOWN (to use a different word instead of depressed) about this.

            I think that it would validate the woman who is the subject of this post to know that we all have “been there” in one way or another, that we still sometimes hit a brick wall and get knocked down, in a countless variety of ways because none of us have exactly the same circumstances. Only when we share our struggles can she feel she is not alone, and if she feels she has company with this, then and only then will she fully appreciate how we have succeeded in adjusting our lives, and, in many cases, becoming healthier than many people who CAN eat gluten because we have literally “retrained” our bodies, and our minds, to love healthy food. Someone said in these comments that she no longer craves the donuts, etc., and that pizza has lost its “thrill.” I completely relate to that, as that is where I am at.

            Anyone who deals with any health issue must find a new path to live a healthy and fulfilling life. Cancer survivors must live with the possibility that their cancer will return, and there is a lot of support for cancer survivors to avoid staying depressed by this, but first their depression is validated. Why should “depression” be a forbidden topic for us here? Damn, I feel like I’m swearing saying the word “depression” in this forum.

            All I am saying is that by not acknowledging the depression that clearly has overwhelmed the woman who this post is about, and anyone else suffering in any similar way to ANY DEGREE AT ALL, then we are sending the message that any level of depression is somehow “wrong” and a sign of “immaturity” or “weakness” and that is a destructive message to send; it is a message that keeps other people who are battling their own depression in the closet and in the dark. I’m suggesting we open the closet door and say hello to those people who hide their feelings for fear of judgement, and let the light in and say, “You are not alone.”

            Anyone who has achieved a life without even an occasional “depressing day” because they got accidentally glutened must have gone through an incredibly successful process of complete recovery. A person like that would have a lot to offer to people like the woman who is the subject of this post. It seems to me that if a person like that exists, they would feel so confident and unthreatened by the woman who is the subject of this post that they would have nothing but empathy and useful unbounded support for her.

            I am saying that before her physical healing can begin, her emotional healing must be addressed, and the first step should be to validate her feelings.

            We don’t know anything about this woman. For all we know she is on the verge of suicide, and the last thing she needs at this early stage, and for HER this IS an early stage as she is still in a very destructive place, the last thing she needs if she is at all suicidal is a lot of people lecturing her AT THIS POINT.

            Maybe she has been stuck in this destructive place for a long time, and time is running out on her health. But for her to reach out by writing a letter to GlutenDude means she is taking an important step. Who are we to dictate a timetable to her? She first needs understanding and some empathy, she needs to feel this forum is a SAFE PLACE EMOTIONALLY. If she cannot feel safe here, she will not listen to any of us, and then she and her children may possibly hit bottom in the worst possible way.

            If you want to help a self destructive person, you first have to make them feel safe and validated. To accuse this woman of “whining” as some have done, is heartless. She’s not in a room with us, we can’t see her, but we know she is consciously hurting herself and her children, and that she is in emotional agony because of this, and that means she is in a very dangerous place. We have a responsibility as compassionate humans to tread carefully, to give her the gift of empathy.

            If this woman who is the subject of this post makes someone angry, and all they have to give her are words born from anger, then maybe they better play it safe and bite their tongue. It seems to me that this is exactly what GlutenDude has done, and yet he is a very compassionate person and therefore handed this woman’s letter over to us rather than ignore her.

            Reply
  59. 59

    Gemini

    No one is judging anyone here. Seems that today, when you say anything that isn’t all unicorns and rainbows, people get all upset that people are being judged. When you admit to cheating on the gf diet and say that you cannot help yourself, that just doesn’t fly.

    As far as food being a sharing experience, you can still participate in that experience and bring your own gf food to eat while others eat their gluten filled counterparts. Complaining that you can’t eat the exact same food as everyone and feeling deprived to the point that you may cheat, makes me ask whether you are 12 years old or an adult? I would expect that behavior from children, not adults.
    I do not tap into primal feelings when I see others eat food that makes me sick. I am relieved to know what my problem is and only too happy to eat different food that keeps me well. Any situation can be resolved with a solution but not if you are still resentful over the Celiac diagnosis.

    Reply
    1. 59.1

      margaret

      I share your feelings in theory – but you make it sound a lot easier than it is. What strikes me in reading the various posts on this blog is how different celiac is for different people (since the “medicine” (no gluten) affects life style, following such a tricky diet affects people in different ways, depending on age, etc.). I was diagnosed very, very late (at age 63) and was getting sicker and sicker around the time I was diagnosed (but nothing like as sick as some of those here); looking back, I also can see that I had silent celiac for years. I mourn for my past – easy-going – life style and I even mourn for the fact I (once again) have to worry about dietary restrictions (our daughter was diagnosed with diabetes type 1 at age ten (in 1982), when a diabetes diet was super strict. I spent years checking every label for sugar and now do the same for myself with gluten.). Stupid? yes. Depressing? yes. I don’t cheat; I live a full life (lots of travel) and I CAN cope. But – to get back to the original post: lack of compliance is an acceptance issue and an issue of how to deal with grief. Obviously her solution is not the right one, but a bit more compassion for her struggle would be welcome.

      Reply
      1. 59.1.1

        margaret

        Just a second thought and a more direct reply to Gemini (it was early where I live when I wrote my reply and our beloved cat (who had multiple protein allergies himself – NOT gluten – but almost every kind of animal protein, including mice) had died on Friday evening: I don’t see how you can say “nobody is being judgmental here” when some posts contain remarks like “you are being lazy”. The general tone is pretty harsh. Maybe a better analogy than the addiction one (which the original poster used herself) would be a schizophrenic who refuses to take his or her medication. There must be some pay-off for this woman in NOT complying with a gf diet and I can only fantasize as to what it might be. Some thoughts: family structure? (I am not like the rest of my family; if I deny this I can keep my role as nurturer); past history (my mother made me eat my vegetables and now I can decide myself, etc.) Etc. It’s kind of paradoxical that a post like this one in a blog which is so great in supporting us would elicit such responses. It’s the first time I’ve thought: hey, this is WAY TOO simplistic. And now I will shut up.

        Reply
        1. 59.1.1.1

          IrishHeart

          Hi Margaret,
          Terribly sorry about your kitty. :( My sympathies.

          I’d like to add a different perspective to the conversation, if I may?

          I *think* some of us posters like Gemini (who was unwaveringly supportive of me after diagnosis and has since become a friend, BTW–and there is no better GF cheerleader/mentor,IMO ) are less likely to be “okay” with cheating of any kind because they just do not understand why anyone would not do the ONE thing that will make them feel well.

          These are the people who spent a lifetime not feeling well and who almost died because of celiac. We are GRATEFUL to know what we have and to be alive.
          I am in this camp.

          I am sympathetic to a point about the mourning process and the food. There was no bigger foodie than me. I’m a gourmet cook, we traveled everywhere and dined on everything.

          I still do most of that…but it just takes a bit more work.

          Just knowing my husband, family & friends were so worried for those last 3 years before my DX because I was nearly incapacitated ….was just as difficult as my own agonizing pain. I wanted to be well for them as much as I wanted to be well for me.

          If nothing else, this woman has a young family to think about.
          That’s bigger and far more important than whatever gluteny thing she feels “she has to have”.

          I have to think this issue is not really about the food, but about what is making her sabotage her health and her family life.

          Reply
          1. 59.1.1.1.1

            margaret

            Hi Irish Heart. I think in your last sentence you hit the nail on the head. I’ve spent most of today (I am six hours ahead of the east coast) pondering this issue and why it bothers me so much. I can’t imagine anyone not being compliant with gf (horrible and depressing as gf/celiac may be at times) either; nor can I imagine anyone refusing medical treatment (chemo, for example) for cancer (although some people do). So – the issue must be a much broader (psychological) one than what I suggested in my first (reply) post; it’s not even an acceptance issue; it’s pure self-destructive behavior. Anyone with these tendencies needs all the help she (or he) can get; my objections were to the general moralistic tone of some of the earlier posts (and sorry if it sounded as though I meant Gemini! I did not). Thanks for your sympathy about our cat (I could always have a laugh with him: Tiger, if you eat mice you get REALLY itchy pimples; if I eat gluten I get REALLY sick. I’m not entirely sure he got it but he was a good audience).

            Reply
          2. 59.1.1.1.2

            Gluten Dude

            Perfectly stated Irish.

            Reply
          3. 59.1.1.1.3

            Gemini

            Very sorry to hear about the kitty also. I am a huge animal person and have laid to rest many of my “kids”, so I know how hard that is.

            As for my comments, I am somewhat like you Margaret….diagnosed in my mid-40’s (younger than yourself) and,without any BS here, I nearly died from this disease.
            I weighed in at 94 lbs and was losing 1 pound per day…..I had hit crisis point. The suffering went all the way back to my childhood and I ended up with an emergency appendectomy at the age of 8 and that was the first close brush with death. The Celiac diagnosis was the second, so my perspective may be very different from someone who wasn’t as close to the grave as I was.

            It really does not matter what the issue is with those who cheat and say they cannot stop. That is for them to work on and closing the door on that and eating food that could eventually kill you, and making excuses on a Celiac forum site is bound to give responses you are not going to want to hear. Constructive criticism is not being judgmental. All I am reading, for the most part, is whining and excuse making. As IrishHeart stated, that is acceptable for newly diagnosed Celiac’s but to continue to bury your head in the sand and make excuses is annoying. My family does this…none of them wanted to hear I had Celiac Disease because they ALL have symptoms and associated conditions.
            I have been treated badly by them, at times, because they are angry about it. Why they should be so angry at my disease and how I handle it is their problem. This is what has given me a thicker skin and the ability to adapt well to change. Honestly? I never found going gluten free hard. There are reasons for this, good ones, of why that is. But slowly dying was much harder than going gf and gaining my health back. Is it more work? Sure, but I am not a stranger to hard work so to me, not too much of a big deal. I wish it could be like this for everyone but it isn’t, I know.

            As they say, whatever doesn’t kill you makes you stronger and it’s really true. I just choose to be positive about things because it’s much easier to do that for me than wallowing in self pity.

            Reply
            1. margaret

              Thanks Gemini. And I am very sorry that your family has shown so little support.

              Reply
  60. 60

    IrishHeart

    oh dear Margaret–I think our pets “get” more than some people give them credit for.They are pretty intuitive on many levels. I am glad to have my Bella. (sending hugs on your loss)

    And again, to reiterate to all:

    MY comments were said with compassion…with a side order of “giant kick in the ass” because ultimately, what we ingest (drugs, booze, food, cigarette smoke, etc) is our responsibility. No one else’s. You can’t blame others for your own failings.

    Want to live a healthy life? You have to dump the crap that makes you sick. No excuses. I’ve seen people recover from all sorts of addictions, even heroin.

    This is just one stupid food protein we’re talking about!
    If you need support, we’re right here. No better support group than the celiac community. But not one of us should be saying it’s okay to cheat.

    Here’s the thing that perplexes me: People are so quick to get all belligerent about “possible cross contamination” and “demanding our rights from food companies and restaurants” etc….

    …well, what good is any of that rhetoric if celiacs are just purposefully dosing themselves with the very thing that kills us?

    Reply
  61. 61

    Catherine N

    I do “get” what people are saying. If worst comes to worst, find gluten-free junk food. I think some of what is so overwhelming for this woman is the multiple food allergies/sensitivities. And if you feel crappy and overwhelmed then it is even harder to make changes.

    So my suggestion, again, is baby steps. Eliminate the gluten first.

    Don’t worry so much if the diet is as healthy as it should be. Eliminate the gluten, get used to that, then worry about eliminating some of the other stuff as you start feeling better and finding good substitutions.

    Reply
    1. 61.1

      Constance

      Good suggestions! Baby steps is what the woman the post is about needs to hear. You’re giving her tangible things she can do, and this can only help. I agree about the GF junk food. It can be a means to a better way, as I wrote in response to Theresa.

      Reply
      1. 61.1.1

        Constance

        And I forgot to add this: You make a very good point so many others seem to not be taking into consideration. The woman this post is about has MULTIPLE foods she must avoid. How overwhelming under any circumstances. How anyone can judge her so harshly I don’t know. Eating gluten free is hard enough for a newly diagnosed person, but to have to avoid all those other things all at the same time makes it especially difficult.

        Reply
        1. 61.1.1.1

          IrishHeart

          When a celiac initially has multiple food intolerances, like dairy, corn and soy, eggs, etc (and I had/have multiple food intolerances myself) , they often resolve after the gut heals.

          Giving up gluten ENTIRELY may very well turn all that around.

          But she has to do that first. heal the gut = get well . (which is what we are all saying)

          Reply
          1. 61.1.1.1.1

            Constance

            This is a very encouraging and useful message for the overwhelmed woman who wrote the letter in the post.

            Reply
  62. 62

    Theresa

    I’ve been thinking about this post, and what I wanted to say. To my knowledge (I’m not about to suffer gluten infestation to find out) I don’t have celiac but I am definitely NCGS. To a degree I understand where that poster was coming from. Before I discovered all my issues where gluten related I struggled with constant desire to eat. Like a junky I would think about food ALL THE TIME. I am overweight but not extreme – I think the only reason is that while I would think about eating, logically I didn’t want to be that person they had to take out a wall to get out of the house! I knew that even If I wanted to eat more than one donut, it would be really bad to do. What is interesting, is that once I when gluten free, those cravings and desire to eat have diminished. I’m wondering if the poster is going through that fear of giving stuff up like an alcoholic not wanting to give up alcohol. Like many others have said, ease into the GF life, what I did to feel ‘normal’ and that I wasn’t giving anything up was make GF brownies or GF chocolate chip cookies, or have a GF pizza – no these are NOT HEALTH foods, but for me it totally eliminated the feeling of being deprived. Maybe she needs to take that approach – after the gluten starts to get out of your system the desire for those things begins to diminish – I don’t make brownies or cookies very often anymore and pizza has lost it’s thrill too…. and most important, is when I go somewhere that has a bakery case full of gluten filled items, while they may look “pretty” all I really see are things that will make me feel like crap – and that pretty much takes any desire to have “just a taste” right out of it. I did go through a phase of wondering if maybe I was imagining that gluten was really a problem, then I got accidentally glutened – from that beer that “has the gluten removed” (rolls eyes). Dang, it hit me like a brick. That’s all it took to never want to be gluten infested again. I wonder if the poster hasn’t really experienced the great feeling of feeling so much better by not having any gluten (since she is still cheating) that she hasn’t been able to make that real comparison – sort of like that old PSA this is your brain, this is your brain on gluten.

    Reply
    1. 62.1

      Constance

      Theresa, I completely relate to all you say here. I too am NCGS (gluten intolerant). I also went through a phase of eating gluten free donuts, the frozen kind that taste so good after slightly warming in the microwave. I also ate barrels of Glutino GF pretzels, and other GF simple carbs. This carbo-crave phase lasted a long time, maybe a year, and maybe it was a phase I had to go through. At least I didn’t gain any weight, but I didn’t feel that great. It was good to read that you went through the same thing! And coincidently I also recently had a bad experience with a so-called gluten free beer! lol.

      It’s a good suggestion for the woman this post is about, to suggest to her that she eat gluten free versions of the junk food, at least to start with that, IF she can afford it, as a way to not feel “deprived.” Because what happened to me was that after awhile all that junk just started to feel physically bad, yucky, and my mind-body reverted back to my earlier, healthy ways. When I see people eating regular pizza, just the smell of it, it really turns me off! Besides, the wheat in the dough of todays pizza is not the wheat in the dough of yesterday’s pizza, thanks to Monsanto. It looks like glue.

      Reply
  63. 63

    justagirl

    so now people who slip are crazy or mentally disordered? self-destructive? depressed? compared to junkies and alcoholics? must be masochists because we are so unbelievably cavalier with our health? jesus. no judgements here at all, hahaha.

    (pshh. but it’s all out of compassion! behavior modification via shaming and insults – done with love!)

    i prefer the term “HUMAN,” with all the screw-ups and longing and sadness and desire to fit in and feel normal that implies.

    maybe avoiding gluten isn’t YOUR struggle, but i bet you’ve got something you struggle with. what derogatory terms or insults can i use to make that better for you? let me know, k?

    Reply
    1. 63.1

      Constance

      Justagirl, well said!
      I’m trying to be diplomatic in this forum, because as you point out, everyone struggles with SOMETHING, even if there really does exist A Person For Whom Gluten Is Poison But Who Has No Issues With That Because They’ve Got It All Figured Out, and, in their opinion, anyone who doesn’t is whining, or lazy, or needs therapy. It also helps to have friends who cook gluten free, or a spouse who cooks gluten free for you, or the time and energy (meaning not being sick) to spend in the kitchen cooking gluten free. How much do you want to bet that the woman who is the subject of this post has NONE of those things? I would be in a state of complete ecstasy if my husband cooked gluten free meals for me!

      Reply
    2. 63.2

      Gluten Dude

      I think ALL of our responses are born out of compassion, just expressed differently. I for one, sincerely FEEL for this woman because she is struggling mightily. At the end of the day though, giving up gluten is really not that difficult. It doesn’t mean I cannot empathize. I just think some people need to hear the truth.

      “You want answers?”
      “I want the truth.”
      “You can’t handle the truth.”

      Reply
      1. 63.2.1

        Constance

        Gluten Dude, I do think, at its core, this is a very compassionate group you have here, and we’re here because of you. When you ventilate your own struggles with a humorous post, that is a wonderful validation and release for the rest of us! Nothing is as powerful as humor. In general, life would be rather unbearable without humor. I do think this woman that is the subject of this post really cannot handle the truth, at least not yet, so I agree with you there. It is incredibly sad and frustrating for anyone who cares, and that’s just about all of us here. But she does seem to know how wrong her actions are for herself and her children, or she wouldn’t feel so miserable and guilty about it. Not everyone has a support system of caring people to get them through the early phases of living without gluten and beyond, and some people are very fragile. We don’t know what her financial situation is, what her daily life is like, or what other stresses she is faced with. “The human mind can only stand so much” to quote Bob Dylan. Some people can do crazy things when they are overwhelmed, and this woman is obviously overwhelmed. I just think the “buck up and deal with it” advice needed to be balanced with some validation that it can be a very overwhelming thing for many people to adjust to, and even at the end of the day there is no perfect foolproof solution, or none of us would ever accidentally get glutened now and then. To tell this woman it’s an easy thing to do is a well intentioned attempt to assure her that there is Life After Gluten, but to say the transition is easy, is well, not exactly true, or it WOULD be easy for her too. Someone here suggested that this woman take “baby steps” towards change, and I think that’s the sort of advice that will make it all less intimidating for her. I hope she “joins” us here and has not been scared off. It would be terrific to help her through this. She is not alone.

        Reply
        1. 63.2.1.1

          margaret

          Thank you Constance for this post (and all your other ones). You have beautifully expressed what has been on my mind for the past ten days or so.

          Reply
  64. 64

    IrishHeart

    So much to address :)
    and I will use the word “you” and “we” in the editorial sense here so no one feels singled out. I am just talking with the “readership”.

    The truth is: for all of us, our good health is in our hands.
    Not our parents’ hands, our spouses’ or the people on the internet.

    We decide what goes in our mouths. We could speculate endlessly about what this woman’s circumstances are, but I know many celiacs who live alone, prepare their own meals and go about living their lives. So, saying “maybe there is no support” is just another excuse for behavior that is detrimental to good health.
    Conversely, I had a lovely friend –who had a loving spouse,a family and tons of supportive friends–choose to die rather than continue living with the aftermath of what long undiagnosed celiac and gluten had done to her body and brain. Tragic.

    The vast majority of celiacs have never visited a forum or blog or counselor or worried about where the support will come from. They took their “prescription” of a GF diet from their doctor, read some information and adapted.
    This is not rocket science.

    I never said anyone was whining. I never said a transition is easy either. I said : you have to adapt to live a full and happy life.

    My compassion for the newly diagnosed is huge. I took great pains to write the NEWBIE 101 thread on celiac.com that is for people who are struggling. I answer emails on a daily basis. I help people in ways you cannot imagine….wait a sec….why am I even explaining all this? Oh, I know….maybe because I am tired of hearing people say “you are not being compassion”…why? because I will not endorse cheating–which in essence, is killing yourself with gluten? Because I say “learn to adapt”?
    Why? that’s the key to getting well!

    Most people who feel well do not visit forums because they do not need the help. So, why do some of us hang around on here and on celiac.com? Because we’re the ones who care about those who are struggling and we want to help!

    All of the people who posted here offered various ways for COPING, yet a few of you are angry because we have said: above all else, learn to deal and stop cheating. Period.. We have compassion. We gave our acknowledgement of the struggle and we said; Stop doing that!!. That is not ” judging”; that’s just the truth.

    Here is the harshest reality of all:
    Anyone who continues to ingest gluten by cheating will NEVER feel well. The body remains ill and the brain is impacted. FOR MANY PEOPLE, gluten PROVOKES anger, defensiveness, anxiety, depressive thinking and loss of control because they feel like shyte.

    This is what I see many times on here: people who are still so angry and depressed because they are in a continual state of denial and ingestion of gluten. Some are paranoid about leaving their homes. THIS IS NOT LIVING.

    I suggest the book REAL LIFE with CELIAC DISEASE by Melinda Dennis and Daniel Leffler to everyone reading this blog. This disease should not isolate anyone. IT IS ONLY FOOD. If you do not have irreparable damage like many celiacs who went undiagnosed for years and if you have eyes, ears, legs that work, a roof over your head, and food in the fridge, you’re lucky.
    Stop being ridiculous about wanting a donut or a bagel.Eat a GF one and be glad you are alive. If any family member or “friend” gives you grief about what you eat, tell them to bugger off. :)

    As for me, I lost enough time to devastating illness from this disease before diagnosis and I choose not to lose another single minute of it feeling sorry for myself (or any of you either) because I can’t eat a “real” bagel.

    Only you can decide how much this disease will control you. You have to gain control over the disease.

    Or be miserable and angry about it for the rest of your lives.
    Choose wisely.

    Peace out. Cheers, love and best wishes to all.

    “Life is what we make it, always has been, always will be”. –Grandma Moses

    Reply
    1. 64.1

      GottaSki

      Good Morning Irish my friend!

      Together “we” have typed many words to many folks with CD and NCGS….I do believe your post here today should be added to your “Newbie 101” on celiac.com. I regularly suggest the thread along with the book ‘Real Life with Celiac Disease’.

      Yet, while we tell those transitioning to their new gf life that the learning curve is very tough…perhaps it would be wise to add your post to let all people learning how to adjust that….at the end of the each day….they are in charge of what goes into their mouth. Yes, I would love a world that is safe for us…and I believe that day will come….until then we continue to do our best to navigate this gluten filled world in which we live.

      I’m not a regular on GD…so for those of you whom do not know me….I am five years post celiac diagnosis. My family and I have been thru hell trying to reverse the damage four decades of undiagnosed celiac brought to my body. I am no where near full speed…but every day will continue to do all I can to improve … some days I fall short…on those days I simply go to sleep with one simple thought: I will try again tomorrow.

      Thanks again Irish…for all you do for so many : )

      Reply
      1. 64.1.1

        IrishHeart

        EVERY DAY IS A HEALING DAY, kiddo. ;)

        Reply
        1. 64.1.1.1

          Camille

          LOVE – LOVE – LOVE — “Every day is a healing day” – 2.5 years in and I still say that to myself every single day!!!

          Reply
          1. 64.1.1.1.1

            IrishHeart

            I heart you, Miss Camille. :)

            Reply
    2. 64.2

      Gluten Dude

      I’m framing this and hanging it on the wall!

      Reply
  65. 65

    Lima Bean

    Seems to me that , if you can avoid all these foods “I cannot eat dairy, any grains, nuts, seeds, eggs, soy, or night shades. ” you should be able to avoid the one that you have actual real medical tests saying you should not eat – gluten. You chose not to eat all those other foods but the one that you are told you must avoid for legitimate medical reasons – gluten- well… that is the one you fight against. Might be something for you to think about.

    Reply
  66. 66

    Constance

    When I use the word “you” in an online general discussion I always mean it in the general sense, perhaps I should have written “one” as in “one should be understanding.” I would never single anyone out.

    And just to be clear, I believe that EVERYONE who has posted in this thread is more than qualified to weigh in and make a useful contribution. No one needs a degree in psychology or medicine, or any degree at all, to qualify. Everyone here has been through their own personal struggle with celiac disease or gluten intolerance, and that is all that is necessary for them to have something to offer.

    It seems that some people here believe I am being too soft on the woman who is the subject of this post and I cannot understand this. I never said her behavior was remotely acceptable.

    What I said was, “”I just think the “buck up and deal with it” advice needed to be balanced with some validation that it can be a very overwhelming thing for many people to adjust to, and even at the end of the day there is no perfect foolproof solution, or none of us would ever accidentally get glutened now and then.”

    It seems I have to keep quoting myself to clarify the misunderstandings of my words.

    If taking the hard line at the very start with sick celiacs who refuse to eat healthy is ALWAYS THE ONE AND ONLY SUCCESSFUL APPROACH to pulling them back from the brink of self destruction then by all means that is the only approach any of us (the general us) should take.

    But based on my own experience with helping others, I have found that one must take into consideration the individual’s frame of mind when deciding the manner in which one delivers support that will move the person away from a self destructive direction.

    I believe there is time and place for the hard line approach, and I have myself delivered very hard line messages to people WHEN I FELT THEY WERE ABLE TO TAKE THE MESSAGE IN. I am not convinced the woman who wrote this desperate letter is able to hear the hard line approach at this particular time. Maybe she is, but if she’s not, she will feel judged and she is already judging herself very harshly.

    When someone (like the woman who wrote the letter in this post) relates in a strong emotional way to Philip Seymour Hoffman, an actor who was an addict who DIED at his own hands from an overdose of heroin, that sets of an alarm bell in me that says, “Tread carefully, this person is very fragile.”

    If someone is on the roof of a tall building standing on the ledge, the last thing I’m going to say is, “Buck up and take responsibility for your life.” I’m going give that person all the warmth and compassion I can to talk them down. I might say, “think about your kids,” but I would first make sure the person wasn’t about to jump because they were overwhelmed by motherhood.

    To suggest that I am supporting self destructive behavior is just crazy. I have spent years helping people who are overwhelmed with medical issues. I don’t answer emails from strangers. I deal with people face to face. Having worked in the legal field of malpractice and personal injury, and having had many years of experience with the medical industry at all levels, I have counseled countless people to get the help they needed and guided them through the maze of the industrial medical complex. Just getting some of these people to see a competent doctor, or any doctor at all, is often a great challenge. When someone sticks their head in the sand as their health deteriorates that is just as self destructive as this woman’s behavior.

    All the responses here are valid, including the ones that take a very hard line. Let me repeat again what I actually said:

    “”I just think the “buck up and deal with it” advice needed to be balanced with some validation that it can be a very overwhelming thing for many people to adjust to, and even at the end of the day there is no perfect foolproof solution, or none of us would ever accidentally get glutened now and then.”

    Showing empathy towards, and validating the FEELINGS NOT THE DESTRUCTIVE ACTIONS of a person who is struggling to confront their health problem is not the same as condoning their destructive behavior. It is the FIRST STEP towards helping the person accept the truth of their circumstances.

    Reply
  67. 67

    Donna

    I worked with a girl with type 1 diabetes. Routinely, she would end up in the hospital because she ate candies or cakes or cookies. It was hard to be sympathetic after a while, knowing she was eating a family sized bag of M&Ms knowing she’d go to hospital afterwards. She is dead now. She died at 42 years old. Perhaps she is enjoying chocolates.

    Same with any allergy – peanuts gonna kill you? Don’t eat them. Gluten gonna destroy your intestines and curl you up into a ball after you crap you brains out? Don’t eat it. There are substitutes, some of them really tasty (tho probably not good for you either). Its the price you pay.

    Reply
  68. 68

    Ken

    GD, I have been reading a couple of your posts and would like to commend you on your work.

    It seems to me that people with celiac disease really can’t stand the people with a sensitivity to gluten who decide to eliminate gluten from their diets to become healthier. I completely understand that the disease is nothing to mock but why all the hate towards people who may be trying to do it for the right reasons.
    Read an article about this at glutenfreethin.com

    I am just curious to know how you guys feel about this…

    Reply
    1. 68.1

      Constance

      Hi Ken, you are a keen observer. I thought I was imagining it, but now that you have spoken up I can just say this. I have sensed that at least some people with Celiac disease do not take NCGS (non-celiac-gluten-sensitivity) all that seriously. I have NCGS and my doctor is one of the top celiac specialists in the world, and I can tell you that HE takes my NCGS very seriously. I know that Celiac disease is much more immediate as the damage to the small intestine is extremely dangerous, and there’s the higher risk of cancer, and so many other very serious issues. I would not want to trade places with a person battling Celiac. But frankly I find it very alarming, and scary in and of itself, the fact that experts know very little about NCGS. There is definitely some serious inflammation going on when I get glutened, and that’s just the inflammation that makes me sick for up to two weeks, what about the “silent” inflammation? I don’t avoid gluten to be “healthier” I avoid it to not be sick. I look at my “healthy” friends, and they don’t look so healthy and their diets are very high in gluten-containing foods. One of my friends gave it up for a brief period and his psoriasis went away. But he couldn’t stick to being gluten free and it came back. To my mind, his skin was telling him something very important, and he ignored it. I fully support ANYONE who gives up gluten to be “healthier” because I really think it is an underlying cause of many other illnesses.

      Reply
      1. 68.1.1

        Ken

        Hi Constance,

        I also have NGCS and have decided to go GF completely on my own. Nobody else has advised me to do so. Not a doctor. Not a dietitian. I am doing this for myself!

        I am big into fitness and keeping myself in shape and have dieted more times than I can count. The main goal being to lose weight and build muscle. In the past I have limited the daily intake of carbs to a cup of oatmeal or just one piece of bread. I usually try to incorporate a high protein, low fat, low carb plan into my diet. This has worked wonders for me. I have also been able to shed unwanted weight from doing this and working out. However, I knew that something else was missing and that there was no way that this would be the best I could feel.

        When I began learning more and more about Gluten and what it does to the body, I figured I would give it a try. I mean, what is the worst thing that could happen? I have been gluten-free now for 5 months and couldn’t be more pleased with the fantastic results. I have eliminated my “wheat belly”‘ and just feel full of life and energy. I used to get heartburn every single day and had to take medication to alleviate it. Heartburn? I don’t even remember what it feels like!! I haven’t had it since going GF. Simply amazing.

        It is refreshing to see that some of you aren’t so turned off by us NGCS’ers or the ones who are simply doing this for health purposes.

        I wrote an article that I would like you guys to check out:

        http://glutenfreethin.com/?p=16

        Big thanks to GD for the awesome symptom chart!

        Reply
    2. 68.2

      Gluten Dude

      Not here Ken. This community supports anyone who gives it up 100% for health reasons…whether it’s celiac or NCGS.

      Reply
      1. 68.2.1

        Ken2

        Thanks GD,

        I am starting to see that and it is quite refreshing.

        For some reason I often find that celiacs are just so bitter towards people who are trying to be gluten free. But it is great to see that some of you support the decision!

        I changed my name to Ken2. Hopefully that clears up any misunderstanding :)

        Reply
  69. 69

    IrishHeart

    I am a huge supporter of celiacs and NCGS-ers alike.

    My own Mom is NCGS and she is thriving now– off gluten. She could run circles around all of us! :)

    Reply
    1. 69.1

      Ken

      That’s not me, just so you know. I think I need to change my name.
      And I have a few NCGS friends as well, and some others who have described similar symptoms as to what I have. I nudged (re: pushed; in one case drove) them to see a doctor ASAP.
      I keep coming back here because it is a supportive community of people who get what I’m going through. My friends, while pretty amazing, just don’t get it sometimes. I’ve also learned as much here as I have from my doctor and nutritionist (who are both great).
      My problem is with the gluten free as a fad folks, and with those spreading misinformation.

      Reply
      1. 69.1.1

        IrishHeart

        I know “my Ken” from “other Kens” . lol

        “My problem is with the gluten free as a fad folks, and with those spreading misinformation.”

        amen!

        and there’s a WHOLE WORLD of misinformation out there.

        I spend hours “myth-busting” and I am getting exhausted.

        Sometimes, it’s like shoveling back the dessert sands with a fork…

        :)

        Reply
        1. 69.1.1.1

          Ken

          “I spend hours “myth-busting” and I am getting exhausted.”

          It’s appreciated. What you, GD, JE, and everyone standing up for those of us who have this insane disease do, means much more to me than I can fit in a little text box on the internet.

          Reply
          1. 69.1.1.1.1

            IrishHeart

            Ken,
            “Hearing” you say that makes me happier than I can fit in this little text box on the internet! ;)
            It’s not been a great week and on those days when you wonder
            “geesh, why do I bother?” someone comes along and tells you why.
            Thanks, little brutha.
            xx

            Reply
      2. 69.1.2

        Gluten Dude

        Yep…knew it wasn’t you Ken :)

        Reply

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