Repeat After Me: It's Only Food

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.

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.

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).

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.

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.

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.

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.

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.

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!

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.

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.

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.

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?

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.

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.

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.

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)

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.

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.

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.

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!!!

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?

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.

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.