Hi folks. Before we kick off today’s post, a few quick Dude notes.
– Writing a blog post takes time and my time seems to be at a premium right now. So bear with me (or bare with me…which could also be fun) while my blogging pace and commenting has slowed down.
– I’m pretty active on Facebook and sometimes it can be a quick and dirty way for me to connect with the community. If you are not following me, please give it some thought. Here I am.
– I want to give a huge shout out to one of Mrs. Dude’s friends from childhood (you know who you are). She reached out to Vitamix, told them the health history of both Mrs. Dude and I and especially what Mrs. Dude is going through now, and Vitamix actually sent us one of their mixers. I am beyond grateful and I look forward to many frozen margaritas….I mean healthy smoothies and soups.
Ok…on to today’s post.
I got a great question yesterday that really got me thinking.
But in the celiac world, so many seem to talk about degrees (I guess they are talking about symptoms – ?).
Why does one celiac tell me that it’s not a big deal to eat at a buffet when the chef has said no flour was used — and all current literature says to take no such risks. Fear? Avoiding reality? Laziness??
We take no risks. Fair to say “old school” celiacs (?) seem to think that’s extreme? Would love your thoughts.
Well…I’m as old school as they come now. But let me take you back to the day I was first diagnosed, before I knew anything about the disease, except that I had it.
I remember distinctly telling Mrs. Dude that I cannot promise that I will never cheat. And boy do I remember distinctly the (well-deserved) evil eye she gave me. I had lost 15 pounds the previous year and wasn’t well and now I’m telling her I still may have gluten?? Yeah…I don’t think so.
And no…I have never cheated once.
But here’s the deal. Many people don’t have a Mrs. Dude in their lives. They don’t have a support system which I find so important with this disease because celiac is with you every second of every day. Every choice you make about what food you put into your body now dictates your health.
And when you are first diagnosed…it’s life altering. You start to think about all of the things you can no longer have. How your life is going to be so inconvenienced now. How you are losing so much freedom to just “be”.
And even though there is a ton of information out there about celiac (in addition to a ton of bad information out there…yes I’m looking at you Gluten Free Society), denial is a powerful thing.
And sadly…I believe many celiacs never get past that stage. Whether it’s a lack of discipline, a lack of a good support system or simply a lack of caring about themselves, they will fudge things.
They’ll trust Bart’s Gluten Free Cookies, even though there are amazing truly gluten-free chocolate chip cookies out there.
They will drink an Omission Beer, even though there are now a handful of amazing gluten-free (not gluten-removed) beers on the market now.
They’ll harass a waiter or waitress all night long about needing to be gluten-free and then for dessert, they’ll have a gluten-filled piece of cake “just this once”.
Honestly, I have a pretty low tolerance for these kind of people. Like second hand smoke, they are not only affecting their own health, but the health of the entire celiac community, who will get taken less seriously, which increases the chance of getting glutened, which increases the chance of a lot of other health issues as well.
So in answer to your question “Why is the celiac community divided?”, it’s because people come in all shapes and sizes. Most will give the disease the respect it deserves and some won’t. It’s really just a microcosm of the society at large.
It would be so awesome if all celiacs were on the same page so I don’t have to hear comments like “My friend has celiac, but she doesn’t have it as bad as you so she cheats sometimes.” as I bang my head against the wall.
But that’s not reality. All we can do is take care of ourselves and do our best to educate those around us.
Hopefully I’ve done a bit of that today.
63 thoughts on “What Kind of Celiac are You?”
I don’t understand the ones that cheat. I have never cheated, not once and I have never been tempted to do so.. I am terrified I am going to get glutened! 3 years post to finding out I have CD and I am still have gluten nightmares. lol I had one last night – I was eating saltines(of all things). I woke up in a panic waiting for the vomiting and crippling stomach pain to start. The only conclusion I can come to as why someone would cheat is they must not have severe symptoms. The kind that make you feel like you are dying a horrible death, like most of us have when exposed to gluten. I can’t even fathom someone cheating if they had the same reactions I do to even a tiny crumb.. For me it is like the worst case of food poisoning, the worst case of the flu and a really bad hangover rolled into one- that lasts for weeks and that is from cross contamination. I can’t imagine how bad it would be to cheat with a whole piece of bread or a roll. I’d be in the hospital fighting for my life! If I wanted to kill myself I’d choice a far less painful method .lol
Why would someone do that to themselves on purpose?
I feel people “cheat” for a few reasons. Undereducated on how severe Celiac Disease truly is, denial, stupidity, lack of caring about their future health (or their children’s future health), weakness, depression, and more. The thing that frustrates me the most are certain parents who do not have Celiac, but a child does and they don’t take it 100% serious. Someone one time said they allow their child to have the Eucharist (or whatever non-Catholics call it) at church and that her daughters faith in Jesus protects her so she never becomes sick from it. Seriously! Come on lady, you’re damaging your child’s intestines!!!! In the name of God…really! There is where stupidity comes in. If you want to risk your own health, that is one thing…but your child’s health? That is where I have a problem.
I, personally, do not cheat. Why would I want to chance becoming unnecessarily sick and causing internal damage? As for others, we can lead a horse to water
Ahh, Holy Communion. I made that mistake (just didn’t think about what it was) on Reformation Sunday last year. (No, I’m not a regularly-practicing Lutheran, but Reformation is a big thing.) I was sick for two weeks and didn’t realize why I wasn’t feeling well until a week after I ingested the thing. When I told my mother about it, she told me that something so small shouldn’t have made me sick for two weeks. Thank goodness I’m an adult and can make my own decision about this. I’ll take my health any day.
The communion wafer thing is tricky, though I have found that Protestants are a lot more forgiving about this than Catholics. For most Prots (and I don’t know if Lutherans are among this group), it’s the symbol and not the actual content of the “bread”. For Catholics, the wafer *must* have wheat in it (which means, yes, having celiac disqualifies you from the priesthood unless you”cheat”). There is a convent in Missouri that specializes in making “low-gluten” wafers (whatever the **** that means). Most churches I’ve attended, if they accommodate at all, either use a Crunchmaster cracker or a brown rice thin.
Educating is your super power Dude! Thank you for using it. I am a no cheater ever. Thankfully my personality is that of a no risk taking, rule follower. If I want to “cheat” I eat a whole bunch of Jennifer’s Way cookies as my dinner. Hey, they had raisins and that is “fruit.” Intentionally eating gluten is not an option because I have no desire to add anything else to my list of health issues resulting from nutritional deficiencies due to celiac.
First off great post! I love that you mention that we come in all shapes and sizes. I have celiac and an eating disorder. As I am working to recover from the eating disorder sadly I have sometimes “cheated”. It drives me crazy as I try hard to be an advocate for Celiac awareness. A blessing in disguise has been that because I do care about how my treatment of having celiac and being gluten free effects the rest of the gluten free community I have become much more open about my eating struggles. Which is helping tremendously in my treatment. So another benefit of all of you in the gluten free community is some accountability as well as support!
Just back from vacation, so have been living outside of my usual routine (was going to say bubble). That’s correct, you have celiac disease or you don’t. From that point on, the symptoms do vary but the damage happens just the same.
I too have never “cheated”, meaning knowingly eaten food containing gluten but initially I did wonder how much was too much. For me, the reactions are swift and nasty to seemingly minute amounts, so I don’t have to wonder at all.
There is no way that I would even consider eating a gluten free brownie, baked in a small, artisan bakery where wheat flour abounds or gluten free bread baked in a huge industrial bakery that doesn’t state whether it’s produced in a dedicated facility. Simply being “gluten free” isn’t enough.
As with any gathering of human beings, Celiacs will have differing opinions. Don’t even get me started on the posers. I can honestly say though, that by and large, the Dude community is supportive and well informed.
I don’t cheat. Even when eating out I try to be as careful and explain as much as I need to.
My doctor is always surprised when she looks at my blood work. Apparently she has other celiac patients who cheat regularly. Feeling the way I do now, compared to before my diagnosis? I can’t cheat. That would be stupid.
I have never cheated but have gotten glutened by foods that were labeled gluten free. Now I try to only buy certified gf and made in gf facility. As far as restaurants it is like playing russian roulette so I steer clear of eatting out as much as possiable. I have just recently realized the ketsup i use at home is the source of my recent poisening. Yes poison that is what it is like getting sick.My face gets extremly red sometimes with the dh rash oln face elbows and knees. then the fatigue that no words can explain that lasts anywhere from few days to few weeks. why would anyone even in a brain fog want to put themselves thru that willingly? I can not even get into the fad diet folks or the roll the eyes people over my disease as i will completely explode with anger. Do what you needs to be done to keep yourself healthy and ignore the jerks that haven’t a clue about the damage that takes place in our bodies. agree about you either have celiac or you don’t it’s not a part time disease but one that you must be ever mindful about with each morsel you put in your mouth. thank you Dude for looking out for all of us. Best to you and Mrs. Dude I hold you all in my heart and keep you in my prayers.
I know Celiacs who do cheat and they have a variety of reasons:
“I’m too old to change my ways” — said by 2 (TWO) people I know and it disgusts me
“I don’t mind feeling bad for a little while” – well I do
“I don’t have a reaction so I don’t know when I’m cheating” – how nice for you. I puke for 7 hours.
“I don’t every cheat” – says the woman who then eats off a buffet plate.
I cheated once – two months after diagnosis when my grandmother passed away (I know what they say about excuses….). I then learned all the risks of cheating (my nutritionist told me I could cut corners…. the Celiac world was veryyyy different in 2003) and never cheated again. It’s just not worth it. Saying no to a delicious looking dessert, I’m sad for maybe 5 or 10 minutes tops. Getting diagnosed with a cancer that could have been preventable, I’m sad forever. We might not all develop colon cancer if we cheat, but I don’t want to find out…
I can say I cheated once when I was first diagnosed, but I was in the third grade and didn’t fully understand. Since then though, I have never cheated and never will. I don’t get people who do. If I were to cheat I would end up in the hospital and out of work and school for days. It baffles me that people would risk their health for some thing that has a great replacement that is gluten free. I must say I just don’t get it.
Yeah I get so frigin’ sick, I can’t even imagine cheating! Even in my dreams sometimes I am going to cheat and then I’m like ARE YOU NUTS NO WAY. Why go through that utter hell? I am sick for 4 days and unable to move, and vomit over 30 times! It is very violent. Maybe the people who cheat don’t get such violent reactions. If I didn’t have reactions, I would probably cheat for some Peking duck or dumplings. Although I do thing another component is respect for your own self and body and self-sabotaging behaviors .That’s a whole other blog 🙂
I can honestly say that I’ve never knowingly cheated. However, both my daughter and myself have definitely been glutened by supposed Gluten Free foods.
We have a massive immediate reaction if we do get glutened.
I have to wonder that even though 5 – 20 ppms are allowable depending where you’re from, that if its enough to create a reaction.
Also, I’ve had this argument before, but I do believe that you can be glutened from sources like conveyor belts in a grocery store or simply by walking through the bakery aisle….risking minuscule unseen gluten particles on clothing, shopping bags etc. Obviously being fastidious in the cleanliness department, anything is possible. Unfortunately I smoke a few cigarettes a day, simply getting gluten on your hands unknowingly can easily pass straight into your mouth. Guess quitting altogether would be an idea lol.
You’re thoughts on the ppm issue?
Hi Cat. As I’ve said, celiacs need to be careful, but without living in fear. Miniscule particles should not hurt us. And until somebody in the celiac medical community says differently, I will say that 20ppm is ok for us (consider that’s a very small amount).
I am all for being safe. I am extremely careful. However, I think being afraid to walk down the bread isle in the grocery store is over kill. We can’t live in fear.Would I handle a regular loaf of bread ? – no I would not. I also have reactions to gluten touching my skin. My husband is a mailman but recently took a part time job delivering pizza to make some extra money. At first I worried about him handling dough or flour and getting it on his clothes as a result risking gluten being brought into the house that way. He changes his clothes immediately when he comes in and washes his hands and arms.. So far it is not been a problem.
@gluten dude. The for your input.
That is…Thanks for your input lol
Now that’s the Gluten Dude I was impressed enough with to follow. No celiac should knowingly cheat but living in fear isn’t the answer. Be as gluten free as you possibly can but don’t torment yourselves or your family and friends. You’ll find yourselves alone if you do. I know if I’ve gotten gluten because all of my symptoms are of the digestive variety. Besides the obvious digestive upsets, the majority of my problems came from malnutrition. You can’t get the type of malnutrition I had simply by walking past the bread in the grocery store. It took 33 years for me to be as sick as I was. That is the only time I was truly bedridden from having celiac. The Dude’s pet peeve is one I share. I can’t stand to hear it called celiac’s disease! I really don’t like to hear it called poison either. It’s a perfectly good food for a lot of people…just not those of us who have an intolerance to it…
This article was just featured in the new “Celiac Central” Flipboard E-Magazine! Check it out:
There might be different degrees of damage due to some not being diagnosed before 50 after a lifetime of symptoms, and varying symptoms amongst Celiacs due to different areas of the intestine being damaged in different people causing some to have different symptoms of nutritional deficiencies, but one thing is for sure. Celiac is Celiac. And anyone who doesn’t take it as a serious disease, which indeed can cause death, should get a wake up call. I have never cheated and wouldn’t think of cheating. I am one of the ones who hasn’t healed completely after being gluten free for 14 years. I don’t eat out, unless I have absolutely no choice, and don’t eat anything that hasn’t been made in a gluten free dedicated facility. I think the answer to the question, “why is the Celiac community so divided?” is because we all have our own belief system that allows us to live our lives with a degree of safety and security. Some people can sky dive and say there is absolutely no risk to doing that. Some fear walking out their front door for fear of getting hit by lightning. But the one thing that the Celiac community does not have is a 100% proven and definitive guide on how a person with Celiac can stay safe in this world. There is a TON of misinformation, and a lot of people believe the various forms of it because of their personality type. Are they risk takers? Or people who prefer to be overly cautious in the way they live?
I agree with this…and I think one of the basic divisions within the community of celiac sufferers is the willingness to add back risk as healing happens and wellness starts to return. Risks like eating out, eating some foods that couldn’t be tolerated earlier on, and such. Some of us just do so more easily. This is of course different from “cheating”; it’s a division within the non-cheating group (which I assume is the predominant group).
When getting info. &/or advice from someone with celiac, one might want to ask if he/she eats out, and how often have glutenings occurred. And how long have you had a dx, and how are you doing? What’s your lifestyle and your healing status please, if you will? What place are you coming from, what’s shaping your life strategy? It could get a wee bit personal and intrusive…but knowing which division the info is coming from could be of help.
We guide ourselves through our personal celiac experiences by taking in a lot of info., and assimilating it in our own way. There’s no definitive guide for us, that’s true. Maybe some day there will be a guide, and a fairly definitive one, but it won’t be able to tell us how risk tolerant we can be, and how safe we will feel at various levels of risk acceptance.
Well, sure we have a definitive guide. As my doctor would tell me, we can live on an island that’s at least one windstream away from the mainland, grow all our own food, use no makeup, use all natural cleaning products, and not allow anything beyond natural wood, cement, and vintage recipes for paint.
But that’s not going to happen LOL. (I think my doc was kidding. I think… 😉 )
There’s a difference between being “completely safe” and exercising what I call “reasonable precautions”. I haven’t been glutened in over a year, even though I eat out for dinner once a week and use some gluten free prepared food, and I eat ice cream and chocolate at the local candy/yarn/ice cream/coffee place every Friday. I’ve worked with the restaurants and yarn stores to take as many precautions as they can, and help isolate issues that might be a problem. And I work hard to fight any misinformation I find out there, and I update myself regularly on what the latest changes are in products (seriously, I just debunked someone from thinking Dr. Pepper had gluten…). By arming ourselves with knowledge and the practices to keep ourselves as safe (as possible) with reasonable precautions, we can live a life that will be as full as possible while only occasionally biting us in the butt.
The “fear” I think is the biggest issue dividing us in the community, as you mention. There are those of us who believe as I do, that reasonable precautions are fine, some that believe only safe is safe, and some that believe that they can eat whatever the heck they want and suffer the consequences. Its the differing levels of fear that manage each type of person’s life (fear managed, fear dominating, and fear lacking) that we need to understand to help people improve their situation.
In 16 years with celiac disease I have gradually gotten more and more support from my family and with locally owned restaurants who I now know well because I have made friends with them as I “train” them how to cook for me. At this point, my husband, two grown children, and their families are all GF after various levels and ways of being tested for celiac disease. I am really surprised at the number of doctors who refuse to test family members for celiac. Family dinners are quite lovely when you remove the gluten factor. Most of your posts make me think, “That is what I was thinking” and I am so grateful that you said it first. Then all I have to do is share it on FB! Thanks, Gluten Dude, for reading my mind!
I, too, don’t understand the cheaters. If I cheated I wouldn’t be able to leave the bathroom for days!! Nothing is worth the pain, the feeling of being sick for 24-72 hours, and without saying the hell I go thru!! I am not even tempted!! I am afraid to try a new restaurant, even when they say they have a gluten free menu. Sometimes I get sick and I haven’t left my house, so I go nuts trying to figure out what I did!! My poor husband…for a quick meal we go to Chipolte, because they are VERY careful, and I have never gotten sick!! I think he is getting bored with the place, but he is supportive of me!! Getting “glutenized” as I call it, wrecks havoc with my body, so no cheating, ever!!
I don’t cheat with anything I am certain has gluten in it – no interest in getting sick, been 2 years since I was last glutened and very happy about that.
I do handle my daughter’s gluten bread (mommy poison as we jokingly refer to it) in a very specific area of our kitchen and LOTS of handwashing. We have sets of cooking utensils for gluten and gluten free stuff to avoid cross contamination.
Buffets are a grey area for me. It really depends what the venue is, dishes surrounding things I would eat, and how I feel about the information I get from staff. I have had buffets I have eaten at with no issues whatsoever and others that I decided not to partake in due to various concerns.
We have a local pizza place with hand tossed pizza (so there is flour in the air), but they prepare all their GF pizza in a completely separate dedicated area and they have awesome pizza. I know there are some that probably could not tolerate the possibility of airborne flour, but since I a) feel ok and more importantly b) my bloodwork comes back clean, I personally feel ok eating there.
I have also drank Omission on a few occasions with no issues. I feel good and my last 3 blood tests were all great (I even got the green light from my GI Dr. to go to 2 year monitoring as long as I don’t have any issues). I think overwhelmingly we all need to know how our bodies react to different situations and use some common sense. Does that mean I would EVER eat a piece of gluten cake – HELL NO, but I will continue to listen to my body and monitor my blood work so that I can remain healthy.
I think a lot of it depends on how sick you were when diagnosed, or how sick you get when you ingest gluten. I won’t ever knowingly cheat, but then again I was pretty sick last year when I got diagnosed. I also know my reaction to trace gluten isn’t pretty.
That said, my new GP has a husband and a child with celiac. Her husband almost died from it as a toddler and to this day walks with a limp due to the nerve damage he suffered. When I went for my annual checkup last month she asked me what foods I missed the most. Of course pizza was on that list. When I said it I swear she looked straight at me and asked “is there a Domino’s near you?” In disbelief that she would even suggest it, I answered “no, but even if there was I wouldn’t eat there because they flat-out tell you it’s not safe for celiacs.” She did a lot of backpedaling on that one and said it was only occasionally that she’d let her daughter eat there and that she really had trouble getting her husband to not cheat on the diet in front of their daughter. Maybe he was so young when he got diagnosed that he didn’t remember the pain – he’s been gf almost all his life. The girl is asymptomatic so that I understand more, but it just goes to show you that some take it seriously and some don’t. All we can do is take care of ourselves as best we can and keep educating those around us. Someday it may finally sink in. 🙂
I cheat because im on disability and according to the government my husband earns to much for me to receive food shares. He just barely makes over minimum wage, to where we have to even choose what bills to pay @ times. Ramen noodles are what we usually live off of, unless of course my family helps us out in putting food in our fridge and/or freezer. Its either that or there are days you choose to not eat. my husband can eat anything, if it came down to it. Im the celiac and at the gluten free prices (or) even the prices just for meat alone. Sometimes, you have to eat, just to beable to eat and survive. Deal w/the consequences later. Financially not every person has the means or capability to “do right” by themselves. Ps . . . my husbands company he worked for, just folded. So now. he’s unemployed and food shelters, still look at your bracket of pay and most do not carry expensive gluten free food. Sometimes in life, your just tossed about and left fighting for what you do have. and for a last, not the main reason, but still one more answer for you. most gluten free food tastes as it looks, nasty. Only thing I found to have liked is pillsbury gluten free cookie dough and chocolate chex. I have tried alot of breads and they just arn’t normal. Dense and gritty and you should not have to freeze bread. My husband is the first guinea pig taste tester, I go by his expression and then I’ll nibble and generally spit it out.
You should be able to find affordable food that is gluten free without ever setting foot in the “gluten free” section of the grocery store. Rice (brown is going to be more nutritious), beans, and quinoa (sometimes you do have to shop around for this, I’ve seen prices vary widely) are easy affordable staples that are naturally gluten free. Also get the on sale produce for the week and try to stock up on things like chicken breasts while on sale and freeze for later. A salad with chicken can be a filling lunch or dinner. And don’t forget eggs, which have lots of protein. Canyon Bakery has a decent 7 grain bread I’ve just stumbled on, but I do fewer and fewer sandwiches these days. You should also check with your local food bank, often they have programs in the community even if you don’t qualify for “food stamps”. Ramen noodles are literally poisonous to your body (besides being pretty nutritionally devoid and have excessive amounts of sodium). Make a big batch of soup with dried beans and whatever produce that is on sale and freeze in batches.
I thank you for the advice. I w/ advise you in that I am allergic literally to all fresh fruit and lentils, alot of beans, lettuces, nuts, onions, peppers, seasonings, lactose intolerant, fresh potatoes and multiple, medications and other food. Im practically down to eating cardboard. I have kidney stones, so my nephrologist said not to consume alot of meat and no rice. I have a nephrologist, gastroenterologist, obgyn ( from adhesions and my hysterectomy ), allergist, urologist, internal medicine (primary care provider), I end up in the er alot from throwing up and dehydration and the kidney stones. So, hard to shop. my allergy test says im allergic to beef, but I do not seem to react yet. also have an allergy to all sulfates. gi said no multivitamin, nephro says otherwise. So, I dunno.
You sound a lot like me. Food is my enemy. With the gastritis and Gerd everything hurts. Dairy kills me and eggs and now gluten. Anything leafy green hurts so I eat alot of chicken and sweet potatoes,English peas, green beans and gf oatmeal. And way to much peanut butter. I crave it badly. I drink only water. But after three years I’m use to it. I hate fish and not a big beef eater. I do eat ground flax meal daily though. I feel for you. It’s not easy. I do drink aloe Vera juice daily. It soothes my stomach. Bu it could always be worse. I’m on the top side of the dirt.
Oops. The dirt part came off sounding wrong. Should be it’s always good to be on the top side of the dirt.
And for me, oats, whether certified or not, will cause me to feel like I have a hangover after eating them for a few days and peanut butter kills me. Some Celiacs do still have issue with the avenin in oats so maybe oats are affecting you more than you know. Just a thought.
That’s what I’m afraid of on the oatmeal. I just don’t know what else to eat. Smoothies don’t cut it and eggs are out. I don’t have a big imagination for figuring it out. And rice and corn products hurt due to the graininess. Ugh
Having been homeless, dirt broke, and on food stamps myself on occasion (not all at the same time, unfortunately!), I understand completely. But, I do want to challenge you that things can be better for you. Rice noodles are as cheap as ramen in ethnic stores, and coupons can get things like doughs and sauces for cheap (check out the Hip to Save blog, she’s paleo but often highlights gluten free products, I don’t know where you live, but if your in IL/IN check out the Mashup Mom blog, her son is allergic to wheat and she often focuses on gluten free products just for that reason. If you can find a blog that does the couponing work for you, doing the planning can be very easy and save you boatloads of cash.). Amazon’s subscribe and save can get flour blends for often way below the market price. I think the most I paid for a four pack of Bob’s Red Mill AP flour on there was $5, and that bakes eight loves of bread, which lasts me for weeks. And Aldi’s new gluten free flours and products are much more affordable than elsewhere (I’m really hoping they drive down prices!). And I practically lived off polenta w/cheese and oatmeal for awhile.
Have you heard of Leanne Brown’s “good and cheap” cookbook? It is not gluten free but most of the recipes if they aren’t already gluten free can easily be swapped for gf products. Her savory oatmeal is amazing and comes out to only 75 cents a serving. And dal is fabulous and only 60 cents a serving. If you don’t have it already, you can download it for free.
I read your follow up post about your puppy being euthanized. My heart goes out to you – losing a pet is the hardest thing in the world, I think. They’re just like kids. But I want to remind you to do the gluten free thing all the way – it can actually make depression worse around a traumatic event like this, and that puts you in danger.
If you were around where I live, I would show you where to shop around here, because we do have places that are great for low income folks with gluten issues, and often have classes and other free resources for folks who need help even without being in the poverty level category. My advice for you is to start asking around – there’s nothing wrong or shameful about taking plants off people to get vegetables, working deals with friends to split low cost items at Costco or Sams, and knowing how to coupon severely (even at Walmart). And often you will hear about events, support groups, and churches that can help you along the way.
You CAN do this without going back to the gluten. We’ll be thinking of you. Please keep posting and let us know how you are. I put my blog link in this post – if you have any questions or need help, please don’t hesitate to message me there.
Thank you for caring. I feel alone so much in life and my only way of coping is not coping w/ it at all. Due to the physical pain im in daily, I take pain medication. It really helps me to do daily functions, but it also stops me from feeling. I guess I avoid alot in my life. Husband and I are gonna be married 10 years in october, im 32 and I dunno if I can even care about that. Just not a happy person. But I so thank you for caring. I w/ keep yall updated. Thank you again.
Thought I would follow up w/ one more comment. all those other reasons still apply. Though I w/ also admit to being an emotional/stress eater. I do not let anything or anyone get to close to me. I have been sick since a tot on, though worsened in my teens. I’ve been bullied by kids, teachers and regular adults and so called friends at the time. I’ve been abused in relationships and assaulted. So, I distanced myself. I bought a puppy in 2006 and let my guard down just for her, I credit her for saving my life. I just had to use euthanasia for her. Full blown seizure w/I was home alone w/ her and she went into an attack right in front of me. She is what for 8 years, kept me going and breathing. She understood what was going on and w/I was deeply depressed. She held me back from giving up myself and giving into life. She’s gone now. Her brother is still w/us. But. It begs to ask the question . . why should I care anymore, w/the one thing in life that I loved the most and had a huge bond with, got stolen from me ? There is your handful of reasons for cheating. Give or Take a couple. Ps. I had a surgery that prevents me from having children. To me, she was my child and my little girl. She is pure angel.
My heart goes out to you. Please know you aren’t alone. Life IS tough and having Celiac can make it tougher. But there are people who care. A whole bunch right here.
Katie, I am sending you a cyber-hug and just said a prayer for you. Please keep asking for help and stay true to your gf diet. You are worth it!
Praying for strength peace for you Katie. Hugs being sent.
My sister, my mother and I have celiac disease but I’m the only one who takes it seriously. It’s been hard to drop the gluten, a real struggle getting to the point where you’re comfortable with being gluten free.
I agree with your post completely. There was that transition stage where I felt robbed, thought about what I couldn’t have all the time and lamented it. I went to school to be a baker for heaven’s sake! It took over a year to commit completely and plenty of mistakes before I got down the habit of checking, rechecking and building up a skillbase and knowledgebase to make my own gf things competently.
The hardest thing me is that my celiac doesn’t manifest with severe reactions. Some gas, a little discomfort. Boy it’s easy to just ignore those symptoms and enjoy crusty French bread or chocolate cake. But I know what it does to me and the danger it possesses. I do not cheat. I love myself and my body too much to kill it that way.
My sister and mother refuse to give up their gluten, though after a miscarriage and me explaining to my sister that it was very likely due to not managing her intake safely it had happened, she is willing to try. It’s terrible to lose a baby and a wake up call. My mom won’t even try… ugh
Now I have 2 babies. They’re likely to have celiac as well so we’re all gf. My husband even joined in willingly. I do have a wonderful collection of gf baked goods that will knock your socks off so none if us feel like we’re missing anything. I’m glad to be giving my baby gf breastmilk just in case and my toddler is the hardest. At home it isn’t s problem, but people are always trying to give her free cookies or something at stores. I have her screaming because she gets told no and she doesn’t understand why.
That is so awesome about the Vitamix, enjoy your Margarita smoothies! I have never cheated and never will, since finally getting a diagnosis, after decades. I am one of those very careful folks. I won’t eat processed GF food (and don’t eat much of that) if made on shared equipment or even, with a few exceptions, if gluten is in the facility at all . Also nervous about eating in restaurants and only if I have to. Another aspect of celiac that unnerves me, is all the different opinions (has anyone ever listened to some of those various gluten/health summits, or read websites?) of what it takes to be healthy, and heal intestines. You have to eat meat! No, it’s ok to be a vegan! GF grains are ok! No, they are bad! And the whole leaky gut thing. Do or don’t eat…fill in the blank… food. Take vitamins! No don’t! Take this or that test in this time frame! No, you can just heal on your own. All of the “experts” say something different. WHEW. I don’t know what to make of it all, the only thing I know is not to eat gluten. So no, no cheating here.
I agree Vik. We have no definitive truth. And for the ones who can’t give up the social aspect of “normal” eating, for whatever reasons they may have, I think there is a tendency to believe that being super cautious is ridiculous.
As a very sensitive person, my trouble comes from gluten free foods that tempt me. I don’t mean pears. I mean the urge to have some gf ice cream or try a non-Tito’s gf vodka sample at the liquor store. While I’m practically a fascist about what I eat, there are times when I won’t be able to resist a particular brand of gf cheese*; and hope I don’t have enough to start itching.
*(Andrew&Everett, swiss only)
But to quote the upside down Michael Palin in The Life of Brian, “you lucky bastards!”
It’s always shocking to me that people cheat with the foods that make them SO sick! Seriously, I’ve had dreams where I “forgot” I can’t eat gluten and ate bread (it’s always bread…ha) and I wake up in a panic like it was a nightmare. Who wants to sign up for feeling like death for the next 3-5 days? Crazies!
I do understand the whole no support thing though. That is very tough in the beginning for people. Now the majority of our family, even extended family members have discovered they cannot tolerate gluten and even dairy. Amazing to me considering when just a a couple of us several years ago found out we couldn’t eat gluten and the family was nasty about it! Eye rolling, saying it was ridiculous, it even made some of them angry, as if gluten was a group narcotic that two of us had chosen to stop doing and ruined all the fun. Now those same people are feeling like hell and had to stop too. Love how that works sometimes. 😉
Hopefully I won’t get chased off the site for saying this, but we need to keep in mind that GF does not mean no gluten. FDA’s rule for GF is a 20ppm limit. In establishing their standard FDA considered lower levels, but reasoned that being too strict would perversely wind up help fewer Celiacs because a very tough standard would raise prices and also make it uneconomic for food companies that just miss on a 5ppm test. But as it is food makers aren’t even required to test every batch, though FDA will test a product if people complain about it.
The question of why people cheat may be framed as a moral one, but don’t forget that you’re mostly likely eating a little bit of gluten in your GF cookie. This may scare some people.
(it is not publicly known what standard, if any, FDA will set for drug products, should it decide to make them GF. )
There are a lot of good comments on here. I just want to add that I have known a lot of celiacs in my 2 decades since being diagnosed and I also work in health care. My observation is that people who get really sick when they eat a tiny bit of gluten seem to have a little easier time sticking to the GF-straight-and-narrow road than people who show no symptoms. It is just a little easier to put long term damage out of your mind than it is to put on the pot all night out of your mind.
I absolutely agree, Gloria. I know I’d be hard to convince without the symptoms I have. Thanks for pointing that out.
I fall into the “never cheat” category. But…in the beginning I did not take cross contamination as seriously as I do now. I felt like such a bother, like I was the most annoying person on the planet and I hate feeling like I am the center of attention. I felt so much better when eating gluten free at first that I missed the subtle signs of accidental glutening. The longer I have been gluten free, the glutening symptoms are easier to recognize and I take cross-contamination very seriously now. Even if I am not doubled over in pain, I realize that it affects me and my health. The hardest one was when I gave up french fries when eating out. I ate them for awhile and finally realized that they were the cause of some of my continuing symptoms. It was straight up cross contamination. I can see how it would be harder for someone with no or very mild symptoms might struggle with this. It was a process of learning, growing, and healing for me and my belief is that being an “old school” celiac is the only way to be. I hope struggling celiacs come to the same realization for their health and for ours.
My daughter was dxed when she was five. Two months after going gf she ate a cookie at a school party (I was unable to attend) she was so sick for days that she decided that she was NEVER going to cheat again.
Three years later there is the occasional cc issue. I’m still learning and she started a new school so there are some issues there that have to be worked out there.
Loved this. Myriad discourses compete within the Celiac Community. That is why the FREE collaborative text emerging from this site is sure to help so many!!! Love Life yall.
I have never cheated. Got my diagnosis…cleared out the cupboard. Designated a kitchen area for Evil Gluten. (why should my husband suffer?) Two things of butter, jam, etc. Two toasters.
I have always taken cross-contamination seriously. And the ONLY “pot luck” I attend now is the one my friends do every Easter…and they let me go first and I don’t do seconds. I’ve been glutened a few times at restaurants…and it always makes me furious. Because I *always* ask and preach and…yeah.
It’s a drag. But not as much of a drag as the neuropathy in my feet and hands. (Associated with CD…but causal? Who knows? Stupid immune system.)
Good news? If you travel to Europe and make your needs known…they take *really* good care of you. Ate at restaurants for 10 days straight…in Germany, Switzerland, and France…didn’t get glutened ONCE.
Yesterday was my 1 yr anniversary of being gluten free. I went GF to see if it would resolve my plethora of symptoms. I’m not a diagnosed celiac but believe I either have it or was on the verge of it developing (more on that). In that time I was accidentally glutened from that stupid beer dude mentioned,(that sucked and made my plantar facitis flair up that led to me tearing a muscle while stretching my foot, that led to having to wear a boot, and finally a cortisone shot 4 months later- now it’s better!) Then once I did it to myself. I was taking photos for a client that has dessert and fried batter mixes – and I decided I had to “sample” the items (at this point I still did not suspect celiac – only gluten intolerance). The next day I was bowing to the porcelain god and as a result it triggered my geographic tongue – that I didn’t realize I had. So started doing further research and had a genetic test done. I started to really suspect that I had celiac. I figured no gene, no celiac, no problem. The results showed that I have the DQ8 gene – common in southern european people. My dad is Italian and has all kinds of health issues. I believe now that he has celiac – but I can’t get him to listen or to get tested. So now I know I am at risk whether or not the intestinal damage has occurred. After the last incident I refuse to cheat – and if the thought even enters my mind within seconds I’m remembering that date with the porcelain god and that pain in my foot and the thought goes right out of my head! I went to my GP Dr with all my info and findings and gene test and was told how celiac is really rare and his few patients that have it have DH….. blah blah blah…. I did have blood tests done to rule out thyroid which came back normal – so glad to know I don’t have thyroid issues…. so the symptoms all came from gluten. I refuse to do the gluten challenge and get sick just to risk a negative result that may or may not be accurate. So I live as though I have celiac. I could almost understand people cheating that don’t get the typical symptoms because it “seems” to them like it’s not a problem, but for those that are in agony when they get glutened I can’t understand why cheating would be worth it. And I do have a question…. Why why WHY do some GF breads and mixes contain inulin????? I understand its for fiber but that stuff is known to affect people – even people who can safely enjoy gluten, so why put it in things that are supposed to be made for people that already have serious digestive issues?????? I had to find out the hard way what inulin does to me….. it’s not fun.
GD, I have to say, I made a similar promise when I first went gluten free. I wasn’t sure I could do it. And to this day, I feel its accurate. Would I cheat? No, but I don’t know what situations might come up in the future.
I mean, if I get offered to eat a slice of bread for twenty billion dollars, I might think about it 😀 Or if someone’s going to get killed if I don’t eat it…Or maybe the world’s going to blow up unless I eat the gluten filled trigger…
never say never, I guess is what I’m trying to say. What counts is the resolve that we have not to cheat willingly without extraordinary circumstances.
Celiac disease is black and white. Either you have it or not, only the symptoms vary. I have been gluten free for over 40!!! years and yes, I have ingested mostly accidently gluten in those 40 years. I am one of the lucky ones to have been diagnosed as a baby and grew up on a gluten free diet. I had to bake my own breads, as gluten free bread was not available anywhere back then. I never had to struggle with leaving “favorite foods” behind.
About 15 years ago, when celiac disease was still fairly new to US doctors, a US/NY doctor performed a blood test and biopsy on me and came to the conclusion that I did NOT have celiac disease. Since I had not really kept up with the latest news about celiac, nor the celiac community, I decided to get off the gluten free diet. I really did not have many symptoms at first and only when I hit month 3, symptoms kicked in and I once again stopped eating gluten. I immediately went to another doctor, recommended by the gf community and of course I was diagnosed with celiac! So, there is of course a bit more to the story, but my point is: when your immune system is healthy and you are on a gf diet for a long time and from early childhood on, the symptoms might not be as severe as when you get diagnosed later on in life, after poisoning your body for a long time.
I was at a gluten free restaurant in Florida last summer and ordered the beer as it was supposed to be “gluten free” according to the menu. I got violently ill pretty quickly. After looking up info, I realized it was from the beer. It too me 2 months before my gut was healed. They should be ashamed of themselves!
//We take no risks. Fair to say “old school” celiacs (?) seem to think that’s extreme? Would love your thoughts.//
Some background: I’m starting my second year gluten free today, 9/11/2014. I had the biopsies and got the confirmed diagnosis a year ago today. I went GF immediately. I’ve gotten glutened once since then that I know of (a rice dish cooked in a sealed pot; they used what was apparently a wheat dough to seal the pot). Three days of near-diarrhea, ugly gas, roily guts, acid stomach, same as before I went GF. I don’t seem to have the stomach pain, vomiting, etc. that some get in response to gluten. I know I’m not a “silent celiac”, but I may be able to ingest a little gluten without obvious symptoms. (This does not encourage me, as I don’t want to be set back on the road to intestinal health.)
I don’t cheat. I’m not even tempted. When I see a luscious looking piece of cake or a great looking pizza, I think “I gotta learn how to make that” or I cry a little inside, or both. But I’m certainly not going to eat the d!mn stuff.
Some things haven’t changed. Last night we had salmon on lentils for supper. We were eating that before I went GF. And a lot of things that show up on the dinner table are old favorites, many with few or no changes. For pasta we use one of the many GF varieties, so that hasn’t even changed much.
My wife is not on a GF diet, and continues to eat wheat bread and other gluten-laden things. We have separate cookware and bakeware for GF stuff. And a whole lot of other adaptations I won’t go into now. I feel safe eating at home. (And I’m back to making a fairly good pizza crust after a number of trials.)
I do sometimes eat at restaurants. We went on a long trip to India (where I got glutened that one time), but liking Indian food has made life easier. We went across the Atlantic, spent two days in Lisbon, cruised ten days to Dublin, spent three days there, and did a six-day barge cruise in Ireland, all with no problems. Was I careful? For sure! But all through the trip, the food prep and serving staffs were great about accommodating my needs. Here at home I’ve only eaten out a few times, once at a small local French place where I talked to the chef, once at one of the notorious PF Changs locations, where our server seemed knowledgeable, and once at a place with a full GF menu, but less than great food. And I was apprehensive about each new place– kinda takes the fun out of eating out. I realize eating out is a gamble (for stakes I don’t completely understand), and I avoid it most of the time.
Do I take risks? Sure– all the time. It’s a (tiny) risk to drive to the grocery store to buy GF ingredients. It’s a (tiny) risk to use GF pasta. Etc. But I try hard to minimize the risks I take in eating.
Chex now makes a gluten free oatmeal, I bought it tonight. along w/ rasberries and meat and gluten free liquid stevia and chocolate chex, among other things. But. Its now 5 am and I am sitting down, not able to sleep and wondering why (or) what was the point. I lost my baby girl/ dog. my mom is having more health problems, my sister and brother, along w/ myself and my husband struggle financially to make ends meet. Im tired. Ive been sick with multiple medical conditions since I was 15. I am 32 now. I ran away as a teenager and just wish I could walk away from it all again. I live in pain daily that the pain medication doesn’t always help. I want my little girl back and I just want to be happy, but I do not think its possible. I am likely gonna file for divorce, not only cause it isn’t fair to my husband to drag him down with me, but its also since iraq he has just become down right mean and insensitive. He doesnt know w/ it is like to be in my shoes. He doesnt understand my bitterness, lack of humor and resentment of life. I just dont care anymore. If it wasnt for ny mom and my worry for her and that I dont wanna meet the devil, but to greet my little girl in heaven . . . I wouldnt be here right now. Im so alone and all I hear from my family is how they are sick and tired of the ER visits and sick and tired of hearing about how I dont feel good. If they only knew. Im just tired and dont know what to do anymore, other than push everyone away and plead to god to stop torturing me. They say god only gives you, as many challenges that he knows you can handle and overcome. But I cant anymore. Ive been beaten in the past, had a forced miscarriage, had to have a hysterectomy at 21 from being sick and was bullied and spit on im school. Not to mention that I always loved holidays up until my husband came home from being deployed and now just yells at me 90% of the time, creates email addresses for himself and tries to chat and hook up w/ other women. Joins dating sites and says w/ I catch him . . . Oh, im just looking for friends. Even though most the girls in the pics are provocative. Im at my end point. Im lost and its really hatd for me to care about my celiac disease w/ everything else going on. Its been raining off and on and I was raised with the premise that w/ its raining, its someone that you love crying with you from heaven. And w/ it thunders its my grand father bowling and hitting a strike ( I never met him ). I used to be comforted by things like that and in the last week, my answers simply been, I give up. I will live for as long as god wants me here, as for the continued torture though. my faith in him has been dwindling fast. if im his child and he loves me. then he needs to stop robbing me of any sort of happiness. I had one thing that I gave my heart and soul to and he took her from me. what more could he possibly do or want from me, to just sink me completely. Im over it ( or ) him.
I know you probably don’t want to hear this, but I honestly believe you are feeling this bad because you are getting gluten in your diet. Chex may not be safe for you. It can be cross contaminated. You could have problems with oats. You need to join a local support group and you need to let your doctor know how down you are so you can get counseling. Please trust me when I say I know how you feel. Have faith in God and know that He is not doing this to you. He is waiting for you to believe that He really will take care of you. That no matter what happens, you will be safe with Him. If you do not have the faith of the little children, He cannot help you. If you do not believe He loves you, even though He went through all he did for you, He cannot help. Open your heart to Him. He truly is just waiting for you to do that. You are loved, Katie. Don’t ever forget that. I can only give you a cyber hug, so please accept it and open your heart and mind to the knowledge that you can do this and you will be okay. You aren’t as alone as you feel.
Amen. Gods not here to harm but to help you. Just ask him for help. He’s just waiting. Open your arms and heart. He will be there.
i was thinking….you posted about being pregnant is a yes or no just like celiac (which i believe). But it made me think….there are women who smoke, drink, do drugs when they are pregnant just like there are people who cheat who are celiac. there are camps of people who think taking a tylenol and drinking a cup of coffee are horrible if you are pregnant and others who think that’ nonsense. So to me…..it makes total sense why some celiacs are all or nothing b*lls to the wall with it and others who eat G every day. On some things i feel its black and white (no smoking while prego and no eating gobs of G while celiac) and on some things i feel like its gray (for me have tylenol no problem when prego and for me don’t be afraid to walk down the bread aisle and occassionally eat dinner out). Like you i have no tolerace for the PUBLIC cheaters since i feel they do a disservice to us all. Just my 2 cents on what i thought when i read the post.
Well said. Like I said, a microcosm of our society at large.
When I was first diagnosed I cheated alot.. and I mean alot, then one day it hit me. These few bites that taste soo good are not worth the hours/days of pain that I am going to be in and the damage I am doing to my body. Now that I dont cheat I have nightmares that I eat something that is not gluten free…LOL
Have those dreams all the time…