Why can’t it be the same with gluten?

Question

I am still new at this and trying to make sense of this autoimmune disease, and the true risks of not being completely gluten free. I see so many posts about people getting so much criticism about someone who isn’t super vigilant and how they are “killing themselves” for taking chances on going to a restaurant that could have a risk of cross contamination.

Then I see posts about people who after many years of eating something that they thought was gluten free find out it wasn’t (and to my knowledge are doing fine). So I sit here thinking, is it really that bad to have a little gluten once in a while? My 15 year old daughter was diagnosed with it 5 months ago and I feel so bad for her sometimes.

I believe (even though I can’t find that info now to post) that the increase for some of the diseases goes from 1% to 3% maybe even 6% on others which is a 3-6 fold but still pretty small chance (although I am sure some will disagree that is a small chance-why risk it?) I read that even doctors don’t fully understand what the outcome of some gluten will be from one individual to another.

It varies from person to person. So for those who don’t get the symptoms when glutened and are not miserable from cross contamination, wouldn’t you prefer to try to still have a normal life and go out to eat and be careful but still not be so hard on yourself for the possibility of cross contamination or even indulge once in a great while on something you miss so much? I guess I am just wondering what is more important: taking small risks and lead a normal life or worrying so much that it changes your life completely: No going out to eat, feeling depressed, left out (can’t go to certain events because worrying of cross contamination).

I mean there is So much bad food out there (fat foods, desserts); we know that it can cause heart attacks or diabetes but most of us indulge in those from time to time. Why can’t it be the same with gluten? I am truly asking that question. I don’t know/understand the difference.

So I would appreciate your thoughts. Please try not to be to harsh. I want my daughter to be healthy and I am doing the best I can to be 100% gluten free and she has been feeling well but sometimes I wish I could tell her: go ahead and have a croissant which is something she misses the most. Thank you for reading my long message.

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Lilia 4 years 49 Answers 1071 views 0

Answers ( 49 )

  1. I understand your thought process. One autoimmune disease puts you at risk of more autoimmune diseases. I wouldn’t wish my systemic lupus on anyone.\nIn my mind…choosing to eat carefully and mindfully at select restaurants is very different from intentionally eating something dangerous. Guaranteed she will find new favourite foods!\nFor my own transition I let go of any other food restrictions I’d applied to myself. So, maybe I’ll drinknam extra gingerale this week… but I won’t choose to gluten myself.\nMaking a gluten free croissant recipe is on my bucket list though!

  2. Thank you for being brave enough for this question. My Dtr just diagnosed last week and I researched the same thing. When you look at cancer rates they’re higher ( though lung and breast actually lower from what I read!). From what I understand when you ingest gluten your body mounts an immune response and it attacks the small intestine. There are issues directly related and that are as a result of such as the significant malnutrition and vitamin deficiency since your body literally can’t absorb the vitamins. One example low vit d which may result in hyperpararhyroid which then may result in osteoporosis. Higher risk of diabetes and MS. It’s not just the cancer risk which I hear you- everyone eating poor diet at risk of heart disease and smokers at risk of lung cancer. This is more complicated. The way I figure it I am going to teach her to be strict gluten free. There will likely be enough times in her life ( she’s 13) when she is accidentally exposed so snd this point we are strict gf but will choose to enjoy life and try to hunt down safe restaurants etc. the other thing I read which was convincing is that once you go gf if you cheat after a while or have cc- even if it never bothered you befire- you may have severe physical reaction beyond the damage such as diarrhea abdominal pain vomiting etc. good luck and wish me luck with my Dtr too!!!

  3. My 15 year old daughter was diagnosed last week and I’ve been researching this disease all weekend long. It’s overwhelming and there’s a lot to learn. My daughter is feeling a bit sad so I am trying to turn this into a positive and we’re going to learn to bake GF bread, muffins, cakes, etc. together. Today we mad GF and dairy free brownies and they are delicious. As a parent I’m going to do my best to keep her healthy and help her see that she can have delicious food.

  4. What’s more important? Eating regular pizza with everyone else or avoiding death? (Simplified but you basically need to stop even considering it a choice.) Gluten free is just the way it is now for anyone diagnosed. I think it is best to make sure you are always advocating for safe options instead of thinking of giving in to gluten. Society is slowly but surely catching on and making progress, with more an more people becoming informed…

  5. This has been very educational to read each ones stories. It has been difficult learning and becoming more educational myself and the importance to be totally GF and avoid CC. I have good days and rough days of questioning why me? While I may never know the why or completely understand. I do know for me this is my lifelong journey I walk now. Just for me a few mild CC is just not worth it. I learn, grow better at what goes in my body so I can live the best healthy I can. Because I am and you are worth it.

  6. Unfortunately I am not very compliant. Not diagnosed until in my 70’s so I plan to eat forbidden food. Am I in line for an early death? Who knows. I could be hit by a bus tomorrow!

  7. I was dx’d at 2 years of age. Ate a very strict GF diet until 18 years of age. I was told this is an allergy and it is possibly to out grow it. So I tampered with gluten here and there and then more and more I ate gluten. Never like a typical person would eat it though. For about 10-15 years I did that. I suffered from faituge sooo bad. I am now 37 years old, i have horrible bags under my eyes, vitamin deficient, i have achy joints and brain fog. Dx’d with narcolepsy 2 years ago. I always feel better when I am gluten free. I now know I will never out grow my disease!

  8. This is a current situation in my house with my 15 year old. He does not care about eating GF all the time. Doesn’t care about missing his favorite foods. We’ve found enough replacements. He doesn’t feel like he’s missing out on anything. His number 1 concern is- how am I going to take a girl on a date and not go to a restaurant? I told him that if she can’t deal with that then she doesn’t care enough about him and move on to the next ? His next concern is what he will do when he goes to college and I’m not there to find the food and make it. I told him he will have it all down pat by that time and will be able to do it himself. My second answer was good enough for him. My first answer- he’s not buying it.

  9. Even the dust keeps the body toxic. I was told by a doctor who had been a Duke University research scientist in cell growth regulation for cancer research that even so much as a tiny crumb of gluten consumed on a regular basis gives anyone an 80 times greater chance of having stomach cancer…80 times greater. Why would anyone intentionally consume it? Accidental exposure is bad enough without intentionally consuming it. It truly does matter in the body’s ability to detox, heal, and to remain healthy. Wouldn’t that be better than whatever it is you want someone to eat? We eat a memory of a food, but what we really need to eat is that which nurtures our body rather than that which adds toxins. Our cells are made with whatever we consume. Add junk, get junk for our cells. It truly does matter.

  10. eat gluten free but don’t stop yourself living your best life. that’s my motto. i couldn’t not eat out i hate cooking

  11. I hope things get easier for your daughter. \

  12. I was unintentionally getting glutened from my toddlers and now I have hashimotos, low iron and Candida. I would say it’s not worth the risk of developing more diseases!

  13. Think of gluten to a celiac is like mouse poison to a regular person’s body. Or lime a little bit of dog poop in your chocolate cake. It might not ‘ll you today, maybe just make you feel si,k. But it’s poison to your body. And eventually it will kill you. It give you worms.

  14. Welcome ,Lilia Martin.
    Your a good mom , and will be a fantastic educator and advocate for your darling daughter.
    This is a great group of people.
    I learn more about this disease here than any other source.

  15. It’s like taking a pad of steel wool to your microvilli every time you eat gluten. You might not feel it (something like 30% of celiacs are asymptotic) but you’re causing physical, structural damage to the tissue, putting yourself at significant risk of developing gastric cancer and almost certainly setting yourself up for osteoporosis or anemia.

    Ultimately it’s up to you what you do to your body in private, but it does have a massively negative impact on people with celiac disease as a class of people when non-celiacs hear us admit we “cheat”. It makes them feel comfortable being sloppy with cross contamination because “I know someone with celiac and they eat wheat some times”. So it’s important to be aware of all of this when “cheating”.

  16. This is a little hard to read but actual research about gluten consumption by people with celiac disease.
    https://www.ncbi.nlm.nih.gov/m/pubmed/17209192/

  17. Exposures to gluten, even incredibly small amounts via cross-contamination, cause damage, repeat exposures continue to cause damage and do not allow the damage to heal, which can eventually cause cancer.

  18. What in the heck?! My doctor never said anything about an auto-immune disease! “Don’t give her stuff with Wheat in it.” Now my freaking out about my 15 year olds life.

  19. for me the main motivation i have to keep being as gluten free as possible, even if it borderlines psycho, is because i watched my grandpa on dad’s side slowly die from eating a little wheat in most meals rather than avoiding it. his pain was minimal, so he said, so long as wheat was one of the last ingredients in something. i watched him go from a healthy weight thin man then shrink to a skeleton. unable to walk without assistance in his 60’s and early 70’s. watched him have 5 strokes from vitamin deficiency. watched him get a b-12 shot in his rump every single month because he could no longer get what he needed from food and oral vitamins. i mean i literally spent my childhood watching him do everything wrong just so we could feel better about living with his disease and he paid the price. while that was his choice he also could have lived longer with more of our support and understanding. he died when i was 16 (i am now 32) when my mom’s parents around the same age died only a year ago. for me the reality was that i’d end up the same, needing someone to help me shower when i’m 68 if i don’t do this for myself. i personally do not want to need bathroom assistance by that age if i can prevent it by eating the right way and avoiding gluten. not every patient will go through what my grandpa did but since i’m his family member i’m more likely to have his celiac experience than anyone on this page who i am not related to. i do it because this is possible and i fear more what life would be like under a stranger’s care at a young age than i do missing out on a restaurant.

  20. I just stay realistic. I live 45 minutes from work. I am gone 14 hours. I work 30-70 hours a week. I’m a mother.
    I physically cannot eat all my meals at home. I do not have time to meal prep 14 meals a week. I don’t even know how many I will need until I need them.
    It’s not happening.

    But I’ve worked in food service before. I know Wendy’s policy on their grill. Anything coming off of it should not be exposed to gluten. I also know that one local franchise owner has Celiac’s. So I still get a burger.
    I do Chik fil a. I do Texas Roadhouse. Pretty much, if I can get a steak and baked potato, I’m good.
    At home, I make sure I always have GF oats because, I’m constantly starving. Those oats will fill me right up.

  21. Lilia Martin I am one that was not very symptomatic. It was a battle to get diagnosed. Even though I didnt think I was celiac and did not have many of the symptoms others talk about, the damage to my intestine was real! So no gluten even if you dont have reactions. I have to avoid CC at restaurants, so I rarely eat out and always have protein shake mixes or protein bars with me for emergencies. The damage is real wheather you react or not.

  22. If you actually are gluten intolerant you should never eat gluten. I suspect many people here are sensitive not intolerant. Therefore you see what you describe. If you are like me you would understand. I for example somehow had gluten and my right pinky developed 5 dh spots and I just spent two days in bed. If you really are alergic to it you would know and you should stop. People who cant eat nuts are not advised to use an eppy pen because they want to eat peanut butter.

  23. So I’m 24 years old and was in denial for about a year. I can’t tell you how much I want to take that year back. I was eating half Gf/half non GF because I didn’t want my life to be ruined by this stupid disease that there is no medecine for, that fact alone was what did me in and made me pissed off at the world. I tried, in your own words, to take small risks and lead a normal life and not worry about it. I ended up in the ER because I wanted to eat sausage gravy…figuring there wasn’t that much gluten/it would be diluted with other things. I am also a fan of croissants but the last time i had one it went right through me….
    In my own words, taking the chance is not worth it. Even if you aren’t getting sick, you might still end up suffering the consequences in other ways later down the line.
    I felt/still feel the pains of gluten and it’s enough to never touch it. When you get extremely sick like that you never want it to happen again. Damage is being done when you eat gluten. Gluten = damage.

    The difference between skin cancer and the sunscreen is: A: it is known to wear sunscreen because everyone is susceptible to skin cancer and will prevent UV rays. Being gluten free is not preventative at all, YOU HAVE TO DO IT because otherwise your body will send a message to attack your body, at the same time…by not damaging your small intestine you are thus decreasing your overall -higher than a normal person-risk of developing colon/intestinal cancers. ..not everyone is susceptible to this disease which makes it very different from the sunscreen and skin cancer.

  24. I went out to dinner with friends last night… something I like never do. Our outback blew up last week so my safe spot was not an option. I got glutened. It’s freaking AWFUL. my head is pounding, my joints are ridiculously inflamed and everything HURTS. My stomachs going nuts, I can’t sleep, I’m so bloated I feel like I’ll explode and I can’t fit my work uniform… plus eahagver else I’m forgetting since gluten makes me all brainfiggy and barely coherent.

  25. Don’t cheat even if you have mild symptoms you are still doing damage to your intestines. When I first went gf 12 years ago I met an older lady that recently was diagnosed with intestinal cancer. She was misdiagnosed for many years for celiac disease. By the time she found out she had celiac she also found her intestines were beyond repair. She is no longer with us.

  26. I go out to eat. I bring back up food with me when I travel in case it’s too complicated to find safe food. I go to events and either eat prior or bring my own food if I have to. I haven’t read through all the comments, but I’m sure by now people have explained that the risks of someone with celiac disease eating gluten HAVE actually been determined by the medical community. It’s NCGS that they still don’t know a lot about in terms of long ranging consequences, but still, imo it pays to be strict no matter which issue it is to give yourself the best shot at a healthy life long-term. Whether someone gets symptoms or not, eating gluten presents a long term health risk. You can feel pretty close to “normal” on this diet. Lots of people live with food restrictions, not just those with celiac disease. To give her the best “normal” life, ensuring her long term health is what’s most important. Think of how lucky we are that we can be normal, all we have to do is change our diets.

  27. Yes grow up and just deal. We all have the same issue and it simply requires better habits that Americans any way are not used to. If you actually are intolerant any gluten will damage your body.

  28. Here is how I look at it (diagnosed last June). Being gluten free due to a Celiac Disease diagnosis increases my chances at a healthy life, much like my choice to be a very active person with exercise. I happen to like the naturally gluten free foods (veggies, rice, etc) and a fair share of the gluten free replacement foods (gf pasta, etc). My health is worth the extra time and effort to avoid cross contamination. I choose to be gluten free for my health. I’m not deprived, any more than a healthy person is deprived by not eating a dozen donuts every morning for breakfast and washing it down with a beer. Life is about choice. At least 90% of this thing is attitude.

  29. From what I know, undiagnosed celiac can lead to certain stomach cancers, linked to diabetes. From me long the first 19 years undiagnosed, my life would surely be different if I hadn’t been so sick all of those years. You might not see symptoms but they surely are affecting the body and mind. My family and I thought I was crazy, got diagnosed and I have a completely different emotional state, calm and rational now. It is extremely hard, especially when leaving the house but after a time of getting use to it, you make it work. Your daughters medicine is her food. Don’t forget that. Good luck to you.

  30. My daughter was diagnosed with Celiac a little over one year ago. We have eaten GF at home and still eat out at restaurants as regularly as we did before, with gluten-free options. I have always fed her Bob’s certified GF oatmeal with no issues. She had her bloodwork done after one year and it was within normal range. Also, after six months of gluten free, she was able to tolerate dairy for the first time in her life.

  31. https://www.beyondceliac.org/research-news/View-Research-News/1394/postid–102320/ this one is about side effects of hypervigilance when adhering to gf diet

  32. Hypothyroid and Hashimotos from unknown gluten intolerance

  33. I went to doctors my whole life with issues related to Celiac but they only gave me pills for symptoms and didn’t think to check for Celiac. Eventually I got 3 other autoimmune diseases and even then the rheumatologist didn’t check for Celiac. I have osteopenia from malnutrition because my damaged gut wasn’t absorbing nutrients and I was anemic for years. I have been chronically constipated my entire life and thus damage may be permanent after so many years. I have hypothyroid and had chronic fatigue. All of this could have been avoided if I had known at an earlier age. You want the best for your daughter? Be diligent now and give her the best health she can have throughout her lifetime. It’s a gift you can give her and a healthy gluten free diet is what is best for her.

  34. Thank you all for the replies and for sharing your stories and the articles. I appreciate it.

  35. Recently saw my GI Dr for follow up. Said those who don’t follow strict gluten free diet has increased for colon cancer. He also told me he had never seen this happen in all his years of practice. Chance ifs there but very rare.

  36. I kind of split with you, Lilia Martin. I purposely cheated once in more than 16 years and the result was bad enough to ensure I wouldn’t again. Being a teenager, your daughter will very likely try it at least once but you should discourage it, IMO. I do agree with enjoying life and as a part of that, taking some very calculated risks of contamination to have a more normal life. I could not have gone to Europe and other places without taking a few chances (OTHO, we decided not to go on a tour to China because of food uncertainties).

  37. It’s not worth it, trust me… I was that teenager who thought I could eat anything. I initially had glandular fever and wasn’t getting any better, aged around 13/14. I was losing weight rapidly and thought to bulk up I should eat plenty of wheat. Ended up having months off school. Then months down the line we found out I was a coeliac. I found it difficult as I was such a fussy eater. My main diet was wheat based foods. I found it really hard but what did it for me was when I was 16 and I’d been really hungry and there was no gluten free option so I just went for the normal sandwich. Unusually I didn’t get instant side affects, which I had in the past if I ate something by accident. So went on with my day and woke in the night with extreme pain. Rushed to the toilet and afterwards tried to make my way to the sink and could feel the pain taking over and like I was being drained. Before I knew it I’d fainted and cracked my head open on the sink. Woke up to what looked like a murder scene and my family got me to a & e to get stitched up. Over the years I’ve done the same thing when I’ve been really hungry but wow I’ve paid for it. I’ve felt like I was dying at times. Far worse than labour pains! I’ve had two natural deliveries, one with no pain relief, and one c section so can vouch for that! It’s truly unbearable at times. There’s been times where I’ve eaten something that didn’t contain wheat but was made in the same factory of other foods, and even the cross contamination destroyed me! You have to take it serious because she could get cancer in the long run and I know how hard it can be to make the change but there’s loads more options out there now than there was 17 years ago. It’s really not worth it xx

  38. I used to be able to take a bite of something with gluten and not have a reaction, but quickly I developed more sensitivity. For years I used to eat something that seemed to be gluten free and knew within minutes if it was or not – that was my barometer because I have been gluten free for about 30 years and there were not the options or labels we have now. I understand your position – I also have two children with celiac and one wants to eat gluten food now and then. There are so many symptoms of celiac; bloating, gas, diarrhea are only three. You could have reactions you don’t tie to eating gluten and you are doing damage to your intestines whether you feel it or not. There are times when being GF sucks, but, for me, it isn’t worth eating gluten. I just have to plan food, especially when I travel and I bake a lot of things over buying them. We also focus on foods that are naturally GF.

  39. I’m 55 years old. My son took his life. I’m doing my best following GF diet. I’m not going to such extreme ‘re “cross contamination “. I take what God has planned for me. I’ll never liver my life to the fullest because of losing my son. What little enjoyment I have just can’t be taken away from me. Don’t get me wrong. I’m not maliciously sabotizing GF diet. I have been doing good following the diet. Yet I’m not going to live worrying of this or that is contaminated. Sorry people.

  40. So she s had to have severe symptoms for yall to find out her diagnosis, don’t forget those symptoms are not worth the occasional norm. She will adapt, you will adapt…this disease is a aggravation, but could be way worse.

  41. What is “a normal life”? I don’t feel I live an abnormal life just because I had to cut something out of my life…

  42. You’re not living a abnormal life.

  43. Just my comment but my brother was diagnosed at 14ish did nothing and died at 39 from colitis IBS then cancer…. I am 47 diagnosed late but thought I was normal and didn’t need to be GF so thankful that I am now… if you eat packaged products or out a lot your will be exposed to it which is expected, it’s just a matter of how much your body can “handle” before getting sick
    It’s frustrating most of the time…but eating it purposefully is like giving an alcoholic one drink it’s just not the best idea ?
    My whole family is GF
    Son 16
    Daughter 11
    Hubby and mom (75)
    We know how you feel ❤️❤️ just know this group is here to help not judge ??
    You know we all eat really YUMMIE FOOD TOO! Croissants are doable if you’re willing to DIY ?

  44. Praying for you. It’s not easy. Just read, read and read again. It’s hidden in lots of things.

  45. I find it hard too. I don’t understand the cc thing. If you use the same butter as a normal person thats cc cause your knifes touched the same butter. I can’t get my head around that it’s that severe but I do have my own butter n toaster but then I’ll have a chicken kebab n salad (not pitta) but the chicken is placed on the grilled where other stuffs been. I’m silent coeliac so I don’t show symptoms so i don’t know when I’ve been cc. I’m not ill if eaten gluten but do feel different n headaches. We all have the choice to live it as best we can. If you can be 100% then good for you. If you need to cheat once in a while thats your choice. We shouldn’t have people cramming it down our throats. We all have a choice. Your Dr consultant n dietition should give you all the info you need then you decide.
    Xxx

  46. It is in no way EVER worth it to cheat. This is serious. It sucks, but it’s true. Turn it into a gift however you can- find fun ways to make new foods, learn about holistic health, check out the paleo diet… Unfortunately this disease can and does kill, and it leads to the development of other autoimmune diseases as it destroys the gut which essentially IS the immune system. I would never in a million years allow my child to eat gluten if I had one and knew they had Celiac. I grew up so sick because my mom didn’t know- and it wasn’t until adulthood that I found out. Gluten-free wasn’t enough to help me at that point- I have to avoid all the gluten cross reactors and eat entirely paleo and cannot eat anywhere that gluten is present in the kitchen. I get severe reactions to even trace amounts. Untreated Celiac can lead to Schizophrenia, cancer, it is super super serious. It just is. Acceptance is key and learning new ways to be.

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