5 things I wish people knew about having celiac disease | Celiac Awareness Month
May is Celiac Disease Awareness Month! To help raise awareness for celiac disease, in this video I'll discuss my top five things I wish people knew about having celiac disease. I'll also talk about the ways that you can get involved for Celiac Awareness Month.
Since I got my celiac disease diagnosis, dealing with the disease has been a struggle-especially when trying to eat gluten-free away from home. Raising awareness for celiac disease will result in more safe, gluten-free options and better standards for those with celiac disease or gluten intolerance.
Things I mentioned in this video:
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Robyn's Gluten-free Baking Courses
(CODE EXPIRES MAY 31st, 2021) As a special treat for Celiac Awareness month, I'm offering 50% off my gluten-free baking courses with code celiac50.
A celiac diagnosis does not mean an end to amazing baked goods!
The Essentials:
www.glutenfreebakingcourses.c...
The Holidays:
www.glutenfreebakingcourses.c...
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What is celiac disease?
• What is celiac disease...
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Celiac Disease Foundation:
celiac.org
Symptoms Assessment Tool
celiac.org/about-celiac-disea...
Team Gluten-free
celiac.org/get-involved/fundr...
Student Ambassador Program
celiac.org/get-involved/becom...
Participate in Research
celiac.org/icureceliac/partic...
iCureCeliac
celiac.org/icureceliac/
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Canadian Celiac Association
www.celiac.ca/
Celiac Awareness Month Activities
www.celiac.ca/news-events/eve...
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Gluten-free Restaurants (Toronto, Canada)
Almond Butterfly
www.almondbutterfly.com/
Riz
www.rizonyonge.com
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✅ LIKE & SUBSCRIBE if you want videos on how to live your best gluten-free life.
➤ Know anyone who has celiac disease, a gluten sensitivity, or is on a gluten-free diet? Share this video and send them my way!
➤ Want to learn to bake drool-worthy gluten-free baked goods? Check out my baking courses: my first course, Gluten-free Baking Essentials, features gluten-free bread, pizza crust, biscuits, cookies, pie crust, and chocolate cake.
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www.glutenfreebakingcourses.com
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“Being celiac has given me trust issues” Literally the most relatable thing ever said 😂
Especially when in a bakery. 😂
At age 60, being in great shape, I suddenly started feeling very unwell. Tingling on my left side (thought it was stroke but tests said no), shortness of breath, heartbeat irregular and then I suddenly couldn't eat anything for weeks. Went back to the doctor so many times I lost track. Being female, I'm sure I was marked as a head case. Went back again and had lost six pounds in a few days. Doctor scratches his head. Next day I had a heart attack and the only reason I'm still here is I had gone to the ER because my body started shaking uncontrollably and I coded while there. My electrolytes were almost non-existent. My heart had been struggling from lack of potassium. Ended up with a pacemaker. They say you are born with celiac, but symptoms are so subtle sometimes, you can't put your finger on them, and then bam! Besides the tingling in everything from my face, tongue and lips down my left side was very severe dizziness to the point of being completely incapacitated. So, celiac is sneaky and can have little red flags going up but don't rely on your medical "professional" to put two and two together before you are dead. Then comes the social horrors of trying to eat out or go to a potluck or someone's home to eat. I told my neighbor, who is a fabulous cook and also a retired nurse, that I had celiac and she served lasagna with garlic bread and cake for dessert! She is a sweetheart so I just didn't have the heart to upset her dinner party by pulling her aside and reminding her, but she noticed I didn't eat and she never invited me over again. I think she forgot I had celiac or didn't know what is was. Still not sure. Celiac destroys you socially with people who just have no idea what you are dealing with and gluten seems to be in everything from foods like soup to your vitamins and even your lipstick! Good luck to anyone dealing with this truly awful inherited disease.
I was diagnosed with Celiac at 10 YEARS OLD! I do a cookie sale with friends to raise money for Celiac and I get asked every time....... "What is Celiac?" We need more people like Robyn to explain!
Dear Robyn, my 7 yr child just was diagnosed with celiac few days ago. We are in state of disbelief and sadness as to what this means for her whole life. Your video gives me hope that she is one of lucky ones whose doctor ordered the panel only based on that she had low appetite over the summer. We have a long journey ahead, but it's her health and she has to learn how to be her own champion..just like you.
Thank you for your comment! I’m sorry to hear your child was diagnosed-it is definitely a tough transition to make, and likely really tough for a kid. You’re right though that she’s lucky to get diagnosed young, and also to have a parent who is committed to helping her make that shift. Thanks for your kind words, and let me know if there’s any way I can help. 🙏🏻😊
My daughter has been ill all her life and she is almost 38. Doctors have said horrid things to her! There is soo much help out there now! Soo many gluten free products now! Try not to worry, you and your daughter are in a good time in history! Something that I have found...... Chicken and salmon are fed wheat. We have learnt such a lot and are still learning! Do your daughter's food for parties. If you go out, take her own food. And try to enjoy your daughter's growing up. It goes sooo fast!😘
3:20 I have no clue why mistaking Vegan for Gluten Free is so common. There have been at least 5 instances where I’ve had to gently explain that ‘I’m not vegan’ or ‘no I can’t eat the vegan option…it’s bread’ or some variation of that statement. It’s a bit funny honestly 😅
😂😢. Finally someone talking my language... Getting diagnosed took me 15yrs...First 20 yrs I just disliked eating bread, oats rice maize etc. Didn't know how to explain to people that Iove these things, that it made me sick. Dairy was a no no for me as well.. As a child there was many times I went to bed hungry because nobody took me serious. What saved me was my dad's organic veggie garden and we got our meat from a family farm who did organic farming grassfed free range cattle live stock and poultry. Lived close to the ocean. So fresh fish was part of weekly diet. However, moving away from home to a different country meant different food too. No more organic anything😳. Still didn't know why Im sick all the time. So when I was 25 and fell pregnant with my first baby, I was told by my doctors and well meaning friends and family to eat ' more' balanced. Meaning incorporating all the things that I was cutting out because I 'disliked' it to have a healthy baby. The sicker I became, it was just scrapped as morning sickness or not- an- easy pregnancy. Dont forget this one. 'remember the sicker you are the healthier your baby will be.' 🤔. When you down because you just couldn't anymore..,'pregnancy is a condition not an illness'. SO only when I was 38yrs old I finally found a metabolic specialist who diagnosed me. t TRUST ISSUES🤔😂. I prefer to eat only salads when going to restaurants with olive oil. I read and All label. Just because they say its gluten free doesn't mean it Is gluten free. In most cases they mean wheat free 😉 If friends invite me over I tell them not to fret, just give me a tomato and some olives if need be or I'll prepare my own food and take it with. Am I extreme? NO. I'm fighting an invisible very real disease that most people think of as a fad, or a nice way to loose weight. If you were in my shoes on the brink of dementia, hair loss, mood swings, migraines which lasted for weeks , tummy aches that made you crawl, nausea, joint paint, fibromyalgia, underactive thyroid, fatty liver, malnutrition, weight gain even though Im eating 'healthy' and now gallbladder removal, I dare anyone to tell me that I am a drama queen. Fortunately, this disease also helps you to determine who really cares about you. Fortunately, my husband kids and close fam friends are Very supportive 😁😍. Before Covid I would invite my friends fam over and serve them my 'food'. Fortunately for me I'm a good cook. Forced to be one because I love tasty healthy food. They definitely enjoyed my cooking and was amazed at how tasty food can be without all the 'unnecessary' stuff. Something I would like to add to your list of 5 things is this.. STOP FEELING SORRY. Im HAPPY that I finally know whats wrong with me and What I can eat and what I should avoid. Of course it would've been nice to b able to eat whatever I fancied but Celiac really teaches you to be grateful for the SMALL REAL things in life...
Happy to say that there is great improvement in my health, weight and quality of life🤩Once Celiac always a Celiac but we deal with it. Enjoy life people💜
What an incredible story. Thank you so much for sharing, Xinzi! 🙏 I relate to so much of what you said, and I'm so sorry you had to deal with those problems for so long before getting diagnosed. I love your point about "stop feeling sorry" and that it makes you grateful for the small things. It was a journey to get to that point, but I totally agree. 😊
bro do u suffered from insomnia during celiac if yes how u tackled to the situation pls reply🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
I can't have anything that has wholemeal fibre in it. I can only ate pale, mild fibre, such as oats, lentils, beans, etc. Wholemeal fibre gives me nightmare constipation, and used to hold me to ransom, while sat on the toilet for hours. It got very sore, and very dishearteninh. TMI, but I'm just being honest about my experiences with bran, brown bread, etc.
Thankyou for sharing this....🙂🕉️
My daughter has celiac. Everything you have said,she has said. This is real. She ordered from the menu “hamburger on a gluten free bun” at a restaurant. Her first bite and she knew there was a problem. With the kitchen staff then investigating it, turns out there were bread crumbs in the meat! Trust issues are ongoing. She manages, but has to tolerate frequent insensitive comments.
Thank you! It's been 3 months of my gluten free diet, after suffering so many years started feeling better, and yes you're so inspiring! Blessings for ya! Happy Celiac Month!
Hi Jay! Thanks so much! 🙏 So glad to hear you're starting to feel better. Happy Celiac Month! 😄
bro do u suffered from insomnia during celiac if yes how u tackled to the situation pls reply🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
Dear Robyn. I know exactly what you mean by "the layers of distrust" Happens to me all the time. I got diagnosed at a sad time of my life, where I had to go through medical tests for repeated miscarriages. Turned out I was heavily celiac, and that explained the whole thing, along with so many symptoms I endured thinking "I just had a fuzzy stomach". I started a strict diet and next year, our baby came along. He's 9 now.
Love you for this video. Beyond relatable. I get such bad food anxiety when out& even in my own home when people eat gluten then touch the ice machine& other surfaces. I’m extremely sensitive unfortunately. I think we would all give anything to live a carefree life but it’s just not that way. It’s painful to have to not just live this way but also have friends and family not understand it and think it’s just dramatic. It’s like a double blow to our mental health. Great video! I’ll be sending this to people who want to understand celiac better.
Sadly, I was one of those people who thought those with celiac disease should probably just stay at home. I never said that to any of them. But I did think it would probably be safer for them. But now here I am. With a positive blood test for celiac disease and my endoscopy in a few weeks. And I would rather die than give up going out to eat. :(
Until you’re so sick from eating. Then you’ll want to die.
I was diagnosed with Celiac disease about three weeks ago and your videos have helped me come to terms with it. I feel confident that this disease will not beat me.
Thank you so much for this feedback. I’m so happy to hear my videos have helped you-I know it can be really hard to come to terms with. Let me know if there’s anything else you would like to see on the channel.😊
Thank you for your work! You turned me on to Gluten Free Oreos from one of your videos & I searched for them high & low to no avail here in the States but now they are regular staples in the stores I shop. I'm 8 months since diagnosis (after a 15 year battle for one) & am SO grateful for your content. THANK YOU!
Thank you. Suffered for years. ❤ Planning is key. Education is 👍👏
Awesome as usual, Robyn! Thanks for teaching us how to better support our Celiac pals.
Thanks so much, and thanks for watching! 🙏❤️
Just stumbled upon your channel and it's so helpful! My brother just got diagnosed today with celiac disease. I'm a med student and was actually the one to suspect and send him to the doctor since he had a really celiac specific skin rash. It's a long story and it will be an even bigger road to getting our kitchen gluten free, but I'm glad he now has the diagnosis🙏 Thank you for the video Robyn!
My daughter's got dairy probs too! So we are learning all sorts of different cooking! Spanish cooking channels have some good ideas to modify! Sending you a great big virtual hug!😊
Thanks for making this video my daughter was just diagnosed she is only 6 years old. This information is so helpful just starting our journey.
Watching this channel made me excited about eating food again after a period of profound "food terror". So... much appreciated, thanks
You’re awesome Robyn! The world is blessed by your advocacy 🙌❤️ As someone who thought I knew about the struggles of those with celiac, I was surprised by how much I didn’t know and how much I learned! 🙌🙌🙌
Thanks so much, Rachel! 😄🙏🏻
I was diagnosed 18 yrs ago after a bowel obstruction. We've come a long way with convenient foods but I still don't trust eating out either..alot of salad! I'm also dairy intolerance but many new dairy free cheeses, etc. To top that off 4 yrs ago I was bit by a tick, I was treated, Lyme disease test neg x 2 , more allergy testing revealed I was bit by the tick that makes you allergic to Beef! ..fish, peanuts, corn. So ALL those new convenient GF foods that contain eggs on r corn are now on my 'No, No" list! ..IM HANGRY..but playing with recipes, vegan, tofu..etc. This is a great site your doing & I appreciate it dearly..Merry Christmas to you & yours 🙏❣️🇺🇲
Gosh, you speak words of wisdom!!!!!! It feels so good to know i'm not alone in this anxiety - even at my own parent's house!~! I've trained them well and they still make mistakes. Thanks for sharing!!! I'm inspired to do my own videos on my Celiac Disease journey, now!
Thank you so much-I'm glad to hear this was relatable for you! 🙏 You should totally make some videos about your CD journey... awareness is so important! 😄
Well said, Robyn!
I wish they knew the psychological difficulties that tag along because of vitamin deficiency and resistance of the medical profession when looking for a diagnosis
Dear Robyn!!Thank you soo much for your wonderful videos.Really inspirational for people with Celiac Disease.I have been diagnosed with celiac disease 1.5 years ago and suffering with the health issues.Still hope for the best in future🤞🏻 Love from India❤❤
THANK YOU!!! My favorite (not) is: "You can have ----- can"t you? There's no gluten in ice cream/shredded cheese/salad dressing/your prescription/Sushi/hash browns...."
WOW! You have articulated EXACTLY how I've been feeling since my diagnosis 4 years ago! Btw, you are so blessed that you have such a supportive community around you! Many people don't have that. I've had nothing but negative experiences with my family and friends of mine have not really made much of an effort to really care too much either. When I was initially diagnosed they didn't believe me. Why? I have no idea? Instead my immediate family (all 7 of them) said, "you don't have celiac disease! You've eaten gluten your entire life! You've baked all of your life! That is ridiculous!" and another one said to me, "You don't have celiac disease! You're just anorexic!" She said this because my body was not absorbing a thing I was eating at the time and I was down to 78 pounds even though I was eating normally!!! So...yeah....one year later after reaching out to a cousin whom I hadn't spoken to in 30 years and finding out that 2 of her 4 children had CD...THAT was when my family believed that I had it! But immediately upon accepting the diagnosis they said to me, "Ok, so you DO have celiac disease, but you are exaggerating your illness!" To this day they say this! It is heartbreaking on such a deep level when your own brothers and sisters say this. It's so unsafe to eat anywhere near them because they don't believe cross-contact is a real issue, instead they point the finger at me and have labeled me "paranoid and ocd." My own mother tells others that I'm paranoid. I no longer attend holiday gatherings and only very few family functions because they expect me to watch them all eat while I sit there staring at them and starve. No thanks!:) So yeah...that's only the sprinkles on the icing on the gf cake of my story and reality! ' There are a LOT of people out there who do not understand how scary it feels to eat something that might not be safe for you. I've been so triggered by my family's response to my CD diagnosis that I won't dare step foot in a restaurant. And forget about trusting anyone to be your roommate. Thank you for your post! I truly appreciate it!
Hi Cindy! Apologies for my late reply, but thank you for sharing. I am so sorry to hear that it has been so tough for you. 😔 I have definitely been so lucky to have very supportive family and friends. If you like, feel free to share this video with those family members (or even my What is Celiac Disease video) and maybe it will help them understand. Maybe I need to make a video specifically for those people who don’t believe celiac disease is real. 😂 My hope is that my videos will provide people with support, especially those that don’t have it anywhere else. 💕 I’m so happy you enjoyed.
Robyn, thank you for raising celiac awareness. I was diagnosed in March 2020, so I had to learn how to eat gluten free during the early days of the pandemic when grocery shelves were empty.
Omg same I was diagnosed may 2020 and it was so hard to find food but a positive was I avoided awkward social moments around food for a while so I could get used to my new diet
I was diagnosed June 2020! Got the first endoscopy available after the lock down. We should start a club.
Wow! Me too!
Thanks for sharing! 😊 I hope you're doing better now that you got a diagnosis. Also, that would be so tough-I can't even imagine! I feel for all of you who've been dealing with this during the pandemic. 😞 I hope the shelves are re-stocked now so you can get your fill of safe treats. Let me know if there are any topics you need help with (as someone who is newly diagnosed)!
@@robynsglutenfreeliving as someone who is newly diagnosed this video is a great start to show all my friends and family , but I guess the hardest thing for me is not being awkward at work when someone brings something in gluten free but then everyone else has tried it so now I don’t know if it still is due to cross contamination. Also does anyone else hate it when someone says to them that “their friend is gluten free and they can eat it” makes me feel like I’m overreacting about everything but I really don’t want to get sick either
Clicked for the info, stayed for the comedy!!
Haha! Thanks! 😄🙏
I literally cried watching your videos because I have never felt more believed and seen🥲 Thank you!!!!! You have inspired me to do the same!
The ending blooper clips get me every time!
Haha! I was starting to wonder if anyone was sticking around for the bloopers-glad you enjoy them! 😂
@@robynsglutenfreeliving I've seen all of them 😳🤣
I was just diagnosed with Celiac a few months ago and I love your videos! Maybe you could make a video dedicated to Celiac-safe adult beverages? 🍷Would be super helpful! 🙂
Hey Kelly! Thanks so much! 😄 That’s a great idea, and I’ll definitely be adding it to my list. 🙏🏻🍷
I’m so grateful for this video!!! You said everything I cannot express to those around me. It get so hard especially if you live among people who aren’t educated on the matter. If you’ll allow it, I would like to translate part of this video into Arabic and post it on Twitter 🧡
Hey! I’m so glad you enjoyed the video and found it helpful. Feel free to share and translate-I’d appreciate if you linked it or my channel so more people can find it, if you can. 🙏🏻😊
Thank you! And sure will do ❤
Great video, I subscribed! Been GF almost 15 years.
Its serious. I wasn't diagnosed until age 33 too late by that time I had sev progressive rheumatoid arthritis, infertility, unable to work, disabled, marriage breakdown, poor and housebound. Goodluck.
My daughter and I have been gluten free since 2007 and we rarely eat out, because most restaurants can’t guarantee their food is safe for celiacs there are only 2 restaurants near where we live that are actually safe and they are Asian restaurants and we eat their food on special occasions, because they are not in our city and they are over 30 minutes away. My daughter is lucky she has a friend who goes out of her way to plan activities where she can have food that is safe for, her and her fried has an oatmeal allergy, so she is more understanding about safe food and tries to learn about gluten free.
Thankx a lot
Im at a crossroad!!! I tested positive for 1 celiac antibody, my biopsy said negative??? The docs have NOT explained anything to me. The doc that did the biopsy was rude to start with. Not wanting to even do the procedures my P.C. had ordered for me. So frustrating 😡
So true. Im celiac and just accidentally took 3 bites of a regular darn flour tortilla just hours ago. Already my skin is burning with a rash I pray doesn't get worse and Im feeling like sick. Desperately considering benadryl but I already now that won't help. Ugh. If people understand the struggles. 😭
AMEN!!!!!
Just diagnosed with celiac ☹️ i am a baker so it means i have to stop making cakes? 😢 and should start just gluten free baking
If I go some were and need to prove to someone that I actually have celiac disease in order to bring in my food, how do I provide proof? I know that I am diagnosed celiac by doctors but how do I prove it to other people?
I've always struggled with my health and just now after more than 15 years of being sick I got diagnosed for celiac disease because of extreme anemia. They should make it a regular blood check at least every a certain amount of years, because people may have negative blood test now and ten years later it can be positive.
This is great. My Wife is Celiacs with full Wheat allergy. It went undetected so long she now has pernicious anemia among other horrible side effects that can't be reversed. I am gluten and lactose intolerant. We have decided to look into crowd funding to open a place here in Milwaukee
Sorry to hear about your wife. What side effects are you referring to that can't be reversed? When I went gluten free I didn't get better at all, in fact it seemed like I was getting worse in time. And the reason was because the celiac had caused SIBO. After treating the SIBO (not a quick process) I finally feel 80% better. Remember that it takes time for the body to heal up. Good chance your wife will eventually heal up completely!
Thanks for sharing! 🙏 I'm sorry to hear that, but I hope you're both doing better now. And that sounds great... we always need more safe gluten-free spots! 😊
@@lotsoftorque3632 bro how do handled and recovered becoz firstly i got hpylori and my 5th doctor identified celiac my hpylori has been removed bt still idont feel good
@@UmeshKumar-xu2ng Do you have gastritis as well? I would imagine with both H Pylori and celiac there is some definite damage to your stomach lining. Make sure you are eating 100% gluten free first of all. Make sure there is not cross contamination in your diet. I would need a little more information on your symptoms. One of the tell tale signs of SIBO is you get lots of gas and stomach discomfort 1-3 hours after eating a meal
@@lotsoftorque3632 bro im facing burping after eating but my hpylori treatment has been done and still other symptoms im facing hardstools,celiac,redness,fatigue, weak bones,headaches, sleep problems
I have Celiacs, also allergic to corn and eggs. I eat before I go anywhere.
Waiter interrogation always makes me wish more restaurants would just label their menu. I don't like having to ask, it would make their jobs easier, it's a win-win.
I went to Riz a few years ago with some friends. I had the pulled pork Tacos on GF tortillas and they were DIVINE. When this pandemic garbage ends, I GOTTA get back there (to Riz).
Right?! I live a bit far away from the restaurant so I only end up getting to go once or twice a year... but it's so good! 😄 The other thing they have is yam tempura sushi (maki), but they aren't making it right now because of COVID. I miss it though! 😭
bro do u suffered from insomnia during celiac if yes how u tackled to the situation pls reply🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
I was a wheat farmer for 40 years, I never thought I was gluten intolerant, I’m going for a test to see if it’s celiac disease or just intolerance. It took 23 years to figure it out as it got worse every year.
Wow, what a story!! 😱 Keep me posted on the test, and fingers crossed that you finally get an answer. 🤞 Thanks for sharing!
Yeah, we live a tough, unfair life! Can't go anywhere, can't eat much and have to put a lot of time into cooking... it's just sad!
Please please please make a video on making your kitchen gluten free
Noted!! 😊 I’ll add this to my list. I do talk a little bit about it in my “Top 7 Tips: How to transition to gluten free” video, but I can make one that is more specific! I also talk a bit about it in my interview with Tayler (celiac dietitian)-gluten can be washed off with soap and water so it’s mainly really hard to clean items that need to be replaced (like toasters, waffle press without removable plates, flour sifter, etc.) Thanks for the suggestion! 🙏🏻
It's one thing people being careless with us Celiacs, but I have experienced so many people on purpose contaminating my food and then mocking me when I ended up in extreme pain, in hospital and with extreme diarrhea that I don't trust anyone and have to remain single and friendless because it's just not worth it to destroy my health just to speak to a bunch of abusive losers that are happy making me extremely sick just to get a laugh out of it. I've been denied food and water in hospital because the staff couldn't be bothered to get gluten free food so they just left me to starve - not without shouting at me "tough, eat what we got or leave it, you can have Wheatabix or sandwiches" - this was at Queen Elizabeth Hospital in Birmingham/UK - and I've lost count how many doctors have screamed at me that I "don't have Celiac but am just a fussy eater and anorexic". After finally getting diagnosed 20 years ago, the doctors then decided that "no, I don't have Celiac and it's just my choice to be gluten free" so they stopped prescriptions for gluten free bread and I cannot afford to buy it as it's extremely expensive here in the UK. So I'm eating very little - resulting in me getting into a lot of trouble with doctors for not being obese enough (here in the UK, one has to be obese to be considered "healthy"). There is one newspaper, the Daily Mail UK edition, that regularly mocks us Celiacs and makes it out that we are just fussy and that Celiac "only exists in our fantasy", and people who read this rag - usually the old, bitter and abusive type - then relentlessly mock us with comments along the lines of "this never existed when I was young". I would advise anyone with Celiac to never eat out because I've heard too many comments from chefs along the lines of "we had this woman come in demanding glutenfree bread but then she wolved down our freshly baked bread so that proves it's all not real and just women being fussy", and I have many times been given wheat bread while being lied to that this was "gluten free bread". Forget having a social life as a Celiac - it's just not worth destroying your health.
Queens hospital, Good Hope Hospital all been ignoring me for years now along with the rest of the NHS, finally my mam got me an appointment with doctor the other day and he has immediately listened and is convinced I have M.E possibly Celiac to. I also have Trigeminal Neuralgia which is breath taking pain I can not explain. I have no life always exhausted and in pain on top of being a carer for my partner.
@@coffeepassionpotion5491 That sounds about right for Queen Elizabeth Hospital (Birmingham) and Good Hope, aka No Hope! Forget about Queens Hospital in Burton too, they used to be okay until about 20 years ago, but they now have a culture of aggression and abuse, don't go there whatever you do! Maybe try Nottingham Hospital (Queens Medical Center), if your GP is willing to refer you there. But be prepared for most of the staff being unable to speak English. If you get nowhere with them, contact PALS. Celiac is far more common than doctors want to admit. The tests for it are unreliable, ie you might have a blood test, test result says no Celiac and yet you still got it. The tests are known to be unreliable, however from my experience most doctors also lie about it because they don't want to prescribe glutenfree bread. The reason for their unwillingness to prescribe it is that they don't get commission for it. They get paid a lot of commission for prescribing anti-depressants, so that's what they are keen on getting all their patients on. Neuralgia is nerve pain, but there must be a reason you have that. Doctors will just fob you off with anti-depressants for that, however nerve pain for no reason doesn't happen. You need to be seen by a neurologist. If your doctor listens to you, ask for a referral to a neurologist. For this, I would absolutely advise to avoid the QE as well as Royal Derby Hospital! Try and get to a neurologist at Nottingham Hospital.
@@coffeepassionpotion5491 I had replied to you but my reply must have been deleted. So I'll try a shorter version: I'm not surprised at all, given the hospitals you have mentioned. For the neuralgia, you need to see a neurologist. I would advise you try and get referred to Nottingham Hospital for that. Queens Medical Center Nottingham. And avoid Queens Hospital Burton on Trent as well, they are abusive!
I just watched the 90 minute timer part of your video, is this normal for most people. I’m newly diagnosed and I will know part way through eating the food.
I think it really varies person to person… this just seems to be what has happened to me!
Hey Robyn! Just wanna ask you about a thing comes to my mind after watching your video... I was diagnosed with celiac disease when i was 6 because whenever i consume gluten diet ...i fell ill within 20 to 30 minutes....it was really painful memory. In my college i really feel awkward to say NO to anything my friends offer me.so i just started eating gluten slowly...and believe me nothing happened to me again .no illness, no pain, no vomiting,just nothing But from the past few years I'm eating literally everything ....but never fell ill.what's the reason behind it??? And what you advise me?? Anxiously waiting for your valuable response
Have you talk with your doctor?
@@rosita565 yesss
Any chance that you might be right now asymptomatic? How are you blood tests?
Thank you!!!!!!! I wish we had better dining options where I live.
Thanks for watching! 🙏 Sorry to hear you don't have great options-I hope that changes! ❤️
I always had the same stress issues it begins the day before, it's making me nervous, mostly the time i got to throw up immediately after eating outdoor. then i feel so insecure(like i'm thinking if only no one heard about it.) and whats wrong with me. so i don't go out to eat anymore. recently i heard of enzym pills what breaks down gluten in your gut, so for once you could digest the gluten, i might by trying that if it works idk. have you heard about this? whats your opinion?
Hey! I’m sorry to hear you have stress issues as well. Unfortunately, enzyme pills don’t work for people with celiac because it’s an autoimmune response, rather than difficulty digesting gluten. I wish there was a magic pill, but unfortunately that’s not the case. 😢
@@robynsglutenfreeliving really thanks for that answer. so i'm not going to do that. much love 😘
💕
"Just stay home and eat there fir the rest of your life." This is me.
Gosh the desire to go a restaurant and just eating stuff.
I’ve been gf for 30 years…… yup this is something to take lightly. I’m controlling when it comes to food, because I have to….. some people…. I don’t trust. When my mother got diagnosed, she had diabetes for over ten years, and her kidneys were shutting down. The long term effects are serious, and should not be ignored.
I know how awkward it can be, when eating at friend's houses, or eating out. I know I can't have pizza, because of the doughy base. I can't have jacket potatoes or chunky chips, or bread, or cake, or pasta. Those foods are okay for me in a very small amount. I can't have lots of gluten like my boyfriend can. I don't think it's very fair, tbh. Yet at least I know I won't be in any pain, after not eating carbs. I'm not going to eat the same thing as my boyfriend if he wants something bloating. I just choose alternatives. 🙂
"It's not that I don't trust you, it's that I don't trust a n y o n e." Same girl, same. For me the timer is about 15-20 minutes. 😔
Ive been Ceoliac fir 56 years, ive never wanted anyone to not eat a desert because of me.
I think we need to reframe our thoughts around what we consider to be food. If we ate the correct diet for the human species (and yes there is endless debate about what that is exactly), we'd probably not suffer near as many diseases and would not suffer the stigma of being called a disease carrier either. The problem is, many of these things that we call food are not suitable for human digestion. And modern wheat products are not the only ones. Everyone also knows about sugar (yes, you know it!), and oils that come out when you crush seeds (aka vegetable oils) also do some nasty things to our insides. Dairy products which are processed are another one. Just right there, you have pretty much ALL of the processed things on our supermarket shelves, and I would argue that NONE of those things belong in the human gut. They are just for convenience and will keep us ticking along but slowly giving us all of our chronic diseases. I believe, and it depends on where your ancestors were born and evolved, that each human group would have only eaten a small select collection of things from their local area, including wild caught animals, fish, birds, eggs, and gathered fruits and vegetables, and honey when we could get to it. We probably wouldn't have been gnawing on grass seeds. Maybe we would have sucked on sugar cane if it was growing in our region but it wouldn't have been like the sugar cane of today from hybrid breeds that have intensified its yields and the concentrated white stuff that sneaks into just about every processed item you can dream up. I would say the same thing goes for wheat products. Once upon a time it was prepared very differently, from a rather different plant than the modern wheat varieties we have today, and the fermenting has gone away from the fast food variety of breads that many people have no choice but to eat to fill their hungry bellies. I guess what I wanted to say after all of this is that you could reframe it and tell yourself that it's not you who has a disease - but it's the poisons that we call food and are encouraged to swallow that make us sick. If you could eat only the limited select natural foods that our bodies have evolved to eat, and your disease miraculously lost all its symptoms, well then couldn't you argue that you don't really have a disease after all. This seems to happen when diabetics quit eating processed carbs and focus on just meat and vegetables. I guess celiacs are going to be okay if they steer clear of wheat, right? We can be healthy! We just have to rethink what we think food is. And have patience with the rest of society because it may take them a little longer (possibly until they get their first "disease") to really get it.
What to eat 😅
Low Fodmap diet
My little brother was diagnosed with celiacs 4 years ago. He was only 4 years old so after the blood test the doctors said they don’t need a biopsy to confirm the diagnosis. His IgA level is way less now but it is still not low enough. Is it possible he was misdiagnosed? And if yes what could it be? He never eats gluten, not even the tiniest amount. We don’t trust anyone either so that can’t be the problem. I’m desperate to find a solution for him.
Hey there! Does he eat gluten-free oats? About 30% of people with celiac disease seem to have trouble with them.
@@robynsglutenfreelivingAt first he did but after we found out that those can also cause trouble we didn't give any more to him
The tTG-IgA test measures response to gluten. Living strictly GF will drive it down, hopefully to zero, and the fact that eating GF has driven it down actually supports the diagnosis. If it's "not low enough" (you didn't say just where it is), then you need to be looking for stealth gluten in his life.
Did that affected your liver enzymes?
Hey! 😊 I don’t think it affected my liver enzymes, but it may do so in other people. Celiac has over 200 symptoms, so it affects everyone differently. Hope that helps!
It affected my liver. Lots of hidden gluten. Even in meat. Make sure you eat grassfed. I used to say my liver is talking to me when I ate something not 'kosher' and depending on what and how much it would scream at me. Learn to listen when your body talks. I now have NAFL caused by Celiac which is an autoimmune disease. Had my gallbladder removed as well. My health is definitely improving but it really takes discipline and effort to make it work. I also found that when you explain to people that Celiac is an autoimmune disease the penny drops. 🤔🙄😉. Control what you can, what you cant control accept it But make it work for you... 😜😁
Does anyone suffer from sleep problems during celiac disease if yes how do you tackled pls reply🙏🙏🙏🙏🙏🙏🙏🙏
I realized dairy caused insomnia ( casein ) it makes my heart race - I also have to avoid artificial colors and flavors and excitogens - ( basically strange words I can’t pronounce ) I take magnesium bisglycinate powder at bedtime and that’s helpful too. I have a naturopathic doc and a medical doc so I don’t just take anything - i always ask them.
After how many months do healing happens becoz some says 3months some say 5years and i have celiac but milk is also undigesting will i able to digest milk again????pls reply 🙏🙏🙏🙏
Hi Umesh! Unfortunately it’s really hard to say because it’s so specific to the person and the amount of damage you had. For me, I started feeling better after about 6 months, but it wasn’t until for 1 or maybe 2 years where things seemed ‘normal’. Sorry it’s not an exact answer, but I hope that helps. Hang in there! 😊
@@robynsglutenfreeliving mam will i able to digest milk again and what other things to avoid other than wheat barley and rye
@@robynsglutenfreeliving bro do u suffered from insomnia during celiac if yes how u tackled to the situation pls reply🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
bhai i am also suffering from celiac its been 2 month i eat gluten free. how long will it take my intestines to heal . pls tell . aapki health hui thk
@@sahilkhatri2917 nhi bhi kch bhi thik nhi hua apka kaisa h
I was diagnosed in 2009 Awful
Anybody that wants to open up a gluten-free restaurant chain will make lots of money as folks start to put 2 + 2 together on how artificial modern day wheat really is and how all these diseases are actually symptoms.
I was just diagnosed with celiac it sucks and I'm so depressed more so because I can't cook and I'm always hungry 😔
Oh my Someone like me. Hey there. I am telling you I feel the same way.
@@iqrafarooq854 its horrible I lost so much weight and I'm just trying to cope
@@aesirat2607 yeah I lost 14kgs. Hang in there. It will be alright.
@@iqrafarooq854 I was 165 pounds now I'm at 92 pounds. I'm really trying I hate being so small and I've been trying to hang on I really have I just feel like I'm disappearing it all came out of no where and it wasn't an issue and I wasn't diagnosed until 4 months ago in a year I lost all that weight 💔
@@aesirat2607 yeah , I feel like It will take us some time to make peace with it and accept it completely. Baby steps!!! Well, we can't change it, might as well accept it. And learn to live with it. You will gain weight hopefully and it takes time for recovery and getting your health back. You will be alright. 👍. Well I was diagnosed 2 months ago. Also trying to make peace with it.
Being gluten-free sucks.
Wait.. WE HAVE A MONTH?!
On menus sometimes GF means “gluten friendly” not gluten free. FML
And don’t worry about your hair.
and then there is cross contamination ...
Sorry, but I would just eat at home. And if I was invited somewhere, I would just let them know that I would not be eating. Go and enjoy yourself, just don't eat.
Just don't eat? It's not as easy as that. It would be easy to not eat if I was anorexic, but I get hunger pangs as much as anyone else. Maybe just avoid carbs?
wow, harsh. I usually bring my own food, because of reasons above, but I certainly do wish there was better systems in place. It's sad that people who've watch the videos's biggest takeaway is "just don't eat". Like, can't we raise awareness and raise the standard? Sadly due to changes in wheat production celiac is going to become more and more common. In Italy they have a very high level of celiac disease develop in the last decade or so and they have responded accordingly.
You don’t trust your friends to have a gluten-free kitchen, but you want restaurants to?
Why NOT? do you get to enjoy eating out and Socialising? sorry you leave out those who are different. Do we not expect lifts and ramps for wheelchairs?
Not to be mean but people are annoying sometimes sorry but not sorry
😄