10 things I wish I knew when I got Coeliac Disease || HOW TO COELIAC

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  • Опубліковано 14 тра 2024
  • Thank you for watching! Let me know what other advice you have for new Coeliacs in the comments below :)
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КОМЕНТАРІ • 102

  • @zanazdanius6136
    @zanazdanius6136 Рік тому +29

    I was diagnosed with Coeliac disease in march this year, and I'm 13 years old. I'm so glad i wasn't diagnosed later in life, where it would take longer to heal and could come with more severe health problems. I was severely iron deficient due to the damage done to my intestines and not being able to absorb my nutrients properly (that's what my doctor told me, anyway). one thing that I wish I had known sooner is that glucose syrup is gluten free, even if its derived from wheat, because its so heavily processes, same with dextrose. at first, I had been looking at so many foods (especially candy) and seeing that they contained glucose syrup from wheat and being really upset that I couldn't eat them. but it turns out I can!! it definitely has gotten easier over time, and I'm beginning to get less upset when I find out I can't eat something. I figure it's more about the mindset. my mum tells me I shouldn't focus on what I CAN'T eat, but rather what i CAN eat. to anyone who just glt diagnosed... it gets easier, I promise! it's not the end of the world. If I can get used to it, you can too 💕

    • @channel-gl5mf
      @channel-gl5mf 10 місяців тому +1

      Pls tell do you have undigested foods in stools during celiac disease

    • @channel-gl5mf
      @channel-gl5mf 10 місяців тому

      @@noglu106 then you become severely malnutritioned

    • @user-sd1qr5il6k
      @user-sd1qr5il6k 8 місяців тому

      Sweetie. I appreciate all you shared. I would like you to have your Mom get your book call "NoGrain, No Pain" by molecular biologist Peter Osborne. Please have her read it and perhaps you can read it together. Parts of it are kinda nerdy but very very true and scientifically proven. I wish you only the best of health and success in all you do. Blessings and hugs!

  • @mblabezza
    @mblabezza 11 місяців тому +3

    Literally crying watching this living in poverty with a 9 year old who was just diagnosed and he’s really sick. How can I afford that food, new utensils etc just for him? I’m so overwhelmed but this has been so helpful! I wouldn’t even have thought of chopping boards etc!

  • @losermillie
    @losermillie 2 роки тому +22

    I’ve just been diagnosed 2 weeks ago and it really feels like the end of the world. I know it isn’t and luckily I know a couple of people with gluten intolerance and a couple with coeliac so at least I’m not alone.
    But! The having snacks at all times thing is so important so far, but I’ve found I’m eating less healthy snacks because of all the stuff I would rely on eg. Cereal bars, a sandwich on the go, a pasta pot from boots.

    • @paintpaint6173
      @paintpaint6173 Рік тому

      BY GOD I SEND YOU BACK TO HELL GLUTEN

    • @yashasvijain8120
      @yashasvijain8120 Рік тому +4

      As a person who have had this disease for 10 years now (I was diagnosed when I was 5 and now I am 15) I can that it's harder than it looks like, sometimes I just feel left out and some people thinks that I am lying because they think that eating gluten-free is a luxury but its not, I was too young to understand what I was going through when I was diagnosed but now when I think about it I feel pity for myself and it's one of the worst feelings in the world but you know celiac community stands strong 😃

    • @shwetamodi1447
      @shwetamodi1447 Рік тому

      ​@@yashasvijain8120 hlo

  • @GHFear
    @GHFear Рік тому +21

    I am lactose intolerant, milk protein allergic and recently was diagnosed with Coeliac as well.
    I can't eat much, but what I can eat, I am so thankful for.
    Thanks for the information!

    • @wtfisthisp00
      @wtfisthisp00 Рік тому +4

      Lactose intolerance comes secondary to Celiac.

    • @wendyhannan2454
      @wendyhannan2454 Рік тому +1

      @@wtfisthisp00Yes it does, I have heaps of problems with GF ice cream.
      If you become glutened through no fault of your own, like eating out after you’ve gone through the whole spool.🤷‍♀️ I highly recommend liquid drops called Iberogast, you buy it over the counter at the chemist, 20 drops of this herb mixture helps with tummy pain and bloating. Cross contamination is a real problem for me. Thank you for this great video, and good luck to all fellow celiacs 😊

    • @polynekagia3603
      @polynekagia3603 Рік тому +3

      This is my current state. I can't digest lactose sugar in the milk, can recycle cooking oil and now here Coeliac has come knocking 😢

    • @kurlykaitlyn
      @kurlykaitlyn 11 місяців тому +2

      At first I felt such a shortness of food but theres a lot! I’m vegan and was long before I was diagnosed in my 20s with celiac disease. There are good recipes and alternatives for anything. It’s always better when I cook and bake my own foods haha ive recently even found delicious recipes for pot pies and danishes that are GF and no egg or dairy. My own dishes taste way better than any restaurant would offer so highly recommend you start cooking if you haven’t yet ❤

    • @yourcute4268
      @yourcute4268 9 місяців тому

      ​@@polynekagia3603how are you now..? Is everything okay ?

  • @ezrathomas4201
    @ezrathomas4201 Рік тому +13

    Hi! Could you do a video where you go round to a friend without coeliac diseases house, look in their cupboard or a fridge and show us what you could or couldn’t eat? I just think it would be quite interesting 😊

  • @avengednz7469
    @avengednz7469 3 роки тому +2

    Great vid! love it keep them up

  • @szym1
    @szym1 2 роки тому +1

    Awesome video. I learned a lot. You're good at this informative video making thing :) Thank you!

  • @charlkorb2717
    @charlkorb2717 Рік тому +2

    Great channel, thank you! My sneaky or nasty unknown instigator was stock cubes in gravies!

  • @WendyHannan-pt7ez
    @WendyHannan-pt7ez 3 місяці тому +1

    I’ve had celiac disease for over 15 years, I’m now lactose intolerant. Lactose intolerance feels like I’ve been accidentally glutebned, it has the same symptoms. Bloating gas, diarrhoea nauseous, body pain,fatigue is a big one. I now understand why my tummy never goes down. This happened two days ago after eating GF ice cream , which I’d eaten before. 🤷🏼‍♀️ I think it slowly catches up with you , just like celiac does. 🤔

  • @noell9463
    @noell9463 3 роки тому +15

    In most patients, the only proven safe treatment is a strict lifetime gluten-free diet, which contributes to intestinal mucosa regeneration, improved symptoms, and lowers the risk of contracting complications. If left unchecked, it may lead to cancers like intestinal lymphoma and a significantly higher chance of dying young. Thank you so much for making this detail available on the internet! God's blessings!

  • @libbyward-christie4962
    @libbyward-christie4962 3 роки тому +6

    I'd love a video on coeliac in Japan (for when we can return!)

  • @tyrinp6882
    @tyrinp6882 Рік тому +7

    Thank you so much for the information, it’s really a headache having this disease😢

    • @polynekagia3603
      @polynekagia3603 Рік тому +1

      One minute you are fine but after consuming the wrong product you feel like you are dead😭

  • @SplinterGirl13
    @SplinterGirl13 Рік тому +2

    I just got diagnosed and I bet I was cross contaminating myself with my cast iron pan! I was feeling sick on different meals. And didn't understand why! OH! Great advice thank you :)

  • @jeev4divine
    @jeev4divine Рік тому +2

    As a strict gluten free diet lifestyle for 20 yrs, your advice is spot on. The most important point that gets overlooked is the cross-contamination!! This is the game changer for best health. Also, once started on gluten free, consider using natural supplement MSM to heal intestinal tract. MSM heals and repairs on a cellular level!! My recovery took about 10 days to feel positive difference in my health. I was 50 then, am now 70, best health ever!!

  • @aeryfirst4189
    @aeryfirst4189 2 роки тому +3

    I discovered I'm coeliac when I was 9years old, had lots of health problems till I went to a better hospital almost dying and got the duodenal endoscopy with biopsy and lgG/lgA tests.

  • @DavidCurryFilms
    @DavidCurryFilms 10 місяців тому +1

    Good advice. Indicators on blood test reading high, and severely anaemic 🤢🤕 - got the endo+colonoscopy in a day or so😐
    Have a bad feeling it started around 10-20 years back but hope damage is reparable (especially neurological) - Brain fog, depression, ibs, gas, lethargy and very low BMI are far more nasty than any financial cost or hassle of avoiding gluten 😥😭 Frustration doesn't even begin to descibe it.

  • @kirafairbrother6605
    @kirafairbrother6605 11 місяців тому

    Love this video, my 9yo daughter has recently been diagnosed as celiac, we are starting gf over the next few days, i will get her to watch this video tomorrow, so she hopfully feels a little more in control. Going to spend the weekend decontaminating the house and getting rid of all gluten, so worried i will accidentally make her sick. Its such a big life change for a child, when i first explained to her she had celiac disease she cried for 5 hours straight 😢! Your video is so informative inreally hope it helps her.

    • @kiraarkhipova4935
      @kiraarkhipova4935 11 місяців тому

      Hi Kira! Ironically we both have the same name (you should make this a fun experience for her like my parents did! :)) go to the shops with her and go to the gluten free aisles and explore together, go to gluten free conventions and meet new people, it’s very fun

  • @NoeliaHernandez
    @NoeliaHernandez Рік тому +1

    In Argentina supermarket oats have gluten. You may find some brands online that are labeled Gf (sin tacc) but those are really expensive and hard to find

  • @kimbee23
    @kimbee23 10 місяців тому

    Luna bars are gluten free and they’re so good!

  • @poojananwani22
    @poojananwani22 3 роки тому +7

    Please make a video on how to talk about your disease!

    • @howtocoeliac
      @howtocoeliac  3 роки тому

      I will!! Anything in particular you’d like me to cover? X

    • @cbryce9243
      @cbryce9243 Рік тому +2

      @@howtocoeliac Seems most folks don't want to hear about it. I struggle with the same issue. Now I don't ever bring it up. If someone asks me over for dinner, I politely tell them I have severe allergies and thank them. If they want to hear more, I hesitate and tell them it is complicated and try to get out of the conversation. The only time I talk about it is if they seem truly interested or say something about CD.

  • @akkawowa
    @akkawowa Рік тому +12

    I just got diagnosed with Coeliac disease today so this was a really useful video - thanks! I actually really enjoy a lot of gluten free foods already so I'm sure I'll be happy on a gluten free diet. My main concerns at the moment are:
    1) The endoscopy. I'm not very good at swallowing pills I can't imagine how I'm going to feel with a tube down my throat...eek!
    2) Just forgetting. I think I might put a sticky note on my bank card so I don't buy things I can't eat.
    3) Finding cheap gluten free alternatives to couscous and bread.

    • @paintpaint6173
      @paintpaint6173 Рік тому

      BY GOD I SEND YOU BACK TO HELL GLUTEN

    • @kiraarkhipova4935
      @kiraarkhipova4935 Рік тому +4

      I know this was 3 months ago but I had my endoscopy under anaesthetic

    • @yashasvijain8120
      @yashasvijain8120 Рік тому +3

      @@kiraarkhipova4935 wow I was 5 when I had my endoscopy and it was the worst experience of my life I am 15 now so it's been a while but I still remember that whole thing very clearly

    • @toastedpenguin23
      @toastedpenguin23 9 місяців тому +1

      I know I'm late but if you are in the US save your receipts and you could get a tax refund! Also, you probably will not forget. For me, it was tough at first but after a month I remembered easily. If you are really worried you can get a medical info card to keep in your wallet. I hope your Celiac journey is going well! :)

  • @SplinterGirl13
    @SplinterGirl13 Рік тому +2

    Something I would like to let people know is the endoscopy is not bad at all! I was super nervous for it and I did okay :) but do NOT breathe when they give that throat spray it will make it taste better

  • @FroggyFreg
    @FroggyFreg 11 місяців тому

    Simple version oats are processed with wheat

  • @michellehartford1124
    @michellehartford1124 Місяць тому

    I looked at the bottle of Bloody Mary mix (after I finished drinking one). WHEAT was listed as an ingredient. ZingZang Bloody Mary mix.

  • @vanitajain6110
    @vanitajain6110 Рік тому

    Could u please make a video on how to talk to other people about your celiac disease and let them know what it is and how it is please

    • @yashasvijain8120
      @yashasvijain8120 Рік тому

      Hey there! As a person who have had it for 10 years now ( I was diagnosed when I was 5 and now I am 15) I will suggest you to say that you can't have wheat because most of the people don't even know what gluten is, it will be easier that way and if they ask you what happens if you eat gluten than just say that your stomach hurts

  • @FroggyFreg
    @FroggyFreg 11 місяців тому +1

    Honestly at first it's okay to not go all in because this could be extremely difficult obviously you should try to eat gluten free but it's hard to go from eating gluten to just completely stopping. You'll get the hang of it eventually. I also find trying new things exciting food that I can have free from pain

  • @kuroi8002
    @kuroi8002 3 роки тому +2

    for the love of link make a video about gluten free eating in tokyo, please

    • @howtocoeliac
      @howtocoeliac  3 роки тому +1

      HAHA I want to, but wouldn't it be better if I was actually talking about it while I was IN Japan? Maybe I could do both haha

  • @MEADiaz
    @MEADiaz Рік тому

    Ginger hot tea helps with symptoms after contamination

  • @hayleyrichardson3343
    @hayleyrichardson3343 2 місяці тому

    I was diagnosed 20 years ago

  • @susanpage502
    @susanpage502 3 місяці тому

    I have been a Coeliac for almost 25yrs now, I was lucky because I had a new doctor and his son was one so the doctor was on the ball because it only was just being recognised, you didnt get anything in the shops you got your Bread on a Drs Prescription

  • @UmeshKumar-xu2ng
    @UmeshKumar-xu2ng Рік тому +3

    Sis do u suffered from insomnia during celiac if yes how u tackled to the situation pls reply🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

  • @sprmesavage3065
    @sprmesavage3065 4 місяці тому

    I got diagnosed 3 days ago and it isnt hard for me to eat gluten free diet BUT its hard for me to stay patient. Bc i want to get rid of my symtoms fast!

  • @D3ath4Sure
    @D3ath4Sure 2 роки тому +1

    i was NOt Celiac Patient and i Never Had Lactose intolerant.., i just got it 5 Years Ago. i am So Much used to Eating And Enjoying.. But Now Been 5 yearsssss,,,,, Got Celiac disease and Lacrose intolerant.

    • @akashshivhare8820
      @akashshivhare8820 2 роки тому +1

      I can understand how it feels... I also have celiac

  • @ediecambra4536
    @ediecambra4536 8 місяців тому +1

    Can you make a video about foods or recipes that are gluten free?

  • @matthewyabsley
    @matthewyabsley 2 роки тому +1

    Oats are not gluten free for the most part, also other cereals can be a problem for me also. For example I can eat some small amount if maize (sweetcorn) but if I ate a lot then I will have mild symptoms of eating gluten, I think some of the proteins in maize are similar to gluten (even if not), either that or they're contaminated. ;-(

    • @howtocoeliac
      @howtocoeliac  2 роки тому +2

      I have a whole video on oats! :)

  • @hayleyrichardson3343
    @hayleyrichardson3343 2 місяці тому

    I felt good in 2 days

  • @hayleyrichardson3343
    @hayleyrichardson3343 2 місяці тому

    I’ve made a sourgum beers

  • @diegochialva
    @diegochialva 3 місяці тому

    In argentina, oat is not gluten free

  • @hayleyrichardson3343
    @hayleyrichardson3343 Місяць тому

    I only took 2 weeks

  • @raiu
    @raiu 10 місяців тому +1

    Home cooking is easy, but eating out is soul-destroying. 😅

  • @larrymartin9274
    @larrymartin9274 Рік тому +2

    How did everyone get to keep their hair with celiac?? I’m struggling more every day :(

    • @cbryce9243
      @cbryce9243 Рік тому +2

      In my 50's when I got diagnosed, 70% of my hair fell out, what was left turned an ugly yellow. As soon as I got all the cross contamination (which took 3 years) out of the way, my hair started growing back. Now I am in my 60's and many people compliment how beautiful my hair is. How long have you been gluten free? Make sure there is no cross contamination.

    • @wendyhannan2454
      @wendyhannan2454 Рік тому +1

      Yes I’ve had problems with hair loss, on and off for years. I’ve blamed different meds, no one could tell me it was a side effect of CD. My teeth are also effected, CD causes loss of enamel.

  • @ClancySchell
    @ClancySchell 10 місяців тому

    Paper straws apparently have Gluten in them

    • @howtocoeliac
      @howtocoeliac  10 місяців тому

      That’s a common misconception x

  • @KipGuitar1
    @KipGuitar1 2 місяці тому

    I don’t want my kids to go thru this 😢

  • @3987pda
    @3987pda 3 роки тому +2

    Meat, animals eat barley, wheat and oats when glass low or something to eat. So you need make sure it states gluten free on the meat sticker. Doesn't matter wear you buy if from eg supermarkets, butchery.

    • @howtocoeliac
      @howtocoeliac  3 роки тому +24

      Hey there! This is actually a common myth - The animal converts food proteins into animal proteins by breaking down their structure during digestion so regardless of what the animal is fed, will not contain any gluten.

    • @wendyhannan2454
      @wendyhannan2454 Рік тому +1

      Thank goodness, the GF diet is bad enough without having to give up meat.

  • @kathys9173
    @kathys9173 4 місяці тому

    All grains have gluten, including corn and rice.

    • @howtocoeliac
      @howtocoeliac  4 місяці тому

      Not true! A quick google will tell you otherwise x

  • @nevinkuser9892
    @nevinkuser9892 Рік тому

    It's easier to say grains and seeds. Anything that is a seed or comes from processed seeds can trigger severe symptoms. This includes way more things than you might think.

    • @howtocoeliac
      @howtocoeliac  Рік тому

      There are loads of grains and seeds that are gluten free, and I would imagine this would even be more confusing to say to waitstaff that gluten 😅

  • @tsihi
    @tsihi Рік тому

    Oi, all soy sauce is gluten-free, the gluten is hydrolysed in the fermentation process

    • @howtocoeliac
      @howtocoeliac  Рік тому

      Sadly that’s not true

    • @tsihi
      @tsihi Рік тому

      @@howtocoeliac well there's the globally recognized research done on the matter, but I'm willing to hear if you have something to back up your side
      source: pubmed.ncbi.nlm.nih.gov/29548457/

    • @howtocoeliac
      @howtocoeliac  Рік тому

      @@tsihi that research is seriously lacking context, what soy sauce was tested? There are some types that are specially made to be gluten free. other than the fact I personally have been affected by soy sauce, here’s some more info: www.coeliac.org.uk/frequently-asked-questions/is-chinese-soy-sauce-gluten-free/#:~:text=No.,section%20of%20most%20major%20supermarkets.
      www.healthline.com/nutrition/is-soy-sauce-gluten-free
      As someone that lives in the UK I do rely on info for Coeliac UK as they are really on the forefront of research. So I’m more inclined to trust them

    • @tsihi
      @tsihi Рік тому +1

      @@howtocoeliac You do realise that page was only the abstract? How can you say its "seriously lacking context" if you read a small fraction of it?
      That Coeliac UK link makes no sense. Just if wheat has been used as an ingredient, it doesn't mean that the end product contains gluten. There's a plethora of ways to get rid of the gluten content in wheat, distillation for example. But somehow they only use "it has wheat, so it must have gluten in the end" as an argument. The Healthline piece has similiar issues of non-scientific argumentation: "[Wheat is used] -- Therefore, most soy sauces contain gluten from the wheat." They completely ignore the advances in research in that area, and just list things people used to think in the past. If you notice, neither of those pages provide any data/backing/sources for the gluten content claims

    • @howtocoeliac
      @howtocoeliac  Рік тому

      @@tsihi can’t be bothered on a Friday with this conversation. End of the day I go with coeliac UK, not a random commenter

  • @logicone5667
    @logicone5667 2 роки тому

    Wow you are cute.

  • @Bob31415
    @Bob31415 8 місяців тому

    Between your accent and the extreme speed with which you talk it's difficult to understand you. Hope you're doing well.