Is Your Gluten-Free Diet Really Keeping You Safe?
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- čas přidán 27. 06. 2024
- In this video, I discuss my do’s and don’ts for living safely with celiac disease, offering my firsthand experiences and practical advice on managing risk and living a fulfilling gluten-free life. I talk about how to determine if you’re being too cautious or too risky with your gluten-free lifestyle by monitoring your symptoms and getting your celiac serology testing done. It's invaluable in monitoring your health and ensuring your gluten-free diet is on track.
Whether you're newly diagnosed, struggling to navigate your gluten-free journey, or simply looking for tips on how to go gluten-free more effectively, this video is packed with actionable advice. I cover everything from understanding the importance of regular celiac serology testing to mastering the art of living safely with celiac disease. Dive in to discover how to live your best gluten-free life, minimize risk, and overcome the fear associated with celiac disease.
Mentioned in this video:
Celiac Canada
www.celiac.ca
Celiac Disease Foundation
celiac.org
Follow-up Celiac Serology Testing Information:
Canada:
www.celiac.ca/healthcare-prof...
USA:
celiac.org/about-celiac-disea...
A Complete Guide to Gluten-free Labels | Celiac Disease & Gluten-free Diets
• A Complete Guide to Gl...
Gluten-free Watch Dog (Gluten-free Oat Statement)
www.glutenfreewatchdog.org/ne...
Robyn’s Gluten-free Baking Courses
www.glutenfreebakingcourses.com
The delectable waffle lesson is included in The Flatbread Course:
www.glutenfreebakingcourses.c...
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➤ Want to learn to bake drool-worthy gluten-free baked goods? Check out my baking courses: Gluten-free Baking Essentials, The Holidays Course, The Bread Course and The Flatbread Course!
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I just got diagnosed with celiac this week and i have been binging your videos. Thank you soo soo much for all the effort you put in providing this so valuable information. ❤also i could not be happier you are back!
Watch out for cookies marked gluten free. Sometimes they aren’t.
We sure do love her recipes! Make sure you do that!!! So yummy!
Thank you! 😊 I hope you've been finding them helpful. 💕
If it has a gluten-free label, it's legally required to be safe. I have seen, though, companies that have a gluten-free and non-gluten-free product with almost identical packaging. So you always need to be careful and read the packaging!
💕
Recently diagnosed after 6 years of just miserable pain. So blessed to have found your channel. Thank you for your videos. Do you have dermatitis herpetiformis? My doctor literally looked at it and said, “hmmm…” I’m in the middle of carrying a bag of wheat flour to the garbage wearing a mask and latex gloves. This is going to be a trip. I’m all for home cooking; it’s just not worth the pain. My local pizza restaurant has gluten-free pizza which they cook in the non-gluten-free oven so when my husband brought it home last week before I knew all this stuff, I got sick as a dog but live and learn right? I’m 63, but this has been an issue since I was a child. Feel better already after 4 days gf. Take care, God bless!
Would love a video on GF oats as well as Quakers “gluten detection and separation” technology. I’m skeptical ….
And love your videos - thank you for all you do and share❤
Thank you! Noted. 😊💕
So glad you are back!!! Missed you!!!🥰🥰🥰. We have to deal with more than just gluten free because of Hashimoto's. It is hard to eat out and really have to check for other ingredients that will cause symptoms. Found that oats can be a problem but we found that One Degree Organic Foods are gluten free and Certified Glyphosate Residue Free. It's always a hit or miss when we go out. Thanks for sharing! I appreciate you!!!
Thank you! 🙏😊 Yes-I can only imagine how much harder it would be with other restrictions on top of just being gluten-free. 💕
I’ve had issues for decades now with growing severity and only realized it was caused by gluten and intolerance to Sorbitol. So great you’re providing valuable knowledge like this, thank you!
Not celiac but intolerant. I love your channel so funny and positive! ❤ I also eat in restaurants that are not dedicated but recommended and has "gf menu". I also have stomach reactions to gluten and diary products. I eat in Chinese restaurants where stuff is educated. I also react to contaminated pan, separated pan is the key. 😊 I avoid to eat things like falafels because sometimes in westernised version they put regular wheat flour in falafel mix even original falafel is naturally glutenfree food...too risky even they say there's no wheat flour used. That's great you don't react to oats, I can't eat them. :/ But I found millet works for me amazing. 😊
I like what you said about friends that's so true... Not everyone is supportive unfortunately, some people have no empathy.
So happy you enjoy my channel! ☺️💕
It is tricky how different every place is. I agree that falafels are a challenge (particularly at restaurants)-especially because they are also usually deep fried as well. I stick with grocery store falafels and make them at home (those marked gluten-free, that is!).
Also, that's great you have some Chinese restaurants you can eat at! I haven't come across any safe ones, other than a couple of dedicated gluten-free spots in Toronto. (The Beansprout and Riz Gluten-free, for anyone reading this!)
Thank you for your videos. Watching your videos is very therapeutic on top of the great information you provide. Much appreciated.
Glad you find them helpful! 😊
When I see someone with celiac disease I feel a strong bond as we are brothers :D .. Thanks, alot for your videos I've learned a lot from them, keep going with good work. A huge HI from Saudi Arabia
I love that! 😊 So happy you've been finding the videos helpful!
I got diagnosed with celiac last year and my risk calculations look similar to yours! I do occasionally eat Cheerios and Lucky Charms, but it is a bit of a crapshoot (lol) -- sometimes I'll be fine, other times I'll have a reaction. My primary care doctor recommended getting the celiac blood panel done every year...I hope that means more doctors have gotten a better understanding of best practices for treating/monitoring celiac since you were diagnosed, but my doctor is super up to date on new medical science overall, so I might just be lucky.
Thanks for your comment! 😊
I don't think you're alone-I know a lot of people continue to eat Cheerios and Lucky Charms (I've seen some Canadians drive to the US just to get those Lucky Charms... 🤣). Honestly, it's probably not that much more risky than eating at a non-gluten-free restaurant. As long as your numbers aren't high and you're not eating them everyday, you're probably fine. (Because they are marked gluten-free, after all.)
That's great about your doctor! I really hope this is a trend in the medical community.
I am a Coeliac of over 30 years. For most of that time I have been a contact person for the Coeliac Society of Australia.
Don't risk . Remember the motto
"IF IN DOUBT, LEAVE IT OUT" Every time you ingest some 'accidental gluten' you are damaging your bowel, whether you have a bad side effect or not.
By not adhering to your GF diet you are increasing your chance of getting bowel Cancer by 80% then it takes months for you bowel to heal again. So if you keep saying that a little bit won't hurt. IT WILL as your bowel never heals
Thank you!
I have low thyroid and tummy problems my dr told me to go gluten free 🙃
I’m getting a feeling I need to move to Canada. They take allergies so much more seriously than the US.
Yes, I'd love to know more about oats!! I have cut them out for the time being. I feel better, but it's hard to have to cut out another food.
Thank Robyn, this is super reassuring. I was diagnosed a year ago, just got my panels back & now sit at a very week positive. I am pretty much doing what you have suggested. Only been glutened once, it was a hells pizza. I haven't faced going back. But just maybe, might chat with management about making sure staff are much better aware about things like cutting & boxing safely. We have a lovely bakery not far from home who have the most delectable caramel filled muffins. I have once purchased as they are made off premise by a gluten free cook. I did discuss maybe popping their goodies in a cellophane or similar bag to prevent any risk. But they are fantastic, different dedicated wrapper color & always on top shelf, separate tongs to package. I'd just feel safer with that one more step. Occasional treats that don't taste like cardboard are divine.
Thanks for your comment! 😊 It can take time for your numbers to go down-I think it varies for everyone, but I've heard that for some people it took them 2 years to get them down completely. (I wish I got my panel done annually so I would have known how long mine took.)
So it's very likely that you're taking all the right precautions and it will just take a bit more time for the number to drop to the negative level.
Those muffins sound so good. 🤤 And it sounds like they have a lot of precautions in place, that's great!
Please do a video on gf oats. Love all your videos and I appreciate all that you do!! My daughter and I have CD. It's been an educational journey where I'm always learning and adapting. My husband and son can eat gluten so I still continue baking for them which can be challenging. I'm trying to eliminate cross contamination best I can by using a separate dishcloth for cleaning up gluten crumbs, etc., and using separate cutting boards and toasters.
It sounds like you're on the right track, and it's definitely a learning curve! Noted about the gf oats video. 😊 Thanks for your comment!
Just do what I have done for over years. Make the house gluten free
Thanks Robyn! Wheat sensitivity/allergy here - I ordered a gluten free bun for a sandwich at a restaurant last week and the server acknowledged. However, he didn’t charge us the surcharge for the substitution and I had a reaction :/ Will be double checking upon receiving my food in the future.
Ugh, that's the worst! Yes, sounds like an unfortunate reminder to always double check. I hope you had a speedy recovery. 💕
Thanks for sharing!
Just a heads up to other celiacs ive noticed some Sea salt & peppers have labelled 'May contain', depending on the brand. This is usually because of the mass shipping & packing around the world they do with it all. Ive now started making my own after trying to switch to Celtic salt and that failed for me causing headaches. All the best
I've noticed this too, unfortunately! There are still plenty of brands without a may contain statement though, but it's a great reminder to check every label every time. We pretty much always buy the Kirkland Sea Salt from Costco. 😊
@@robynsglutenfreeliving I'm in Aus so i contacted our biggest supplier down here called Saxa as none of their products actually have any statement. They were really upfront and stated that they do not test for Gluten so cannot confirm. I will elaborate on the shipping process as we have plenty of Salt farms here in Oz. They basically load 100's of Tons of raw product directly onto the ships 'belly', which could have had any form of previous cargo (wheat etc) and they do not clean the ships belly between shipments. Further to this, they usually send up to Italy to be packed in a facility that has untold other packaging processes happening. Hope this helps others, it cost me 10 months of my life with behavioral issues (from being glutened) and two jobs because of my erratic decisions but am so glad i found what was triggering me!
All the best!
I would like to see a video about oats. I eat gluten free oatmeal for breakfast every morning.
Ohhh another cross contamination is gluten free toast at a place that serves regular bread. Learned that the hard way. Definite cross contamination.
For flour Ive found a mix of buckwheat and rice flour usually is better than the gluten free mixes, can add a bit of arrowroot or the gross gums if you must. You can also make crepes with JUST buckwheat flour and they are amazing. I find pure rice flour pancakes if you whip the egg whites to firm and then fold them in, are delicious. Use loads of baking powder.
Hi just a quick question if you can remember. Once you've been found with Celiac , how long did your villi take to come back to life and started work properly? Thank you for your videos.
I was diagnosed as having celiac disease when I was 67. The only symptoms I had was an occasional stomachache and I was anemic. However, going on a gluten free diet I found that my mind was a lot clearer and I had a lot more energy. I'm about to be tested again and I'll see how I'm doing. I don't have any symptoms that I'm aware of. In my home we have basically cooked gluten free for my entire marriage. My wife has largely replaced flour for thickening with corn starch. We have flour which my wife makes cookies with. I make the sourdough bread that unfortunately I can't eat. I have my own flour mix that I cook my chocolate chip cookies with. I also make the birthday cakes in my family so I can have cake. It has been that hard. Who knows, maybe I'm going to have to make drastic changes.
Hey Robert! I'm glad to hear you've been doing better since going gluten-free. 😊 That's great that the shift has been pretty simple when it comes to cooking at home (though I personally would go crazy baking sourdough that I couldn't eat! 🤣).
I feel that about the cake! I think gluten-free baking can be daunting for those who haven't done it before, so I guess that can make it challenging for others to offer to make it. Hopefully they aren't complaining about having gluten-free cake though? 👀 That would be the main thing that would bug me. But I also enjoy making the cake, so there's that.
Thanks for your comment! 🙏
do you ask your friends to really clean their pans/pots before cooking for you? I was just diagnosed last month and I've had to mostly take all gluten out of my house because I have younger kids and the crumbs and cross contact was just too much 😬 I feel bad but I don't want to be sick of and on all the time because of crumbs.
Hi Robyn.. greetings from Candiac (Montreals south shore).. I've been celiac since early Dec 2023..so no gluten since then..er' i think..
ive had 2 sessions with a nutritionist, who, incidentally seem to exist more to help plan daily (healthy) food intake vs answering questions..
i was wondering how long after being gluten-free should i have a reaction when glutened? I think ive been glutened 2x so far, but can maybe identify 1 culprit, that being a Maple-OKA cheese, which may have had it's rhind washed in beer.. so watch out for beer-washed-cheeses folks...no mention of this on labels..
Also, speaking of labels, should i be worried when there is no mention of wheat-rye-barley, but there is mention of "spices"??!
I know Canadian products should mention any allergens, but, just wanted your input.
Thx so much for all the info you've made availabe
Its sad how common all of these illnesses are nowadays and theres never any cure for anything
Hi! I have been eating gluten free for about 3 years now. My mom is the one who figured out I had a problem eating wheat. I never was actually diagnosed by a doctor because I was told in order to get a test done I’d have to be on a gluten diet for 2 weeks straight and that is nearly impossible for me. I was bedridden and I lost 15 pounds trying to figure out what was causing the issues. Do you have any recommendations?
Thanks for your comment! 😊 This is definitely more of a question for your doctor. I do think it's important to get a diagnosis, though I know if you have really bad symptoms this can be horrible.
If you don't get the test done, it's best to assume you have celiac and follow all of the protocols to stay safe (like avoiding cross-contact and reading every label).
The anti-transglutaminase for me was 166 i think..and I think 8 or higher was indicative of gluten issues... but im curious, if someone is below the threshold, like you, but gets slightly glutened, how long after should they wait before testing for tissue transglutaminase?
Hey Robyn, there is one question I have really wanted to ask you. There are a lot of these Stacked Pancake locations opening up all over Ontario. I ate there recently and got gluten free pancakes and bread! 😮 however I’m not sure if the home fries were safe. Do you have any experience eating here? Seems like a great place for celiacs when you look at the menu.
Hey there! ☺️ I have seen them popping up too, but honestly have never even bothered looking because I assumed they wouldn’t have options.
I believe you would just need to ask some questions. Their protocols might differ by location. You should ask them if the gluten-free pancakes are cooked on a separate surface from the regular, and ask if they have a dedicated gluten-free toaster for the bread. If the home fries are deep fried, you would need to ask if any gluten items go in the fryer (and avoid, if they do).
Just looking at their allergen guide online and similar questions about the French toast would also be required. I would also ask if they are being dipped in a dedicated egg mixture vs the same one as gluten bread.
The website says gluten-friendly, so there’s really no way of knowing if they call it that to cover their butts or if it’s truly not celiac-safe.
I hope this helps! 😁
Thank you so much for the info! One other question 😅. I have seen on the celiac forums a drug called GliadinX some advocates for it say that it makes them more comfortable eating out because it decreases their symptoms if cross contamination happens. Or it can even stop people from being glutenned in certain circumstances. It’s debated of course. Have you ever looked into this? The inventor of the drug is on the forums and both of her children have celiac disease. You could even do a whole video I’m sure 😂 on this.
@kieranr3343 haha I’m sure I could do a whole video on this but it would not be positive on my end. 😅 There is no current cure or medication that will work for celiac disease. The only thing that came close in studies (a medication to take to reduce risks from cross contact) didn’t pass the last trial. You can read more about those trials on celiac.org (Celiac Disease Foundation).
Even if these products reduce symptoms like bloating, cramping, etc., it does not stop the autoimmune reaction from happening, which means you’re still risking damage and further illnesses, etc. I think a lot of people forget that those with celiac don’t necessarily have trouble digesting gluten, but it’s the autoimmune reaction that causes damage.
I have it on my list to talk about gluten cutters (also not recommended for those with celiac), but I’ll have to look this one up and add it to that video. 😂 Sorry to be the bearer of bad news!
You who are NCGS or Celiac, I recommend listen carefully, next investigate further and apply concepts: CZcams, No Grain, No Pain: Remove Gluten to Improve Your Health - Dr. Peter Osborne
It sounds like she was reading reddit. I argue with people on there too much lmao. Fully agree with this video.
It is so hard😂. Also it seems like people just have different tolerances, both physical and emotional.
I actually haven't ventured onto Reddit yet, but I can only imagine. 😅 I try to keep my blood pressure down and not comment on some of the Facebook posts I see. 🤣
I tested negative for celiac then tested positive for non-ige mediated wheat allergy, can genetic modifications in plant groups from poaceae family of grass result in increase of incidence over the last decade in cases relating to allergies and or celiac disease?
My test was negative but the biopsy was positive
Therefore you are Coeliac
What if it is marked gluten free and says that it was made in a factory that handles wheat products
That means, there could be contamination.
Hey! This was always sounds scary, but the gluten-free claim means it’s celiac-safe. Typically, this warning is for those with allergies (like a wheat allergy), who may react to amounts lower than 20ppm.
There’s more info on this in my Guide to Ingredient Labels video! Be sure to check that one out as well. 😊
NO
I guarantee your friends say your high maintenance behind your back. I have CD and I would not have my friends change their recipes for me.
Jesus stop yapping get to the point
I know you all seem to be American and don't use English but PLEASE the word is COELIAC
It is a Greek word, coined in the 4th century, not an American word