My Celiac Disease Diagnosis Story - Robyn's Gluten-free Living
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- Опубліковано 25 жов 2020
- How did I go from being a passionate "gluten eater" to completely eliminating it from my diet? Hit play to hear my Celiac Disease diagnosis story.
In my next video, I'll be talking more about my struggles when I was transitioning to a gluten-free diet. I'll also be giving you the tips I wish I had been given when I was diagnosed with Celiac Disease.
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I’ve always solved all of my medical problems because doctors aren’t interested in solving problems; they’re just interested in masking them with medications.
Or putting in their hours
Did you manage to solve Celiac?
I was having stomach symptoms from childhood throughout my whole life. I was even working on accepting how « sensitive » and picky I am when it comes to food, wearing oversize a long before it became a trend (to hide bloating), thought that I was fat and got anorexia trying to lose that « stubborn belly fat » as a teenager (ppl didn’t speak up about the difference between bloated and excess fat at that time). Sometimes it was hard to stay on my side, there seemed to be no suitable food for me, I felt better in my stomach only without food for 8+ hours but of course I felt awful and hungry at the same time. It’s such a relief to finally know the real reason and to know that I was sane all these years
Yup, similar experience. The doctor tried to diagnosis me with depression. I was like did you not hear my symptoms of bloating, indigestion, numbness, and insomnia?
I feel like your doc just heard insomnia and went deaf
Insomnia? That’s my number 1 issue.
This all happens when depressed too
This all happens when depressed too
This all happens when depressed too
My team mates at work asked me “what foods do you miss?”
I said “I don’t really miss certain foods, I miss convenience & choice”
A lot of foods here in Australia that have a “gluten free” option, only have one flavour in the gluten free range
The normal people can have their pick of flavours but I can only have chocolate , I hate chocolate but when I want a pudding I’m forcing myself to eat it so I’m not the only one not having desert 😢
I definitely feel you here. I REALLY miss the convenience of being able to just grab foods on the go. 💕
Also, I always appreciate places that have a GF option like a flourless chocolate cake, but like you, that’s not something I would ever pick to order off a menu.
If I didn’t bake, I would probably go insane. 😅
Diagnosed today! In my 40's. I have been seeing GI doctors for 22 years. I am overweight and hypersensitive to fibre. Leafy greens= death. I had many many many investigations... they kept chalking it up to IBS. More colonoscopies than I want to think about... but never endo. I finally decided to get bariatric surgery, and part of the screening is an endoscopy. They diagnosed me through an Endo. Never once did someone do a TTG testing. Unlike most people, I am male and overweight. I was a gluten denier too.
So sorry for you..i was celiac for my entire life for 29 ywars
Took me a decade to get diagnosed with hashimoto's thyroiditis. Now, 9 years later we are also looking at celiac.
They actually go hand in hand in many patients. Type 1 diabetes as well. Having one Autoimmune disease increases the risk of developing a secondary one. Some theories mention that having untreated Celiac may contribute to the development of Hashimoto's, type 1 diabetes etc.
My gluten flares send me into lots of inflammation and brainfog with rectal bleeding (lots) ... was bleeding so bad last year before we realized it was gluten that I was low bp and anemic ... had also been gaslit by doctors for years ... similar journey, half a dozen doctors that are pretty quacky ... doing a lot better nowdays.
After suffering for years with sick stomach I was finally diagnosed a month ago. Since then I follow a Gluten Free diet and got my life back. Zero pain since I started with my gluten free diet. Wow... and no doctors before has ever tested me for Celiac Disease except for the last doctor I saw. I am so happy and feel wonderful..!!
I’m in tear. Thank you for this video. I’m so tired of pain.
I know how you feel, it’s good to know. I love videos like Robyn’s it helps people, when you know somethings wrong, and you can’t get the answers.
I’ve had this hideous, painful, itchy rash on the front of my leg around the ankle. For years I was told it’s eczema. After my own digging I realized this is what’s going on. Wow! It’s really sad the doctors haven’t figured this out. I’ve always had iron deficiency, bloating and this rash. Thank you for your insight. I love bread and this is going to be a journey. I’m now willing and ready to make the change to feel better. Definitely subscribing to your channel.
Hey Erica! 😊 Thanks for sharing. I'm sorry to hear you've been struggling with that-it's shocking how hard it can be to get a diagnosis, but I'm glad you're now on the mend. The transition can be hard, but it definitely gets easier with time. I'm so happy you subscribed, thanks so much! Let me know if you have any questions or topics you'd like me to cover. 🙏❤️
I was diagnosed because my parents brought me to the doctor when they realised I was extremely tired every day and constantly had a runny nose and looked sick. When the doctor saw me he immediately diagnosed me with celiac disease and now 5 years later I’m much better!
Hi Bella! 😄 I'm so glad that your doctor was aware of celiac and was able to get you diagnosed so quickly, that's awesome! Glad to hear you're feeling better. Thanks for sharing! 🙏
Did your symptoms get better over time or right away? I was diagnose 6 months ago and i still have some issues. I dont really know much so I hope you dont mind helping me.
When I was diagnosed it was a bit of a shock because we thought I was asymptomatic but we did some research into my medical history and discovered that my growth severely slowed around 5 years old and that I had been malnourished for nearly 8 years, and that the frequent GI issues were not caused by a medication as we previously thought. After going gluten free I grew 8 inches in less than a year and gained 30 lbs and finally started my period, 4 years later I have also been diagnosed with IBS and lactose intolerance so my diet is pretty restricted, but I finally feel like I can eat without feeling sick all the time and it is more than worth it.
Wow, what an incredible story! It's amazing that you saw such a difference right away.
I think it's pretty common for people with celiac to have other digestive issues. I'm also lactose intolerant (although I find I'm okay with certain things), but I agree that not feeling sick all the time is totally worth the restrictions.
Thanks for sharing! 😊🙏
What type of test is needed to diagnose IBS
Yep. Always was “failure to thrive” and using my tummy aches to get out of work. Farm kid. When I got diagnosed at 20, I grew 3 inches taller!
Diagnosed with coeliac disease at 4 years old, and had some rebellious gluten in my teens and early 20s. Have arthritis and other issues now. But it's not easy. I can honestly say I haven't been gluten-free for 3+ years and some recent bloods came back saying I'm having gluten. Short of foraging from the land or starting a farmstead there's no escape. So always do your best and if you can, always make it yourself. There's still stigma when I bring food anywhere and I get the 'our food not good enough for you' look or the 'we do gluten-free' as I can see the cross-contamination areas and cakes gluten and gluten-free literally side by side.
People say its easy now, in the UK I used to get bread on prescription (free). But now all the shops sell it, that financial net is gone, buying a decent loaf now costs £3.50 / $4.50 and its just sugar and fat with so many ingredients it boggles the mind. The closest I could get to good bread was the incredible bakery £4.50 /$5.70 a loaf but that's a special order in bulk to avoid shipping. Most of it goes mouldy in days anyway but new variants don't which worries me more for some reason. Some in the US may be saying that's really cheap but to give you an idea without going through an economics crash course a loaf of standard middle-tier brand wholemeal bread is £1.30 /$1.70 and that's with the cost of living crisis. My food bill has always cost more than others but it now literally costs 3 to 4 times as much. Before 2017 I spent about double to get 100% whatever. Now based on my recent blood results, I'm looking at meat mincers/ grinders and bread machines since I'm a stay at home dad for the time being I need all the help I can get. Not to mention the minefield of keeping my little one gluten-free until we can get him tested properly. Anyway, good luck and remember that most people aren't even aware of the concept of cross-contamination and don't know what's in their food let alone what gluten is so don't trust their judgement at any point, despite how well-meaning they are. You're the only one that will suffer and its never worth the 'just a bit' better to go hungry take it from me. Instead of thinking back to things you enjoyed, think about things you could enjoy or get into... drink beer... well gf beer isn't great so get into whisky or wine or gin... all gluten free or refined enough to be gluten free. Like pizza? Make your own and be a snob, get into your cheeses (hard cheese and blue cheeses are low in lactose fyi) . Gluten covers and bulks out food so much that I just enjoy ingredients individually there's actually no need to try the substitution game - it will never be the same and its comparing apples to oranges, so dont bother. Most gf things in shops are full of sugar and fat, don't bother (stopped buying as much of it recently and I'm not missing it) . Don't ever try to keep up appearances- only thing you know is gf on the menu and is cooked separately (steak) but its lunchtime. I get it, the salad minus dressing (sneaky gluten), or the ice cream. Do I give a damn if it's breakfast.. nope I'm going to eat what I can when I can and if that means I eat a stupid amount of something safe while I'm out and don't find anything else all day then at least I'm not starving. But who eats out in this economic climate (not this guy).
Awesome thanks for sharing! I too Used to say "I'm gluten free intolerant" I fact we built a pizza oven on the farm and served gluten by the hundreds. Anyway I had a genetic test done that mentioned it and then also heard the low Iron level correlation not to mention the back end response. I'm now 2.5 months gluten free and my skin, energy, and weight loss I feel like a new person! I've lived half my life at 50%, watch out world. I'm still going to get the blood test, but the result is too obvious.
You can't get the blood test when you're already gluten free for over a month. The results won't be accurate!
Had Covid (very severe viral infection.) My Ménière’s has been suddenly symptomatic after being under control, major GI issues, constant issues with anemia despite diet, worse migraines than usual with brand new cluster headaches, a weird rash that my dermatologist couldn’t explain, brain fog, horrible pain.
New GI. She just put me on a GF diet starting today.
Thank you for this channel. I feel way less hopeless, especially as a huge foodie. Thank you, thank you, thank you.
How are you doing now?
I haven’t been tested yet, but know I have celiac. Found out by coincidence: for 3 weeks I was living on coffee and sushi due to some circumstances. All of a sudden, dairy was not giving me any issues, my eczema/dry skin cleared, my brain fog went away and I was having no stomach cramps + digestive issues for the first time in ever. Throughout the years, I had focused on restricting dairy, sugar, alcohol assuming they were the reason for my stomach constantly acting up. With age, my symptoms were getting worse and I just did a ton of tests in January to check for diabetes, thyroid + liver, worsening dermatitis. My B12 and Vit D are lower than in the darkest winter although I live in a tropical country 😂 Up until now the doctors were guessing I might have long Covid….
As much as I wish I had tried cutting out gluten earlier, it’s better late than never.
Thank you so much for your videos. I was diagnosed 2 months ago and just like you said my Dr said you have celiac go glutten free and ill see you in 3 months . I didn't even know what celiac disease was. One day driving by my self feeling lost and miserable not knowing what to do I came across to one of your videos on UA-cam and found out how it was the same thing happening to me. Actually I been learning to to transition going glutten free thanks to your videos every single one them on experiences and tips. you been
my new life saver. God bless.
I’m so glad you are better ☀️I’m just starting on my journey after only avoiding milk based on a kinesiology test. My belly has looked pregnant since I was 18. I’m 44 now. Been searching for answers forever 😩
Thanks! The difference really is night and day! 😊
Wow! Were you diagnosed with celiac too? It's so frustrating that it takes so long to get a diagnosis. 😞
Your story is so relatable, I was diagnosed after maybe 10 years of symptoms and too many doctors to count including a very expensive specialists! At 57 years old I was finally diagnosed!
@CookieMonster_ Yes! It has been difficult, but I noticed the improvement immediately.
@CookieMonster_ yes, I still have problems, I am definitely better than I was, I believe my age is a contributing factor
Your story is so refreshing and relatable! I was also anti-gluten-free and now have been diagnosed with celiac so am entering the world of eating gluten-free. It’s true that everything I google makes me feel like I have to stop living regular life. I also had mono a few years ago so that was super interesting how you shared that connection- makes so much sense now. Thanks for your positivity, clarity and humour! I’m looking forward to watching the rest of your videos!
Gluten never sat right with me I had all your symptoms but like you I cut it out but occasionally ate it but on my bloods it showed negative but after my doctor told me to learn to live with my symptoms, so I didn’t take that .
I did a challenge ordered my own test and bingo there is the positive test .
Don’t ever fast before a test . Gluten needs to be in your system to prove it .
I’m studying to be a functional medicine doctor and belong to the lancet journal group .
We just have to learn how our bodies react and figure it out .
Thank you for the video , it’s interesting hearing other’s stories
Not many things as frustrating as knowing something is wrong then going into the doctors feeling fine on the day and they cant find anything. Glad you advocated for yourself and got it sorted!
3:28 I know what you mean, Oh if I could tell all my experiences with doctors... lol I'm so glad you got answers, finally! Doctors dont think I have problems with gluten but they dont know why I have problems absorbing iron and other nutrients.
Playing wow tbc while watching this..
This video seems like my life. After 2 days of gluten free I'm already seeing slight improvements in the bathroom. I really hope this is what had been taking over my life the last 15 years.
I can completely relate to your story and I was finally diagnosed 2 weeks ago after 9 years of struggling with doctors. Thank you sharing about the lactose issue because I had no idea about that. I’m loving your channel! Thank you!!!
Hi Lindsay! Thanks for sharing, and I'm so glad you finally got a diagnosis. 😊
And yeah! I'm totally surprised my doctor didn't tell me about the lactose thing-I only found out through my own researching. I can tolerate it much better now though than when I was first diagnosed!
So happy you're enjoying my channel. 😄 Thanks for watching!
Thank you for sharing ❤
HI! I'm so glad to have found you and I'm so excited to keep watching. I have cut gluten from my diet when I found out I have to deal with Rheumatoid Arthritis symptoms. I also went to a holistic doc that did those crazy tests, you made me smile. Love this! I need help. I only have one recipe that works but I'm bored with it, I'm ready to explore!
Hey Ilana! Thanks for sharing. 😄 I'm glad to hear that cutting out gluten is helping your your symptoms. I can't believe you also had those crazy tests done on you too! Haha
I'm happy to help, if I can! What kind of recipes are you looking for?
Good channel. 66 years old, just diagnosed. In denial. Just don't want to do it. Symptoms were appetite loss, fatigue, and a little depressed. Don't see myself following this diet at this point in my life. Wife gets mad about that. I have been doing it about a week and hate it.
I've been diagnosed with eosinophilic esophagitis which is more rare than celiac disease. I'm not allergic to the gluten protein, I'm allergic to the whole wheat plant. But it's just easier to say I eat gluten-free.
Before I was diagnosed, I didn't know what was happening. And I started to vomit up more and more of my food to the point that I lost 30 lbs rapidly. What was happening was my esophagus was constantly swollen from eating wheat, to the point that I had trouble passing food of any kind.
So under the care of a GI specialist, I went through the process of eliminating wheat for my diet. Eventually my endoscopy results showed that my esophagus was no longer inflamed. Now I'm able to occasionally eat small quantities of wheat, for instance eating soy sauce. Even though I try to avoid this, I can eat some things with package warnings of being processed in a facility with wheat.
I'm also vegan, so I usually just do my own cooking so there's no problem.
It’s wild that I never put it together before. My whole 28 years ive had severe stomach pain and all the symptoms this whole time. stopped eating gluten to see if it would help. Stomach pains went away completely. Then I tested it a while later and ate pasta. Severe pain. So I don’t eat it anymore. Now more time passes and I don’t think about it. I go to my aunts to watch our football game and eat some breadsticks.. currently been up the entire night with the most severe stomach pain and all the stuff that goes with it. Found your channel and have been watching many videos and will definitely be getting tested asap! (Im also someone diagnosed with Lupus, an autoimmune disorder among many other chronic pain conditions)
No, it’s wild why doctors never put it together before. Juste imagine, what we know now they knew it all these years and couldn’t check it out for us
So I had mono in 2019...and I have no idea how I got it either. Then in 2020 I was diagnosed with having celiac after seeing a new endocrinologist. He ran a ton of tests on me for my initial visit for my Hashimoto’s and my levels were off the charts for Celiac!! I never put these two things together until now. 🤔
Thanks for the awesome relatable videos!!!
Wow! I really want to see more studies done on celiac and onset from viruses (like mono). My dad also has celiac (and other autoimmune diseases) and he ALSO had mono. There was also a thread on a Facebook group I'm in with people discussing this, and so many people began getting symptoms after they had mono! It's crazy! 😱
Thanks for sharing and I'm so happy you're enjoying my videos. ☺️
Thank you !!
Your video is really helping me. I would love to know more about celiac disease and some goods that are safe to eat.
Wow! What an experience! Thank goodness my doctors aren't as absurd as yours were! Still working on my diagnosis but in my mind, its obvious what I have. I have celiac disease.
You know your self 😉 I think many people diagnose themselves. Its also good to have it confirmed with the correct tests. Its not easy, but diet is the key.
I'm pretty sure mono is what set off my celiac as well, but doctors always just blamed my low iron on periods. I was finally diagnosed, but it took 30 freaking years!
35 here
Thank you for this video!!!
I think it’s time i actually get tested because I think I have IBS but now I wonder if it’s Celiac disease because I have all the symptoms you have described and I’m always extremely tired!!! I’m also immune compromised due to being born with a birth defect!!!
I’ve tried to go gluten free for years but I can’t take it anymore so I definitely have to cut out the gluten!!!
❤❤❤
I wasn’t diagnosed until I was in my 20s or 30s. I remember texting Mom because I thought something was wrong with me because I was hungry every four hours instead of once a day and I was going number two once a day every day.! LOL It’s both funny and sad. How feeling rotten can be mistaken as feeling normal when you don’t know any better.
Thank you for sharing. I was diagnosed a few months ago also having had a series of shitty dr appts.
My symptoms manifested like multiple sclerosis. I had severe vertigo and tingling and numbness. I had several MRI’s and a spinal tap. The stomach issues were suspected to be IBS or that I just had a sensitive little colic baby stomach. My genetic testing revealed factors inherited from both parents for celiac. I ignored that testing for about four years until I had a celiac attack and fainting. Gastroenterologist confirmed I have celiac. I absolutely love bread and Italian food but eagerly gave it up to feel better. Now I am having reaction to other grains (rice) so have to watch that in addition to being lactose intolerant. Good thing I was never a big foodie.
omg i just found this video and also grew up playing Wow and EQ 1 & 2! also I have some form of dysautonimia but I was sent to a cardiologist and never checked for Celiac, but recently they decided to send me to a GI to see if that is the problem.
It’s so wild that treatment from our doctors can be so vastly different.
I had symptoms for 10 years and finally a naturopath thought to test me for celiac. My TTG values were through the roof, and it was confirmed via endoscopy with a gastroenterologist. I've been gluten-free for 7 yrs now and I miss the convenience of being able to eat whatever is offered, and to choose anything I want off a menu. I really miss fast food burger and fries!!
Thanks for sharing, Laura! 🙏 I'm glad you had a better experience with a naturopath than I did... 😂
I totally get missing the convenience-it is near impossible to find a place to get a gluten-free burger AND fries at the same time. I think I've only had it once or twice in the last 5 years (and one of those times was on vacation). It's definitely a struggle. ❤️
@@robynsglutenfreeliving For sure! If you live anywhere near downtown Toronto (or ever visit), try Almond Butterfly (dundas location) they are a 100% gf restaurant that has a bakery as well as a bistro that has brunch, burgers, fries, onion rings, etc. It's a godsend.
Yes!! I actually recommended Almond Butterfly in my latest video. One of my favourite spots. 😍 I haven’t been to the Dundas location yet though-I’ll have to go soon! 🙌
@@robynsglutenfreeliving fries are gluten free, aren't they
Don't rely on a doctor to figure out what's wrong with you. You have to be proactive and take charge of your health. YOU need to devote time and do serious research. This is what I did when my son was unwell. I eventually figured out that he must suffer from Bartonella, and after testing, was confirmed by my naturopath/the lab. Fast forward three years, I'm having the following symptoms: gurgling sounds in my stomach, gas, insomnia, no energy, depression, anxiety, tooth enamel damage, 5 miscarriages, very low iron, joint pain, nausea... The doctor I saw told me to take an iron supplement 😂🤣 When I told my naturopath about my symptoms, she immediately suggested a bloodtest that checks for gluten sensitivity and celiac. I'm scheduled for this test next week......
Relate 100%... all of it, the doctors, missing bread like crazy. I wish a professional had taken this more seriously when a was a kid and complaining about stomach aches. I'm 36 now and gf since my mid 20s, but it got so bad before my mom finally suggested (a few years after knowing my dad's cousin got a coeliac diagnosis) that I might have the same problem... bless her, I didn't want it to be that at first so subconsciously i think i was looking at anything EXCEPT that 😅. I just love bread so much 🥴
I ordered my own test for $68 last week (blood draw). Just upping my gluten intake for a few weeks before I go in. I didn’t even bother asking my doctor, as she already thinks I’m a hypochondriac.
Results? Definitely need to advocate for our own health. Good luck!
@@tullymunro7696 hi, it was negative thankfully.
Glad to hear it. All the best
Such an informative video about Celiac thank you got diagnosed at 29, symptoms started at 21, doctors could not figure out what was wrong 🤦♂️
I also got diagnosed at 29 in 2018. I was really sick for about 1.5 years prior to diagnosis after the birth of my 2nd son.
@@marinaabbate3586 glad you got a diagnoses now you can heal 😊
I was having stomach symptoms from childhood throughout my whole life. I was even working on accepting how « sensitive » and picky I am when it comes to food, wearing oversize a long before it became a trend (to hide bloating), thought that I was fat and got anorexia trying to lose that « stubborn belly fat » as a teenager (ppl didn’t speak up about the difference between bloated and excess fat at that time). Sometimes it was hard to stay on my side, there seemed to be no suitable food for me, I felt better in my stomach only without food for 8+ hours but of course I felt awful and hungry at the same time. It’s such a relief to finally know the real reason and to know that I was sane all these years
I was having stomach symptoms from childhood throughout my whole life. I was even working on accepting how « sensitive » and picky I am when it comes to food, wearing oversize a long before it became a trend (to hide bloating), thought that I was fat and got anorexia trying to lose that « stubborn belly fat » as a teenager (ppl didn’t speak up about the difference between bloated and excess fat at that time). Sometimes it was hard to stay on my side, there seemed to be no suitable food for me, I felt better in my stomach only without food for 8+ hours but of course I felt awful and hungry at the same time. It’s such a relief to finally know the real reason and to know that I was sane all these years
Some disease. I like your humor ! Great job !
I was allergic to sour food since many years. Recently I had dry cough, shortness in breathing, weight loss and weakness. My wheat allergy tests are negative. I avoided wheat got relief but i am intolerant to pulses also😢. I have started homeopathy treatment.
Mine was tad more complicated. I have hemochromatosis which makes you absorb iron to fast but my levels were normal most of the time making us suspect the diagnose was wrong. I did the 23andme dna test this year and got back the results with a mutation for Celiac disease. I figured how likely is this but real the info it provided and got to the part were is said 10 to 20% get this rash at which point i went ahh fudge. I had the rash on my arms and legs off and on but i thought it was because of laundry detergent 😅. Once i got over the shock and thought about it things make perfect sense. I drink beer rarely but when i do i starting running a temp big time or eat pizza i get this urge to throw up. Of course the Celiac prevents iron absorption among other things which was counteracting the hemochromatosis and now that i am avoiding gluten all need to go back to the hospitals every month to give a pint of blood to remove the iron overload. Some days you can't win it seems but at least my gut is no longer doing backflips.
I’m going to suffer with this, thank you for sharing
I’m sorry to hear-it gets easier, I promise! I hope my video helped! 💐
I'm 36 and been diagnosed 6 months ago. I didn't have classic symptoms. My overall blood tests were OK, but I had increased value of liver ALT. No one knew why. It took 10 years and I developed anemia. I was tired and looking sick and started to loose weight. Blood test for gluten intolerance were very high. Doctor take few samples from my duodenum and here I'm gluten free :)
How are you doing now a year later?
@@alyassery11 I feel perfect. I'm regularly checked at gastroenterology ambulance once per year. Blood tests are normal. No increased ALT anymore, no anemia, enough of vitamin D, B12,B6. I have gained 10kg, mostly muscles because i do sport and hiking. I'm not pale anymore and feel energized. I don't have to force myself to eat. Now i have to control my calories income because I'd like to eat everything 😆
@@respin007 glad to know you feel better but please don't eat everything 😹
I have a rare genetic disease. Tyrosinemia Type 2, it's a metabolic disorder which affects my liver & my kidneys. If I eat any foods or drinks that are not free of gluten, dairy, wheat or meat I experience stomach cramps, nausea, constipation, diarrhea, headaches, low blood sugar, vertigo, fatigue, brain fog, sinusitis etc.
Kinda a bit similar story of mine. I was fully okay since a kid until I got Infected with (Helicobacter pylori) a foodborne infection from restaurant food, and after this incident the autoimmune got over-reactive and my celiac disease has been activated and I started to get always so bloated extreme fatigue, brain fog, and nearly 51 doctors who all says its mental issue and anxiety, all misdiagnosed me until one doctor opened my eyes on food intolerance IgG and I got the knowledge that there is something called gluten, but I ate gluten contacting food again as I only thought it's not that big of a deal as its just intolerance. Later after 4 years, I went to a physician who I told him about my case and he said it could be celiac disease and the test came positive with a high number, and after 2 years of celiac tests and on a gluten-free diet then I got better and normal.
it's hard to get diagnosed quickly, I got tested and know about my celiac when I was about 23 years old, and yes I use to eat only gluten, and was my fav, but yeah thankfully I got the right diagnosis.
Interesting. It was a naturopath that was the first doctor to check for celiac in my case. It took about 10 years of symptoms and many doctors also. She didn't do the energy testing thing. She was the best doctor I've ever been to to this day. I was sad she retired a few years ago.
I’m glad you had a better experience than I did! There are totally some great naturopaths out there that actually do legitimate testing. One of my friends had a proper celiac disease test done by a naturopath. Unfortunately, the one I found was not one of those naturopaths. 😂 Thanks for your comment! 🙏
Just went Gluten free dairy free. My stomach feels so much better.. Im just trying to find different things to eat
I could check almost all the boxes and had to diagnose myself. I have no medical training 🤦♀️
since i been gsluten free i lost so much weight for 7 years now
I have very low iron stores, it was 11.6 last I checked. And it was low for over 2 decades. Do you know how long it took to restore your ferritin levels(iron stores) after going gluten free?
What test did you have to identify celiac disease? Please reply this will help me. As I have some same symptoms
in 2014 i was sent to the ER several times and spent nearly a week there for each visits because of severe dehydration (non stop vomiting and diarrhea) after eating pizza and kfc chicken. yup they didn’t do the future test so i just accepted my fate when the symptoms were coming to attack.
several years later; now im 23 yo girl with stunted growth because of years of undiagnosed celiac..🙃🙃
Hi Bela! That is beyond frustrating! I can't believe that so many doctors were unaware of celiac disease. I hope you're doing better now. 💕😊
I’m just shaking my head reading your story, I’m so sorry, I don’t understand how Drs aren’t picking this up. It’s out there more than ever.
What were the tests that you mentioned turned out positive ?
3:33 He probably also has that sign in his office that says "Your google search is no substitute for my medical degree."
4years ago.. I lost weight, stress, depression and stuff, so sick al the time and tired, fainting when i was on the toilet.. Because of the pain😅😢 Rashes on my skin.. Went to the doctor and I was diagnosed with celiac.
The bloodtest was enough to diagnose me.. and it's also in my genes. Since my diet, I feel so much better!
You are the only other person that has said they faint on the toilet. I would feel the fainting coming on and the eruption occurring and did not know whether to hit the floor or try to faint sitting up. My doctor explained it to me and said my blood rushes to my stomach when I am having a celiac attack and thus the fainting. Fortunately for me, once the initial eruption occurs, I can hold the other eruptions for about a minute and hit the floor and then jump back on the throne. I might have to do this three or four times before the attack is over. Good luck!
@@dianewilliams9729 yes i know what you mean! X
My GP say do the Celiac test. The gastroenterologist say no. After 6 years of Gluten intolerance..you are Celiac! Oh 😮
I became celiac in my 60s, I now find sugar makes me very ill. I become very tired ache all over, I get headaches, dryness of the eyes and mouth. Do any other celiacs suffer after eating sugar ? Just wondering ? 🤷♀️
I’m not ingesting any gluten however get glutened whenever I go to my friend’s house. I understand that the kissing can be problem since she not gluten free. But also been to her house and been so careful to wash hands if touch a door knob or light switch. And I don’t eat anything at her house. I don’t touch any of the gluten free food I eat either. Need help please.
Mine was a bit different I was throwing up like crazy and I had crazy crazy dierria and than I stopped pooping altogether and my belly was getting bigger and bigger and bigger my belly looked like I was eight months pregnant and than I had acid reflux so my throat was burning me like crazy and than I would start to vomit so I started eating one meal a day or drinking one glass of water a day just so I would not throw up three hospital visits numerous tests everything came back negative and than five doctors appointments and on my 5th and last doctor visit my doctor finally revered me to go and see a gastroenterologist and than he recommended me to do a double colonoscopy and there my inner stomach lining tested positive for gluten sensitivity
❤
Omg I really hope I don’t have this I love croissants and don’t want to be second guessing everything I eat when I go out,but this makes sense I’m having all these symptoms also do any of you suffer with pins and needles in your feet it’s really annoying me and feel like I can’t feel my feet,also I have got the chronic fatigue it’s horrible no matter how much I sleep I’m always tired,also I am lactose intolerant but not as bad as I used to be,also I don’t eat red meat so I don’t know if I’m anemic or got celiac disease just hope the doctors can sort me out as this is affecting my daily life 😢
I used to think I just hated pizza and toast. Im in diagnosis limbo in that I have DH, positive homozygous hladq2.2, dental hypoplasia, and malnutrition, and positive serology but I didnt have marsh 3 on my biopsy. It sucks tbh. I started eating GF only and realised I actually love and enjoy both, i just didnt enjoy getting sick all the time.
Thanks for sharing! I'm sorry to hear you're having so much trouble getting a diagnosis. I totally get what you're saying-I used to say all the time that I didn't want to have pizza because I didn't want to be bloated...not realizing that gluten was what was causing that. I hope you have success on a gluten-free diet. 😄 It can be hard to transition, but it's definitely way better than trying to manage daily symptoms.
What has your experience with DH been like? I fear I have it too!
How long after stopping your gluten consumption did you see your symptoms disappear?
I started to feel better after a few days but I believe the intestinal damage fully heals between 6months to a year in
You look like rory gilmore
I love your videos.
Hookworms got me back eating gluten. It's glorious.
Hi, did you test your ferritin level? Or just your iron levels?
I honestly don't really remember, but I know I've had them both checked in the past. My hemoglobin levels have always been normal, so I think my body has always had just enough iron to get by. Because of that, I've never technically been considered "anemic", but I've always had low amounts in my iron stores. 😊
Well I just turned 27 in August, and August marks the 1 year mark of me being diagnosed with celiac disease. Not gluten free by choice either, and your story resonates a lot with me. God I'm so curious to ask you questions. I too had Mono in 2018, and my doctor had prescribed medication to me which I took and had an allergic reaction to. I hadn't kiss anyone around that time either. I was quite confused.
I still am confused tbh, did I actually have mono then? my body didn't react to the medication accordingly. I did have COVID before my diagnose, did that have anything to with Celiac? Man I'm middle eastern and most of our dishes are made/eat with gluten. Life has been quite depressing as a huge foody that used to travel to try new food in different countries.
I did blood work, scale was from like 12-25 for regular numbers. I got 27 (highly sensitive) but a doctor had discussed with me that number is kinda still on the low end vs other Celiac patients having readings in the 100s.
I did an endoscopy, doctor said I think it's Celiac? maybe it's not. So what is it doc?
Idk. They asked me to do more blood work and stated that it would inconclusive, and to try just having bread again. Idk what to do. Maybe you're reading this, maybe you aren't, but thank for posting this video online. I've been too afraid to research Celiac/Gluten on the internet, although I do take it very seriously. But you just provided me comfort that I haven't felt since my diagnosis.
Wow. That's really bad. However being gluten free doesn't stop one from being a foodie. Gluten foods are often the cheapest filler items on a menu and there are delicious dishes that naturally gluten free in every country of the world. Good luck.
@@lannguyen-pu1db You're not wrong. Thank you for this message, I appreciate it.
For me, it was my local HOSPITAL that gave me the run around, first blaming my antidepressants (apparently that specific Dr is well known for blaming everything on antidepressants), then told me it's normal for people my age, then they decided I just had acid reflux... My Dr hates the local hospital for a reason (obligatory Not USA)
Even though your blood test was high, was it still within normal limits?
Honestly, I don't even know what my blood test numbers were! Because I went to the walk-in, I didn't get a copy of the report. I believe it was above the normal limit!
It was high enough that they didn't seem to have any doubt that I had celiac. They even let me start eating gluten-free right away instead of waiting until after the scope (2 weeks later) because they figured the damage wouldn't be able to heal that quickly!
I was told I’d have to eat gluten for 2-4 weeks for it to be detected in a colonoscopy. I told my Dr I wouldn’t be able to walk out the door, and I wouldn’t be able to get out of bed. So it’s never been picked up in a colonoscopy as, I live GF, I don’t have a choice.
Did you ever find out why white bread made you feel worse that whole wheat bread? That’s currently my issue and I’m confused.
Wow… no, I never figured this out! But now I really want to look into it. Like how come I could eat seitan aka “wheat meat” made of pure gluten and not white pasta?!… ahah. I will report back if I find anything out.
All I know now (after years of not eating it) is I can’t handle ANY of it. 🤣
Interesting… I have an endoscopy coming up next week. I’ll ask as well. If I find any new info I’ll report back too. Thank you.
I’d say it’s much more restrictive to be sick all the time.
how old were you when you were diagnosed?
My husband and I have been playing since Vanilla. For the Horde!!!
My gluten test is Negative. But doc said to go gluten free.. M feeling bit ok. But how can i gain weight i have lost weight
Hi Rizwan! Unfortunately, I’m not a doctor so I can’t offer you medical advice. I’d get a second opinion to see why you’re losing weight! Wish I could help more, and I hope you feel better soon! 💕
@@robynsglutenfreeliving thanks for replying... I m feeling better with GF diet, can i gain weight without gluten?
3:10 I know exactly what you are talking about! Haha..
How about hairloss.
Saaaaaaaame!!
"He told me to eat some steak" LMAO
So helpful... 🤦♀️ haha!
Omg i think this is it! Have all the complications. My gut is inflammed and IGA off the charts! In so angry....these drs diagnose without doing anything or asking questions. I despise medical community! I had mono. Infertility. Hair liss. Lupus joint pain. Constipation. Mouth sores. Gum disease.. these poor excuse of Drs! Nausea vomiting. Broken bones. Neuropathy. Anxiety. Im fuming. Getting rested gene this week. My Niece has gene. Her boy has it. I bet this is it! Chronic gastritis. Im gonna call this dr..ask him why he let me suffer! Chronic pain.
Bowel disease, lactose intolerant, seafood allergy, sulphur allergy, asthma, hay fever, chronic sinus infection (plus 4 surgeries later).
Turns out -- Celiac!
Still in recovery but doing much better 😁
No thanks to the chorus of useless doctors though.
Great vid 🙏
Oh my gosh! It never ceases to amaze me how hard it can be to get the right diagnosis. I’m glad you finally figured it out. Thanks so much for watching! 😊🙏🏻
Wow I'm 45 Hispanic male that didn't even know what gluten was
Now when I see a person with autoimmune diseases, underweighted, with iron deficiency, always bloated or other chronic stomach issues, + depression or anxiety , I tell them to have celiac blood tests.
WoW, I know what you're talking about 😉.
OMG YAY! I think you're the first one! Haha! 😂 Do you play it, or just know of it?
My husband has played since the beginning. He has a level 100 troll Shaman (hasn't played in a bit). I created a Tauren warrior (Frogg). I don't play in guilds or anything, just with my husband and maybe a few friends. We haven't played lately. Fun fact...Warcraft the movie was filmed here in Vancouver Canada, my husband knows the potter (his line of work) who was commissioned to do some clay beer steins for the movie so he made us and some friends some from the same run (they're all numbered). We all cheered when the scene came up with them in it, lol. Not relevant but a fun connection.
@@jencharlesworth6229 Wow!! This is so nerdy and I love it so much! HAHA! 😂🙌
That's awesome you play together! (Also, I'm secretly happy you both play Horde-I still have my FOR THE HORDE shirt from high school. 😈). I would love to play again-I need to get Everia, my lvl 76 undead priest, to 100-but unfortunately I just don't have the time anymore. 😭 I think my brother still plays though-he was the one who got me into it in the first place.
That is SO COOL about the beer steins-that must have been so exciting! I'm so jealous! 😱🍻
@@robynsglutenfreeliving can celiac eat apples
Did celiac cause you to loose weight?
Thanks for reaching out! 😊 I didn't see any major weight loss from celiac, although I know that it can be a common symptom. I did notice the effects of malnutrition though (low iron and B12 levels).
The funny (not funny) thing is that I could have find out about my diagnosis 6 years ago when I saw a very expensive and qualified doctor in Munich but the interpreter is an asshole who didn’t translate it to me (I had medical travel). They even gave me a list of gluten free grains, I couldn’t get why, thought it was just a trendy thing in Europe.
"forever 8 years old" 😂😂
How the heck can you be against ANYTHING like that!!?? You just chose people really enjoyed not being able to eat ANYTHING!? It says a lot about the type of person you are.
Hey there! I’m not sure if you watched the video or if you’re just reacting to the thumbnail image, but I never had anything against PEOPLE who were gluten-free. I just would never CHOOSE to order a gluten-free meal before my diagnosis. I also am not one to jump on a fad diet, which I generally assumed that gluten-free was before my diagnosis. (I, like many people, didn’t really know much about celiac disease pre-diagnosis.)
I say that I was “against gluten-free” because it’s ironic as I actually ended up being someone who had to eat it!
Lol doctors are a freaking joke.
I know from experience too.