![Support for Celiac](/img/default-banner.jpg)
- Видео 5
- Просмотров 8 760
Support for Celiac
США
Добавлен 10 дек 2021
Support for Celiac is about offering support for anyone who has Celiac Disease, who think they might have Celiac, who is family or friend of someone who’s affected by Celiac, or anyone who simply wants to learn about what Celiac is and how it affects people who have it daily.
Things we will talk about:
-Symptoms
-Diagnosis
-Managing Food and Relationships
-Scientific Evidence and Discoveries
-HOW WE FEEL
-Daily life
Things we will talk about:
-Symptoms
-Diagnosis
-Managing Food and Relationships
-Scientific Evidence and Discoveries
-HOW WE FEEL
-Daily life
Interview with Beyond Celiac - Answering Your Celiac Questions
In an interview with Valerie Kraft at Beyond Celiac we discuss who Valerie is, what Beyond Celiac's mission is, and what you can do NOW to help support Celiac Disease and all that it effects.
0:00 Introduction
0:25 Valerie's journey to working at Beyond Celiac
3:38 How to share YOUR VOICE with a community behind you
5:43 Beyond Celiac's MISSION and Valerie's part in getting there
9:14 What can you do to SUPPORT Celiac RIGHT NOW
12:08 Looking at the BIG PICTURE
13:44 What ONE person can do - a brief look at Beyond Celiac's CEO and Founder
14:38 How to "COMPLAIN MORE" about Celiac Disease
0:00 Introduction
0:25 Valerie's journey to working at Beyond Celiac
3:38 How to share YOUR VOICE with a community behind you
5:43 Beyond Celiac's MISSION and Valerie's part in getting there
9:14 What can you do to SUPPORT Celiac RIGHT NOW
12:08 Looking at the BIG PICTURE
13:44 What ONE person can do - a brief look at Beyond Celiac's CEO and Founder
14:38 How to "COMPLAIN MORE" about Celiac Disease
Просмотров: 301
Видео
What is Celiac Disease? What is gluten?
Просмотров 962 года назад
Find out what Celiac Disease is; plus what gluten is and how it plays a role in Celiac Disease
You’ve Just Been Diagnosed with Celiac, Now What? 3 Things To Do IMMEDIATELY
Просмотров 6222 года назад
3 Main things to do right after you've been diagnosed with Celiac Disease
My Celiac Story - the Road to Diagnosis and Beyond (Refractory Celiac)
Просмотров 8 тыс.2 года назад
Discover why I created this channel and listen to how I got diagnosed with Celiac Disease - and Refractory Celiac - plus some of my struggles along the journey so far.
Support for Celiac Introduction
Просмотров 582 года назад
A quick introduction to what Support for Celiac is about. I talk about the things we will discuss in this channel and why I created it.
I just was diagnosed with celiac disease. I have a lot of your symptoms.
I have a gene and have all the symptoms
Just subscribed
Hi dear ...now i am suspected case of refractory celiac i am from libya may i now the name of your pathologist?please help me as soon as possible
honestly so many cross contaminations for Celiac and cross reactivities. Grains inflame and getting them out is something to try. I only eat white rice and very very rarely. Also organ meat supplements and bone and marrow supplements. It can be super hard at first but I know you can do it!
Do you think is it normal if I still losing weight even after I changed to gluten free diet ????
It's took 16 years to finally be diagnosed with ceilac. Really poorly for along time . Finally starting to feel much better Clear head . No dizzy doos. Not on the loo all night . Iron levels better . I can go out without ohhhh I need the loo. Follow the gluten free diet Doing much better now . I had gluten in my brain . Levels now really low . So much better . No dizzy or fainting Or going back to bed . Iam so so happy getting better and feeling better too . Xxxx
I got a presumptive diagnosis from my naturalpathic doc. Thanks for sharing your story.
The Sound Volume is a very low otherwise good story from an 88-year-old man whose daughter-in-law suffers from Celiac disease. From London, England.
don't worry but its some time horrible i can understand
Thanks.
I’m sorry to hear of your journey gut problems just go round & round wish the best
Thank you for this. Just learning at 57 that the wheat allergy I was diagnosed with at 3 doesn't explain the skin rash- and until today I'd never seen a picture of the exact rash I sometimes get on my hands, and sometimes even more places. What an eye-opener, that I can "check all the boxes" on this, not just one. Let the learning and the change begin! ❤
Do you know that there is a great and effective herbal remedy? For herpes diseases i contacted herpes virus from my cheating partner but thanks to DR KURIAMA, who completely cured me of the virus with his effective herbal medicine, today i am completely free of herpes......
Thanks for sharing. Are you aware Salt & Pepper has huge potential for cross contamination? The way these products are transported around the world are usually in the belly of Grain vessels that they do not clean out. Some of the cheaper disposable grinders now reflect 'may contain' statements, hard to see but i found on it reflected on my 100% Sea salt & my pepper corns containers! Good luck
So sorry to hear of you problems. Have you tried Fasting? ❤
Neurologist diagnosed me ,gluten ataxia .he thinks I had coeliacs a long time .took me to not be able to walk to find out ..anxiety ,brain fog , vertigo ,stomach issues ,migraine of the chart . Still struggle with migraine but not as bad
As a Functional Medicine Nutrition Counselor and a Celiac I can attest that there are litterally hundreds of glutens and gluten mimicking proteins. Corn contains Zein and Rice contains Orzenin. Look up the name of the proteins for Barley such as Hordein. So tell me why they only test for gliadin? Why?
Have you tried going pure carnivore for a while? Lots of doctors on RUclips sharing information on it. A total elimination can help your gut to rebuild itself. Meat alone, especially red meat, is nutrient dense, nutrients are bioavailable and it gets digested further up in the digestive tract so it gives your gut a break whilst providing top notch nutrition for your body. Also must sunbathe, expose your midriff to early morning sun as much as possible to repair your mitochondria (see Dr. Jack Kruse's work). Celiac and other gut complains are long term damage caused by poor diet, possibly already inherited from your mother's diet and lifestyle when you were in the womb. It will take a long time to repair, not a few months. Be patient and be kind to yourself. We have all hurt our bodies because we didn't know any better. All grains are your worst enemy but when the gut is damaged to this level, all plant foods (which are full of toxins, low in nutrients and hard to digest) cause harm. You need to rest it fully. The above are the only things that worked. Some references: Dr Zsofia Clemens, Dr. Anthony Chaffee, Dr. Ken Berry (whose wife put Hashimoto's into remission), Dr. Cywes, just to name a few. Happy healing ❤
U had an UNGODLY rash for well over a year. THen I had a digesitve "episode", inovlving much blood. My entire digestive system hurt fo 5 days, during which I had no appetite and only drank water. SUrprise, surprise!!! THe rash started to go away. I then emabrked on an elimination diet. You guessed it...the last thing I added back in was beer and bread. Rash began to come back. I tried to get a blood test, but the lab screwed something up. By the time my MD told me, I'd been off gluten again for about three weeks. I was NOT about to go back to it just for a test. I then went totally grain free for four months. Now I'll eat rice occasionally, and don't seem to have a reaction.
What slays me is peoples' reactions. Yesterday was Easter. My sister got a chocolate mousse pie. (My favorite). In a crust. She thinks I can just scrape out some mousse. My other sister thinks I can "ease" back into it. Both of these women have husbands/kid with all kinds of allergies. I would NEVER suggest my brother-in-law (allergic to tree nuts), pick out the walnuts in a dish. First of all, I wouldn't make such a thing if he was going to be around. No one tells people allergic to shrimp, to just "pick them out" of the sauce....
Also the people who "claim" to be gluten intolerant, cause maybe they think it's cool. Then they'll eat a pice of cake. Gives those of us with severe problems a bad rep. They don't get the fact that this is a PAIN IN THE ASS!!! I would LOVE to have a slice of pizza!! Or a pice of garlic bread!! But I (we) simply can't. EVER!!
PS. In addition to rash going away, so did ALL of my achy joint pain. ANd tinnitus.
Great video: hope you’re feeling better. I had the same issues as you.
I'm a senior and have been vegan for over thirty years for ethical reasons and gluten-free for around twenty years, not by choice. I wish you continued improvement with your health. Thank you for sharing.
Hi, thank you for this. Celiac disease is not nice. You need a properly qualified gastroenterologist to guide you and help you get the best relief from this disease. Non specialist healthcare professionals do not have a good enough understanding of this pernicious disorder. Also, it is hugely important to avoid cross contamination as it happens more often than we're lead to believe. A degree level qualified dieticians is also invaluable and not to be confused with some of the lesser qualified and experienced 'nutritionists'. Good luck to everyone who has this nasty life long condition.
As I was reading the comments so many things have been my experience. I turned a corner when I found a NAET practitioner here in San Diego. Game changer!
Thank you
I appreciate this video so much! Amongst my family and friends I am queen of the medical issues. I have been feeling absolutely horrible for years!!! What is worse my husband has this statement he always makes where he tells me "If you think you all the time you don't feel well then you won't feel well!" It's so damaging to hear that when you have so so many symptoms. Don't get me wrong I love my husband but he seems to think you can control what happens to you. I was diagnosed with Hoshimoto's disease 10 years ago, then to make matters even more complicated Fibromyalgia 3 years ago. All the symptoms of both of those disease with the painful joints, the foggy brain, the loss of balance and hair loss and the horrible debilitating constipation, the restless leg syndrome, and the constant feeling as if my body was starving even when I ate! I have so much fatigue, I don't sleep, I always have this drawn unhealthy look as if I am being starved to death when I keep enough food in my house to feed five families. I just don't know what to do! not to mention right in the middle of it all I'm hit with menopause and the sweating and then I'm freezing! So about a month ago I got this sore spot on the back of my thigh that was the size of a quarter and it was red and hurt and then it started to itch like crazy so I scratched and all of a sudden tiny little water filled bumps rose up and became pus filled! I notice everytime I would drink or eat while this occurred I felt as if I needed to vomit! My doctor said it was a Fibro flare up! but that didn't explain enough for me. I realized that on the back of my leg there were about 4 other scars from this same rash having occurred before but because of going through so much with the other Autoimmune diseases i didn't notice it. It wasn't until I saw a picture of Herpetiformis dermatitis and I took a quiz about Celiac disease and the only symptom I didn't have was the constant runs but I had the constant constipation! Also I was told being B12 deficient was also a factor and my blood test showed my body barely makes B12 and I had to be given shots for the rest of my life. I am all messed up! but I will be going to get tested for Celiac Disease!!!!! Also, when I was diagnosed with Hoshimoto's disease it was found that I was born with bad gut enzymes so all these things run together. I appreciate your story. I wish people could understand these symptoms are not all in our head!
I was diagnosed with all the same issue you are having in 1996. Really nothing could be done but I knew I had high inflammation so I went on an anti inflammation diet aka Keto diet. Since my food intake was different and I kept a record of intake and then as my insulin leveled off I tried fasting. (After you cut out sugar/carbs and adjust to intermittent fasting and then to the One Meal a Day - you can find good info on youtube) it is easier to see what your body is doing in response to food. (I wasn't even trying to look for food issues, it just happened) I broken a 48hr fast by eating some gluten rolls and my feet/hand muscles became horriblly/painfully contracted for about two hours . (about 90 mins from time of ingestion). I could not believe it so in about 4 weeks later fasted again (24hr that time) and went to the same restaurant and ate 5-6 delicous gluten rolls - same reaction. Also when I went on keto migraines eased off but when a couple years later I ate some rye crackers and also happened with Cheeze Its (both eaten early evening) migraine the next morning. Anyway, doctors can't find anything. I do believe that Chronic Fatigue/Fibro is mainly caused by gluten and you'll have to do this system change yourself. I know the frustration, I 'm 74y old next month so have had these problems for the past 3 decades. I don't look ill and look younger than others my age. It is hard for me to participate and people just don't understand. I PTL for my loving husband. He doens't really understand it either but tries. Please don't give up. Get on youtube and learn how to do the gluten diet. Listen to some upbeat or favorite music on earphones and walk. Start at just 10 mins and gradually increase the time. It is physically and mentally important. Look to the Lord God Creator who loves us for that necessary strength and determination. You can do this. I always compare my circumstance to the suffering of others and can see where things could be much worse. There are so many ill and homeless but we have a home, husbands and a computer and good, strong people out there that are looking for answers for us. :^) Many blessings and success, pb
I forgot to mention that I didn't find out about the Keto diet until about 2018. I've also been taking many supplements over the years that helps with inflammation. Fish oils, (Krill is best) cucurmin , GLA, ALA , CoQ10 and many others that you can find info on youtube. However, pain etc has really been better after the gluten free diet. :^) Blessings, p
Do you have endometriosis?
I am just curious how to find if I am refractory faster than 3 years? I am 4 months on a diet and my condition is 3 times worst. Not so much in the toilet but I am constantly tired and more tired after 4 months on GF diet. Pain in joints is my second simptom (2 years now),atopic dermatit is my third simptom, recently I discovered almost 0 vit D and very low B2, and low ferritine and folat. My personal doctor is not assisting me, she makes thigs go slow in purpose, she said "you do not look sick, you do not need other doctor" I am trying to pay aditional doctors and blood tests by myself but I couldn't afford it for long. And I don't know what I am suppose to do...
I forgot to mention I am on scale "Marsh 3a-b"
It’s sound ridiculous, but I’m telling you… I got so frustrated after 15 years of searching for the answers that I guess I was desperate enough to try it. A loved one had success with diving into the world of the “mind-body connection.” Crazy, right?! I would never have even given it a second thought if it hadn’t come from someone I trusted. It’s basically the concept that when your limbic system is fried, you develop physical symptoms and actual conditions. Neuroplasticity. THIS HAS BEEN LIFE-CHANGING for myself! In SUPER basic terms, When I stopped consuming myself with my symptoms, googling, supplements, endless appointments and started living my life, learning to have a peaceful mind and trusting my body’s ability to heal, I FELT worlds better. So many people have “cured” food intolerances, pain conditions, digestive distress (myself) and so much more, by re-wiring bad/destructive thinking habits. I hope you look into it. It’s NOT pseudo science. It has changed my life! After 15 years of pain, anger and frustration, I almost can’t believe it was as simple as healing my mind.. The root cause. Certain personality types are more prone to developing this issue. Usually starts with a bout of stress, which it did for me. Look into the teachings of Dr. Sarno, Dan with Pain Free You.. and start there. Best wishes to all of you!
I have been diagnosed with Celiac 6 years ago and since then I discovered that I basically can not eat any grains, as my body mistakenly recognizes it as gluten, and also can't eat eggs unless hens were true pasture raised (not fed by grains) . Same for dairy products, if they mix grains into their food I will react. So, I am ultrasensitive, which doesn't leave me with a lot of options. My life is revolving about what will I eat next , and hoping that I won't get a reaction. Now , if I get reaction, besides gastrointestinal symptoms, I get a full range of systematic neurological symptoms as well, skin rash, body aches, and it takes good 2-3 weeks to start feeling normal again, sometimes longer. My whole life is turned upside down, and it sounded so simple in the beginning when they told me, you just stop eating gluten and you will be fine.....
Thank you for your video. I have been sick since early 2020 in and out of the hospital. I started noticing when I eat pasta and bread I would feel toxic. My body almost shuts down when I eat gluten. I wont be able to eat, throwing up all of the above. The fatigue is the first symptom I get. It washes down my body then the rest comes into play. I hope that you and everyone else that has this horrible diease the best in life. I'm happy that the cause of my endless sickness has come up and I can rest easy knowing that I am ok. After 3 years of this I thought I was going to die. Got scanned for cancer and the casual list they go through in the er and nothing came up at all. It was horrifying. Again, thank you for your amazing video.
Has anyone tried fasting at all? I heard a 7 day fast helps heal
Thank you for sharing. I am very alone with this
I find probiotics essential in my daily battle with celiac. I use Align brand.. no affiliation with this brand but after trying others with no results.. I will keep using these until they stop working. Initially I took one tablet daily as recommended but now I take one every other day( helps financially) which still really helps. I have been following a strict gluten free diet since my diagnosis 10 years ago. But you are right, even on the diet, it doesn’t eliminate all residual effects of celiac. I hope you get this comment. Take care.
Thank You. We'll get through it somehow
I have been gluten free for 3 years. Still experiencing symptoms as well Losing a lot of weight. Going back to the doctor next month. Are your antibodies at normal levels now? Just curious.
I was diagnosed Friday. I’m wondering if others had trouble getting family members to support them. My family is acting like it’s no big deal and suggested I eat candy canes for Christmas and stop talking about it. 😂 I’m terrified to even go to Christmas dinner at my mom’s house. They are just clueless.
Same here kinda. My family thought it was no big deal and were pretty frustrated with me. Thankfully it doesn't last forever.
Hi..thankyou so much..😂can i hug u..peace 🎉🎉🎉
I really feel for you and what you’re going through. I have microscopic colitis and wonder if you’ve been tested for that? So many of the symptoms seem to be the same.
How is it going with your refractory celic disease ?
2018 Marsh 3b/3c. 2022 Marsh 3a and last month I receiced the following statetement: gastroparesis, incontinent Cardias, eosinophila with chronic duodenitis. My diet has been : raw meat, white fish, salt, olive oil, water, lemon and coffee. I was diagnosed with lactose intollerance long time ago and I almost removed it from my diet 10 years ago. I then took the fructose and glucose test and in both i was intollerant. Now i have vitamin d, folate, B2 and most likely other deficiencies but at least with the carnivore diet I am in remission. I have noticed that poacee/graminacee family trigger the same autoimmune reaction. Reversed my homocisteinuria, my nerve damage ( Babinski sign and with the MRI the cerebellum has recovere) Now I am left with zonulin/gas 65 and with the fatsoluble vitamin test and we will see where it goes. I understood that celiac disease is like all the other autoimmune diseases just the beginning.
Thanks for sharing. Really hope you’re able to find how to feel better.
I had to start eating meat as well after a celiac diagnosis. My partner has nut, soya and pea allergies, and most vegetarian products contain either wheat or those allergens, so protein was near impossible to do without meat. I know how it feels to try and do everything within your power to improve things, and it not solving the problem. It's frustrating and makes you lose sight of hope. I had bad psoriasis for about 10 years and doctors didn't seem to be able to understand that I didn't just have psoriasis, but it seemed to behave very differently to other people who had it. It was extremely inflamed and would constantly be itching despite the medication they would give. After several months gluten free, the psoriasis has nearly gone and the small bit that's left is unnoticable. It's unbelievable really, I tried everything under the sun until I cut out gluten. That said, I seem to be lucky, but I hope something turns up for you for your particular difficulties.
Maybe stem cells might be an interesting treatment...
Thank you for sharing. I have been diagnosed for over 10 years. I am very sensitive and do not eat out except occasionally at GF dedicated restaurants. But, like you, I have many allergies, so eating out is not easy either, even at GF dedicated restaurants. Just curious, is your Immunoglobulin A very elevated?
Thanks for sharing. ❤
Diagnosed Febuary 2022, have dermatitis herpetiformis confirmed by biopsy. Follow a strict gluten free diet but as you stated I'm not improving. More and more bad days. This is 1st I've heard of Refractory celiac diease. Following for more answers. Thank you for your story.
I have had a rash the past 7 months. It began with 5 months as a symmetrical rash then changed to random areas, not symmetrical anymore. Looking for helpful information on dermatitis herpetiformis. Do you have any recommendations? I read somewhere that when you get a biopsy make sure you go to a dermatologist that is familiar with DH or they will most likely take the biopsy from the wrong area leading to a negative test. My dermatologist asked me "Where would you like me to take the biopsy from? My reply, "I don't know? I've never done this before." Then I said "how about there?" My results came back today as negative. I am so itchy. It starts as dry spots, then water blisters which crust over, then it turns to dry leather-like skin which continues to itch. I don't know what to do next. Does any of this sound like what you experienced with dermatitis herpetiformis? I need help.
Im sorry you have been struggling so much, I’m right there with you. best wishes always thank you for sharing your story 🤍
Has anyone used medical marijuana to treat your refactory celiac?
yeah, not help
Look up Colton Turner.
Thanks for sharing helps everyone in our community. It takes years to get remotely normal after diagnosis. Most Celiacs have reduced or compromised microbiome composition and this will result in multiple food intolerances. As things heal you will slowly be able to add things back in. It took 6 years for me to be able to enjoy small amounts of eggs, corn and nuts and seeds. What a joy it is to have these sometimes. I still have a small list of food i am working on but the point is to be patient. Keep testing foods routinely and don’t go too long without as this makes it harder to bring back. Small amounts routinely! Finally I will tell you something that every Celiac should be told when diagnosed. There is no such thing as a gluten free diet. Gluten free foods are allowed to contain small amounts and they do. Gluten test kits do not match the human immune system. It’s all designed to help us have a low gluten diet and be sane. Quit trying and thinking that you will conquer it and get on with being the best you can be. You will be happier. I try to eat a nutrient dense diet and only allow small amounts of packaged food. It’s the best we can do for now. Even if you are refractory you still need to be happy and enjoy your life. I believe you will improve with time and gluten reactions will become less intense. Hope this helps.