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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 CZcams 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.

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!

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...

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.

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.

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?

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.

Thank you!

I understand your frustration. I was diagnosed with CD in 2002. Never heard of it before, went on a GF diet, never felt any different, so questioned whether or not the diagnosis was correct. I July 2015 I ended up in ICU, 102lbs, intestines were like mush, had surgery for fissures because of the chronic diarrhea, blood transfusions, iron infusions, then on a PIC line for 3 weeks and prednisone. Immune suppressants are not for me!! 4 years ago, on a 2-wk Alaskan cruise, I spent 5 days in the clinic getting IVs of nutrition. Then when getting home I was in the local hospital for 8 more days of IV nutrition, which upon my release, they told me that I had RCD type 2. Since 2015, I've been on a strict GF diet, I'm 98% off dairy, and 95% sugar. My diet basically consists of meat, potatoes and veggies, eggs and fruit. As I sit here writing this, I've struggled lately with dizziness and weakness, diarrhea and fatigue. I feel as though I need some more IV nutrition but am not interested in going to the hospital at this time (not in this world right now, anyway). I've spent 1000's of dollars on vitamins, IV's and vitamin A &D shots, blood work analysis, appointments with the ND, plus medications for hypothyroidism prednisone and Imuran, and Budesonide, shingles - which I got in my face and head last Jan '21, which has turned into PHD Post Herpetic Neuralgia. All not fun! It's been a long journey. I also have alopecia and lost all my hair in 2015 after being so sick. Life is challenging. I don't like to sound negative, but it's frustrating and sad.

Thanks for posting your experience for others like myself with this curse. I haven't had the guts to do this myself. Pardon the pun. I feel like I'm always complaining, always irritatable and just feel like trash all the time. Been diagnosed now for 4 years but unfortunately the diet is too late. I'm refractory now, I was always being accused from the drs of eating gluten and that I should of been healing on the diet. Now I've developed Small Fibre and Autonomic Neuropathy. I was undiagnosed for so long that I now have permanent nerve damage. This isn't just a food allergy, it's torture. Hope you get better and find some peace. Thanks again for sharing your experience.

Refractory Coeliac Type 1 or 2?

After years of feeling well, I had lost of pains in 2020.. It turned out to be H Pylori. However, now I am again in the same situation... My intestine seem to overwork and on a few occasion I had to go to the toilet in the middle of the night, although my stool is perfectly fine. Now I keep having, stomach ache, overworking intestines, nausea... I am terrified!

I appreciate you so much for making this. I’m currently in the process for being diagnosed with refectory celiac and I also have colitis. It’s been over 5 years and I’ve done 3 rounds of steroids and three rounds of immunosuppressants, seen multiple GI drs and had so freaking many colonoscopies and endoscopies and still haven’t hit remission for my celiac or colitis. Honestly it’s the most frustrating thing to feel like you’re doing everything possible to get healthy and nothing works. I feel like no one talks about it or knows what it is so trying to find information and support is so hard. Keep doing what you’re doing. You’re going to help so many people🤍 Thank you again🤍 I hope you start to feel better soon.

I have been diagnosed with Sncd 4 years ago, I went through a lot of pain physical and neurological. I do also have lactose intollerance, wheat, rice, soya, nuts, peas and histamine allergies. I have been diagnosed with IBS too and with a mthfr C667t heterozygous mutation. At the moment I am struggling a lot despite my keto diet which is based on omega 3, food rich of fibers and magnesium.