Celiac Disease is Serious - Real Stories from Real Patients
2023 ж. 5 Сәу.
15 760 Рет қаралды
Beyond Celiac Ambassadors share the burden of celiac disease on their lives.
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It has completely turned my life upside down. I hate it, absolutely HATE it.
Same 😢
I know the feeling.. 😢❤
@@CookieMonster_ My symptoms are inflammation in my body that I can feel as pain, numbness and swelling and can also see through blood work, swelling (again), petechiae from the knees down, most prominently on the tops of my feet, pins & needles, gluten ataxia, migraines, brain fog, extreme fatigue to the point where I will sleep up to 20 hours a day even if I take a prescribed stimulant... Red hot swollen knees (again with the swelling but whatever)... Incontinence bc my muscles are so weak, I can't feel it. A really bad upset stomach. Diarrhea every once in awhile but usually the opposite along with lots of other (not) fun stuff like a drop in several vitamins & minerals that took years to build up after being diagnosed and the need for blood transfusions again if it's bad enough. When I've been glutened, I just tell ppl I feel AWFUL for weeks to months but it's worse than just not feeling well. It also increases our risk of cancer, heart disease and early death significantly so I try my best to avoid it. Also, what most ppl (including celiacs & most doctors) don't understand is that we cannot process gluten at all so even the "allowable" 10-20 ppm builds up. Lymphocytes attack these small amounts of gluten until enough builds up. Then the lymphocytes go haywire & start attacking us instead of or along with the gluten. There are over 250 symptoms of celiac disease that 74% of us still experience while on a strict gluten free diet. Yet when you Google celiac disease, all you'll usually see is damage to intestines and upset stomach... Some people have no symptoms... Also, growing up, I just felt sick at my stomach & threw up all the time but was told I was just car sick. I wanted to eat rice with butter & la choy soy sauce all the time. As I got older, the migraines and bone pain started and all symptoms gradually increased. I was always told I was too young to hurt like I said I was hurting. Severe anxiety was & is still a symptom. I wasn't diagnosed till my thirties after multiple hospital stays and blood transfusions and years of iron infusions... Sorry so long but if anyone reads this who thinks they may have celiac disease, don't compare symptom severity. Find a doctor who will test you. If negative, you may be gluten intolerant. Take care.
@stellaSOreal Hey, I got really lucky when I got diagnosed. I lucked out and was sent to one of the leading researchers for Celiac Disease when I went in for chemotherapy because several doctors told my parents I probably had a brain tumor. I have abnormal symptoms (to put it nicely they make blood incontrobably come out both ends from just cross contamination). I am sorry for your struggles, and know your pain. I was diagnosed at 4 and am 23 now. You can do it, I promise. It's hard, and you will have complications later (take vitamin D now!!!!), and you will try to sympathize with people who are "intolerant" and treat Celiac disease like a choice. You will be poisoned by restaurants that think you are just dieting. Despite all this you can do it. I have been tormented by Celiac disease for most of my life, and I complained about not being able to eat with other children at birthday parties. Screw that the pain isn't worth it, and you really can do it. Good luck, I am cheering you on!!!
@@GaggleingTurkey 😭❤️ THANK YOU SO MUCH!! I really needed to hear this today. Truly cannot thank you enough for taking time out of your day to make me feel better. Sending you love and hugs. Good luck to you too!!! Starting vitamin D today!
This is making me cry seeing there are thousands of people like me that have celiac disease
I HATE THIS!!!!!! As a black woman its extremely rare to have this. Everything has gluten im very sad and its hurtful im tired of looking at every freaking ingredient, and i cant even kiss my kids after they've eaten gluten. I have no one that understands. Its very depressing and sometimes i have to force myself to eat due to lack of appetite, pain and just needing nutrition.....How did this happen????😢 I need help!!!!!
I was born with it. I don't know life without it. I don't think there is help
I have a friend with it. She always seems so happy in public, but I know she has hard times. Hope you are feeing better.
It is not rare in blacks, the place on earth with the most cases of celiac desease is North Africa.
@@mo-ni oh dang
@@itsjustapodcast what that mean (I am not native english speaker- no slang pls)
I have been diagnosed nearly 20 years I hadn’t realised the on going problems I have are coeliac related! I thought being gluten free fixed it all. Thyroid issues. Brain fog. Cramps. Tiredness ( so bad ) Emotional issues. Thanks for posting this. My respect ❤
I've had it for 56 years, I'm really young at heart and am struggling with it more now than ever. I recently went to Hamburg with my children, I couldn't eat easily at all, it got me down so much it was untrue. People don't realise just how restricting it is.
I was diagnosed over 4 years ago, and it's still hard, especially the social stuff. Also accidentally getting glutened sometimes, even though I am super strict and careful about avoiding cross contamination.
I know what your feeling.. Social it's difficult and we have to think about everything we do. Listen to yourself and Stay strong. ❤
I pray it gets better ever 2 bites I took it felt like my ribs were kicked in and I was going to explode!!!!
Praying I get better fast I've had it for a long time they said bc of how much damage it's done to my body but I'm working hard to change everything and do my part!!💯🙏🏼
What’s so upsetting to me is not one professional seems to know anything about it. Go to every source, even the ones who have far out ideas. Find truth on your own. Trust yourself, if feels like it has gluten. Believe your gut! Not the label & not other people.
I was just diagnosed with celiac disease and have a tumor in my small intestines as well I been so horribly sick for so long and was misdiagnosed with so many things,I had my endoscopy friday by monday I got my results,I too feel this way alot of times and its terrible 😢I am praying for all of you facing this disease bc 7ts scary and it is a sad quality of life,I haven't worked in over 10yrs bc of this I'm stage 3 celiac complex disease:*(
Keeping a positive attitude is important but it is something that’s hard to describe to others who don’t have it. The brain fogs and bone aches alone is like having the flu constantly. The stomach issues are also not the same. There’s a much different feeling between stomach aches and celiac pain. Nice to find others and feel less alone with it
Love & respect from a fellow sufferer Here in Ireland ❤
Ireland here also!
This helps a lot because I recently realized I need to get check out for celiac bc consuming it disables me. My family calls me delusional, insane, and they tell me that I shouldn’t believe everything I read on the internet lol.
People don’t take it seriously it all.
Even tho it is crippling.
Why are so many people such jerks?! Why do they act like this?!
Oh I can relate. My family has been horrific to me. For the first year after my diagnosis they chose to NOT believe I even had CD. They didn't know what it was and said I was being ridiculous and I didn't have it. Finally a year later after finding out that a cousin of mine, who's an RN, had 2 children with CD, my immediate family believed me. But in doing so they said, "Well, fine, so you DO have CD..but you're exaggerating your illness." 6 years later they still say this to me and exclude me whenever there's a holiday or special occassion. Case in point...tomorrow my sister and her family are coming over to celebrate my brother's bday. They will do what they always do. They will bring a birthday cake (gluten) and they will order food to be delivered (again....all gluten). I will be expected to sit there and watch them eat while I starve and occassionally run upstairs into my bedroom and devour a bag of chips since I don't feel safe cooking in that kitchen. I'm already feeling anxiety over it.
I don’t have celiac, but I have Sibo. I thought I could count on my family, they also call me delusional. They said it’s all in my head and said some hurtful things. I feel so alone in this.
This is so true. I feel like a burden often, often. I know i shouldn't, but i do. I'm struggling today because of something i ate. Even though I'm super conscious of what i put in my body.
Bro same, at family gatherings I can’t be normal
Diagnosed almost five years ago and, people, you can do this. Sure, there will be accidents, but clean them up and go on with life. So frustrating at times, especially as a single person, engaging in social events that are centered around food.
oh i find social events to be so incredibly difficult as they all center around food.
I always knew something was wrong. For years I would complain to my doctors. After years of feeling like a crazy persons because the doctors kept saying its your age, your weight, I got a doctor that took a look at me and listened. He sent me in for tests. By then I was peeing blood and vomiting a few times a week. My heart was looked at, thought I had heart failure, did a kidney biopsy, found a kidney disease, sent me in for a upper/lower GI, found the celiac. Stopped eating gluten and a few weeks later my kidney numbers started looking better. Turns out it you have celiac you can develop another autoimmune disease. I have a permanent kidney disease now. Took 10 years to get my celiac diagnosis and I was happy I was not crazy, but I wish it would have not been celiac because its been hard.
You will get better and remember that the GF diet is only part of life. Do your best to enjoy every other part as much as you can. Be kind to yourself. I have celiac disease, gastritis and ulcerative colitis and have had a great life so far! I'm 70 this year.
I was diagnosed 6 years ago I can't go out for meals have to explain why I can't eat the same food as others get sick of it don't go out at all now either diarrhea or gut aches to some of the gluten free food tastes terrible better with an empty stomach hate the brain fog
Sorry y’all Just happy to finally have a diagnosis but I never let it stop me. Nothing will stop me:) My mind is my own.
I was diagnosed with celiac disease after having my first daughter and it's truly been a struggle. I also have diverticulitis and non diabetic hypoglycemia. Celiac also will cause depression from just being in physical pain all the time as well.
You sound exactly like me! Reading your story is so comforting for me, yet so painful, because I’m just so sorry you have to live life like I have to. 😞
just diagnosed this morning, im 28 and have had issues for my whole life. luckily, because i have endometriosis, i went gluten free years ago.
Diagnosed 2 years ago. On Christmas vacation now for 3 weeks and recovering from being glutened 2 of those 3 weeks. Haven't willingly touched gluten since diagnosis but battle constantly with cross-contamination. Pisses me off no end.
I felt emotional watching this, I struggle everyday and its getting harder as I get older, thank you to all you guys for sharing, from Australia..............................
Do you get help there with the cost? That is the hardest part for me. I eat the same thing every day. It's not unhealthy but when you have to start removing other things like salt and sugar, it gets even harder.
My daughter has been diagnosed with ceoliac, and I suspect I have it too, there has been a massive amount of misinformation and accusations and also complete dismissal of her symptoms by paediatricians, psychiatrists, nurse's, diaticians and social workers so we've had to navigate false accusations and research on our own. I've learnt that there is a lot of overlap in auto immune conditions and some can be triggered by going off gluten (although the temporary removal of some triggering foods and permanent removal of others has helped immensely). Corn and maize byproducts can cause a coeliac response as well as some types of quinoa, also temporary exclusion of dairy has brought down ttd results for some before a refractory diagnosis was made, fibromyalgia etc and people with cystic fibrosis and carriers of this can have symptoms of cf present, coeliac and cf occur more frequently with each other. We have found alot of cross contamination in foods that you wouldn't expect, for example frozen broccoli - making food choices more difficult, and also found similarities between Crohn's disease and coeliac and also b1 and B12 deficiency. We have started with b1 and B12 supplements as the tests we've found to be inaccurate while we have still symptoms of beriberi so hopefully my daughter recovers from stomach pain etc with this supplement and oregano for small intestine bad bacterial overgrowth. I would highly recommend organic unfortified nutritional yeast as coeliacs can be deficient in bvits so we've found and also trauma events turn off the gastric system (hydrochloric acid etc) which impacts b1 absorbtion- when you need b1 to produce stomach acid so your caught in the cycle, and this can cause a alot of very negative symptoms including brain fog and gastro pain among a alot of others. Hope this can help 😊
Thanks alot it definitely helped me ❤❤❤❤❤❤
Can I ask how much and when to take these supplements? Also where is the best source to get everything. I went to my local health store and only found B12 tablets and oreganol. Also which brands do you prefer.
This is me. I am them. I am crying because I feel I am at my end if I don't get help. Just started a gluten free diet 7 days ago.
You can do it, you will get through it and eventually things will get better. I feel you, I was diagnosed 2 and a half months ago
I catched celiac disease at age 12. My primary symptom was abdomen pain. My doctor said, say no to wheat items, that means i had to stop eating gluten items immediately. It was a big sacrifise for me because i am from India, here wheat is a primary food resource that is being used in every house. But slowly i get use to gluten free diet. I wasn't feeling happy because I didn't liked the taste of food at all. But eventually it was demand of time so i had to keep myself gluten free. However when i turned 20, i had stomach pain of some sort, and i started eating gluten diet, like eating wheat bread and biscuits and i thought it could be the reason. So i went to my doctor and he prescribed me a TTG antibody test, which is a blood test and can give you results if you have celiac or not. I immediately went to the diagnostic centre, gave blood and after sometime took the report and headed back to my doctor. He said, your report is completely fine and it's negative. So then i asked him, can i start eating gluten diet again. He said yes. Since then i have done this test 2-3 times, because whenever i am sick, my doctor always ask me about my medical history for better understanding and i always mention of having celiac disease at a time that's why. And everytime i got my TTG anyubody test NEGATIVE. Right now i am 25 yrs old. However i miss those days when i stopped eating all these junk foods because of having celiac back in time, actually i lost a significant amount of weight because of not eating gluten items. But sadly i get back weight i lose back because i started eating all this again. So, if someone has celiac disease, don't lose hope. Because it can give you a new and lifestyle which helps you a lot in long run. However i still don't know yet that how my celiac disease cured. Because i think my doctor doesn't know too. So this was my story with celiac disease.
Really good positive attitude
I have been diagnosed with celiac disease following gastroscopy and biopsy but my blood tests always come up negative for celiac disease. I was told there can be false negatives from the blood tests but the biopsy does not lie.
What was in your biopsy , could you tell please
@@Amandeep-hq5lv Are you asking me or the main commenter?
@@Amandeep-hq5lv Presuming you are asking me. The "gold-standard" test for celiac disease is a gastroscopy biopsy taken from just below the stomach in the upper intestinal area. It allows a microscopic examination of the ' VILLI ' for damage. Please look up VILLI as it will explain celiac disease better than anything I have ever read. Good luck! PS: I had my latest gastroscopy just last week which showed my VILLI totally repaired! I have followed a strict GF diet for 20 years now. I am 70 and fit and enjoying life!
I’ve been gluten intolerance for 6 years. Now my GP suspects I’m Celiac. But the gastroenterologist say why do a test for Celiac when you are already gluten intolerance? These specialists thinks they are too smart ! Wait till they experience what we are going through
I had a negative biopsy 11 years ago. Nobody told me not to go off gluten two months prior to the test ,but they assure me it was not enough time to heal if I had it. They found gastroduodenitis and hemorroids though. It's incredibly hard to deal with people thinking iIm just making a dietary choice, a dumb one at that. I went off gluten three times now for years at a time. Slowly but surely symptoms improve even if some take up to an year The other times I stopped because of pressure and flat out mockery of my surroundings, but after a while it gets really bad. TMI greasy watery poop with undisgested food. I'm at a point a single cookie will cause my symptoms to come back. I can''t live with constant liquid diarrhea, undigested food, joint pain, skin rash on glutes and back, braing fog and neuropathy, fatigue. For me the worst is joint pain and peripheral neuropathy. They offered me to retest me if I go back on gluten for 6 months one doctor, three months the other the last time. But they wouldn't retest me when I said I was eating it again. My quality of life would be so bad that I can't do that. That test is very damaging to us who have really bad symptoms, because it puts us together with the people who say they have an intolerance, but they say at every group gathering it's ok for them to have some. Oh just have a slice, she/he is having one and is intolerant tooI guess my intolerane is "complete" unlike "hers"... I know things with wheat taste better, people, it just makes me very sick every time official diagnose or not. lol
I was diagnosed with celiac over twenty years ago. Avoiding eating gluten is not enough. If that’s all you’re doing, then whatever else you’re eating, aside from meat, is what is keeping you sick. I have found this out the hard way. You have to give up on all grains as well. All plants. This means all carbohydrates. I now eat only meat. I drink only water. I season food only with good salt. Have to supplement with enzymes, HCL, watch my iron and electrolytes. Only have to eat twice a day. Fatty red meat is best. See Dr Berry on KZhead. Loads of good info. Finally feeling good again. More freedom. But as always, don’t eat anything you haven’t fixed yourself and only go carnivore. I can guarantee you will feel better. If you get informed and make this choice, transition into it gradually to give your gut time to switch gears and return happily to a proper human diet.
For meat (for some of us) it's also part of the problem. Because of my CKD and heart damage I can't eat meat, especially red meat, I also can't eat anything with high levels of potassium. Everyone has different comorbidities from coeliac.
same! i have celiac disease and now i have CKD too :( i have to be careful with eating too much meat. @@freudianslippers6567
I understand giving up grains. That totally makes sense! But why are you giving up plants? You don't eat any vegetables?
@@freudianslippers6567 I have CKD too and a heart condition. Both have improved under the carnivore diet.
Interesting, I'm sure I'm allergic to something else
It's like living in a hell before death.
For all of you out there still suffering, remember that 30 plus % of celiacs have SIBO. I have had SIBO for almost 5 years, it didn't start to present with noticeable symptoms until my celiac disease got so bad that I had gained a crazy amount of weight. 5 years later and I can eat dairy and grains without any issues, but I still have issues with fodmaps. And SIBO is a chronic condition as well so not much good news there, but atleast you can know what you are fighting.
Am so sorry about that so sad
Well i have ehlers-danlos-syndrome, mast-cell-activation-syndrome, postural-orthostatic-tachycardia-sydrome, and finally figured out i have celiac disease, so i have always lived with a abnormal life, but at least now i have answers, and is a huge relief, but its something that i have to keep a watch out for and suffer, its rough, its sometimes a huge cloud over my head, and adds to the list of health issues, it sometime gets me feeling that i just wish my time was up, becsuse the pain, can be so overwhelming.
You only have to be right 100 percent of the time. I wouldn't wish this on anybody.
I was born with celiac disease.. But four years ago I was always sick.. Fainting... Everything.. Since then.. i'm eating gluten free and I feel so much better. It's a daily struggle but you also get used to it.. 😅
Please take care of your bones!! ❤
I was diagnosed so I have a name for it. But I still can't eat without having huge pain. My diet consists of a shake and then lots of pain the rest of the day. I feel like it's killing me. The doctors all think am crazy. And my family doesn't believe me. My husband has been wonderful and so supportive. But I still need answers
All grains have gluten. & it’s sticky. It’s on everything
Sounds like your intestines need to heal. I found oregano, cabbage and brocccoli very good for healing, and substitute gluten processed foods v. bad for healing.
start carnivor diet reserch on youtube
My son was born with it and I developed it your are years behind it there in the USA my son was born in 1982 and I go my diagnosis in 2017 you learn to live with it, it's as simple as that.
Maybe I don't have it so badly but I just exclude gravy, soy sauce pasta breads and cakes etc that have gluten. I don't worry about minor contamination. I have cheese cake and just don't eat the base. Popped a Nexium last night and gobbled some pizza. I don't do that often to be fair. The diet calmed my dietary system and I am slowly losing a bit of weight thankfully. I take a few vitamins, avoid gluten and when I indulge I protect myself with the antiacid. Am I missing something?
I only want to know why no professional has ever told me about ALL the gluten? All grains have gluten & they all make me sick include rice!!! My brothers dead & my last scope included a biopsy. 11 years!! No wheat barley or rye.
I have super brain fog, lethargic, nausea, use to vomit, pale or orange stool, oancreas levels were extreme one epidsode of severe symptoms and then other time was liver levels, diarrhea, a few headacges but not many, and just diagnosed with EOE. Is this celiac does ppl think?
Yes rice has been hurting my tummy a long time. Corn!!! Corn syrup, it all causes reactions. 😢
Same here! Eggs get me too!!
@@lavonnehensley9993 my condolences
@@leannhorne8459 My Doctor told me if I put food in my mouth and it tastes good, "Spit it out fast" lol!. I eat in a day what my family members consider one meal.
@@lavonnehensley9993 If it’s delicious, It’s going to kill me. You have a wise Dr.
Im accepted i will die now i am happy in what i have achieved
Take a plan of action re. Improving your gut. I view it as an opportunity to make and taste new foods. Eat whole foods and not processed a nd packaged stuff. Research high anti oxidant foods which will help improve the condition. It may require more than avoiding gluten. Start with adding b vitamin supplements to raise the mood. While it isn't easy, it is way easier now than it was 18 years ago when it was seen as rare. People here have really bad attitudes. Your health can turn around, but it would require researching your particular issues and seeing a naturopathic doctor.
I don't have hope. Not even a little bit
Always Hope on GOD.
@@user-zi2sr3yp3t oh yea im going to heaven..
I HATE IT. ITS RUINED MY LIFE
I live in Hungary and my little brother was diagnosed with celiacs 4 years ago. He was only 4 years old so after the blood test the doctors said they don’t need a biopsy to confirm the diagnosis. His IgA level is way less now but it is still not low enough. Is it possible he was misdiagnosed? And if yes what could it be? He never eats gluten, not even the tiniest amount.
It’s in everything. All grains have gluten. Poor kid
I've had ceoliac fir 56 years, yes it's been a struggle at times, but it's doable!I I have always been told you need a biopsy to test it? My life has been very normal ,al though yes having meals out isnt great and it's really annoying when you can't just eat what other do. You can eat well if he learns to cook well when he's older .
Corn, corn syrup, even rice. All are gluten. Milk can also cause reactions. The list is endless.
You have to be very careful with cross contamination. Gluten can be found even in some medicines and candy.
Also, be aware of postage stamps, straws (you guessed it, held together with gluten), black pepper as well as the ubiquitous cross-contamination from packagine, @@davpp239
Well this is depressing
It is.....
It is sad but not as sad as the pain & every other symptom including death. I called the fda asked about the gluten labels. They are all voluntary, the manufacturer puts them on if they feel like it. No regulation. No detective device for checking our very dangerous food. I feel sad not for me but for everyone who’s poisoned themselves daily.
Earth balance!! It doesn’t label the corn but the website does. They use some for its color!! Just enough to make me sick!! Now I have no butter in my life. IT IS OKAY & will eat alone not even with other celiacs. But life is worth living & I will live life pain free!!
It's more depressing for them, I think.
My Mom life has been hurt because of Celiac and it being over looked all of her life, countless Medications that did more harm than good. Sadly the only way I found out is, I most likely have it, Tested positive for the gene and have key symptoms, all of my life.
😭
Its not this emotional for me. Am I even Celiac?? Stopped eating gluten on my own before getting tested not I'm too afraid of the symptoms to go back.
Usually “cross contamination” isn’t the issue. Rather it’s using the elimination of foods that I posted. At home just rinse off utensils. Usually Restaurants are quite accommodating these days 😘
Gluten is very sticky. "just rinsing off utensils" is not enough. You do you, but don't give bad advice to other people.
It feels like being a recovering alcoholic bartender.
Ops text err ‘do not ‘consume’ is correct-🙃
Just fou8nd out a month ago
To those wondering how it feels like. It doesn't hurt, it just makes me wanna rip my gut out and die, than to bear with it for another day. If it takes to abstain from corn, so be it. Oats, fuck oats, even though I love the taste of it. Buckwheat, millet, quinoa, anything that I grew up on eating isn't worth it. There is no delicacy in the world, worth making me feel like a piece of shit for a few days or weeks.
Si necesitamos la cura en el nombre de Jesucristo es muy difícil,doloroso 7/24 oh Dios ayydanos ten misericordia y danos fortaleza para pasar este trago amargo .nueva paciente diagnosticada con esta infame enfermedad en menos de dos meses perdí 20 libras ,no estamos solos aún en el dolor ,la depresión ,insomnio y lucha Dios todopoderoso nos va ha sacar adelante,si lo crees ; di Amén 🙏