My diagnosis showed up differently. I took myself to the ER with stomach pain. I was diagnosed with pancreatitis so they had to find out why my stomach was inflamed. I didn't have loose stool, I had a hard time going. I had brain fog for years but thought I had ADD. Had low iron since high school. My stomach would move around all the time so I thought it was gas, indigestion, or my ulcer. I've had ulcers also and just now found out that's a sign as well. Celiac shows up in many different ways because I did have most of the things they were saying. This is a crazy disease, please get tested
Glad celebrities are talking about this. I had skin rashes, hair loss, chronic congestion, gluten cough, aggravated asthma attacks, bowel problems, swollen joints, arthritis and brain fog. But trying to talk to family that tell me it was in my head is so frustrating. I thanked God when I was diagnosed with Celiac’s disease. Yet family still offer me everything loaded with gluten. 😖
@@tracypolselli1464 I went to a dinner after a friend’s wife funeral to other day just to be there for him. A whole house of people eating and all I can have is a Diet Coke. I was expecting it after 10 years with Celiac Disease. It does not bother me. At least, I got a chance to educate a few people about the “joys” of living without gluten.
This really hit me I’ve got celiac disease and I’ve nearly lost most of my teeth and most of my hair had fallen out, it’s hard but the celiac community is strong and we stick together x
@@MommaCore Omg thanks for answering. Can you tell me how did you get your hair back? I went on your channel and your hair seems healthy. I've eaten some cross contaminated gluten and I wonder if that is why I still can't digest properly and I'm losing my hair :(
jdk no hair dying, argon oil leave on over night, coconut water does wonders spray on after you wash your hair, try not to put to much heat on your head, like curling or straightening your hair, it took about 6 months to get back to normal. But it work. Just keep it up, I hope this helps I’m on @thecore _family if you need to chat more x
I've also lost most of my hair and all my teeth except the lower front teeth - and they are cracked. I was extremely sick most of the time before I went on a glutenfree diet. Constant pain and terrible digestive issues, hormone imbalances, resulting from this never went through puberty and never had a period. I've had absolutely no help from doctors, they all just fobbed me off with "you are just getting old" (apparently I've been "just getting old" since I was 12!!!), "this is just normal for you", "you are just anorexic" and "you are just imagining everything". Dentists have always accused me of just not brushing properly, which led to me brushing twice or three times a day for at least half an hour to one hour and later having to find out I had brushed the enamel away! Doctors accused me of being too stupid to understand how to eat a healthy diet, and some misdiagnosed me as having IBS which resulted in problems at work and later contributed to me loosing my job because the employer used this - wrong - diagnosis to fire me and falsely accuse me of being "unstable" when he wanted to get rid of me. Doctors deny to this day that I got Celiac because a test for it came back borderline - because at the time of the test I had already been on a glutenfree diet for several years, meaning it would of course show a false negative! Dietitians have threatened to fatten me up with a mixture of wheat and oil. I'm also constantly struggling with all the other issues so typical for Celiacs, like anemia (both iron deficiency and folate deficiency), and several other auto-immune conditions. But according to doctors I'm apparently "just imagining everything"!
I am a 58 year old male and for 56 of those years I have suffered with bloating, explosive bowel movements and embarrassing gas. The medical community in the US is finally coming around to understand and test for this disease. For years I was told to take Nexium, or to reduce the amount of Dr Pepper I was drinking, or the classic “you just have IBS” I cannot stress enough how important it is to become your own ambassador and fight for yourself to be tested! If you are tired, bloated, have pimples past puberty, or rashes please demand to have the biopsy. Thank you for writing your book as I’m hopeful it will reach more suffering people out there
I was told I was crazy for years, hospital visits non stop, gallbladder removed, finally the VA did a blood test and there it was. I couldn't stay in the Army sadly but I'm so thankful they figured it out.
I was very similar. I was only younger then 14 when I would be constantly complaining to my doctor and he just told me I was a hypercondriac!! Until later when a different doctor diagnosed me with celiac disease!
***** Yes. So many doctors acted like I was a hypochondriac too! Now on the rare occasion I go to a doctor for the flu or something most still don't know what Celiac's is and it's impossible to find gluten free meds without calling the companies to check for yourself. Someday the doctors will catch up.
I have had CD for 3 years now and I feel ur both of your pain, I found out at age 27 and now i'm 30 But knew there was something wrong a cpl years before I was fully diagnosed, You to have been be ur own doctor to an extent and do all ur own research and always watch for cross contamination with your living conditions, I'm really sorry to hear you were not allowed to stay with the Army, I hope there is a cure for this disease some day.
I have Celiac Disease going through the same pain as myself. It is hard to live with but listening to so many people with the same disease it symptoms made me realize I am not alone. I can relate to so many of these people. Thank you
Yes it’s tempting at times, and then you think of the pain and discomfort, not to mention serious health issues down the track. I’m very sensitive to anything non GF, it’s just not for me. Although many food manufacturers don’t make it easy for us. Small shiny hard to read labels, if they’d just put a large GF on the label, but then they’re not stupid, as many non celiacs wouldn’t want GF. 🤷🏼♀️
I am 12 and got diagnosed with celiac disease when I was 3. When people talk about it like this it makes me happy.Unless you know what growing up with it feels like you will never understand.
I was diagnosed at 24 because my parents didn’t advocate or care to understand what was wrong. My dad was concerned about my health but expected my mother to solve it. My mom always just said I’m fine. I suffered health ailments and practically starved myself for years because I felt so sick anytime I ate. If I hadn’t ate so minimally, I probably would’ve had more severe symptoms as these women described. I’m the healthiest I’ve been since diagnosis some years ago. It’s hard socially, mentally, and physically, but far better to know. I cried happy when the doctor confirmed I have celiac disease lol
I'm a Celiac and for years my doctor told me that I was being silly and that I was a hypercondriac. I was only in primary school but I knew something wasn't right...after he called me that I didn't want to visit the doctor again until I was forced to by my parents when I got extremely ill around the age of 14. He just told me I was iron deficient and told my parents I was probably anorexic because I was underweight 🙄 I just got sicker and sicker and ended up visiting my doctor multiple times a month wondering what was wrong covered in really bad rashes, fatigue, extremely underweight and so much more. Only when one day my doctor wasn't available so I had to go to a different doctor who straight away asks my mum if anyone in my close family have celiac (my dads sisters son has it ) and so she had me tested the next morning for celiac disease. I couldn't believe How many repetitive doctors appointments it took but eventually it was solved
Well done for keep going. My symptoms are similar to these plus even younger evident of this happening for myself but the same comments of your lazy, being silly ringing out until I forced to get further tests to get t out of them. But ye growing weak by the day and no victims low in iron and everything pretty much. Good you are getting there and been finally diagnosed!
I asked several doctors about testing and when I said I didnt have digestive symptoms, they dismissed it completely. Even though I was covered in chronic skin rashes, turns out it was Dermatitus Herpetiformis. It was more than 50 years of suffering before I did a food elimination diet of my own accord in desperation, only to discover it was gluten all along. But the damage was done, and whilst my DH improved, it is still a daily struggle. My mistake was putting too much faith in doctors and specialists. They dont know anything. And sadly, we didnt have google or U-Tube when I was young.
Wow, I know exactly what she’s been through! I feel EVERYTHING SHE IS SAYING! I literally cried the other day of relief FINALLY knowing what has been going on my WHOLE LIFE! I had a doctor last Friday tell me to go on a gluten free diet because of the severity my symptoms have reached just to see if that is the problem.. since then I’ve done so much research trying to figure things out for myself and come across celiac disease then everything that followed... it was like being alive for the first time knowing what I know now. I’ve had fertility problems and other similar problems SINCE I WAS A CHILD!! I am now 28 years old and felt extremely ill so I went to the ER and got no answers, then was recommended by my aunt to see my new doctor now who may have just completely changed my life FOREVER!!! Thank you for your interview ladies, I find it extremely informative and helpful!!
I knew something was wrong with my body too and finally found a GI doctor who believed me. I did have a blood test which was positive - but the endoscopy was inconclusive! I was so upset, thinking maybe I am crazy. Then my doctor ordered a genetic test and it came out positive. This is why it is so important to advocate for yourself.
@@careerscoop5241 yes you should talk to your doctor before eliminating it because the diagnosis may not be clear if you stop eating gluten now. But if you don't feel you need to get a diagnosis then eliminate gluten and see how you feel. Breakfast is always the hardest meal for me but typically eggs, fruit, and sometimes bacon or sausage. Or oats are a good choice (they must be certified gluten free!)
7 years old this video and I’m only being tested now. I’m 56 and have fought a years full on battle to be listened too. I am being test now but I’ve had it with being told I am mentally unwell. No I am not. I’ve been invalidated all my life and will not allow that again. Thank you for this.
I completely relate. You know your body best. A lot of doctors are ignorant and their egos are huge. It’s so hard to deal with medical “professionals” who tell you what they think is the problem when you know your body and what you’ve gone through
I’ve had digestive problems for many years but couldn’t get answers, my mother had the same but just lived with it. It came to a point where I was taken into hospital and told I had a month to live, it was finally diagnosed. Thank you for exposing this disease
ALOHA Nicki, We all seem to be in this club of Celiac Disease! I agree, it's VERY annoying! So tell me, do you every once in a while say, "ah forget it" and eat something you know you shouldn't and then pay for it later? You think dis old Aunty would know better! lol. Take care, hang in there and don't forget to share you aloha spirit with another. GOD BLESS, - AuntyKeli ;-)
Nicki Collis omg same it ruined my life because I accidentally ate gluten and then at my birthday party the symptoms kicked in and I barfed in front of all of my friends, a couple ran outside screaming like I was some monster and like I’m still embarrassed
@@auntykeli theres no way I would forget it and eat gluten. However, definitely at times when I will eat something that is gluten free and not be concerned about the contamination. BUT I pay the price later and I'm done! I'd rather starve than eat more pain
Aunty Keli I ate 4 pieces of chocolate 4 days ago and I didn’t know that it was gluten in it and I have had stomach pain for four days now nonstop. I would never eat it if I knew it was gluten in it. I couldn’t go to school one day because it hurt so much.
I got tested for Celiac and the doctor did NOT tell me I had to have gluten for the test to be accurate. Obviously it was negative. They just told me I had IBS and prescribed meds to help with IBS and none of them were working. Until a week ago, I was in bed for hours, in pain, screaming in tears because the cramps were so unbearable. Still convinced I don't have IBS, I started a gluten free diet and for the first time for months, I have been able to spend a day outside of bed. I am now going to push for tests and to have correct answers because I don't want to live with question marks about my condition.
@@careerscoop5241 Oats in themselves do not have gluten but sometimes they will be recognized as a problematic substance by a person's body and react similarly to gluten. Until you are sure you are okay with gluten, stay off it.
It took me over 2yrs of insisting, changing all my doctors n was eventually taken serious. By the time I was diagnosed with celiac disease I was already diagnosed with lumber scoliosis, osteopenia, ovarian failure/menopause. My body just started falling apart, they took out a 15mm polyp from my colon when my GI did the colonoscopy and endoscopy. Celiac disease is not just about living a GF diet it has more to it. For example, shampoo, conditioner, toothpaste, detergent, soap, make up, etc. I'm so over it. Wish it could have been caught sooner. God bless everyone living with this disease. 🙏
I'm so glad to see this. I was recently told I am celiac and it's just been a nightmare. It means so much to hear someone else honestly speak on how difficult this is and be transparent. I am so sick right now, like I've been sick my whole life but right now I am sooo sick. The way she describes it is how I feel right now. Like the way she was sick at work, this is me. I tried to hide being sick for so long until I just got so sick it was literally impossible. I'm basically disabled and can't function. The panic attacks that started half a year ago has been a nice touch to this hell hole. Guys, you need to know that what shes saying about getting a negative before getting a positive happens so don't immediately think you don't have it. I got a negative twice before getting diagnosed. If I hadn't ignored it after the first test as I did years ago I wouldn't have my life in the hell right now. Don't make the same mistake if you suspect you might have it.
I hope this all worked out for you. I recently went off gluten myself, and was surprised at the actual withdrawal I felt from that process: nausea, sweats, stomach pain, fatigue. Incredible, really. And then the gut takes time to heal.
Celiac manifests in ways no one, even doctors, know. Mine didn't rear its ugly head until I went through severe trauma. I kept telling my doctor something was wrong as I felt terrible and kept losing weight, but I didn't have any other "typical" symptoms - until I died in the ER because my heart had no potassium. They brought me back but I ended up with a pacemaker. It took me a year to put on enough weight to get out of danger. One big symptom I had was very severe dizziness.
Having itchy skin is very unpleasant, I get it mostly at night in the scalp and even in my eye brows itch 🤷🏼♀️ plus my hair is very dry. I wasn’t aware it was celiac related. I’m glad you don’t have bowel problems Lisa, that’s a plus. I feel for everyone who has celiac disease, especially babies and kids, 😒
Excellent video. Similar story for me in terms of manifesting in panic attacks and bad health generally. Fobbed off by so many doctors and had rafts of tests for symptoms with no one checking for ceoliac. Still battling the impact 10 years after realising it was gluten. Kudos to this lady for explaining so clearly, factually and expressing the failings by medical profession.
What happened to Jennifer Esposito happened to me. I didn't know or didn't even think that the underlying IBS, malabsorption, mood swings, jaundice, anemia where associated with me having Celiac Disease. All I can say it's horrible when not diagnosed because you just keep having all these issues and try to be as healthy as possible and still keep having them and going to the doctor and feeling horrible all the time. I just got diagnosed recently after a celiac test was done. The flares are still there but I am starting the be treated appropriately now. I just hope I can finally feel better and taking it, one day at a time. The Celiac Diet sucks but I rather stop having so much horrible stomache issues, fatigue, edema, anemia, nutricional defiencies, IBS, bloating, horrible mood swings than eat the really good tasting food. I am currently feeling down because it's a complete 360 you have to do on your diet but I am on the way to healing. All I can say is that yes this can go undiagnosed for a long time, symptoms are everything Jennifer has said and more and can affect your day to day life. I really recommend people who start having a lot of IBS to get tested for Celiac and especially undescribable bloating, pains, mood swings even when exercising daily and eating extremely healthy, just get tested. Sending good vibes to everyone going through similar life wrecking symptoms
Love ur work Jennifer E. thank u for helping educate us more. As someone w/Crohn's disease, finally diagnosed in late teens, I dealt with the same things being stereotyped b/c it was mid 80's & I'm a gay man. They kept assuming I was lying about not having any sex at all (which was 100% the truth!), let alone lots of casual sex & tested me countless times 4 it, by several docs, ER's, hospitals. I only got sicker thinner and without any health insurance more broke by the week. The medical profession totally failed me and I gave up trying to get help. Until I weighed barely 100 pounds @ 5'9" (about 55-60 pounds underweight) and was so sick that my bosses had to talk me into trying to get medical help again because I was going to die. Thank God I finally found a dr who actually listened to me and heard everything I'd been through, test results so far, symptoms etc. and before he even examined me he said I think you either have Crohn's disease ulcerative colitis or parasites (not having been out of the country took that possibility out of the equation). One of the craziest, funniest things about the time I went from hospital, Dr. and ER without insurance to try to get help because I knew I was seriously ill, is that not one of the "medical professionals" ever said to me there might be something wrong with your G.I. tract, not one single doctor even got close to what became the very obvious truth!? Come to find out after I finally was properly diagnosed my symptoms were very hallmark/typical of Crohn's disease... it's really sad the suffering that so many of us go through when we like you Jennifer, are trying desperately to get help, not ignoring the problem but we run into ignorance stereotypes being belittled not being taken seriously and all we do is get sicker. I wish you nothing but health and happiness for the rest of your life. Thank you for sharing your story it will help so many people! Best of luck in your profession and I really love you on NCIS!!
I was just diagnosed a week ago with full blown celiac. I was scoped 8 years ago and was told negative but even the doctor that recent scoped me thinks the pathologist was wrong. My symptoms were diarrhea, unexplained vitamin deficiencies and migraines.
One thing the doctor got wrong was that you don't have this condition from birth. You can develop it anytime in life if you have one of the two genes associated with it. If you have the gene but you test negative for celiac you're advised to get tested every 3 years, or earlier if you experience some symptoms associated with celiac disease. There are 300 symptoms that have been linked to this disease and it's one of the most commonly misdiagnosed.
Celiac is hereditary, but can become problematic at different ages for different people. When one begins eating WHEAT, how much, and how dramatic the effects on one's body, give different conditions.
@JonnyC 289 take out the gmo's, sugar, and processed cooked fats then tell me how things work? Part of the equation why millenials are not thriving reproductive wise, I do think.
I have had it since birth but they diagnosed me with it when I was 5, I always had the symptoms and when I was 5 nearly died cause of it so they did the test and I was diagnosed. I guess it varies with everyone.
You are absolutely born with it. Your genes don't change as you get older. If you have "one of the two genes associated with it" it's because you were born with them. Then at some point in your life, that gene can be triggered and 'switched on' (due to stress, illness, etc.), and then the symptoms start -- unless you happen to be asympomatic.
For Those Of Us Who Have Celiac Disease & Gluten Intolerance, I Stand With You In The Fight For A Gluten Free Society. 💯 Because I Have Celiac Disease Too & I've Had It For 14 Years. 💯
Omg this is my story. I’ve just gone gluten free, and sugar free to try and find a dietary reason for all these unrelated issues I began to Improve immediately.
@@careerscoop5241 I stopped the gluten and dairy. I'm not going to lie. It was hard. But feel 100% better now. I had already started cutting back but once completely off. I started to improve. I'm going to add a link from the doctor I follow on youtube. He's awesome.
From Australia : 1 in 70 people have Coeliac disease, most undiagnosed. I am a Coeliac dentist and often suggest that patients be tested - sometimes with positive results. Very satisfying. The diagnosis is life changing.
It took me more than 10 years to finish uni because of an undiagnosed coeliac disease. I had panic attacks and felt sick and nauseous all the time and thus missed a lot of classes over a long period of time. I lost part of my front tooth and my doctor wasn't really interested in finding out what was going on. Not until I went to another doctor who told me at my very first appointment that I could have coeliac disease was I finally diagnosed. People who see my CV always ask me why it took me so long to get a degree and secretly think that I was a lazy student who just didn't want to get a job.
Wow! I have been experiencing really bad stomach cramps after eating gluten for a few months.. and couldn't put my finger on it. Now listening to Jennifer I have experienced almost all of the symptoms she has had. Skin dryness, anxiety and panic attacks as well as Bowel problems. Better get tested.
December 23rd was ten years since my Celiac Disease diagnosis. I was diagnosed by lab work done by my primary care doctor. I am so grateful to her for putting the pieces of that puzzle together. I still have to educate new residents and fellows who come in to care for me on other parts of my medical team. Due to Celiac I have chronic iron deficiency anemia.I will be on iron for the rest of my life since I have times where my lab work for my iron comes back a little bit low.My primary care doctor is doing her best to care for me and my Celiac disease. Even though I am gluten free it's still attacking my joints. I'm on all the supplements that we think I need for right now. I will see my new GI doctor in January which I'm nervous about since I have to go through the whole Celiac Disease diagnosis again with a new person.
I’m 44 and jus found out I had this but I’m glad I was checked out because the pain in my stomach was not ok at all and the tiredness I was getting months before it was concerning.so I feel better after going gluten free.
I've learned a doctor discovered Celiac during WWII, so the medical establishment has known about this awful disease for roughly 75 yrs, but seem not able to diagnose people. The system is protecting profits, especially the Pharma-Industry. If you suspect you may have Celiac, find out what doctor will do whatever it takes to diagnose, most won't do it, as they are encouraged not to.
Every country needs to train the people who work in restaurants, or places where work with food ..and teach that people about this! I went to USA for my vacations and I feel that a very few people know about this. And is very difficult to find a place to go to eat in a safe way. Because the cross contamination is very danger.
@@alexisyates28 permanent dizziness, tinnitus, vertigo, slurred speech, and migraines with aura. It is better going gluten free, but sometimes I get something with it in there and it worsens.
@@christykeener2167Me too. Chronic vertigo for over 30 years. Gone when going GF. I also have ataxia and fall a lot and am unsteady when I get glutened.
She’s so brave and gorgeous. An early diagnosis for celiac disease is so crucial but I was lucky. My body broke down at 12 years old. I always had an upset stomach and I developed eczema almost overnight. My skin was irritated all the time and almost everything thing I ate made me sick. My mother, god bless her found a ear nose and throat specialist who, had studied food allergies. That doctor referred me to a doctor that specialized in food additive responses. This was in 1983. They didn’t even acknowledge celiac disease as such back then. I had to expel anything with yeast(gluten) in it. After a year of avoiding the following-egg whites, nuts, chocolate, tomato products, shellfish, all dairy, and several allergy shots, I was able to enjoy a slice of pizza without issues. The problem today is there is yeast and gluten in so much of US food it’s overwhelming. I am 51 now. I am very careful with yeast, shellfish and packaged food. So many “natural “ foods are treated with yeast or gluten. I am very conscious of what my body can handle. Moderation is key for me.
Years and years of having gi problems I’ve been told IBS I’ve been told IBD damage in my Gi years sence 10 years old . Last week after a test for it From my upper and lower colonoscopy it’s positive Years of health issues mental depression anxiety nerve pain . Skin problems that was just weird . I hope to learn everything I can do to feel better for once in my life . O and my teeth explain why they are not doing good for someone who took good care of them . I was a carb freak addicted to carbs . I hope I can change things around and it’s not to late . Im 54 now suffered years of GI problems. Im glad to find this out for once in my life maybe I will better no brain fog bloated belly diarrhea and IBs meds make it worse. They put me on them the pain be so bad in my stomach. Can’t wait to feel good .
I was also thrilled when I got my diagnosis it was a long struggle with all kind of symptoms and doctors where not really convinced that something was wrong I felt like my body was dying and every now and then I get a new symptom and finally I know Thanks dear for saying exactly what I felt
This is such a good and comprehensive explanation of coeliac disease. I'm so pleased to see appropriate content about being coeliac on RUclips. Thank you!
Celiac decease did not ruined my life but unprofessional doctors actually did it. I was told that I was fine, I was told that everything was inside my head and that I used depression, adhd, memory loss as excuses for my not well behave. I had issue with stomach, arthrosis, muscle pain and so. I then forced my self, went gluten free for 8 days and i literally lost 21kg in 7 days. When I came back to my doctor, he said that my body was just too good. I then went back with gluten for 2 weeks, I had 2 crash and went to the hospital. Finally when i took the gastro and I received the result as positive. Still in pain
I have all those symptoms and im super depressed and have anxiety..and i have siblings that have celiac and I asked to be tested and she told me to go for test in 90 days!! Since then I'm so sick iv lost my job!! And me and my girlfriend are breaking up because I'm so lazy and have no energy and all I do is lay in bed!
my doctor thinks I may have it. I have low Iron, folic acid, B12 and Vitamin D. I didnt realize that Panic Attacks could be part of it. I get those. I also get gastro issues too.
I hope I have it. I've been progressively sicker for 6 years. GI issues, panic attacks, low vitamin D. I have them. I've spent too much money on trying to get better and going to the doctor and getting tests done that I can't do anything else done right now. Fortunately I can go off gluten and see what happens.
I just recently found out my cousin has celiac and she has all the signs of malnutrition because she can't absorb nutrients anymore. The odd thing though is her blood test was negative, the biopsy was positive. I definitely have signs, and I need to keep a closer eye on it now that I know the gene is in the family. When I got my blood test it was negative, and I should be having the biopsy in the next month or so. She did some sort of genetic testing, and apparently the celiac gene in our family shows negative on a blood test but positive biopsy.
I have celiac disease and always remember having pain in my abdomen . My parents even took me to a masseuse who massaged my abdominal area because they thought something was stuck in my guts - explaining why I had a distended abdomen. Kids at school would call me a “Somalian “ the pain from the bloating just became normal for me and it bothered me when friends and family members were not able to relate to my pain - I thought everyone else felt what I felt . I would repeatedly ask my doctor why I was so tired all the time and he couldn’t explain why . I would eat some cookies or some Mexican sweet bread and I could knock out all day long . The fatigue for me was super debilitating , the pain from the bloating , the “crampy “ feeling was also debilitating . As I got older , it got worse . Until one day I ate some wheat bread after I had just eaten some chocolate cake (I had never really eaten wheat bread as I didn’t like it but one this one particular day it’s all we had ) I got the worst diarrhea in my life . It was like food poisoning . Actually , if Uve ever had food poisoning then you kinda experienced what we with celiac disease feel like all the time (before being diagnosed ) I don’t blame the doctors so much for misdiagnosing because some were thinking I had IBS . The reason we can’t blame the doctors is because we don’t always give them enough information to lead them into having us tested for celiac disease . Had I told them that all my symptoms would
I’ve tested negative going on 4 years and I’m getting the run around and I have all the symptoms and I’m only 0.1 from having celiacs. I haven’t been losing weight I’m gaining it I bloat so bad I feel sick or fatigued my hair is falling out rashes joint pain, diarrhea headache vomiting stomach pain anxiety low level vit D3 acid reflex. It’s horrible when your pcp just blows you off so they don’t have to deal with it.
Every Celiac goes through the same shit I was 16 when I first got my symptoms I was told to DRINK WATER and get enough fucking sleep can you believe I was treated like I stump I cant even explain- like a complete idiot totally dismissed until I lost so much weight they had to pay attention. By the time I had my biopsy I had stopped eating gluten for months accepting I probably had celiac disease but also just stopping eating all the things which made me feel like hell which happened to be wheat/gluten based foods. At that time my gut was so damaged I also couldn't eat almost anything as it hurt to digest everything they told me to do a gluten challenge and eat two pieces of bread everyday for 6 weeks and after everything it came back negative. I now know research shows that's almost nowhere near enough time to damage the gut again at least to the extent for a positive diagnosis. I'm self diagnosed now I live in the UK and unfortunately the public healthcare system is EXTREMELY dismissive when it comes to gut irritation unless your gut is hanging out- I know how I feel on gluten and I'm not only human but happy again completely off it.
falloutgirl902 I am so, sorry abouth your actual condition. It is the same symptoms my son had, and I just find out after long time; and the Dr told me OH IS NO REALLY ACTIVE He din't have to change diet "REALLYYYYYYYYYYYY' I WAS FURIOUS and walk out; and we start a glutein free diet. I hope He will field better
I had tests, biopsies and so on all negative for ceoliac. Then February I got a diagnosis of early signs of celiac disease. The doctors prior said that I have IBS or your just stressed or what ever but how celiac can effect your body Is immense! If you have a tiny crumb it sets me off - feel sick,unwell, sweats, cramps and lack of energy. It's big! A lot of people are still not aware. Another thing they need to get better in diagnosis assessment as getting diagnosed early is best! I've most likely had it before I had glandular fever and either when I was a child most likely!
Blue Blood's executives made a huge mistake letting her go from the show. She was one of the best actors on there. The show never was the same after she left.
When I tell the celiac nurses on my updates about my sore tummy. Pains in my joints feeling sick .she tells me it's not my celiac I should go and see a doctor. I know it's my celiac.
In my case, teeth and anemia. I was diagnosed 2 years ago. Anemia and gastro issues, like bloating, diarrhoea, no constipation. However, it is really difficult to pinpoint the disease since not all people experience the same symptoms.
At age 72, after a whole life of pain and suffering, damage to organs, all I hear was "your a tough case", or " it's in your head". Figured it out myself. Stopped all Drs and meds. Went gluten free. Unbelievable! Trigiminal-neuralgia, cluster migraines....gone after two years! Stomach pain and cramps...stopped.Trying to build up bones after 3 spinal fractures. Doctors need to stop giving pills for the symptom and start looking for the cause. Doctors are just legal pill pushers, listening only to big pharma.
I am from the UK and recently diagnosed. I had two cases of GI symptoms in the space of three months (i ate gluten every day). Doc suggested blood test. That was positive. Then i stayed on gluten for 6 weeks until having the endoscopy, which unfortunately confirmed the disease. No more syptoms at all during those 6 weeks. I've never been tired (despite two young kids) or had other indications of CD. Don't know how the doc suspected it. i could have easily gone another 10 years before it was discovered. It does make me consider cheating on the diet though.
Daniel Lally In one way I'm lucky...I can't cheat as I get so Ill the next day if accidently glutened, so cheating is never an option..and if you cheat your only heading for bowel cancer long term..so it's not worth it no matter how much you miss bread ,etc
+TopBloke52 The cancer risk is a hell of a lot lower than most blogger sites would have you believe though. Read some recent studies. Although there is a raised risk, it's no where near as high as many perceive it to be, even if adherence with the diet is poor. And since coeliac has not cost me my chance of immortality, I refuse to live scared. Something else is likely to get me in the end.
+Daniel Lally you could reach a point of intestinal damage that will make you very poorly through being complacent in that manner. . it's not worth it. wheat is a relatively recent addition to the British / western diet in the quantities it's consumed in. it's convenient.. as it's a staple ingredient in many processed foods but not that nutritive and ultimately damaging.
Work is the hardest when you're in charge of managing the place or people, and you're immune system and everything is just crashing. And you're fighting so hard to hold yourself together when you feel like you're falling apart. I cant count how many days and times I've had panic attacks or cried at work in the bathrooms because my hands shake so much or I get these rashes and dizzy spells or horrible HORRIBLE aches and pains in my body! And when I explain why I cant eat that slice of cake they're all having or eat whatever the fuck they're eat and they make fun of me for being gluten free and roll eyes at celiac. Like ugh!! It's the worst. The only people on my side are the other celiacs behind the screens sharing their experiences
I have DH and Celiac disease. Gluten is one type of Lectin. The key here is, stay away from lectins. Stay away from nightshades, legumes, and anything high in lectins. It's a tough diet but it works.
The dust from bags of flour in my workplace were causing hives on my legs. It’s not a fad diet and to this day most restaurants do not take this seriously.
Can low potassium all the time be celiac? I have to always take D2 and B12 and last two ER vists my potassium was low and I’m wondering why? I was given an orange drink once. But no one went further into why it was low and what to do.
There are many possible reasons for low potassium. And many, many possible reasons for what is troubling you. For example, the bacterial strains which are responsible for vitamin production, may be depleted. This would require increased vitamin intake, particularly vitamin B12. Can you provide more information?
The amount of knowledge that GI MDs know about Celiac Disease can fill a thimble. And the vast majority of GI MDs do not give a 💩about you and your Celiac Disease. Make those two statements after beings diagnosed for 10 years and suffering for many years. You must educate yourself.
In 2019, every so often, I had a hard time breathing, chest tightened, broke out in cold sweat, they did an EKG and other tests. Then my dr thought it was acid reflux, so i did a scope test to check that, and thats how they found celiac. I ate a couple pizza and breadstick and had diarrhea. Before that day i never watched what i ate as far as gluten because i didnt know i had it because i had no symptoms. This was the first time i had a sysmptom. But sunce then my hair grows at least an inch and a half every month, but it breaks at the ends so i cant get my hair to get longer. When i first found out, i went through what we had at home that i ate and looking then up to see if they were gluten free. Most things were, except bread, pasta crackers, soyu, oyester sauce, so i changed the soy sauce and oyester sauce and pasta to gluten free and try not to eat things with gluten. I take a bunch of vitamins a day to try and make up for what i may not digest. I do get cramps if i have a certain amount of gluten. My hair grows, but the bottom in the past few years have gotten damaged and breaks. So my hair cant grow longer it seems. I use coconut oil to sit in my hair before i wash it, it makes the ends feels less dry and break less. My nutritionist said to take glutamine for a few months, stop for about a month then start again. She said it helps heal the Vili. My stomach is constantly bloated, i have gained weight instead of losing and i only eat a handful of nuts in the morning so i can take my vitamins with something in my stomach, and dont eat again until dinner. I takeba chinese detox tea a few times a week, but other than that a some excercise i cant lose weight. Ive never had a hard time losing weight and always excercised. It was simple, eat less and excercise and the weight would fall off, now i barely eat mainly only drunk water except for a gatorade at dinner and a cupbof tea in the morning at work, and i cant lose a thing. Im 51 so not aure if its a horminol premenopause thing or a celiac thing. Just so frustrated why i cant lose and why i gained weight instead when im not eating much. But i do feel tired alot even sometimes have to. Blink or dose off while someone talks to me, but as long as im busy i am trieed but can stay awak.
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I just got blood tested .... really hope it's just ibs :( but yeah I'm losing weight so fast I cant gain it and I have sever depression that It gets to the point i think about suicide and cant help it... i had a miscarriage 2 years ago and never knew why or how it happened i have diarrhea almost daily and stomach cramps and bloating etc :( just nervous about the results
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My diagnosis showed up differently. I took myself to the ER with stomach pain. I was diagnosed with pancreatitis so they had to find out why my stomach was inflamed. I didn't have loose stool, I had a hard time going. I had brain fog for years but thought I had ADD. Had low iron since high school. My stomach would move around all the time so I thought it was gas, indigestion, or my ulcer. I've had ulcers also and just now found out that's a sign as well. Celiac shows up in many different ways because I did have most of the things they were saying. This is a crazy disease, please get tested
Glad celebrities are talking about this. I had skin rashes, hair loss, chronic congestion, gluten cough, aggravated asthma attacks, bowel problems, swollen joints, arthritis and brain fog. But trying to talk to family that tell me it was in my head is so frustrating. I thanked God when I was diagnosed with Celiac’s disease. Yet family still offer me everything loaded with gluten. 😖
I do the holidays myself so that I can eat! It’s stunning how many times I’ve been “invited” to dinner or a celebration and just sat there hungry.
Oh my God my hair is falling like crazy
Hey what is gluten cough? I have frequent coughing, lethargy, gagging
Exactly. My mother: “Do you want a Little Debbie’s Snack Cake to eat?” after I had told her 15 times that I could not eat anything with wheat in it.
@@tracypolselli1464 I went to a dinner after a friend’s wife funeral to other day just to be there for him. A whole house of people eating and all I can have is a Diet Coke. I was expecting it after 10 years with Celiac Disease. It does not bother me. At least, I got a chance to educate a few people about the “joys” of living without gluten.
This really hit me I’ve got celiac disease and I’ve nearly lost most of my teeth and most of my hair had fallen out, it’s hard but the celiac community is strong and we stick together x
are you there?
I'm also losing my hair. can we chat
jdk hi there, of course I have my own channel now too x
@@MommaCore Omg thanks for answering.
Can you tell me how did you get your hair back? I went on your channel and your hair seems healthy.
I've eaten some cross contaminated gluten and I wonder if that is why I still can't digest properly and I'm losing my hair :(
jdk no hair dying, argon oil leave on over night, coconut water does wonders spray on after you wash your hair, try not to put to much heat on your head, like curling or straightening your hair, it took about 6 months to get back to normal. But it work. Just keep it up, I hope this helps I’m on @thecore _family if you need to chat more x
I've also lost most of my hair and all my teeth except the lower front teeth - and they are cracked. I was extremely sick most of the time before I went on a glutenfree diet. Constant pain and terrible digestive issues, hormone imbalances, resulting from this never went through puberty and never had a period. I've had absolutely no help from doctors, they all just fobbed me off with "you are just getting old" (apparently I've been "just getting old" since I was 12!!!), "this is just normal for you", "you are just anorexic" and "you are just imagining everything".
Dentists have always accused me of just not brushing properly, which led to me brushing twice or three times a day for at least half an hour to one hour and later having to find out I had brushed the enamel away! Doctors accused me of being too stupid to understand how to eat a healthy diet, and some misdiagnosed me as having IBS which resulted in problems at work and later contributed to me loosing my job because the employer used this - wrong - diagnosis to fire me and falsely accuse me of being "unstable" when he wanted to get rid of me.
Doctors deny to this day that I got Celiac because a test for it came back borderline - because at the time of the test I had already been on a glutenfree diet for several years, meaning it would of course show a false negative! Dietitians have threatened to fatten me up with a mixture of wheat and oil.
I'm also constantly struggling with all the other issues so typical for Celiacs, like anemia (both iron deficiency and folate deficiency), and several other auto-immune conditions.
But according to doctors I'm apparently "just imagining everything"!
I am a 58 year old male and for 56 of those years I have suffered with bloating, explosive bowel movements and embarrassing gas. The medical community in the US is finally coming around to understand and test for this disease.
For years I was told to take Nexium, or to reduce the amount of Dr Pepper I was drinking, or the classic “you just have IBS”
I cannot stress enough how important it is to become your own ambassador and fight for yourself to be tested! If you are tired, bloated, have pimples past puberty, or rashes please demand to have the biopsy.
Thank you for writing your book as I’m hopeful it will reach more suffering people out there
I was told I was crazy for years, hospital visits non stop, gallbladder removed, finally the VA did a blood test and there it was. I couldn't stay in the Army sadly but I'm so thankful they figured it out.
WOW. was it because of you testing positive for celiac that they kicked you out of the army?
I was very similar. I was only younger then 14 when I would be constantly complaining to my doctor and he just told me I was a hypercondriac!! Until later when a different doctor diagnosed me with celiac disease!
***** Yes. So many doctors acted like I was a hypochondriac too! Now on the rare occasion I go to a doctor for the flu or something most still don't know what Celiac's is and it's impossible to find gluten free meds without calling the companies to check for yourself. Someday the doctors will catch up.
I have had CD for 3 years now and I feel ur both of your pain, I found out at age 27 and now i'm 30 But knew there was something wrong a cpl years before I was fully diagnosed, You to have been be ur own doctor to an extent and do all ur own research and always watch for cross contamination with your living conditions, I'm really sorry to hear you were not allowed to stay with the Army, I hope there is a cure for this disease some day.
was ur gallbladder acting up? mine is but I tested for high gluten sensitivity
I have Celiac Disease going through the same pain as myself. It is hard to live with but listening to so many people with the same disease it symptoms made me realize I am not alone. I can relate to so many of these people. Thank you
It's going to be ok. Don't let it get the best of you. Stay strong.
Yes it’s tempting at times, and then you think of the pain and discomfort, not to mention serious health issues down the track. I’m very sensitive to anything non GF, it’s just not for me. Although many food manufacturers don’t make it easy for us. Small shiny hard to read labels, if they’d just put a large GF on the label, but then they’re not stupid, as many non celiacs wouldn’t want GF. 🤷🏼♀️
@@MXRU-pi7xb What, do you think you can muscle your way out of an Autoimmune disease with devastating symptoms? Get over yourself.
@@littlebitofhope1489 cry about it XD
I am 12 and got diagnosed with celiac disease when I was 3. When people talk about it like this it makes me happy.Unless you know what growing up with it feels like you will never understand.
Evie Grace aw im sorry hunny
Honestly wish i was diagnosed that early, i waited till 7, 7 years of pain
Same I was also diagnosed at 3! Its really hard watching everyone eat pizza, bread, etc...
I can't relate more I was diagnosed when I was 5, I am 15 now and people might know it but its really painful sometimes
I was diagnosed at 24 because my parents didn’t advocate or care to understand what was wrong. My dad was concerned about my health but expected my mother to solve it. My mom always just said I’m fine. I suffered health ailments and practically starved myself for years because I felt so sick anytime I ate. If I hadn’t ate so minimally, I probably would’ve had more severe symptoms as these women described. I’m the healthiest I’ve been since diagnosis some years ago. It’s hard socially, mentally, and physically, but far better to know. I cried happy when the doctor confirmed I have celiac disease lol
I'm a Celiac and for years my doctor told me that I was being silly and that I was a hypercondriac. I was only in primary school but I knew something wasn't right...after he called me that I didn't want to visit the doctor again until I was forced to by my parents when I got extremely ill around the age of 14. He just told me I was iron deficient and told my parents I was probably anorexic because I was underweight 🙄 I just got sicker and sicker and ended up visiting my doctor multiple times a month wondering what was wrong covered in really bad rashes, fatigue, extremely underweight and so much more. Only when one day my doctor wasn't available so I had to go to a different doctor who straight away asks my mum if anyone in my close family have celiac (my dads sisters son has it ) and so she had me tested the next morning for celiac disease. I couldn't believe How many repetitive doctors appointments it took but eventually it was solved
Well done for keep going. My symptoms are similar to these plus even younger evident of this happening for myself but the same comments of your lazy, being silly ringing out until I forced to get further tests to get t out of them. But ye growing weak by the day and no victims low in iron and everything pretty much. Good you are getting there and been finally diagnosed!
I asked several doctors about testing and when I said I didnt have digestive symptoms, they dismissed it completely. Even though I was covered in chronic skin rashes, turns out it was Dermatitus Herpetiformis. It was more than 50 years of suffering before I did a food elimination diet of my own accord in desperation, only to discover it was gluten all along. But the damage was done, and whilst my DH improved, it is still a daily struggle. My mistake was putting too much faith in doctors and specialists. They dont know anything. And sadly, we didnt have google or U-Tube when I was young.
I’m gluten intolerance & now my GP thinks I’m Celiac. Low in iron, fatigue, panic attacks, heart palpitations etc…..
Holy crap! I'm sitting in the audience next to the doctor speaking. I didn't realize that I was gonna be on tv for real. Starting at 3:47
Thank you
aww you're beautiful!! hehe
You’ve a jawline for dayzzzz
That’s how cameras work, darling!
You should have ran up to Jennifer and kissed her. Lol that’s what I would have done
Doctors misdiagnose more than people realize … thank you for your dedicated research on this book you are a life saver!
AMAZING! She is a FANTASTIC Advocate for Celiac Disease and her Bakery is so great!
What is the name of her bakery
Wow, I know exactly what she’s been through! I feel EVERYTHING SHE IS SAYING! I literally cried the other day of relief FINALLY knowing what has been going on my WHOLE LIFE! I had a doctor last Friday tell me to go on a gluten free diet because of the severity my symptoms have reached just to see if that is the problem.. since then I’ve done so much research trying to figure things out for myself and come across celiac disease then everything that followed... it was like being alive for the first time knowing what I know now. I’ve had fertility problems and other similar problems SINCE I WAS A CHILD!! I am now 28 years old and felt extremely ill so I went to the ER and got no answers, then was recommended by my aunt to see my new doctor now who may have just completely changed my life FOREVER!!!
Thank you for your interview ladies, I find it extremely informative and helpful!!
I knew something was wrong with my body too and finally found a GI doctor who believed me. I did have a blood test which was positive - but the endoscopy was inconclusive! I was so upset, thinking maybe I am crazy. Then my doctor ordered a genetic test and it came out positive. This is why it is so important to advocate for yourself.
Sometimes you can have partial villous atrophy and the samples the doctor took from your gut during endoscopy might not show the damage.
@@sarahchan4807 that's good to know! Thanks.
Good to know about genetic test
@@careerscoop5241 yes you should talk to your doctor before eliminating it because the diagnosis may not be clear if you stop eating gluten now. But if you don't feel you need to get a diagnosis then eliminate gluten and see how you feel.
Breakfast is always the hardest meal for me but typically eggs, fruit, and sometimes bacon or sausage. Or oats are a good choice (they must be certified gluten free!)
@@careerscoop5241
CROSS CONTAMINATION
From gluten products to the oats
Be CAREFUL
7 years old this video and I’m only being tested now. I’m 56 and have fought a years full on battle to be listened too. I am being test now but I’ve had it with being told I am mentally unwell. No I am not. I’ve been invalidated all my life and will not allow that again. Thank you for this.
I completely relate. You know your body best. A lot of doctors are ignorant and their egos are huge. It’s so hard to deal with medical “professionals” who tell you what they think is the problem when you know your body and what you’ve gone through
I’ve had digestive problems for many years but couldn’t get answers, my mother had the same but just lived with it. It came to a point where I was taken into hospital and told I had a month to live, it was finally diagnosed. Thank you for exposing this disease
Celiac disease is a annoying disease. And it has ruined my life. oh well. I've learned to live with it.
ALOHA Nicki,
We all seem to be in this club of Celiac Disease! I agree, it's VERY annoying! So tell me, do you every once in a while say, "ah forget it" and eat something you know you shouldn't and then pay for it later? You think dis old Aunty would know better! lol.
Take care, hang in there and don't forget to share you aloha spirit with another.
GOD BLESS,
- AuntyKeli ;-)
Nicki Collis omg same it ruined my life because I accidentally ate gluten and then at my birthday party the symptoms kicked in and I barfed in front of all of my friends, a couple ran outside screaming like I was some monster and like I’m still embarrassed
The story of a celiac. And the struggle of holding yourself together when you feel like you're falling apart.
@@auntykeli theres no way I would forget it and eat gluten. However, definitely at times when I will eat something that is gluten free and not be concerned about the contamination. BUT I pay the price later and I'm done! I'd rather starve than eat more pain
Aunty Keli
I ate 4 pieces of chocolate 4 days ago and I didn’t know that it was gluten in it and I have had stomach pain for four days now nonstop. I would never eat it if I knew it was gluten in it. I couldn’t go to school one day because it hurt so much.
I got tested for Celiac and the doctor did NOT tell me I had to have gluten for the test to be accurate. Obviously it was negative. They just told me I had IBS and prescribed meds to help with IBS and none of them were working. Until a week ago, I was in bed for hours, in pain, screaming in tears because the cramps were so unbearable. Still convinced I don't have IBS, I started a gluten free diet and for the first time for months, I have been able to spend a day outside of bed. I am now going to push for tests and to have correct answers because I don't want to live with question marks about my condition.
@@careerscoop5241 Oats in themselves do not have gluten but sometimes they will be recognized as a problematic substance by a person's body and react similarly to gluten. Until you are sure you are okay with gluten, stay off it.
It took me over 2yrs of insisting, changing all my doctors n was eventually taken serious. By the time I was diagnosed with celiac disease I was already diagnosed with lumber scoliosis, osteopenia, ovarian failure/menopause. My body just started falling apart, they took out a 15mm polyp from my colon when my GI did the colonoscopy and endoscopy.
Celiac disease is not just about living a GF diet it has more to it. For example, shampoo, conditioner, toothpaste, detergent, soap, make up, etc. I'm so over it. Wish it could have been caught sooner. God bless everyone living with this disease. 🙏
I could cry. I just watched this after my son got diagnosed and it’s so misunderstood. Thank you ❤
I'm so glad to see this. I was recently told I am celiac and it's just been a nightmare. It means so much to hear someone else honestly speak on how difficult this is and be transparent. I am so sick right now, like I've been sick my whole life but right now I am sooo sick. The way she describes it is how I feel right now. Like the way she was sick at work, this is me. I tried to hide being sick for so long until I just got so sick it was literally impossible. I'm basically disabled and can't function. The panic attacks that started half a year ago has been a nice touch to this hell hole. Guys, you need to know that what shes saying about getting a negative before getting a positive happens so don't immediately think you don't have it. I got a negative twice before getting diagnosed. If I hadn't ignored it after the first test as I did years ago I wouldn't have my life in the hell right now. Don't make the same mistake if you suspect you might have it.
I hope this all worked out for you. I recently went off gluten myself, and was surprised at the actual withdrawal I felt from that process: nausea, sweats, stomach pain, fatigue. Incredible, really. And then the gut takes time to heal.
Celiac manifests in ways no one, even doctors, know. Mine didn't rear its ugly head until I went through severe trauma. I kept telling my doctor something was wrong as I felt terrible and kept losing weight, but I didn't have any other "typical" symptoms - until I died in the ER because my heart had no potassium. They brought me back but I ended up with a pacemaker. It took me a year to put on enough weight to get out of danger. One big symptom I had was very severe dizziness.
I'm celiac and have decided to start a RUclips cooking show to show that gluten free options are easy and delicious
Hello celiac
How about pirogies!
I have celiac with the dermatitis herpiformitis (scalp, neck and chest) and not any gastro symptoms.
Thank you❤
Having itchy skin is very unpleasant, I get it mostly at night in the scalp and even in my eye brows itch 🤷🏼♀️ plus my hair is very dry. I wasn’t aware it was celiac related. I’m glad you don’t have bowel problems Lisa, that’s a plus. I feel for everyone who has celiac disease, especially babies and kids, 😒
For years before gastro symptoms, I had fluid filled itcy blisters on my elbows, went to 3 Dermatologists, no one knew it was a symptom of Celiac.
Excellent video. Similar story for me in terms of manifesting in panic attacks and bad health generally. Fobbed off by so many doctors and had rafts of tests for symptoms with no one checking for ceoliac. Still battling the impact 10 years after realising it was gluten. Kudos to this lady for explaining so clearly, factually and expressing the failings by medical profession.
What happened to Jennifer Esposito happened to me. I didn't know or didn't even think that the underlying IBS, malabsorption, mood swings, jaundice, anemia where associated with me having Celiac Disease. All I can say it's horrible when not diagnosed because you just keep having all these issues and try to be as healthy as possible and still keep having them and going to the doctor and feeling horrible all the time. I just got diagnosed recently after a celiac test was done. The flares are still there but I am starting the be treated appropriately now. I just hope I can finally feel better and taking it, one day at a time. The Celiac Diet sucks but I rather stop having so much horrible stomache issues, fatigue, edema, anemia, nutricional defiencies, IBS, bloating, horrible mood swings than eat the really good tasting food. I am currently feeling down because it's a complete 360 you have to do on your diet but I am on the way to healing. All I can say is that yes this can go undiagnosed for a long time, symptoms are everything Jennifer has said and more and can affect your day to day life. I really recommend people who start having a lot of IBS to get tested for Celiac and especially undescribable bloating, pains, mood swings even when exercising daily and eating extremely healthy, just get tested. Sending good vibes to everyone going through similar life wrecking symptoms
It is so hard when you are first diagnosed as it’s overwhelming. I have just purchased your book. Thank you. 😊
Love ur work Jennifer E. thank u for helping educate us more. As someone w/Crohn's disease, finally diagnosed in late teens, I dealt with the same things being stereotyped b/c it was mid 80's & I'm a gay man. They kept assuming I was lying about not having any sex at all (which was 100% the truth!), let alone lots of casual sex & tested me countless times 4 it, by several docs, ER's, hospitals. I only got sicker thinner and without any health insurance more broke by the week. The medical profession totally failed me and I gave up trying to get help. Until I weighed barely 100 pounds @ 5'9" (about 55-60 pounds underweight) and was so sick that my bosses had to talk me into trying to get medical help again because I was going to die. Thank God I finally found a dr who actually listened to me and heard everything I'd been through, test results so far, symptoms etc. and before he even examined me he said I think you either have Crohn's disease ulcerative colitis or parasites (not having been out of the country took that possibility out of the equation). One of the craziest, funniest things about the time I went from hospital, Dr. and ER without insurance to try to get help because I knew I was seriously ill, is that not one of the "medical professionals" ever said to me there might be something wrong with your G.I. tract, not one single doctor even got close to what became the very obvious truth!? Come to find out after I finally was properly diagnosed my symptoms were very hallmark/typical of Crohn's disease... it's really sad the suffering that so many of us go through when we like you Jennifer, are trying desperately to get help, not ignoring the problem but we run into ignorance stereotypes being belittled not being taken seriously and all we do is get sicker. I wish you nothing but health and happiness for the rest of your life. Thank you for sharing your story it will help so many people! Best of luck in your profession and I really love you on NCIS!!
Yes panic attacks are game changer indeed
I was just diagnosed a week ago with full blown celiac. I was scoped 8 years ago and was told negative but even the doctor that recent scoped me thinks the pathologist was wrong. My symptoms were diarrhea, unexplained vitamin deficiencies and migraines.
One thing the doctor got wrong was that you don't have this condition from birth. You can develop it anytime in life if you have one of the two genes associated with it. If you have the gene but you test negative for celiac you're advised to get tested every 3 years, or earlier if you experience some symptoms associated with celiac disease. There are 300 symptoms that have been linked to this disease and it's one of the most commonly misdiagnosed.
Celiac is hereditary, but can become problematic at different ages for different people. When one begins eating WHEAT, how much, and how dramatic the effects on one's body, give different conditions.
That’s what I was thinking as well!
@JonnyC 289 take out the gmo's, sugar, and processed cooked fats then tell me how things work? Part of the equation why millenials are not thriving reproductive wise, I do think.
I have had it since birth but they diagnosed me with it when I was 5, I always had the symptoms and when I was 5 nearly died cause of it so they did the test and I was diagnosed. I guess it varies with everyone.
You are absolutely born with it. Your genes don't change as you get older. If you have "one of the two genes associated with it" it's because you were born with them. Then at some point in your life, that gene can be triggered and 'switched on' (due to stress, illness, etc.), and then the symptoms start -- unless you happen to be asympomatic.
A panic attack is also due to malnutrition especially of vitamin Bs, which are very important for the health of the nervous system
For Those Of Us Who Have Celiac Disease & Gluten Intolerance, I Stand With You In The Fight For A Gluten Free Society. 💯 Because I Have Celiac Disease Too & I've Had It For 14 Years. 💯
Why should other people not have good bread?
Thank you so much for sharing about the panic attacks.
Omg this is my story. I’ve just gone gluten free, and sugar free to try and find a dietary reason for all these unrelated issues I began to Improve immediately.
@@careerscoop5241 I stopped the gluten and dairy. I'm not going to lie. It was hard. But feel 100% better now. I had already started cutting back but once completely off. I started to improve. I'm going to add a link from the doctor I follow on youtube. He's awesome.
From Australia : 1 in 70 people have Coeliac disease, most undiagnosed. I am a Coeliac dentist and often suggest that patients be tested - sometimes with positive results. Very satisfying. The diagnosis is life changing.
My blood test was negative but thank god I have done a DNA test and I was positive. That saved my life!
DNA is not confirmation of celiac disease
It took me more than 10 years to finish uni because of an undiagnosed coeliac disease. I had panic attacks and felt sick and nauseous all the time and thus missed a lot of classes over a long period of time. I lost part of my front tooth and my doctor wasn't really interested in finding out what was going on. Not until I went to another doctor who told me at my very first appointment that I could have coeliac disease was I finally diagnosed. People who see my CV always ask me why it took me so long to get a degree and secretly think that I was a lazy student who just didn't want to get a job.
Wow! I have been experiencing really bad stomach cramps after eating gluten for a few months.. and couldn't put my finger on it. Now listening to Jennifer I have experienced almost all of the symptoms she has had. Skin dryness, anxiety and panic attacks as well as Bowel problems. Better get tested.
December 23rd was ten years since my Celiac Disease diagnosis. I was diagnosed by lab work done by my primary care doctor. I am so grateful to her for putting the pieces of that puzzle together. I still have to educate new residents and fellows who come in to care for me on other parts of my medical team. Due to Celiac I have chronic iron deficiency anemia.I will be on iron for the rest of my life since I have times where my lab work for my iron comes back a little bit low.My primary care doctor is doing her best to care for me and my Celiac disease. Even though I am gluten free it's still attacking my joints. I'm on all the supplements that we think I need for right now. I will see my new GI doctor in January which I'm nervous about since I have to go through the whole Celiac Disease diagnosis again with a new person.
I’m 44 and jus found out I had this but I’m glad I was checked out because the pain in my stomach was not ok at all and the tiredness I was getting months before it was concerning.so I feel better after going gluten free.
I've learned a doctor discovered Celiac during WWII, so the medical establishment has known about this awful disease for roughly 75 yrs, but seem not able to diagnose people. The system is protecting profits, especially the Pharma-Industry. If you suspect you may have Celiac, find out what doctor will do whatever it takes to diagnose, most won't do it, as they are encouraged not to.
Every country needs to train the people who work in restaurants, or places where work with food ..and teach that people about this! I went to USA for my vacations and I feel that a very few people know about this. And is very difficult to find a place to go to eat in a safe way. Because the cross contamination is very danger.
Bless her - dreadful and debilitating agonies of coeliac disease and everything else that goes with it.
I have this. Neurological disorders are my biggest symptom, malnutrition, hair falling out, etc. Its not a fad, its real!
Christy Keener if you feel like sharing...what kind of neurological disorders did you get from it?
@@alexisyates28 permanent dizziness, tinnitus, vertigo, slurred speech, and migraines with aura. It is better going gluten free, but sometimes I get something with it in there and it worsens.
Christy Keener so it never went fully away when you went gluten free ? :(
@@christykeener2167 How is your hair now? :( Im also losing hair
@@christykeener2167Me too. Chronic vertigo for over 30 years. Gone when going GF. I also have ataxia and fall a lot and am unsteady when I get glutened.
She’s so brave and gorgeous. An early diagnosis for celiac disease is so crucial but I was lucky. My body broke down at 12 years old. I always had an upset stomach and I developed eczema almost overnight. My skin was irritated all the time and almost everything thing I ate made me sick. My mother, god bless her found a ear nose and throat specialist who, had studied food allergies. That doctor referred me to a doctor that specialized in food additive responses. This was in 1983. They didn’t even acknowledge celiac disease as such back then. I had to expel anything with yeast(gluten) in it. After a year of avoiding the following-egg whites, nuts, chocolate, tomato products, shellfish, all dairy, and several allergy shots, I was able to enjoy a slice of pizza without issues. The problem today is there is yeast and gluten in so much of US food it’s overwhelming. I am 51 now. I am very careful with yeast, shellfish and packaged food. So many “natural “ foods are treated with yeast or gluten. I am very conscious of what my body can handle. Moderation is key for me.
Years and years of having gi problems I’ve been told IBS I’ve been told IBD damage in my Gi years sence 10 years old . Last week after a test for it From my upper and lower colonoscopy it’s positive Years of health issues mental depression anxiety nerve pain . Skin problems that was just weird . I hope to learn everything I can do to feel better for once in my life . O and my teeth explain why they are not doing good for someone who took good care of them . I was a carb freak addicted to carbs . I hope I can change things around and it’s not to late . Im 54 now suffered years of GI problems. Im glad to find this out for once in my life maybe I will better no brain fog bloated belly diarrhea and IBs meds make it worse. They put me on them the pain be so bad in my stomach. Can’t wait to feel good .
I was also thrilled when I got my diagnosis it was a long struggle with all kind of symptoms and doctors where not really convinced that something was wrong
I felt like my body was dying and every now and then I get a new symptom and finally I know
Thanks dear for saying exactly what I felt
This is an almost total match for my symptoms, including the tooth loss. Incredible.
This is such a good and comprehensive explanation of coeliac disease. I'm so pleased to see appropriate content about being coeliac on RUclips. Thank you!
CELIAC DISEASE IS WHAT IM TALKING ABOUT
I too also constantly still get sinus infections all year long, as well
Celiac decease did not ruined my life but unprofessional doctors actually did it. I was told that I was fine, I was told that everything was inside my head and that I used depression, adhd, memory loss as excuses for my not well behave. I had issue with stomach, arthrosis, muscle pain and so. I then forced my self, went gluten free for 8 days and i literally lost 21kg in 7 days. When I came back to my doctor, he said that my body was just too good. I then went back with gluten for 2 weeks, I had 2 crash and went to the hospital. Finally when i took the gastro and I received the result as positive. Still in pain
It’s a shame that our doctors aren’t educated I’ve been to three doctors and counting and still don’t know what’s wrong with me
I have all those symptoms and im super depressed and have anxiety..and i have siblings that have celiac and I asked to be tested and she told me to go for test in 90 days!! Since then I'm so sick iv lost my job!! And me and my girlfriend are breaking up because I'm so lazy and have no energy and all I do is lay in bed!
She's a Very talented and Beautiful Actress
Jennifer Esposito, thank you for paving the way to make it ok.
my doctor thinks I may have it. I have low Iron, folic acid, B12 and Vitamin D. I didnt realize that Panic Attacks could be part of it. I get those. I also get gastro issues too.
I hope I have it. I've been progressively sicker for 6 years. GI issues, panic attacks, low vitamin D. I have them. I've spent too much money on trying to get better and going to the doctor and getting tests done that I can't do anything else done right now. Fortunately I can go off gluten and see what happens.
This is so relatable. It's really nice to see someone talking about this the way you do. Thank you for your openness.
she has the most beautiful smile
That’s so hard to leave with this disease God bless us🙏❤️❤️
I just recently found out my cousin has celiac and she has all the signs of malnutrition because she can't absorb nutrients anymore. The odd thing though is her blood test was negative, the biopsy was positive. I definitely have signs, and I need to keep a closer eye on it now that I know the gene is in the family. When I got my blood test it was negative, and I should be having the biopsy in the next month or so. She did some sort of genetic testing, and apparently the celiac gene in our family shows negative on a blood test but positive biopsy.
I have celiac disease and always remember having pain in my abdomen . My parents even took me to a masseuse who massaged my abdominal area because they thought something was stuck in my guts - explaining why I had a distended abdomen. Kids at school would call me a “Somalian “ the pain from the bloating just became normal for me and it bothered me when friends and family members were not able to relate to my pain - I thought everyone else felt what I felt . I would repeatedly ask my doctor why I was so tired all the time and he couldn’t explain why . I would eat some cookies or some Mexican sweet bread and I could knock out all day long . The fatigue for me was super debilitating , the pain from the bloating , the “crampy “ feeling was also debilitating . As I got older , it got worse . Until one day I ate some wheat bread after I had just eaten some chocolate cake (I had never really eaten wheat bread as I didn’t like it but one this one particular day it’s all we had ) I got the worst diarrhea in my life . It was like food poisoning . Actually , if Uve ever had food poisoning then you kinda experienced what we with celiac disease feel like all the time (before being diagnosed )
I don’t blame the doctors so much for misdiagnosing because some were thinking I had IBS . The reason we can’t blame the doctors is because we don’t always give them enough information to lead them into having us tested for celiac disease . Had I told them that all my symptoms would
I wish she was still on "Blue Bloods." She was great on that show.
:(
I’ve tested negative going on 4 years and I’m getting the run around and I have all the symptoms and I’m only 0.1 from having celiacs. I haven’t been losing weight I’m gaining it I bloat so bad I feel sick or fatigued my hair is falling out rashes joint pain, diarrhea headache vomiting stomach pain anxiety low level vit D3 acid reflex. It’s horrible when your pcp just blows you off so they don’t have to deal with it.
Every Celiac goes through the same shit I was 16 when I first got my symptoms I was told to DRINK WATER and get enough fucking sleep can you believe I was treated like I stump I cant even explain- like a complete idiot totally dismissed until I lost so much weight they had to pay attention. By the time I had my biopsy I had stopped eating gluten for months accepting I probably had celiac disease but also just stopping eating all the things which made me feel like hell which happened to be wheat/gluten based foods. At that time my gut was so damaged I also couldn't eat almost anything as it hurt to digest everything they told me to do a gluten challenge and eat two pieces of bread everyday for 6 weeks and after everything it came back negative. I now know research shows that's almost nowhere near enough time to damage the gut again at least to the extent for a positive diagnosis. I'm self diagnosed now I live in the UK and unfortunately the public healthcare system is EXTREMELY dismissive when it comes to gut irritation unless your gut is hanging out- I know how I feel on gluten and I'm not only human but happy again completely off it.
falloutgirl902 I am so, sorry abouth your actual condition. It is the same symptoms my son had, and I just find out after long time; and the Dr told me OH IS NO REALLY ACTIVE He din't have to change diet "REALLYYYYYYYYYYYY' I WAS FURIOUS and walk out; and we start a glutein free diet. I hope He will field better
I had tests, biopsies and so on all negative for ceoliac. Then February I got a diagnosis of early signs of celiac disease. The doctors prior said that I have IBS or your just stressed or what ever but how celiac can effect your body Is immense! If you have a tiny crumb it sets me off - feel sick,unwell, sweats, cramps and lack of energy. It's big! A lot of people are still not aware. Another thing they need to get better in diagnosis assessment as getting diagnosed early is best! I've most likely had it before I had glandular fever and either when I was a child most likely!
Blue Blood's executives made a huge mistake letting her go from the show. She was one of the best actors on there. The show never was the same after she left.
Bull no difference.
They let her go after she could not work as much
She’s one of the most beautiful actresses in Hollywood
agree
When I tell the celiac nurses on my updates about my sore tummy. Pains in my joints feeling sick .she tells me it's not my celiac I should go and see a doctor. I know it's my celiac.
i just had bread and i look pregnant -_-
You cracked me up!
I went to a natropath and he gave me leaky gut diagnosis and celiac. Yes it's true thre is a brain gut connection
Great informative interview!
My endoscopy was not sedated and they took 11 samples which took 45 mins.
wow I just told friends that I had panic attacks and I just knew it was due to Celiac.
I can understand mam
May you remain healthy
In my case, teeth and anemia. I was diagnosed 2 years ago. Anemia and gastro issues, like bloating, diarrhoea, no constipation. However, it is really difficult to pinpoint the disease since not all people experience the same symptoms.
Yeah, I was told it's in my head. I had to figure it out myself by trying different things and diets for 15 years..
At age 72, after a whole life of pain and suffering, damage to organs, all I hear was "your a tough case", or " it's in your head". Figured it out myself. Stopped all Drs and meds. Went gluten free. Unbelievable! Trigiminal-neuralgia, cluster migraines....gone after two years! Stomach pain and cramps...stopped.Trying to build up bones after 3 spinal fractures. Doctors need to stop giving pills for the symptom and start looking for the cause. Doctors are just legal pill pushers, listening only to big pharma.
THE DOCTORS PILLS ARE THE CAUSE !!!
Thank you , i know what you went through Jennifer it is TERRIBLE ..
My legs had turned black as though I had been in a fire. They did a biopsy and it came up positive for Celiac. That was 3 year's ago.
Pookie Arnold would you say it was like very bad bruising?
@@alexisyates28 Yes
Pookie Arnold thank you!
Pookie Arnold I have my endoscopy/colonoscopy next Monday. Hoping that 10 years of random ass symptoms finally has an answer :)
@@alexisyates28 It will.
I am from the UK and recently diagnosed. I had two cases of GI symptoms in the space of three months (i ate gluten every day). Doc suggested blood test. That was positive. Then i stayed on gluten for 6 weeks until having the endoscopy, which unfortunately confirmed the disease. No more syptoms at all during those 6 weeks. I've never been tired (despite two young kids) or had other indications of CD. Don't know how the doc suspected it. i could have easily gone another 10 years before it was discovered. It does make me consider cheating on the diet though.
Daniel Lally In one way I'm lucky...I can't cheat as I get so Ill the next day if accidently glutened, so cheating is never an option..and if you cheat your only heading for bowel cancer long term..so it's not worth it no matter how much you miss bread ,etc
+TopBloke52 The cancer risk is a hell of a lot lower than most blogger sites would have you believe though. Read some recent studies. Although there is a raised risk, it's no where near as high as many perceive it to be, even if adherence with the diet is poor. And since coeliac has not cost me my chance of immortality, I refuse to live scared. Something else is likely to get me in the end.
+Daniel Lally you could reach a point of intestinal damage that will make you very poorly through being complacent in that manner. . it's not worth it. wheat is a relatively recent addition to the British / western diet in the quantities it's consumed in. it's convenient.. as it's a staple ingredient in many processed foods but not that nutritive and ultimately damaging.
Thank you for posting this!
Work is the hardest when you're in charge of managing the place or people, and you're immune system and everything is just crashing. And you're fighting so hard to hold yourself together when you feel like you're falling apart. I cant count how many days and times I've had panic attacks or cried at work in the bathrooms because my hands shake so much or I get these rashes and dizzy spells or horrible HORRIBLE aches and pains in my body! And when I explain why I cant eat that slice of cake they're all having or eat whatever the fuck they're eat and they make fun of me for being gluten free and roll eyes at celiac. Like ugh!! It's the worst. The only people on my side are the other celiacs behind the screens sharing their experiences
I have DH and Celiac disease. Gluten is one type of Lectin. The key here is, stay away from lectins. Stay away from nightshades, legumes, and anything high in lectins. It's a tough diet but it works.
So this explains why she dropped off a bit in career work a bit. Super attractive Jennifer Esposito.
The dust from bags of flour in my workplace were causing hives on my legs. It’s not a fad diet and to this day most restaurants do not take this seriously.
Can low potassium all the time be celiac? I have to always take D2 and B12 and last two ER vists my potassium was low and I’m wondering why? I was given an orange drink once. But no one went further into why it was low and what to do.
There are many possible reasons for low potassium. And many, many possible reasons for what is troubling you. For example, the bacterial strains which are responsible for vitamin production, may be depleted. This would require increased vitamin intake, particularly vitamin B12. Can you provide more information?
God is love and he will be there for through it all
The amount of knowledge that GI MDs know about Celiac Disease can fill a thimble. And the vast majority of GI MDs do not give a 💩about you and your Celiac Disease. Make those two statements after beings diagnosed for 10 years and suffering for many years. You must educate yourself.
Problems started showing in 1985…doctors treated… like a hypochondriac until diagnosis in 2009!!!
I receive serious abdominal pain after eating bread or anything with wheat 🙇🙇 am really scared if it can be treated
Yeah! Stop eating gluten!
I have very celiac do many of the same symptoms.
A great loss to Blue Bloods, superb actress and great character.
In 2019, every so often, I had a hard time breathing, chest tightened, broke out in cold sweat, they did an EKG and other tests. Then my dr thought it was acid reflux, so i did a scope test to check that, and thats how they found celiac. I ate a couple pizza and breadstick and had diarrhea. Before that day i never watched what i ate as far as gluten because i didnt know i had it because i had no symptoms. This was the first time i had a sysmptom. But sunce then my hair grows at least an inch and a half every month, but it breaks at the ends so i cant get my hair to get longer. When i first found out, i went through what we had at home that i ate and looking then up to see if they were gluten free. Most things were, except bread, pasta crackers, soyu, oyester sauce, so i changed the soy sauce and oyester sauce and pasta to gluten free and try not to eat things with gluten. I take a bunch of vitamins a day to try and make up for what i may not digest. I do get cramps if i have a certain amount of gluten. My hair grows, but the bottom in the past few years have gotten damaged and breaks. So my hair cant grow longer it seems. I use coconut oil to sit in my hair before i wash it, it makes the ends feels less dry and break less. My nutritionist said to take glutamine for a few months, stop for about a month then start again. She said it helps heal the Vili. My stomach is constantly bloated, i have gained weight instead of losing and i only eat a handful of nuts in the morning so i can take my vitamins with something in my stomach, and dont eat again until dinner. I takeba chinese detox tea a few times a week, but other than that a some excercise i cant lose weight. Ive never had a hard time losing weight and always excercised. It was simple, eat less and excercise and the weight would fall off, now i barely eat mainly only drunk water except for a gatorade at dinner and a cupbof tea in the morning at work, and i cant lose a thing. Im 51 so not aure if its a horminol premenopause thing or a celiac thing. Just so frustrated why i cant lose and why i gained weight instead when im not eating much. But i do feel tired alot even sometimes have to. Blink or dose off while someone talks to me, but as long as im busy i am trieed but can stay awak.
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I miss her on Blue Bloods CBS was Chicken Shit with her
CBS has no Compassion
I love Jennifer and I miss her on blue bloods!
I'm not celiac but it sure as hell F'd my body up. 50yrs fifty years of torment and unnecessarily medicated just to add insult to the injuries
I just got blood tested .... really hope it's just ibs :( but yeah I'm losing weight so fast I cant gain it and I have sever depression that It gets to the point i think about suicide and cant help it... i had a miscarriage 2 years ago and never knew why or how it happened i have diarrhea almost daily and stomach cramps and bloating etc :( just nervous about the results
Panic attacks from low b vitamins and low in zinc which both are mental health nutrients. This happens from malabsorption.