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How I Diagnosed Myself with Celiac Disease | My Diagnosis Story 

Hailey & a Spoon
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I struggled with Celiac Disease for YEARS before my doctors found out the cause! I had to do all the work myself. Here is the story of how I found out.
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• What is Celiac Disease?
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2 окт 2017

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Комментарии : 194   
@kyotoai
@kyotoai 6 лет назад
It's amazing how often we have to do all the work ourselves, sometimes for years while one doctor after another fails to do anything. Then we have to pay them for doing nothing. Glad you finally figured out what was wrong and are doing better now.
@kevintoth5365
@kevintoth5365 5 лет назад
Exactly. Doctors are ignorant..
@haileyandaspoon
@haileyandaspoon 5 лет назад
It is crazy that doctors refuse to listen.
@bonniecarpenter145
@bonniecarpenter145 2 года назад
I’m thinking I might have this problem. Spent a year with reflux and stomach burning plus a lot of other symptoms. No doctor even suggested to test for food intolerances. They just gave me pills and left me to it 🙄
@tkrteejay5558
@tkrteejay5558 2 года назад
I needed to see this! Exactly!
@glysiagretz9350
@glysiagretz9350 3 года назад
"Everything I would eat, would hurt me somehow" This is what I have suffered with for so long. Your journey sounds exactly like what I just went through. Thank you for making me feel less alone.
@allieinwunderland9681
@allieinwunderland9681 3 года назад
It wasn’t until my daughter got really sick and was tested for celiac disease, biopsies labs etc. Her dr recommended we all get tested. My other children were negative and I came up positive. It all made sense! Years of migraines, stomach pain, bloating, extremity swelling, rashes, etc. I’ve completely changed my life, I’ve lost weight, the headaches are gone and my energy is starting to come back.
@yogeshsahu6895
@yogeshsahu6895 Год назад
can celiac also cause insomnia ?
@allieinwunderland9681
@allieinwunderland9681 Год назад
@@yogeshsahu6895 I generally just felt terrible in every aspect, including sleep!
@jordanksweet
@jordanksweet 3 года назад
Period when no one else helps you, HELP YOURSELF!!! I went to the Dr’s and personally asked for an allergy test, and am now on a gluten free diet
@sarahgreen8678
@sarahgreen8678 6 лет назад
It's so nice to someone else that struggles with Celiac Disease. I'm so happy you finally found your diagnosis. I've been living with Celiac Disease for all 21 years of my life. My entire family has been diagnosed with Celiac Disease. Me and my siblings were diagnosed after a failure to thrive as children. I have been living with it for a really long time! It's a lot easier than a lot of people believe. I hope the best for you and your diagnosis!
@haileyandaspoon
@haileyandaspoon 6 лет назад
+Sarah Green it really is, once you get the hang of it. I am almost to my 2 year mark of celiac and it has gotten a lot easier!
@faiisalsheikh8007
@faiisalsheikh8007 6 лет назад
Sarah Green how you diagnosed?
@kevintoth5365
@kevintoth5365 5 лет назад
Same here. Why we can't call out doctors. They completely ignore celiac disease. Why.????
@edtm701
@edtm701 6 лет назад
I had the same problem with doctors not listening. I had extremely bad periods and the cramps would be unbearable. I complained over and over again to many doctors and specialists. Finally this last year I had enough since now on top of everything else I would bleed at least 14 days out of the month. My uterus was enlarged and thickened. I was so sick of painful tests that I asked for a hysterectomy. We(including the doctor) was surprised to find stage 4 endometriosis. I had suffered since I was around 15 until the age 42. I begged a doctor at 35 to give me a hysterectomy and he told me i was to young. So I got to suffer a few more years. One good thing was I was lucky enough to have my 2 kids without a problem. Now my biggest worry is that it will come back because of how bad it was and my rough recovery. I wish anyone out there with a disease good luck.
@haileyandaspoon
@haileyandaspoon 6 лет назад
+edtm701 holy moly! That is crazy! It is so hard getting doctors to listen sometimes. I am glad you finally figured out what is going on!
@JenSumma
@JenSumma 3 года назад
I'm on your page because I had the same experience. And peep this... I was a freaking medical student when I started dealing with these symptoms!! My professors knew about my symptoms and they were medical doctors!!! Nine months after becoming a doctor, COVID happened and I became too busy to cook and was eating free food that was donated to front line workers (gluten laden food). So I negotiated with the hospital to work until June 30 and then my dad died in May. I still worked. Then I ended up in the hospital with psychosis and was brushed off. They said it was grief and chronic stress. It's like my dad's death saved my life (he had the same symptoms since his mid-twenties) because the money from selling his estate has paid for all my hospital bills and gave me the time to get well enough to diagnose myself. Shame on this medical system.
@jameswalker3288
@jameswalker3288 4 года назад
I haven’t been for sure diagnosed, but I had been feeling anemic, diarrhea, fatigue, blurry vision, heart palpitations, numb fingers, joint pain, BLOATING with excruciating pain and I’m a mechanic... basically felt like I was going to die, and my uncle came over and started telling me 3 people on that side of my family have been diagnosed celiac (including him)... I went gluten free immediately and the bloating disappeared, mood started getting better, most of the pain has gone away, still figuring my stomach out though. I’m beginning think I’m also lactose intolerant because I used to be vegetarian/Vegan so I didn’t drink milk for years but ate cheese sometimes, and went pretty substantial amounts of time without dairy, so I think my body basically weened itself from milk at like 25 (I quit producing the enzyme) strange how we aren’t supposed to produce that enzyme but we evolved to continue to produce it.. I still haven’t had milk definitely not a full glass of milk in years 🤢, but I eat cheese sometimes and ball up and start talking to God. Anyways 🤷🏻‍♂️ that’s my shitty story, keep going I hope more people find this knowledge they say like 80% of people go undiagnosed with celiac.
@moniquefacey5760
@moniquefacey5760 3 года назад
I have your symptoms, how are you now? I havent been tested for celiac though.
@mollytheewok
@mollytheewok 5 лет назад
Same here! I googled my symptoms and guessed I either had IBS or celiac. I asked for testing and I now know I have celiac disease.
@haileyandaspoon
@haileyandaspoon 5 лет назад
I am glad you found your answer!!
@rosesponenberg8066
@rosesponenberg8066 4 года назад
I need to ask for testing too because I feel the same.
@dontneednomanstoptelllingm8481
@dontneednomanstoptelllingm8481 3 года назад
I was told I have IBS
@irenebaca3908
@irenebaca3908 5 лет назад
My wife thinks I'm crazy because I'm always researching my illness...I'm going crazy because the doctor is not helping me. What do I do
@haileyandaspoon
@haileyandaspoon 5 лет назад
You fight for your health. You find a doctor to listen and pray your wife comes around
@kurlykaitlyn
@kurlykaitlyn 4 года назад
Keep researching your own and follow the community on social media like Instagram. I’ve gotten WAY MORE support and help from dieticians in instagram than any doctor. They don’t even acknowledge celiac causing all my symptoms
@Cobbido
@Cobbido 3 года назад
Get a biopsy?
@dontneednomanstoptelllingm8481
@dontneednomanstoptelllingm8481 3 года назад
Same here. Like they care. They are Dr you don't know what you are talking about
@JenSumma
@JenSumma 3 года назад
@@Cobbido hey, I'm a medical doctor and I'm on this page because I think I have Celiac disease too. We aren't trained tobiopsies
@lovespink64
@lovespink64 6 лет назад
Similarly to you, I was having many symptoms that seemed to be all over the place. The worst of them was feeling nauseous and feeling full all the time, even after a small meal. The first doctors I went to claimed it was just stress and all my symptoms were nonspecific. They recommended the wait and see method, and after a few more months I decided to go straight to the GI doctor to see if they could pin point some potential illnesses. The doctor did not think I had Celiac, but I am so grateful I got the simple blood test done because I ended up testing positive, and it was confirmed though an endoscopy. I am lucky that my diagnosis came sooner rather than later. Thanks for all your helpful videos, Hailey!
@haileyandaspoon
@haileyandaspoon 6 лет назад
+lovespink64 of course! Thank you for telling me your story!
@jennaelisabeth2768
@jennaelisabeth2768 3 года назад
I’m struggling with the same, constant nausea and feeling full. I’ve been GF 2 weeks and still deal with crazy nausea every day. Did that happen to you too? How long did it take for you for those symptoms to go away?
@dawnpratt4608
@dawnpratt4608 3 года назад
Thank you this was straight to the point!
@rebeccadavis5451
@rebeccadavis5451 5 лет назад
I’m two years in my celiac journey. It all started with being sick the doctors deciding that my gallbladder needed to come out, got that surgery and felt better for about 6 months then all my symptoms came back only worse then before, I went back to my doctor and she said let’s get more blood tests done and I’m going to stick a test on to see if maybe it’s from the gluten, I went to get the blood test done and a week later I got a call from the doctor asking me to come in. When I got in to see her she said well we do have some answers but I’ve never seen anything like this in my whole time as a doctor. She explained that the normal range for for antibodies is 2-6 but your numbers are unbelievable that’s when she told me that for this test it reads from 2-250 she then told me in her whole time practicing the highest number she’s ever seen was 50 then turned the results from my test towards me and showed me that my test results errored because my antibody count was over 250. Now two years later i was able to get my numbers down as far as 138 but my resent check my numbers are back over 250
@haileyandaspoon
@haileyandaspoon 5 лет назад
I am glad you got your answers!
@lissettemustafa5677
@lissettemustafa5677 6 лет назад
You are lucky you finally got a diagnosis. I have all the symptoms but my test came back negative so my Drs think I'm just nuts.😥
@lnpiparo
@lnpiparo 6 лет назад
Lissette Mustafa - I know how you feel 🙁
@weszillich2880
@weszillich2880 5 лет назад
Jut stop eating it
@haileyandaspoon
@haileyandaspoon 5 лет назад
You may just have a gluten sensitivity
@bethmcfarlane8716
@bethmcfarlane8716 5 лет назад
Me too. I get so sick. They did testing and said I don't have it. So many symptoms, wth....
@ameliacua6437
@ameliacua6437 5 лет назад
Beth McFarlane Gastrointestinal diseases have sooo many similar symptoms, celiac can look like a lot of other things too!
@Katty-ju3oe
@Katty-ju3oe 4 года назад
I freaking hate celiac disease, as I child I was born with it and nobody knew I had it, so I went through years and years of throwing up and stomach pains, I could barely even walk. The other day I accidentally ate gluten and I was in bed for 7 hours, all my friends tell me 'I wish I was you because you get the best food', Well they never thought to realise the amount of pain I went through for about 5 years. When I was 4, I'm not supposed to be in prams anymore but yet I had to sit in a pram when going to places because I couldn't damn walk, I still remember lying in a hospital bed when the doctors thought I had fucking leukemia.
@jennaelisabeth2768
@jennaelisabeth2768 3 года назад
When you went GF did you deal with a lot of initial nausea? When did it go away? I’ve been GF for 2 weeks now and still am so nauseous all the time.
@Katty-ju3oe
@Katty-ju3oe 3 года назад
@@jennaelisabeth2768 I get extremely Nauseous when I eat gluten, I have a severe case of it and depending on how much I accidentally eat- I could be in bed for a day or more and it constantly makes me weaker. Even when I don't eat it, I sometimes to get a bit sick from the smell of it as well. Sorry- hope this helps, I'm not exactly an adult so.
@jennaelisabeth2768
@jennaelisabeth2768 3 года назад
@@Katty-ju3oe that makes sense. Thank you for sharing your experience!
@kanon49783
@kanon49783 5 лет назад
I’ve had all the symptoms you described for years. I’ve seen doctors and they’ve just blown me off. I recently seen a general surgeon and she’s testing me for Celiacs. I just had my blood test a couple days ago and I have a colonoscopy in a month. I just want to know. I’m over the pain!
@haileyandaspoon
@haileyandaspoon 4 года назад
How did you testing go?
@BB-kt5eb
@BB-kt5eb 2 года назад
I strongly suspect that I might have celiac disease for a number of reasons, but the most annoying and persistent thing I experience is a constant discomfort that seems to be just under my bottom left rib. It feels as though there’s always some kind of internal pressure bulging into the bottom of my bottom left rib and it gets much after I eat or drink most anything I actually like. It’s always there and has been since I was about 17 years old, but it is worse after I eat or drink most things I like. There are other symptoms, but this is the one that gets on my nerves more than any other because it never fully stops. My doctors are dismissive of my complaints about it and at least two of them have told me celiac disease and gluten intolerance are not real conditions anyone really has.
@DIYbyEunice
@DIYbyEunice 3 года назад
I'm afraid I might be celiac too because i have almost all of symptoms..me being underweight disturbs me alot..Am yet to go for diagnosis and i fear and the invasive tests
@FriendlySpiderFriend
@FriendlySpiderFriend 4 года назад
thank you for this video! i'm a college student and i was feeling TERRIBLE every single day. it was so hard staying motivated and doing well in school when i was in constant pain, bloated all the time, sooo sluggish and fatigued that even sitting at my desk to do homework was overwhelming and draining. I did not want to go out with my friends because i was just soo tired all the time. My skin was getting terrible and it was becoming an insecurity for me. Everything was going so wrong and I literally couldn't do it anymore. They only days I would feel a bit better were days where i would BARELY eat anything. One day I woke up feeling significantly better and i didnt know why. so i analyzed my day and realized i hadn't eaten any bread or pasta the day before (it took me a few days to figure it out with the help of google). in the next few days i started to pay attention sooo specifically to how i would feel after eating specific things. Today is my first week being gluten-free and i'm feeling so much better. I almost cry of joy thinking when i remember how miserable i was for about a year. I visited a doctor once and it didnt help at all. so i was hesitant to go back. But i'll be visiting in the next week to discuss this. Thank you so much. This video really really helped me feel less alone about the symptoms :) its hard to feel this way and not know why. I was eating "normal" food so i didnt even think about gluten . MUCH LOVE STAY HEALTHY!
@haileyandaspoon
@haileyandaspoon 4 года назад
Thank you so much for sharing your story! I am sorry you were having such a hard time. Been there, done that! If you are being testing for celiac, make sure you have been eating gluten so you have accurate results.
@tommygunhunter
@tommygunhunter 3 года назад
@@haileyandaspoon Why bother with test? If he feels better being gluten free why not just stay that way and skip the expert diagnosis? I mean when you got diagnosed all you were told to do was stay off gluten!!!! That is the only curative. Abstinence.
@nelacaro57
@nelacaro57 4 года назад
Thanks for sharing. I have terrible tummy issues when I eat pasta and bread: abdominal pain, gas, constipation, headaches, etc. I don't eat pasta but bread it's been so hard to cut from my diet and Everytime I eat it it's so bad. I made an effort and stopped eating gluten for 2 weeks now and I've noticed a difference. So last week I visited the GI and he told me I might be celiac o gluten intolerant. Now I have to be tested and he said I must eat food with gluten before the test and I'm scared because I don't want to feel bad again. :( this is my story so far, I guess I will be tested next week.
@haileyandaspoon
@haileyandaspoon 4 года назад
Sorry it has taken so long to respond. Life has been so busy! How was your test? Did you get any answers?
@858Alexis
@858Alexis 5 лет назад
I just got diagnosed myself by myself too! Such a similar story to yours wow
@haileyandaspoon
@haileyandaspoon 4 года назад
Did you schedule a scope? If so, how were the results?
@858Alexis
@858Alexis 4 года назад
Hailey & a Spoon funnnnn story lol my doctor told me she thought it was unnecessary bc my blood levels were so high she thought it was not needed. Now that I’m doing more research I’m learning it really can be important to get it so I’m going to another doctor for another opinion! I go on the 15th to see a new doc
@gayleambrus2555
@gayleambrus2555 Год назад
I have to start giving myself shots and I'm scared to do it, when you first start do you jab it in or what
@laurennicole4667
@laurennicole4667 6 лет назад
The "med student" doctor in the dr office I went to flat out refused to test me for this.and I have felt all these things my entire life and with each baby has even made it worse if that's possible. 3 babies later and I'm 29 years old I know this is what I have
@haileyandaspoon
@haileyandaspoon 5 лет назад
Get a new doctor. Fight for your health.
@sharonrayburn8357
@sharonrayburn8357 Год назад
I’m crying watching your video. I’m hopeful that my GI dr appointment tomorrow. I’ve been asking to be tested many times but instead just keep getting the run around. I’ve had ultrasounds or my abdomen kidneys, vaginal ultrasounds and ct scan. Then genetic tests that found out I have Lynch syndrome so now I’m seeing a GI dr and getting a colonoscopy/endoscopy soon hopefully. My appointment is tomorrow and I am pushing for this especially after my niece and my aunt were diagnosed with celiac
@DaniellesMicoMarley
@DaniellesMicoMarley 4 года назад
was your mouth always white from rawness, perhaps all the acid coming up?? Mine is like that and its starting to scare me i think its getting worse. I was eating n TMI but a huge sliver of skin came off the roof of my mouth :( it was raw like a blister similar to a burn :( but i didnt eat anything hot not even previous to that. Even if I did that wouldn't happen...Your story makes me have hope I'll find out whats wrong me
@haileyandaspoon
@haileyandaspoon 4 года назад
I do not have that issue, but I have heard that others have. I hope you find answers soon!
@laurabyley8169
@laurabyley8169 6 лет назад
I was diagnosed after two years of neuropathy symptoms First . MS was suspected but the MRI was negative. Then later Lupus or Rheumatoid was suspected... It was my neurologist who diagnosed me with copper deficiency. I went back to my PCP but No further testing as to why I had a copper deficiency was done. (We only need trace amounts of copper so a deficiency is very rare) I was overweight so I guess my drs assumed I was not having trouble with absorption. I went to the Dr several times in two years with complaints of worsening symptoms even after my copper levels had been brought back to within normal range, and couldn’t be blamed for the neuropathy. I feel like my dr didn’t know what to do with me and gave up on trying to find an answer or maybe didn’t take me seriously anymore and thought I was fabricating my symptoms. The last time I went to him was for swelling hands and feet which he had previously prescribed a diuretic for. When it didn’t work he had told me to double the dosage and I ended up at the emergency room thinking I was having a heart attack, my potassium was dangerously low. But anyway after that episode I went in to let him know I was still swelling and to tell him that I ended up in the Er due to low potassium. And that I was still so tired all the time which was a symptom I had been dealing with. He said “well let’s do a sleep study, we haven’t done that yet” I didn’t go back. I found a new Dr. She ordered several test, one test being the Celiac Panel. only one test in the celiac panel showed positive, and I finally had my answer, and I am very thankful that it was only two years and not the 5 to 7 years that some people have to endure to diagnosis. I now know that my symptoms are considered A-typical and that far more people with A-typical symptoms are being diagnosed now than in the past when Celiac was considered a wasting illness due to diagnosed Celiac patients being underweight. I feel that is why even today, when you would think our physicians would be more aware and knowledgeable that so many go for so long without an answer because they don’t fit the mold of what a Celiac sufferer should look like. We are our own best advocates where our health is concerned. My thoughts and prayers go out to all who are living with Invisible illness. I believe you!
@haileyandaspoon
@haileyandaspoon 5 лет назад
THANK YOU! I am glad you got a diagnosis and are fighting for your health.
@Lanae1990
@Lanae1990 3 года назад
Hi Laura, I’ve been praying about a diagnosis due to very similar symptoms as you’ve described. I think reading your comment on this video was my answer. I am going to ask for testing.
@dreamwalker5367
@dreamwalker5367 2 года назад
OMG!!! So there, I have Durhings and CD. Retired EMT, sick for 21 years. Self diagnosed as the rash across my face, just stumped, 3 different Drs. Im amazed how very little the average Dr knows about CD. Ive gotten sicker and sicker, and sicker. I finally did some research, I know what it is, Im treating it, my Drs are clueless, and Im in it alone! My question, how long before I start feeling better?
@littleripper312
@littleripper312 5 лет назад
I didnt get a positive on my celiac but the doctor thinks I either have a false negative because of something in my tests that showed up or that I have a sensitivity. It's frustrating because I'm really really sick right now and they're like it looks like it could still be gluten but maybe not. Ugh it's incredibly frustrating.
@haileyandaspoon
@haileyandaspoon 5 лет назад
You should ask them for a scope to get a definite answer.
@tylerb2438
@tylerb2438 3 года назад
In general, Doctors are useless unless you're lucky and find one that does give a shit. Most are just happy to do as little work possible as they still pick up their wage at the end of the day. Or at least the Doctors here in the UK. I diagnosed myself with Celiac (although for me it could easily be SIBO which is a different thing altogether) and today have started my one month gluten free diet to see if it helps any of my symptoms to get better or ease up a little. Love your hair by the way!
@adnanal-suleimani4728
@adnanal-suleimani4728 2 года назад
Did the gluten-free diet work with you?? I’m starting today
@PolkaDotApron
@PolkaDotApron 5 лет назад
Hello. I have an appointment on the 12th. They said you need to have some gluten in your system to test for celiac but I’m terrified to eat anything with gluten in it.
@haileyandaspoon
@haileyandaspoon 5 лет назад
I don't blame you. But to get true results you need to consume at least one piece of gluten filled bread (or it's quantity), a day.
@PolkaDotApron
@PolkaDotApron 5 лет назад
Thank you for sharing your story. I thought I might be just gluten intolerant but I have all the same symptoms as you and maybe should get tested for it.
@rses916
@rses916 3 года назад
@@PolkaDotApron update?
@isabellakoshy1504
@isabellakoshy1504 3 года назад
Did you ever get tested?
@norainnoflowers1557
@norainnoflowers1557 5 лет назад
I haven’t always been sick! Last year I had digestion problems and kept getting colds and sinus infections. At the start of this year I got some migraines but I thought it might of been due to the pill. I’ve had rashes for years! All of the ones are itchy but some end up in hives and some are just red spots or patches. They are mostly on my arms but I have had them on my feet, neck and face. My doctor thought I had sensitive skin and it was due to allergies. This year as well I have been having really bad digestive issues and stomach pains. Chest pains has been happening this month and I’ve been to the hospital for it. My heart rate is sometimes double what it should be but they did a chest x Ray and they said it looked normal. Slightly high WBC but nothing major. Lately my body has been sore too and I’ve been tired all year. I used to take naps daily for a while but it’s stopped now. Sometimes I get tingling hands. My gp is testing me for celiac and other things like glandular fever. I have an appointment next week but I’m assuming it is okay because I haven’t had a call and it’s been a couple of days since I had the bloods taken. My digestion seems to be getting better since this past week but my stomach hurts 10 minutes after eating. Does anyone know what this could be? I’m 17!
@norainnoflowers1557
@norainnoflowers1557 5 лет назад
Just got a phone call from the doctor that my blood test came back positive for celiac! Now waiting to get the biopsy to confirm it!!
@haileyandaspoon
@haileyandaspoon 4 года назад
I am glad you got some answers! Here is to gluten free living!
@annie947
@annie947 4 года назад
I am just interested if you can have celiac without serious digestive symptoms.. i am currently on a gluten free diet and i have noticed that i feel better. I had acne, psoriasis, brain fog, anxiety, anemia, i am very skinny and lost weight quickly and i tested myself, i am gluten and diary intolerant. However i haven't done a celiac disease test so i wonder because i didn't have serious digestive problems
@ivicapavlovski1933
@ivicapavlovski1933 4 года назад
Same here but with digestive symptoms
@rses916
@rses916 3 года назад
update?
@trishaninja123
@trishaninja123 5 лет назад
this is exactly how i feel! i’ve been trying to get my doctors to run a celiac panel test because i have to be consistently eating gluten and i’m so allergic that it makes my face swell up to the point i can barely open my eyes. it’s also in combination with rosacea so when i break out its bright red hives on my face and neck😂
@haileyandaspoon
@haileyandaspoon 5 лет назад
You have a right to have the testing done. I hope you get someone to listen to you soon
@snowps1
@snowps1 Год назад
You can look up blood labs near you and call them to see if they offer Celiac panel. A lot of them will just do the test for you and you just pay for it. It's not a very expensive test, less than $150.
@cherylsmith4868
@cherylsmith4868 2 года назад
Just come across your vid, I got diagnosed last week after a very long journey...I have a sever lung condition that has put me in induced Comas 3 times...plus many many many daily hospital visits...after one of these visits I had a x-ray that came back with a shadow on my lung ( yes this is still about cealiac disease 😊) so I was directed to a different lung consultant than my usual...she run many tests and blood work, and I was diagnosed with Eosinophilic induced asthma...which is when my white blood cells attack oxygen rich cells killing oxygen before it reaches any of my organs, the blood work also showed my immunity numbers were so low that my doctor phoned saying they only see numbers like that with HIV !!..after the most worrying time over a Xmas waiting on those results, they came back negative...bloodwork also showed I was very anemic...I felt like 💩 all the time and put it down to my lung condition and now anemia, I started on Biologics for my white cell condition ,...very expensive injections I keep in fridge and do monthly...but the doctor didn't know why I was anemic...I started having sever stomach pains and a werid dizzy sickness feeling after I ate things like cereal...I told doctor who sent me for edoscopy and colonoscopy....my brother was recently diagnosed with chrons disease so my Doctor went down that route...the colonoscopy failed has they couldn't get round my sigmoid discovering something called a tourtous bowel...(,extra long twisted bowel) accounting for why I only poop 1 a weekish, and some of the stomach pains..they took some biopsy's while they were in there and the results from that came back, I had coeliac disease...tbh I'm actually shocked by the amount of change to my diet this means....iv heard of gluten free...but just presumed you avoided bread..how naive was I....it's been a long long rd to get here...I also been diagnosed with under active thyroid taking 250 ml of thyroxin....and just being tested for lactose intolerance...other ppl get through this and learn a new way of life, so il keep on pushing through.
@ashmac1397
@ashmac1397 Год назад
How are you doing now.. I really hope you are feeling so much better🙏
@sixtysix2632
@sixtysix2632 5 лет назад
I can understand everything your saying. Im 52 and yeah I did self diagnose myself as well. Because I know what I'm eating makes me sick and bloated. And I so get very bad headaches and just feeling unwell all the time. Its just so......sickening. But, so many are sick and keeps going to the doctor and no one knows whats wrong with them. I think doctors should check the patients for these things. Because doctors give people pills to take and they don't work. Unlike many pills I would take don't work and they do something else to me. In a sense a person would be allergic to these pills. Because the body wouldn't tolerate it. I'm going to get this test too. People out there many foods are very harmful to you. So get tested and so you can feel good. Thanks for sharing your story.
@haileyandaspoon
@haileyandaspoon 5 лет назад
Thanks so much for sharing your story! I am glad you got a diagnosis for your pain! I agree that doctors should do more. That is my goal with my channel.
@adnanal-suleimani4728
@adnanal-suleimani4728 2 года назад
My symptoms were Stomach pain , indigestion and severe heartburn. Now im on a gluten free diet after I tested positive with celiac. Does anyone have the same symptoms as mine??
@sophielouiseffrench2568
@sophielouiseffrench2568 5 лет назад
Thank god ive come across this I’ve been struggling for 4 years and doctors thought it was my womb and then came across celiac disease and I have every symptom and having blood work next week to test for it I’m just really struggling at minute everything I eat is so painful 😖 bloating cramping headaches naesea
@haileyandaspoon
@haileyandaspoon 5 лет назад
Hope you get some answers soon!
@danikacortez691
@danikacortez691 3 года назад
I'm 22. I got diagnosed in September of 2020. I ended up in the ER in June 2020 with several abdominal pain. My doctor sent me to a GI doctor. They said I has ibs and wanted to do blood work. Its came out in my blood work and did and endoscopy and it came out postive for stage 1 and no damage to my bowls. I cried for the longest time it was awful. I have anxiety too so it made it worse I have my good and bad days now im in the process of checking for thyroid disease and aniema. Be strong
@dontneednomanstoptelllingm8481
@dontneednomanstoptelllingm8481 3 года назад
That IBS thing is really getting to me also
@danikacortez691
@danikacortez691 3 года назад
@@dontneednomanstoptelllingm8481 yes it can be awful at times but what helps me it epsom salt baths
@dawnpratt4608
@dawnpratt4608 3 года назад
I am waiting to find out but i have urgency bowel movements rashes metal taste in my mouth not much bile as part of roseacea
@yvettepiercy4487
@yvettepiercy4487 6 лет назад
It must be similar world wide, I have spent years trying to get diagnosed and asking even specialists about things. So I also googled, then I went and asked my specialist who said needed to see this person who then said no go see this guy. So I ended up at general surgery and said I'm pretty sure I have a rectocele, he organised the special xray and I got it done (wasn't fun). I went back and he showed us the xray and said I had a very impressive one and was oneof the worst he had ever seen, so I had surgery in January this year after getting to the point where a bowel movements had me screaming in pain because it hurt so much. Now for the first time in like 20years I understand what a normal bowel movement should feel like. I've also diagnosed every single one of my allergies while the immunologist sat there and literally shrugged their shoulders and said we don't know how to help you, first one was coconut which because blood tests didn't show a positive they didn't believe me until I could say I ended up in hospital twice due to both the flesh and the oil with 2 others at home plus a swollen tongue after coconut touched it. I also discovered I react to palm (it stops my system from functioning and I end up in bed for 4 days and if I have enough I projectile vomit everywhere), soy (horrible bloating and screaming in pain for a good 48hours), meat and egg (rash thats itchy, painful and very red. requires steriods to clear when bad, trade amounts usually can do without), animal fats (intolerant, the valve to my small intestine doesn't close so there is bile in my stomach at all times so I cannot process fats as my stomach gets overwhelmed with bile, self diagnosed at 13 for that but didn't know the cause), canola oil (intolerant but it is similar to the animal fat reaction), apricot (haven't had in years but last time there was a lil in something it made my throat itch), zucchini and cucumber I can't even swallow so I dont know how I react as body says a firm no, tap water (causes me to projectile vomit, we know its something they add to it but not sure what but probably whats used to disperse the fluoride they add). We are now doing patch testing this month FINALLY! It has taken too long to get here, and working closely with my current immunologist who is also a rheumatoligist as we've now ruled out lupus and scleroderma (positive ANA test so they had to be fully checked but took 3years to get doctors to do it), now its get my skin allergies under control and everything before we start on where to go next as I have chronic pain requiring codeine 3times a day and I can't skip a dose or I know all about it the next day. And other health issues but its really hard to define what it is as it could be fibromylga (can't spell today) but they say thats the equivalent of IBS in the autoimmune pain world (fun fact I dont have IBS but some functional gut disorder they can't pinpoint, but I don't fit in the vast IBS box). I'm glad my GP is great and takes me serious though he won't do all the tests I've asked for as a couple i wanted checked but nope, he's 99% onto it though. Specialists are a hit or miss, some have been amazing and others were like banging your head against a brick wall. Getting that diagnosis is the biggest relief there is, I know people think it would be scary but to put a name to whats going on and be able to know what to do and how to manage it makes you so fricking happy because its now that much easier and less stressful just to live. I'm glad you fought for your diagnosis, too many give up and suffer for it.
@haileyandaspoon
@haileyandaspoon 6 лет назад
+Yvette Piercy I can't live in pain and my health is worth it. So is yours. I am so glad you started getting some answers and I hope things get better for you soon! Sending love and positive vibes your way!
@lamichiganr326
@lamichiganr326 5 лет назад
My former P.A. was told my symptoms and she told me that I had IBS. That IBS diet didn't help. I told her and she blew me off again. I went to an Internist and she took blood and in 3 days she diagnosed me with Celiac Disease. I spent years being sick, so even though I have gained 30lbs, at least I now am healthy.
@haileyandaspoon
@haileyandaspoon 5 лет назад
I am glad you got your answers and have started the healing process!
@soukainachaina4460
@soukainachaina4460 5 лет назад
I’m getting blood work done soon too and I’ve introduced wheat germ to my diet (bc I dont eat much wheat) and I’m starting to feel very bad! I’m like 75% sure it’s celiac disease (especially since I have the celiac gene variation from a genetic testing).
@haileyandaspoon
@haileyandaspoon 4 года назад
How was the testing?
@brandeecastilleja1753
@brandeecastilleja1753 5 лет назад
Yess yess thank u im glad ur doing well
@haileyandaspoon
@haileyandaspoon 4 года назад
Thanks!
@jillbriska2416
@jillbriska2416 5 лет назад
If a dr won’t listen- CHANGE DOCTORS!!! Integrative/functional medicine saved me from drs that wouldn’t listen. I was told I was depressed and peri menopausal and they refused to do more testing than TSH for thyroid. I wasn’t depressed I was sick! My body temp was 95.5 and 95.4 is hypothermia- that isn’t depression. After leaving and finding new integrative dr and full work up it ends up I have Hashimoto’s and non celiac gluten intolerance. It was a 4 year journey to figure that out. Now I’m on the correct meds (natural dedicated thyroid which includes T3 not synthetic T4 only ) and putting the pieces of my broken body back together- liver, gut, adrenals all effected and my hair all breaking off . It didn’t have to be this way! Keep looking and change drs if you are not heard!!!
@haileyandaspoon
@haileyandaspoon 5 лет назад
Amen! Doctors need to listen to their patients because more often than not, we are right. I am glad you found someone who would listen.
@vestelle7283
@vestelle7283 4 года назад
Thank u my dear❣️❣️
@Crowfolk
@Crowfolk 5 лет назад
I have Celiac. I was diagnosed last month. I got sick last night and in pain as I type this.
@haileyandaspoon
@haileyandaspoon 5 лет назад
I hope you find relief soon.
@sahaecrosdale5576
@sahaecrosdale5576 5 лет назад
Please please please can you give me advice I was told by my doctor that I may gave it but he's not sure... I have all the symptoms but the vomiting and diarrhoea not every day but the nausea everyyyday..I look like I'm pregnant(bloating) and I get full too quickly and I have excessive gas..I'm so depressed and sad I live in jamaica I don't know if they have gluten free stuff... I'm tired of my tummy hurting all the time.. I wanna jump off a building
@haileyandaspoon
@haileyandaspoon 5 лет назад
Get tested!! I hope you get relief soon!
@sahaecrosdale5576
@sahaecrosdale5576 5 лет назад
@@haileyandaspoon how often do you have vomiting and diarrhea?
@haileyandaspoon
@haileyandaspoon 5 лет назад
Rarely, now.
@sahaecrosdale5576
@sahaecrosdale5576 5 лет назад
@@haileyandaspoon i heard that the blood test may not be accurate
@haileyandaspoon
@haileyandaspoon 5 лет назад
Blood tests are the start. You will know your numbers. You won't get full diagnosis until after scope.
@mileyandtaylor4life
@mileyandtaylor4life 2 года назад
Mine come back negative blood test but colocopy endoscopy normally both times but seeing someone again try and see
@AK-gy9ko
@AK-gy9ko 6 лет назад
How old were you when you were diagnosed. I'm 22 and I've been ill for a year now and recently got my blood test done, the results will be out in a week but I'm I'm suspecting celiac disease.
@haileyandaspoon
@haileyandaspoon 5 лет назад
I was 25
@idunsgarden
@idunsgarden 3 года назад
I had the blood test and it came back mildly positive by my doctor said because I have another autoimmune disease it could have caused a false positive. But now gluten makes me sick so I’m cutting it out anyway.
@courtneybtabor1961
@courtneybtabor1961 3 года назад
Did you receive additional testing?
@idunsgarden
@idunsgarden 3 года назад
@@courtneybtabor1961 nope.
@courtneybtabor1961
@courtneybtabor1961 3 года назад
@@idunsgarden I received a wean positive but dont know what the range of blood work I had.
@KeyKeyJournals
@KeyKeyJournals 3 года назад
It took drs 2 yrs and until I was only 94 lbs to diagnose me.
@dontneednomanstoptelllingm8481
@dontneednomanstoptelllingm8481 3 года назад
Same. I am 98 pounds. I still got no answer
@KeyKeyJournals
@KeyKeyJournals 3 года назад
@@dontneednomanstoptelllingm8481 get a colonoscopy to be sure🙏🏾good luck hopefully it’s not celiac but well wishes to you❤️
@KeyKeyJournals
@KeyKeyJournals 3 года назад
@@dontneednomanstoptelllingm8481 they have a blood test now to test for gluten sensitivity as well but for best results the colonoscopy is the way to go.
@leesasawyer3815
@leesasawyer3815 5 лет назад
Do you get bad post nasal drip vomit cough??
@haileyandaspoon
@haileyandaspoon 5 лет назад
I didn't
@leesasawyer3815
@leesasawyer3815 5 лет назад
I don't know what it is then no doctors seem to care cause it's all clear. one is actually testing me for this don't know why though never have before
@TwilightLover1234561
@TwilightLover1234561 4 года назад
Leesa Sawyer did you ever figure out what’s causing this? I’ve had the same issue for years at this point. Excessive post nasal drip gagging on the mucus until I vomit it up multiple times a week for the past ten years of my life.
@nattiemalik5273
@nattiemalik5273 3 года назад
What your symtoms for coeliac???
@adnanal-suleimani4728
@adnanal-suleimani4728 2 года назад
Heartburn, indigestion, bloating and stomach pain
@irenebaca3908
@irenebaca3908 5 лет назад
I need help because I'm going through the same thing
@haileyandaspoon
@haileyandaspoon 5 лет назад
Hope a doctor will listen to you soon.
@rosesponenberg8066
@rosesponenberg8066 4 года назад
Me too. 😩 Almost 2 years in.
@MiniStarNY
@MiniStarNY 4 года назад
Last November, I started going to this program for my ADD, and my mentors told me that I have to start gluten-free and diary-free diet. A month into the diet, I just realized something's not right......all my symptoms I've had for years just diminished! So I went to see my doctor for bloodwork on antibodies, and it came out very HIGH on gluten! I was surprised at first but not shocked, because my cousin got diagnosed with it a decade ago! It made all sense because my grandfather passed away from stomach cancer due to smoking a lot in the '70s. I had to convince my mom and my uncles, aka the baby boomers, that it is A HEREDITARY DISEASE. I just got diagnosed at age 25. I'm actually happy to know what it was because now I can actually start gaining weight and have a mUCH BETTER mind with the right diet!
@MiniStarNY
@MiniStarNY 4 года назад
I really don't blame my practitioner because she has been concerned just only about my underweight and trying to figure out why i have iron, calcium, and VD deficiency. I actually never told her other symptoms because it was normal to me and my mom.....Overall, I'm still relatively healthy beside this disease!
@haileyandaspoon
@haileyandaspoon 4 года назад
so glad you have found your answer!
@Mel-qr5ob
@Mel-qr5ob 3 года назад
Basically I now just associate doctors with prescribing medicine for children because any REAL issues beyond common colds they do absolutely nothing.
@jens8487
@jens8487 6 лет назад
Did I miss a video about the rheumatoid arthritis? :(
@haileyandaspoon
@haileyandaspoon 6 лет назад
+Jen S no you didn't. You will get one on Friday :)
@jens8487
@jens8487 6 лет назад
Hailey & a Spoon Ok! I’ve been slacking on watching videos (sorry!) and didn’t know if I missed it. Depression is doing weird things to me, including taking away my desire to watch RU-vid. :(
@haileyandaspoon
@haileyandaspoon 6 лет назад
+Jen S I am sorry sis. That is not good. Sending positive vibes your way. If I can help in anyway, let me know!
@allegri9cl
@allegri9cl 2 года назад
Thats great. I used to have eczema and all doctors gave me steroid and nothing helped so I googled and stopped gluten egg and it helped and cured eczema. Tome and again i would eat some egg or gluten and rashes would appear. Friends would tell me try eating you have to eat, but your instinct knows better. I never tested those allergy. I started having some stomach problem and i did endoscopy where doc asked me to take some gluten but it showed nothing and my eczema didnt appear so i started eating gluten and egg. Skins fine even a year later but having bloating diarrhoea. This time i will test allergy and do coeliac test. It would prob be more concerning if im not coeliac as idk what else it could be.
@dawnpratt4608
@dawnpratt4608 3 года назад
Cramps, joint pain
@reneolivo7281
@reneolivo7281 5 лет назад
I’m just curious... why would you even get fat from having celiac disease?
@haileyandaspoon
@haileyandaspoon 5 лет назад
Because when you have celiac and have been eating gluten, you aren't retaining any of the nutrition. So when your body starts to heal, it starts absorbing the food.
@reneolivo7281
@reneolivo7281 5 лет назад
Hailey & a Spoon ooooh. This scares me. I just found out that I am last week. I hope to not gain too much weight.
@haileyandaspoon
@haileyandaspoon 5 лет назад
Just watch what you eat and you will be fine!
@jamiehickey5626
@jamiehickey5626 3 года назад
Omg my antibodys were 100
@FireQueenMarblex
@FireQueenMarblex 5 лет назад
My health is detoriating fast and cant absorb anything and digest food at all alongside IBS, SIBO, Hpylori, anemia, abdominal cramps, loose bowels, extreme fatigue, nutritional deficiencies, heart paltipations, hair not growing, bad teeth, brittle bones aging so fast in mid 20s. This has been going on for 3 years and feel like it could be celiac! :/
@haileyandaspoon
@haileyandaspoon 4 года назад
GET TESTED!
@rses916
@rses916 3 года назад
wow update?
@Frank-it9kl
@Frank-it9kl 3 года назад
My GI doctor identified it immediately. You should've went straight to specialist.
@sweetsourandbratty7517
@sweetsourandbratty7517 3 года назад
I had an endoscopy
@juliagreene5650
@juliagreene5650 5 лет назад
I didnt get sick at all, the average number is like 8 and mines were 340 so I DEFINITELY had Celiac, Sadly there is no cure 😛
@haileyandaspoon
@haileyandaspoon 5 лет назад
Same lol
@edinacole6382
@edinacole6382 2 года назад
Google IS helpful. It may not provide all the information but it is incredibly helpful when you need to figure out something have nothing to start with.
@Vbnklll
@Vbnklll 2 года назад
Very very weak .. muscle weakness headache dizziness everything 2 years now... Alltså stomach pain daily . I had a very severe energy loss after eating pizza to call ambulance. I suffer from muscle weakness energy weakness almost two years now and i am not gluten free i eat practically everything very weak right now after eating spaghetti couple of hours ago and yesterday White spaghetti my tongue is burning my muscles of burning of very very weak gluten???
@leslieweiser5455
@leslieweiser5455 5 лет назад
🙏🏻
@haileyandaspoon
@haileyandaspoon 5 лет назад
❤️
@nancyanne9982
@nancyanne9982 2 года назад
Meeting Dr IGUDIA RU-vid channel was the beginning of a new life for me after using his herbs medication in curing my Coeliac disease.
@arayaviolin6421
@arayaviolin6421 3 года назад
I never got diagnosed until I was 14. I also suffered a long time. I was 80 pounds at 14 and was threatened to eat or I’d be out on a feeding tube. Turns out I was eating. I just wasn’t gaining weight because of the illness. I had to have a colonoscopy and endoscopy because the blood tests showed negative. Doctors are so clueless. They should help us before we resort to Google.
@abbylynne7730
@abbylynne7730 5 лет назад
I am 21 years old, I was diagnosed with celiac disease when I was 12. I have always had stomach problems. I throw up everyday, sometimes 3 times a day. Mostly in the mornings. I get horrible hives head too toe, my eyes swell, my lips swell, My throat swells, everything swells!!! I have a very bad nervous/anxiety problem. I’m always tired, I always have dark Circles around my eyes, my bones Ache, shortness of breath. Sharp shooting pains in my stomach, I always have Headaches. But yet I still continue to eat wheat. It’s very hard for me to change my diet, also gluten free things are very expensive. You think being sick everyday would help but it doesn’t . I’m so used to it . Does Anyone suffer from Severe hives ?
@haileyandaspoon
@haileyandaspoon 5 лет назад
I get hives when I am contaminated. I have severe side effects but not to the extent of yours! I hope you get relief soon!
@AliciaRodriguez-vz6ko
@AliciaRodriguez-vz6ko 5 лет назад
Abby Lynne A eso que usted está haciendo al no cuidarse es un suicidio. Y puede terminar en Cáncer al estómago esófago al hígado y al intestino.Le recomiendo que tome muy en serio su enfermedad y se cuide . El Señor le de sabiduría ,es mi deseo.
@ZenithAstrology
@ZenithAstrology 3 года назад
Me seveer hives the duck and I imagine that’s what shingles feels like but I didn’t even have chicken pox. The only relief is Epsom salt baths. With a straw and dipping the entire face under the water while plugging the eyes and nose. At this point, I’ve given up on scratching. Going anywhere is the worst! Because they don’t like it or an exiting thought
@ramataz
@ramataz 3 года назад
Anyone else get nose sores from glute
@ramataz
@ramataz 3 года назад
Gluten
@i_g9854
@i_g9854 6 лет назад
I was diagnosed when I was b/w 18-19
@haileyandaspoon
@haileyandaspoon 5 лет назад
Has it gotten easier finding gluten free food?
@taraschmidheini4674
@taraschmidheini4674 2 года назад
⭐⭐⭐⭐⭐⭐⭐⭐⭐⭐
@tasidasilva7897
@tasidasilva7897 6 лет назад
Going gluten free does not make you fat?? What kinda doctor is that. My mom has celiacs and she lost a lot of weight from going gluten free. Just make sure you don't eat too many gluten free breads or too much quinoa and you should be fine..
@haileyandaspoon
@haileyandaspoon 6 лет назад
It can when your body starts to heal and absorb nutrients.
@haileyandaspoon
@haileyandaspoon 6 лет назад
Exactly.
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