My Celiac Disease Story | Diagnosis | Overlooked Symptoms

Sharing my story on how I found out I have Celiac Disease.
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[@LifewithTheHolleys2023]

I have joint pain, muscles pain, anemia, brain fog, sometimes numbness, vitamin D deficiency and eczema. I don't have much stomach pain except after eating certain breads and pastas like you. Thank you for this story, I'm going to push to be tested for celiac disease.

[@MotivationCity]

Same. Glad I found this because thr numbness freaked me out

[@nataliegist2014]

Add fever and fatigue.

[@wendyhannan2454]

Yes all the above and I was diagnosed with celiac disease, the tummy pain and bloating is the worst along with fatigue. Gluten free diet is the only way for me. If I get glutened its awful and takes weeks to feel better . Be very careful when eating out. They may say GF in restaurants, it’s not always so, and they don’t take into consideration the cross contamination. It’s a hard disease to live with, you have to be methodical. Good luck to every one who’s celiac, or being tested for celiac disease.

[@Gesundheit888]

I just don't understand why people would not try a total elimination diet, such as the carnivore. You can always then add one food at a time and see exactly what is doing what in your body. Try it for a months.

[@wrenfan]

@@Gesundheit888 Exactly. If I thought I had undiagnosed Celiac the very first thing I would do is go gluten free to see if anything changes. If it does , then I would either stay GF and get on with my life or if I had to know for sure go back consuming gluten to get a diagnosis.

[@msmellowmood84]

This sounds exactly like my journey. Spent decades of my life at rheumies and just thinking this was what I would live with forever… I tried gluten free keto for a month. I hadn’t ever felt normal or no pain and I was shook. Moved to a new city, and the GI specialist I saw ran the gene panel to see if I could have Celiac. And it came back positive. Enter in the light at the end of the tunnel. 🙌🏽

[@samantha7576]

I like others, appreciate your story! I was recently diagnosed a few weeks ago. Over the entire month of May I was going to dr’s visits all the time. It lead me to being diagnosed with anemia, iron deficiency, vitamin d deficiency, malabsorption, and celiac disease! Boy is it frustrating trying to explain to friends why you can’t just get up and spontaneously go out to eat anymore like before being diagnosed. My vitamin D deficiency is so severe that I take 50,000 IU’s once a week! My dr was also so shocked at how I thought how I felt was normal.

[@Lokey21]

So sorry you had to suffer so long, but very excited that someone was able to help you. It’s getting really scary with this doctors… No one is really listening or they don’t know how to help. Again I’m so happy for you 😊 Good luck ❤

[@JLCME]

Currently on a Holter monitor for palpitations but I always thought it was GI related. I also have knee pain (in my 30s). Have been dealing with reflux for 7 years and just found out I have celiac! Appreciate hearing your story.

[@Mmk5353]

thank you for sharing! ive found to have some celiac symptoms. i have an endoscopy in a couple weeks hopefully I get some answers!

[@karavanderwiel2939]

I had debilitating pain for most of my life and multiple tendon tears. We were buying land to build a handicapped accessible house because it was so bad. I had an upper GI for something else and they found celiac. That was 2 years ago. My life has dramatically changed for the better but so much damage had already been done. I’m glad you’ve kept fighting and finding answers earlier.

[@kathys9173]

Good for you for taking charge of your own health and figuring things out early in your life :) The food changes are hard, but not as hard as the unknown struggles of finding answers. Good luck to you!!

[@beealbert5107]

Thank you for the information...

[@tubie33]

I have been ill for 15-20 years now. Celiac was discovered 7 years ago. After blood test came back negative years and years ago...7 years ago they did another test. they took a biopt out of the small intestines. Bingo. It came back positive. I was already eating gluten free but still had symptoms. they discovered I had bad Vitamine D levels. And in the years after I found out I can't eat dairy products either. Now I am going to a fodmap dietist and figured out onion is a bad bad trigger for me too. So I am still on the way of finding out how to deal with food. I spoke to a waitress in a restaurant she asked me how allergic I was. If i was reacting bad to derivatives too. I had NEVER heard of that. And in my country all sweeteners in glucose fructose are probably made out of Wheat. While in USA it is made most out of Corn. And the manifacturer is NOT obliged to put that on the ingredients list. And people over here don't all take it all that serious. I get asked daily if I can eat potatoes.

[@velocitygirl8551]

I’m so proud of you 💪♥️😘

[@lorenlash9174]

I appreciate you sharing your story. As I embark on my own path to healing, I am finding so little information out there about people's individual experiences with celiac or gluten intolerance. It most certainly seems that most people are struggling to figure out what is happening with their bodies, and it saddens me to think of those without healthcare that never have a fighting chance of discovering the truth and living a life of misery. Likewise, the fact that medical doctors have virtually zero studies in nutrition and how it supports the functions within the body makes absolutely no sense to me. It's like being a race car driver and not knowing that gasoline is what gives the car the energy to move or that the oil lubricates the pistons in the engine.

[@thecrookhumbers1009]

Thanks for watching! I feel like celiac is so widely undiagnosed. I hope over time more people are able to find their answers. I wish you all the best as you heal. It’s a hard life shift, but we’re all in this together!

[@saranewman9703]

What is the cure for celiacs?

[@lorenlash9174]

@@saranewman9703 I don't know the "cure" or if there is one, but testing to discover what your body is not tolerating is the starting point. Then you adapt your behavior to not expose yourself to those things. In the case of a celiac patient, that would definitely be to not eat or even get a whiff of wheat gluten.

[@Jellycow1]

I have the EXACT same symptoms as you oh my god. I also had joint pains as a kid and was told they were growing pains as well!!!! I've been tested for everything except celiac

[@Mnedho_Vision2050]

thanks for sharing your story and sorry about the pain you suffer due to lack of Doctor's knowledge regarding Celiac. There are still hundred or thousands of people still with Celiac but UN-diagonised because doctor not aware of this disease.

[@TellaProductions]

Thank you so much for this video. You and I have all the same symptoms so this video was so validating that I'm not crazy and that my symptoms are valid. I am awaiting my blood test results and preparing myself for my life to be changed forever. Soooooooo happy to hear that a year after your diagnosis and you are feeling so much better. Thank you for giving me hope.

[@thecrookhumbers1009]

A big life change for sure, but SO worth it to feel better! We're in this together!!

[@Anchorlesss]

I’m waiting to receive my test and hoping for answers. I am constantly nauseous and so tired, joint pain as well, throwing up now, no hunger for any food because I know how they make me feel. I even have ulcers in my mouth now. I have just gone down hill so fast lately. I ordered a test online with my own money because I don’t want to wait to try and convince the doctors. So once I get the results I can take it to my doctor.

[@hemantpahuja4114]

What were the results of your blood test? Was it celiac disease ?

[@ratkid4560]

I have an amazing gp covering my transition, and she does so much more of a thorough job than my normal gp. She suggested I get tested for celiac's (waiting a while as I need to get my iron rechecked) and I was so confused, because surely I'd know, right? Turns out I have loads of the symptoms, and she guessed it based off my iron deficiency anemia and a few questions. She's incredible, hopefully I don't (many of my few foods I can actually eat have gluten) but it's nice hearing that other people have it without as obvious stomach issues

[@thecrookhumbers1009]

That is wonderful you have found such a great doctor to run the right tests for you! It’s refreshing to have a doctor who understands the many different symptoms celiac can cause.

[@user-sd1qr5il6k]

I have had all of your symptoms as well as others. I'm sorry you went through such a long journey. I actually went over 60 yrs without a proper diagnosis. Sheesh!!.....right?! Well hugs! I prefer Functional Medicine Practitioners.

[@thenerdgirl1]

This is a very relatable story. I hate to dunk on doctors but they're the worst at digging deep. I'm getting convinced it's because this is just a job to them and they don't really care if you get better or not. And celiac isn't that rare. It's inexcusable for them to blank on something so harmful in my opinion. I don't trust doctors at all and they've never given me a reason to trust them.

[@annberlin5811]

I spent 40 years with celiac without knowing. It ruined my life

[@jackiecoupland3620]

What were symptom symptoms?

[@annberlin5811]

​​​@@jackiecoupland3620stomach ache always asthma gas brain fog dryness under eyes extreme fatigue food not digested in poo rashes metal taste bad teeth early menopause hair turned white brittle nails. IT ALL WENT AWAY WHEN I STOPPED EATING WHEAT

[@user-es9py3ix2y]

I was in my 50s. It was a fluck how it got discovered. As a baby, I was diagnosed with IBS. I wish I had never found out.

[@EmpireOfRealEstate]

Wow this is crazy. I had almost all of your symptoms. The doctors did blood work, full panel and everything came back great. However before the test I cut all grains out and went to meat and vegetables for 2 weeks and my joint pain disappeared. The doctor said celiac would show negative if I cut all gluten out. So up until this point I’ve been on meat and vegetables diet and all the other symptoms haven’t come back. The extreme knee joint pain went away in just a couple days.

[@thecrookhumbers1009]

It is wild how one thing can throw everything off! Glad your joint pain went away!

[@PinkFlowers365]

ty

[@AppleAllen]

" I'm 25 and my diagnosis took sooo long " LoL. Say that to 50 and 60 year olds just getting diagnosed.

[@thestu7066]

49 & can trace symptoms back to when i was 7!

[@millysalcedo4484]

It is not a competition....

[@Pokenoontje]

I have had the exact same symptoms and blood test results. I am waiting for a biopsy at the moment and wondering why with all my symptoms i have never been tested. I do have a lot of bowel issues as well. So really no excuse i also had a c.difficile infection. This video was very helpfull and insightfull thank you!

[@Tahereh_Shahidi]

Hi and Thanx for this informative video Did you have muscle stiffness before getting diagnosed? How long did it take for those joint pains to go away ? TIA

[@trueblonde89]

I had to ditch all grains.. i did a gi map, but I was gluten free, but results showed my inflammation with anti gliadin.

[@kimberlyferrier1312]

I’ve been gluten free for about two years. I now get food specific joint pain. Trying to figure this out. Pain in hips is intense but goes away if I fast or eat only greens.

[@hayleyrichardson3343]

I’ve had a auto immune disease for over 20 years then I was diagnosed with celiac disease with 3 autoimmune diseases xx

[@YarkoFFXI]

Hello! Thank you very much for having shared your experience! I have a favour to ask. I've been recently diagnosed with celiac as well and have also found to be deficient in iron, vitamin D and zinc. I had to ask and insist to have my zinc tested because I read it was a possible deficiency but nobody thought about it, I was losing hair and getting sick all the time even months after going gluten free. I have been feeling so much better since I've been taking zinc as a supplement. Now I'm left wondering if there are other possible deficiencies I might have and need to be working on, so I was wondering if you could tell me everything that that holistic doctor of yours had you tested for? Thank you very much

[@thecrookhumbers1009]

Vitamin D, B12, zinc, and iron are the big ones! My dr. also tested my thyroid and checked inflammatory markers.

[@YarkoFFXI]

@@thecrookhumbers1009 thanks a lot for your reply! Sounds like I had all deficiencies tested then. Which are the inflammatory markers? I had C-reactive protein tested, negative, are there other markers? Did you have them positive? Sorry for all the questions, the thing is I've been living with chronic tendinitis / pain in my wrists for the last 5 years. Since 2 years it's gotten so bad that I can't work anymore or use computers at all and phones very sparingly. Unfortunately it doesn't seem to get better with the GFdiet, which I've been following for 4 months now. Not sure if this problem is related to the celiac disease since it started due to overuse and it's a pain that is always there and never moved position (so it doesn't have the characteristics of rheumatic pains). I'm still interested in taking all the tests that could shed some light on this problem because doctors have no clue what to do 🙄. Thanks

[@hotchocolate7681]

My joint pain was so bad I was limping my knees hurt and my ankles I thought it was authoritis since I'm getting older but I went in for liver test and something show I needed blood work and my # ars high I'm 2 wks in no gluten food no joint pain

[@hayleyrichardson3343]

I couldn’t sleep and bowl problems with tummy ache and sickly xxx

[@thegreenhornet7749]

May I ask, the supplements that you said you were on to help with celiac, were those something that you can find at health food stores or was it stuff your doc has to prescribe?

[@thecrookhumbers1009]

My doctor checked all of my levels through bloodwork and recommended specific brands to me as well as the doses I needed based on how low I was in in certain vitamins. With celiac it's typical to be low in B12, vitamin D, and zinc, but everyone's needs are different. I can go into more detail on what exactly I take in a future video if that would be helpful! The ones I take I either buy directly from my doctor's office or online.

[@thegreenhornet7749]

@@thecrookhumbers1009 Thank you so much for responding 😀

[@hotchocolate7681]

I never had diarrhea sometimes bloating

[@tammyhenson7295]

I have noticed when i eat alot of bread, noodles, sausage gravy, beer...I get really stopped up and bloated--and cant go #2--To the point I wish for death. Also get break outs what the docs call pseudo placulitis barbotos (how ever its spelled) on my scalp. Just found out it runs in the family and dad wants me to get tested...almost 50 years old by the way, this crap started about 5 years ago.

[@thecrookhumbers1009]

That does not sound fun!! Celiac can be triggered at any point in life if you have the gene for it. Wouldn’t hurt to get tested! Hope you get answers soon and start feeling better!

[@jonnyhonda]

I wonder did it happen straight after an antibiotic like me

[@Butterfly-zs2pc]

Celiac and Hashimoto's Thyroiditis seem to go undiagnoised quite a bit, this story seems to repeat itself alot! It's awful! The damage that occurs from both of these is extensive. More has to be done to make people aware, it's not good enough !

[@VickyCacchioli]

What was your celiac score? I was tested 2 years ago and got a weak positive of 8.33, but the doctor says it's negative. However, at the time I was on a mostly gluten free diet and wasn't advised on how long I had to stick to a gluten diet before testing. So now I'm being tested again in a few weeks to see. I'm only a few days in and I have symptoms already, mostly I get headaches and feel dizzy, heartburn and sometimes bloating. I also have Hashimoto's Thyroiditis and PCOS and experience terrible fatigue and joint/muscle pain that you described, so I'm wondering if the gluten is causing this or something else. I tested negative when I went to the rhumatologist.

[@thecrookhumbers1009]

My TTG was over 250 at diagnosis. Hopefully your results will be more accurate this time around since you've been eating gluten, even though it is no fun going through all of those symptoms again!

[@VickyCacchioli]

@@thecrookhumbers1009 Thanks! Do you know how long I should wait until tested again? Google says 6+ weeks, yet when I spoke to an allergist he said 10-14 days, but that seems too short a time to me.

[@thecrookhumbers1009]

@@VickyCacchioli The Dr. who is ordering your bloodwork should be able to give you a good answer. Usually it takes a good amount of time on a gluten full diet for an accurate result to show up in blood tests. I would also consider (if you haven't already) asking your dr. about getting an endoscopy which is basically the gold standard of getting an official celiac diagnosis. With that, I had to be eating gluten for about 7-10 days prior.

[@VickyCacchioli]

@@thecrookhumbers1009 thanks, I shall ask my doctor at our next follow up in 3 weeks. I'm not keen on getting an endoscopy until I get the results, as it looks to be pretty invasive, but I guess the doctor can advise on that.

[@jakesanin1]

I have gluten intolerance, I have lots of enxiety I am wondering if anyone got it too

[@thislittlethingcalledlifea8586]

Yes! I understand completely what you mean. Anxiety sucks....

[@YarkoFFXI]

I have been diagnosed with celiac disease 4 months ago and last year + up to two months ago I was going through some very deep depression and anxiety. It's going a lot better now.

[@jadeandrea2540]

I know this is a bit late but do you eat rice.I can cut out mostly everything else but rice. So I was wondering if the minuscule amount of gluten in rice affects you. Thanks in Advance

[@thecrookhumbers1009]

Rice is definitely a staple in my diet and is 100% naturally gluten free and celiac safe!

[@hotchocolate7681]

What kind of supplement do you take

[@jujubunnybea]

I would like to know this also 😁😊

[@amarrookie1097]

What supplements you are taking

[@jujubunnybea]

following

[@eduekhaya8727]

Hard to find a doctor that is not lazy

[@DeionHarris]

i wish the music wasnt on

[@carltonsamuels268]

Thank you for this video I have been going through hell for the past 8 years, I have had heart failure because of being anemic , I now have osteomalacia , I have been to a lot of doctors but none diagnosed this, I found out myself thanks to Google

[@suzannewhittaker2280]

Should be writing to those other two doctors and give them a wake up call. They shouldn’t be doctors. That is disgusting.

[@hayleyrichardson3343]

The gluten free bread is awful xx

[@velocitygirl8551]

I hate doctors.