10 YEARS for a Celiac Diagnosis 😱  

I can relate. Took me 2 and a half years, and a lot of doctors saying it was nothing. Didn't help that my blood tests for celiac are normal... Got my diagnosis from biopsy and genetic testing. After a couple months of living gluten-free and getting to know more people with celiac, I definetly got a better sense of the just how important it is to bring awareness to the matter. It certainly helps in getting more people diagnosed and properly treated.

I just got diagnosed and I’m so thankful to have found your channel. Thank you

It took me years to realize something was very wrong in my gut. I'm so sorry you went through all that. And now I also know celiac has nothing to so with the vagus nerve.

Same with the doctors. I actually was in a wheelchair for two years and ended up with damaged stomach because of undiagnosed celiac disease. 😅 luckily finally got diagnosed now feel so good and back to working alot

This makes me mad. I had the same experience. Crazy low iron and other vitamin deficiencies, chronic severe migraines, and brain fog. Doctors told me to take iron supplements (which did nothing) and prescribed heavy, addictive migraine pain killers. At 44 I ASKED “could I be tested for celiac, please?” Sure enough my numbers were through the roof! I had the biopsy annnnd I’m celiac! I’ve been GF for 7 days with zero brain fog or migraines. 😢 I’m very grateful to know now, but I wish I knew earlier.

I went 66 yrs without a diagnosis and since I react to corn and my research showed that I they put cornsyrup like by products in the IV in the anesthesia but due to my symptoms and my DH Dermatitis Herpetiformis he just notated to treat me as though I am Celiac because I was afraid of the reaction to the anesthisea that I nearly didn't wake up from multiple times. So that's the closest thing I've got to a diagnosis along with my genetic testing as above state. Peter Osborne says HLA DQA1:05 is an allele for Celiac Disease and he is a molecular biologist with a Masters Degree in nutrition. He is one of less than 500 people in the world with such a degree.

After 14 years of dealing with vomiting and extreme fatigue my doc said i need to see a urologist for uti that is all I heard for 14 years i guess other doctors mimic the other doctor... i have lost so many jobs and never truly have insurance so i would have to go to er..this year has been hell i currenly have insurance but on the verge of losing my job due to calling out after waiting 4 months to see a urologist she was in shock i was there she said you have to tell your doctor it is gastrointestinal,I left crying because I feel horrible and I have to go back to work,I googled gastrointestinal and the first thing I see is gluten-free God put a light bulb in my head it is gluten 1 week without and I feel better i made an appointment for my shifty doctor and beg her for a test i will wash her feet i don't care i need a diagnosis to make sure,it has to happen quick I'm on the verge of losing my job house

I was going to the doctors previously for some years with migraines feeling tired continuously. Was told told I needed iron tablets which didn’t help me. So in early March I was having real upset tummy daily it was an awful time. Then eventually lots of blood test an stool tests, plus colonoscopys later it was confirmed I was celiac. Plus alcerative colitis. I couldn’t leave my home for several weeks worst time ever 😩

Multiple doctors. It took a holistic nutritionist to look at the same tests the doctors did. She said I could have Celiac!

I had a very similar experience, it's such a shame that there doesn't seem to be a lot of knowledge with many doctors about the more diffuse symptoms. After years of struggling with many different symptoms I finally was diagnosed with marsh type 3b - bit shame when I could have been diagnosed so much sooner!

It took me years to realize something was very wrong in my gut. I'm so sorry you went through all that.

I’m somewhere in the middle here. My bloods haven’t shown anything, yet cutting gluten has made improvements to my migraines, an upper body rash and lower limb swelling. However, still struggling with some real gut issues. Now waiting on an appointment for a gastroenterologist to see me and see if he will run further tests. I’m anxious to rule in or out issues with gluten and how far they go as I don’t want to cause any more damage to my stomach if gluten is irritating it to a large degree. Seems the doctors here don’t really get that 😏. I bet if they were struggling daily for years, they too would want answers, but don’t seem to be as forthcoming for me, sadly!

Took 59 years for me!! That should should scare us away from the medical field…

I got diagnosed just 3 days ago after struggling for almost 2 years. It was always written of as anxiety and they just gave me oxazepam. I still am in a lot of pain due to acid reflux. But I finally know what the cause is. My iron was always very low too so that could be a cause too? And do you maybe have tips to heal your gut from all the damage?

This happened to me. I had a damn neurologist hand me a pamphlet on meditation for migraines and sent me out the door. (I also meditate for religious reasons so im familar with it. It didnt help my headaches.) I got to the point i was losing my vision from my migraines and almost passed out on numerous occasions. I had to stop driving because of it. I had chronic migraines for 6 years that just got worse and worse and eventually lasted every single day. I would wake up and go to sleep with a migraine and unbearble joint pain. I eventually had to travel out of town because NO DOCTOR WOULD LISTEN. i had two SHOE BOXES full of different mirgaine medicine. They would rather push pills down your throat than do any type of damn testing. It goes SO UNDERDIAGNOSED IN WOMEN. AND ITS MOST COMMON IN WOMEN. now i have life long damage that cant be reversed because no doctor would listen to me in time. I almost died from malnutrition. Celiac is SO dangerous. And nobody understands that.

This is sadly the case with most of us. Doctors either not knowing or recognizing the signs/symptoms of Celiac or the doctors (like gastroenterologists or hematologists) that should know full well Celiac symptoms when they see them and not testing for it. It is both sad and infuriating!! By the way, almost 6 years of distress, pain, sadness and frustration before I finally got a diagnosis. It really should not be that way!!

Here in Italy I got diagnosed in 3 months, I had never thought I could be celiac

I can totally relate. By the way there are more genes than just HLA DQ2 AND 8. I have Celiac Disease and I have HLA DQA1:05

I went through the same, til I figured it out for myself.

Thank you for telling us this. I thought it was just me having similar experiences. Since diagnosis of type 2 diabetes. My GI issues had gotten worse and so did the care of the doctors or lack of. It seems in general doctors are mostly doing the same and throwing meds at you. Without an explanation.

gluten and ALL grains are the problem yep. but 1 truth you can eat red meat vitamin b and iron but it can create gout.

Isn’t this the truth ..