▷ Celiac diagnosis after 7 years gluten free: my symptoms + genetic testing results |My Celiac Story

Gluten-Free » Celiac diagnosis after 7 years gluten free: my symptoms + genetic testing results |My Celiac Story

Discover my journey of being diagnosed with Celiac disease after 7 years gluten free. Learn about my symptoms and genetic testing results.

A Surprising Celiac Diagnosis: Uncovering the Truth After Years of Living Gluten-Free

After living gluten-free for 10 years, I was finally diagnosed with celiac disease. In this video, the creator shares their celiac story and journey to getting their diagnosis, including the results from genetic testing. Living a gluten-free lifestyle can be challenging, and getting diagnosed with celiac disease after years of struggles was a game-changer. By sharing their story, the creator hopes to offer answers and support to others going through a similar experience.

The video covers how it all started with self-diagnosis, incorporating sourdough into the diet, experiencing joint pain, thyroid nodules, fatigue, and iron deficiency. It then delves into the process of finally going to a doctor, undergoing a gluten challenge, testing, and an upper GI, and ultimately receiving a diagnosis through genetic testing. This personal account sheds light on the journey of living with and managing celiac disease.

Unraveling the Mystery: My Journey to a Belated Celiac Diagnosis

if you are new to this channel you just found this video and you have no idea who I am my name is Melissa I am an expat originally from America and currently living in Shanghai I have three kids wonderful husband and this channel is typically Vlogs of my life and uh School school I am in school to.

Be a librarian and yeah so I’m glad you’re here I wanted to put this video on the internet because when I was looking for my Celiac you know information about Celiac I and and going through my diagnosis I really really wanted to find other people that were going through the same thing I was or that may have a.

Similar story to me and I’ll be honest I just really didn’t find it so I’m hopeful that my story can maybe help help someone else that is going through this right now or if it doesn’t help you maybe you just find camaraderie in the fact that I also went through some of these same things um we’re going to go back about 10 years 10 11 years uh 2013.

Is when I first started having symptoms and really it was just bloating um and but no like gastrointestinal stuff I didn’t hurt I never had pain I never had you know diarrhea or anything like that it was literally just my belly was distended and it looked like I was pregnant again at this point I had already had three babies all via.

C-section and if you were doing research on Celiac you know that C-sections tend to be a trigger sometimes for uh celiac disease you know showing itself and I had three of them so it was no surprise that I started having some issues at this point though I did not have insurance and so my first mistake was not going to the doctor and doing just a.

Lot of self- diagnosis hindsights 2020 you know and at the time I was like oh man I don’t have the you know the money to go to a doctor but now I’m like why didn’t I go to a doctor I decided to just take gluten out I had had a friend who had also been diagnosed Celiac about a year prior and it was just nice to have.

Information thrown at me and so I knew from some of my symptoms like the brain fog and the distended belly that I I probably had an issue with gluten so I took it out and I thought oh it’ll be fine you know and those symptoms stopped right I mean I I was sad cuz I really love beer and I ate a lot of bread as a mom with little babies I was just like.

Bread shove it in my mouth and you’re like okay I’m full we’re good it wasn’t it was just it was just an easy thing right so 2014 we moved to Germany and it was wonderful Germany had a lot of options for me there I was very strict gluten-free I would even say somewhat Celiac GL like strict gluten-free my kids were also gluten-free at the time.

They were young and I just kept everybody gluten-free at home and it made it very very easy for me to sustain that very very strict gluten-free lifestyle so fast forward a couple years we are back in the United States and I decide that I really really want to try to eat sourdough and so I actually do it a couple different times at that point.

In my life I was homeschooling my kids and I was very much into like the you know homesteady type stuff and wanted to make my own sourdough I wanted to be able to to be in that and this is like pre pandemic right this is I was having I had like my own starter and and so I tried it unfortunately I was still having severe.

Reactions and I could not could not eat the sour dough that I made so I played around with doing a gluten-free sourdough it did not go well it was just a lot of steps so in 2017 we moved to Fort Worth Texas and I was determined to have sourdough I just I just really really wanted to eat sour sough and I think for me if I was able to eat.

Sourdough then obviously I didn’t have celiac disease I just had a gluten intolerance and I’ve healed my gut and blah blah blah so I started eating sourdough all over the city trying to find one and I did I actually found quite a few that were tolerable to me my symptoms had subsided as far as I could tell it was those immediate symptoms of.

Fatigue and brain fog I was able to eat this bread that you know had the gluten pre-digested for you right so for me that immediate reaction wasn’t happening and we had also gone vegan a couple years prior and I really do think that that helped heal my gut as well I just was eating a lot cleaner and a lot more vegetables a lot more fiber and I I.

Really do think that had a positive impact on my just digestion in general but I thought okay you know I not be able to eat gluten but I can do sourdough we’re good like I don’t have Celiac no no no well this is when about 2019 is when things started to go downhill it was probably 2 to three years after I had.

Really started incorporating zardo back into my diet probably good two years I’d say good two years and I think looking back I probably had these symptoms even before this point but I just ignored them brain fog feeling like I was hit by a truck I mean I’ll never forget I I remember I had started eating sourdough.

And I just felt like I was I’d wake up in the morning and I would tell my husband BR like I just feel like I got hit by a truck I don’t know what my deal is oh it just hurts everything hurts and so yeah I just started having really really bad joint pain especially in my hands and my hips and it was equal on both sides I thought oh my gosh I have.

Rator arthritis holy crap like what am I going to do this is crazy it’s just all the symptoms were there and yeah I I I don’t know it’s hard it’s hard to talk about it because it’s like I look back down I’m like but had those symptoms started getting thyroid nodules things I had never had before in my life and then the one that was the worst was.

Just the debilitating fatigue it was really really bad to where I could maybe do one thing a day and then I was just wiped out so now it’s 2022 we’ve moved to China and I am eating a lot of gluten like a lot and the fatigue is still there it’s horrible but moving here was just really difficult on my body in general for stress reasons but then also.

There’s soy sauce in everything there’s there’s gluten in everything I feel like here if it’s not meat it’s gluten and so I really had a hard time um just keeping it completely out of my diet and then on top of that I was eating sourdough still found sourdough here found you know I even have a I have a video on this channel that has me going around trying.

Bread trying to find the best baguette in Shanghai yeah guys come on like I was in such denial it was really bad but you know I didn’t think I was having that bad of a reaction so cuz it wasn’t immediate but the fatigue the joint pain the thyroid nodals all those things weren’t going away so then I finally.

Went to the doctorally have insurance I was able to go to the doctor yay and found a really amazing general practitioner that she just did all the blood work she was like okay let’s find out what’s going on with you you’ve got these symptoms we don’t know what’s happening here so she didn’t do blood work for celiac at that point but she.

Did you know we had ra Ms um gosh all of the basically a full autoimmune panel done then a full you know vitamins minerals iron blood work all that stuff done and it came back that I had almost off the charts low fertin which if you’re not familiar with fertin fertin is actually where your iron is stored in your body body it’s.

Like your iron stores and so my iron level was low but it was within range but then my ferien was just depleted and she goes that’s where your fatigue is coming in that could also be why you have joint pain we don’t know yet but the this is this is it like this is definitely a sign of what we need to do so we decided to put me on iron had iron.

Supplements for three months and within those 3 months I had maybe it was four was four months actually and within those four months I had my blood tested twice the first time I it was after the first two months my iron had and my fertin had increased but just a little bit it wasn’t enough to say oh okay yeah you’re good now you’re you know you’re.

Back up to what you need to be and go on with your life now the fatigue was diminishing and that was amazing I was like finally my fatigue is going away but I still had joint pain so two more months go by still on the supplements very very strong iron supplements and we didn’t want to do more than that because it’s not not healthy for you to do that.

So go back in for blood work vertin decreased decreased like on iron supplements it decreased and the doctor is like okay yeah that’s not normal and we need to send you to a gastro ologist so yes I went to a gastroenterologist I went to see Dr Aiko she will never see this video but thank you so much Dr Aiko.

You’re amazing she was the first doctor to like really I felt like she understood me and knew what to do so we decided since I had already been gluten-free for so many years I wasn’t eating enough gluten she said to say okay yeah that’s going to have a you know result on your blood work or whatever we wanted to do an upper GI we.

Need to go and take some samples and all that stuff I was like okay she goes so you need to eat gluten for 2 weeks and looking back now honestly that was not long enough I really probably should have done six weeks but physically I don’t think I would have been able to actually do six weeks because at the end of the two weeks I was literally eating.

Like one croissant cant going croissant a day and and um or just some bread every day and I was spiking a fever after every single time that I would eat and I just I was so inflamed I was so just tired and I was functioning but honestly I don’t know how like it was looking back like man I was out of it I went in for my Upp gii and my blood work.

And unfortunately the lab messed up my blood work I still don’t understand fully what happened but my doctor was really really really pissed and I obviously was not going to go back on gluten again she said that we would take blood again in a few weeks but that it really was not going to.

Be a valid you know blood sample just due to the fact that I would have already been off of gluten however my uh samples they came back my villa were fine is what they said I didn’t have any uh Celiac you know markers like in my gut area I don’t know how you want to say that but because I had been spiking a.

Fever because of my joint pain and because of some other things my doctor just she would not let it go she was like this isn’t right I really she really felt that because I had been off of gluten for almost 10 years that was really really going to mess everything up and she wanted to do genetic testing on me I went in after being off of.

Gluten even I was feeling so much better I decided to go completely gluten-free from at after I had been on gluten for my challenge went completely gluten-free and I’ll tell you about that in a minute but basically went back in for my genetic testing and my genetic testing came back and I don’t want to mess this up but it came back that uh.

You can have well I guess you can have more than one but there’s three main markers it’s the DQ uh 2 dq8 and then there’s a dq2.5 and the dq2.5 is actually only 133% of the American population have this genetic marker and I did I had it so I have it I have it so that means that my chances of having Celiac are so.

Much greater than most of the population in America and with all of my symptoms and with everything that was going on my doctor she said you know it’s unfortunate because of the samples I can’t give you like I can’t say here’s your stamp of approv like here’s your stamp of celiac she said unfortunately I can’t give you that but I am 99.9% sure.

That you do have Celiac and that you need to live a Celiac lifestyle so here you have it I have celiac now since going completely off of gluten it has been amazing every week I feel better and better and better it is uh mid-February now it’s actually Valentine’s Day today it’s been about I.

Guess a month and a half to two months since I’ve been completely off of gluten and my joint pain is completely gone my energy levels are just coming back more and more every single day it’s crazy I actually go in next week to have um a another ultrasound done on my uh thyroid and just to make sure everything is not growing or getting bigger but then I.

Also am going to go in in a few weeks and have more blood work done for my iron levels and just see where they’re at my iron INF fertin but I can tell you right now I know that they are increasing by simply removing the gluten from my diet it’s allowing my body to absorb the iron that I am ingesting which I ingest a lot of iron actually.

Eat a lot of greens and and um just yummy stuff tofu just know that if you have any question that you might have Celiac do not stop eating gluten go to a doctor go to the doctor first if I can I tell you to do one thing please do that but if you have any questions please put them in the comments below I would love to answer them.

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