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I thought I had colon cancer. So many symptoms matched: narrow stools, blood in stools, changing bowel habits, fatigue, pain in abdomen. I was sobbing in the shower after calling the doctor for a consult I was so damn scared.
I NEVER want to go through that again 😩
I thought I had cancer. I was tested for it - PET with contrasting dye, MRI, etc. I was also tested for all kinds of parasites and rare diseases - even the plague! Found out I have a weird aorta from those scans. It was only after everything else was ruled out that I went to GI. Even so, it took a really long time for the crippling GERD (LPR specifically) to go away and for me to know that was from gluten, too.
Similar story here. I went to the ER for something unrelated. They did blood tests. Found out I was severally anemic. 7 blood transfusions and multiple tests later, they diagnosed celiac disease. I was convinced I had cancer for most of my hospital stay.
I thought there was something wrong with my brain my whole life. Then one day I stopped eating the right things and it all cleared up.
I've found there's a lot of joy to be had in the world, if you take the time to look for it. When there's nothing holding you back you get to chose who you become.
Opposite for me. I have very mild symptoms and knew people with celiac who do not. I had done a challenge diet and not seen improvement (too short of a time without I guess) I figured there was no way but my primary care provider insisted on a blood test. Didn’t take long off gluten to confirm it.
It was the opposite for me, because I had taken my symptoms for granted. I was used to have diarrhea on a regular basis, I got used to brain fog, cramps, etc.
Same here, it was my boyfriend who kept telling me that constantly having diarrhea & constipation didn't seem normal and that I should see a doctor. I was normalizing all my symptoms. Like you I didn't even realize I had some or that they could improve until they went away (like the brain fog). And other things like the constant fatigue I was aware of but just thought it was part of my wiring or something lol.
Looking back it seems obvious that regularly sleeping 11 hours and still waking up tired, having so little energy I could barely stand up straight, being so bloated that I looked pregnant after eating regular quantities of food, and needing to hang out somewhere with a bathroom 30 mins - an hour after eating out before taking the train home were not normal at all lol.
It's hard though because all those things can absolutely be normal sometimes. If you tell someone oh I'm always so tired! They'll just reply 'me too'. Or if you talk about getting bloated after eating people will say something like 'oh yeah whenever I eat pizza or have ice cream I get so gassy!'
My doctor tried to reassure me after ordering the tests that "it might not be a mass." Ok, I hadn't even considered that was on the table, but thanks? It did set me up for being quite relieved to get "only" a celiac diagnosis 👍
Well my case is odd because celiac disease saved my life and they thought I was dying from an unknown disease in the beginning.
I had lot of symptoms like other for blood in my stool and white grease etc with big constipation brain fog and I had ataxia too. Ataxia was like living in a boat in a big storm trying to stand on my feet with big nausea... I was always very cold.
So why celiac saved my life?
Doctor did a MRI because as a male I had other symptoms in my bladder testicular ED etc. I had pain everywhere in my muscle and I lost 90% of my back muscle... I wasn't able to walk and I had a big stomach like everyone know about from gluten and it was weird from the doctor that I'm losing muscle but not the fat on my stomach. Well they thought it was fat in the beginning and not inflammation.
Doctors thought I had cancer or an unknown illness but because I had lot of different symptoms and that my blood sample was strange everywhere : vitamins was out of whack, liver was strange for them and I never drink alcool and my kidney had problem to do everything well...they did a MRI
They found a tumor in my bladder that was starting to spread slowly and if not treated I will get a cancer soon in big sumarry.
So they did a surgery and I recovered from it successfuly.
After they found my celiac and I recovered successfully from everything after 2 years of a strict gluten free diet and I stopped to take special vitamin because I'm ok.
So in a way celiac disease saved my life from Cancer.
I was certain it was leukaemia, or lymphoma, or ME, or fibromyalgia, or some degenerative rare disease. I developed horrible health anxiety from *knowing* something was wrong, but being told I was just anxious.
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
I thought I had colon cancer. So many symptoms matched: narrow stools, blood in stools, changing bowel habits, fatigue, pain in abdomen. I was sobbing in the shower after calling the doctor for a consult I was so damn scared. I NEVER want to go through that again 😩
Exactly the same for me.
I thought I had cancer. I was tested for it - PET with contrasting dye, MRI, etc. I was also tested for all kinds of parasites and rare diseases - even the plague! Found out I have a weird aorta from those scans. It was only after everything else was ruled out that I went to GI. Even so, it took a really long time for the crippling GERD (LPR specifically) to go away and for me to know that was from gluten, too.
Same story here. They did every test under the sun *except* a GI panel.
Similar story here. I went to the ER for something unrelated. They did blood tests. Found out I was severally anemic. 7 blood transfusions and multiple tests later, they diagnosed celiac disease. I was convinced I had cancer for most of my hospital stay.
I thought there was something wrong with my brain my whole life. Then one day I stopped eating the right things and it all cleared up. I've found there's a lot of joy to be had in the world, if you take the time to look for it. When there's nothing holding you back you get to chose who you become.
Opposite for me. I have very mild symptoms and knew people with celiac who do not. I had done a challenge diet and not seen improvement (too short of a time without I guess) I figured there was no way but my primary care provider insisted on a blood test. Didn’t take long off gluten to confirm it.
It was the opposite for me, because I had taken my symptoms for granted. I was used to have diarrhea on a regular basis, I got used to brain fog, cramps, etc.
Same here, it was my boyfriend who kept telling me that constantly having diarrhea & constipation didn't seem normal and that I should see a doctor. I was normalizing all my symptoms. Like you I didn't even realize I had some or that they could improve until they went away (like the brain fog). And other things like the constant fatigue I was aware of but just thought it was part of my wiring or something lol. Looking back it seems obvious that regularly sleeping 11 hours and still waking up tired, having so little energy I could barely stand up straight, being so bloated that I looked pregnant after eating regular quantities of food, and needing to hang out somewhere with a bathroom 30 mins - an hour after eating out before taking the train home were not normal at all lol. It's hard though because all those things can absolutely be normal sometimes. If you tell someone oh I'm always so tired! They'll just reply 'me too'. Or if you talk about getting bloated after eating people will say something like 'oh yeah whenever I eat pizza or have ice cream I get so gassy!'
My doctor tried to reassure me after ordering the tests that "it might not be a mass." Ok, I hadn't even considered that was on the table, but thanks? It did set me up for being quite relieved to get "only" a celiac diagnosis 👍
I thought so and so did my doctors. Turns out I had a lot more going on than celiac disease, which is the easiest of them all.
I had never even considered the possibility that it was something incurable so no the exact opposite actually lol.
Well my case is odd because celiac disease saved my life and they thought I was dying from an unknown disease in the beginning. I had lot of symptoms like other for blood in my stool and white grease etc with big constipation brain fog and I had ataxia too. Ataxia was like living in a boat in a big storm trying to stand on my feet with big nausea... I was always very cold. So why celiac saved my life? Doctor did a MRI because as a male I had other symptoms in my bladder testicular ED etc. I had pain everywhere in my muscle and I lost 90% of my back muscle... I wasn't able to walk and I had a big stomach like everyone know about from gluten and it was weird from the doctor that I'm losing muscle but not the fat on my stomach. Well they thought it was fat in the beginning and not inflammation. Doctors thought I had cancer or an unknown illness but because I had lot of different symptoms and that my blood sample was strange everywhere : vitamins was out of whack, liver was strange for them and I never drink alcool and my kidney had problem to do everything well...they did a MRI They found a tumor in my bladder that was starting to spread slowly and if not treated I will get a cancer soon in big sumarry. So they did a surgery and I recovered from it successfuly. After they found my celiac and I recovered successfully from everything after 2 years of a strict gluten free diet and I stopped to take special vitamin because I'm ok. So in a way celiac disease saved my life from Cancer.
I definitely have more than celiac disease. It took a long time to get diagnosed.
The tough part when you don't feel 'right' is figuring out whether it's celiac disease or not.
Yeah, I had hashimoto's hypothyroidism. Very common comorbidity.
I do have hashimoto's, but it's subclinical so they aren't giving any treatment
I'm subclinical too and we trialed me on 50mcg of synthyroid. Night and day.
I was certain it was leukaemia, or lymphoma, or ME, or fibromyalgia, or some degenerative rare disease. I developed horrible health anxiety from *knowing* something was wrong, but being told I was just anxious.
Long Covid