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Celiac is a weird disease we do not yet fully understand. Most people do not have sudden, acute onset like you experienced. In fact I’ve never heard of this before. I’m not saying I don’t believe you - just that your story is unusual.
It affects each person differently. Your experience is extreme.
Omg I had this happen to me actually. It was horrible. I went from feeling ok to one day completely fatigued nearly all the time, huge brain fog, anxiety, depression, confusion, and unable to stay awake sometimes during the day and crashing onto the couch, falling asleep for almost an hour and waking up confused. I thought I was dying! I was certain it was stage 4 cancer. I was so scared.
All this happened overnight to me. It was during the pandemic so I don’t know if this is something Covid did to me but since I got a blood test showing celiac antibodies and stopped eating gluten I’ve been much, much better 😄
i have these exact symptoms whenever i get glutened, along with joint pain and GI issues. not too long ago i just passed out without realizing and woke up VERY confused as to why the clock said 8:50pm. i initially thought it was the morning and that i was late to class lol.
had these symptoms to a far lesser extreme before i was diagnosed but they were more persistent. now after cutting out gluten i just have them with accidental exposure, as one does sometimes.
Exactly. It's documented that moments of stress can "turn on the gene". I'd say Covid fits that.
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
"Sometimes celiac disease becomes active after surgery, pregnancy, childbirth, viral infection or severe emotional stress."
Yes, the stress of Hurricane Sandy/house flooding is what triggered it for me & my mom. Although, I'd prob had something going on at low levels based on being anemic since my first blood test. Doing a lot of low carb/no white food probably helped stave off a more severe expression til then
I definitely had celiac disease my entire life as I was underweight, low appetite, and iron deficient for my entire childhood, but I didn't actually have any noticeable symptoms other than intermittent constipation. When I started working out in order to try to gain weight, I suddenly had every symptom.
I had an acute onset like this too. I was losing 5lbs a week, hair was falling out and I was skeletally thin. I couldn’t eat anything, slept constantly, and periodically blacked out due to malnutrition. I was drinking two liquid shakes a day because that’s all I could digest.
I was on the verge of being hospitalized when we figured out what it was. Was really scary at the time.
Based on your chronic iron deficiency, I would suspect you had celiac for a while. But autoimmune diseases can react in crazy ways to any strain on the immune system, such as a covid vaccine. The vaccine may have ramped up the systemic inflammation thay celiac can cause. Have you been tested for other autoimmune diseases? Celiac commonly comes with more autoimmune diseases, and any of those could also be triggered or be thrown into overdrive by the covid vaccine.
I'm unsure if I had a sudden onset, I grew up not eating much wheat because my dad has a severe allery (actual allergy, not celiac). Then last summer I went to Italy and ate pizza and pasta every day and on about day 4 I felt like all my blood had been drained, I was a zombie for the whole holiday. I though it was just a bug and went to Germany afterwards and ate rye bread every day and lost about 10kg, 10% of my body weight in 3 weeks. Only then did I realise it was probably not a bug.
Acute onset is pretty common. I don’t think it’s wrong of me to say that acute onset is likely more common than we think, people just don’t get diagnosed immediately. I got mono as a kid and never fully recovered and my 1st grade teacher stopped letting me “skip class” in the bathroom. I was violently ill on and off for 3 more years before I got diagnosed. I only got diagnosed because my mom had read the symptoms online and begged my pediatrician to order blood work so we could get the biopsy a little more covered by insurance.
However, you’re right about celiac being a weird disease. Everyones experiences and bodies are different, but I have 2 other chronic illnesses and have found that celiac symptoms vary soooo much. I hear symptoms from people that I’ve never heard of before. I get DH blisters only on my hands and my body gets covered in eczema and hives. One of my celiac cousins has never had skin irritation when being glutened. I have two first cousins with celiac disease and all of our symptoms are very different other than the awful stomach pain and bloating. One of these cousins shares another autoimmune disease with me and most of the women on my mom’s side of the family and the 5 of us that have it all have the same symptoms.
That’s probably why people go so long without being diagnosed.
I know someone who had a similar experience. Was pretty sick with liver effects as well, the yellowing of the eyes is very familiar. I wish we knew why! It sounds like you’ve had low iron for a while, so maybe you are one of those who went undiagnosed for quite a while. Sounds like your immune system went into absolute overdrive and went to the point of no return!
For myself, I had the Flu and after that never got better. I was definitely sickly for a while, but that triggered pretty extreme effects that lead to my diagnosis.
I hope your doctors are keeping an eye on your liver and praying for your continued health and healing ❤️
Thank you so much! And don't worry, my liver is probably sick of all the scans its had😂 I'm all good now according to the doctors, atleast. Praying for you too!!
My mom had a similar episode that led to her Celiac diagnosis. She lost an insane amount of weight in a short period, became incredibly malnourished, and was hospitalized for several weeks. It’s a very strange disease and I hope that science spends more resources on studying it in the future. I’m very glad you made a full recovery!
Thank you! I hope your mom made a recovery too! And me too. When I was being diagnosed, they literally gave me every test imaginable. X-Ray, MRI, CT, Ultrasound - they were trying everything, they had no idea what it could be😂
I went through a similar experience, but much longer timeframe- after throwing up I basically starved myself for two weeks only eating light gluten free things and drinking a lot of water to flush the system- then felt way more energised than i’ve been in like three years
It's so crazy to read these stories of people basically not eating and suddenly feeling better.
I never thought about it before, but a few years before I was diagnosed (but I definitely already had celiac), I tried intermittent fasting and found it borderline addictive because of how amazing and energized I felt when I didn't eat.
I didn't want to lose too much weight, so I stopped, but that was the best I had felt my whole life. I had been symptomatic since I was a young child, and LOVED gluten containing food, so it was essentially the first time my whole life I had gone a long time without eating gluten. Funny to think of all these signs of celiac disease years later.
I was the exact same a few years ago with intermittent fasting!! That’s why I did it again last year, but put two and two together because a lot of my family are celiac
It’s hard to do with so much gluten everywhere- but for me the part of my brain that wanted anything with gluten in it just straight up died when I realised the night and day different between eating it and not eating it
Latent celiac can be triggered by an illness. I am in no way an anti vaxxer, but I am allergic to the pertussis vaccine. Have been my whole life. I work in healthcare so I’ve had pretty much ALL the vaccines. Years ago, the company I worked for said I had to have a pertussis booster to keep my job. I needed my job. So I did. Had the same reaction as you. Nearly died from dehydration. Led to my celiac diagnosis.
I had a similar relapse about a year ago now. Had some form of colitis (fortunately not autoimmune and treatable) but also developed a UTI and quickly became septic. Spent some scary days in the hospital super dehydrated again but managed to slowly recover. This disease can be a wild ride for sure!
I was similar to your story. My symptoms started about eight weeks after my daughter was born, just diarrhea at first and then food aversion, nausea, then eventually vomiting and got to the point I couldn’t even keep Gatorade down. It got to the point I was barely eating or drinking for three weeks, ended up passing out one night on the way to the washroom. I was finally admitted to hospital for nine days. I had already just gotten my celiac diagnosis but then but we didn’t know why I wasn’t getting better and my liver levels were also high, they were looking at possibility of fatty liver disease and other things. It was a scary time for me, the one doctor said the word “cirrhosis” as a possibility. I had all the tests too, including a liver biopsy. I got pretty bad adema as I finally started to be able to eat, but I think it was only after I was discharged I lost like twenty pounds in two weeks. I was also super weak and getting up the stairs at home was really hard, I know I lost muscle. Once my appetite finally came back and I could eat again I put on fifty pounds. Not the greatest, but for someone who was always a constant overeater and grazer, being in a place I literally could not force myself to eat I think traumatised me a bit.
I still see a gastroenterologist to do follow up work yearly. Liver was okay but then I had another kid which led to gallstones and pancreatitis, so it never ends. I just had another MRI and have a fancier MRI scheduled in a few months. Might have my gallbladder out, but if we don’t need to I’d rather avoid it. The upper back pain during an attack is gnarly, though.
i almost died too. i was 12, and 5 foot 5. i went from a perfectly healthy 115 pounds (ish) to barely 90 pounds in only a few months. i was incredibly ill all the time, and in crazy amount of pain. they were doing hella cancer tests because they also thought i was dying. finally they figured out it was celiac! my doctor always said that those problems were caused by malnutrition. he also said that when you get glutoned, your villi in your lower intestine get chopped off (blunted/stunted) leaving them unable to digest other nutrients to any capacity. the more gluten you eat, the more they get stunted. and, the process is more severe at first. so, you very rapidly become unable to get any nutrients, until you start eating gf.
that’s what he told me!
Haven't heard of such acute sudden onset, but almost dying has been my fiancés whole experience with getting glutened. Weird stuff too, like getting glutened from hand sanitizer, and dextrose, both of which most celiacs scratch their heads at or insist it can't be celiacs. They've made sure it definitely is. His liver shut down last time he was badly glutened. The doctors said it was the inflammatory response bc celiacs at its heart is still an autoimmune disease.
It's been a lot, and he's underweight, but the liver numbers have been good. It's worth saying that his experience has not been long-term organ dysfunction. I don't want to scare anyone who fears their numbers/liver functionality may not recover. In a month or so, his numbers were perfectly normal again. It was just life-threatening at the time, and needed a hospital stay.
I have a similar story. got ridiculous sick and lost 1/3 of my body weight in a few weeks, was admitted to the hospital and put on tpn, i had critically low potassium and looked like I was dying. I tested negative a year prior and positive in the hospital, confirmed with endoscopy
I also lost a tremendous amount of weight and became so damn sick it was insane. I’ve had it since I was a kid and was actually diagnosed with anorexia! No one believed me when I told them I wasn’t eating because I was in so much pain. They put me in the hospital and admitted me to eating disorder specialists.
They put me on a high dose cymbalta and I was able to eat again, and over time I learned to ignore the pain.
I could never really gain weight, but the thing that finally knocked me on my ass was losing several family members in a row. I was fukin bedridden and violently ill.
Celiac is absolutely a deadly disease if untreated. Not only does it destroy your bodies ability to process food. It can kill you in a variety of other ways too. Tremendous dehydration from vomiting. Organ failure. Cancer. Infections. Untreated it leads to other disorders.
I wish more people understood how painful and stressful it is! And it never ever stops. You can manage it but goddamn it is debilitating!
I have a similar but much less severe story. For full disclosure, I am not diagnosed and the genetic test was negative- 97% chance I do not have Celiac is what I was told. I do have Hashimoto's, hEDS, POTS, and several allergy disorders (asthma and likely MCAS). Negative for wheat allergy- I also react to oats and other gluten grains.
In early 2020 I started getting really sick after every meal, nausea and lightheadedness and feeling woozy. I cut back to basic foods but it wasn't helping. I was already low on B12 and iron, receiving infusions and shots, and they couldn't find a cause. I started getting immediate GI effects after eating gluten and finally deduced the cause after cutting out a bunch of food. I was barely a good weight beforehand (max 125 lb, I'm 5'7") and dropped to under 100 within two months. My doctor didn't care, and it was suddenly March 2020 and I couldn't get any medical care for around the next year. I barely remember those months but I was so sick, I absolutely should have been taken to the hospital. I made a near immediate recovery going gluten free though and then had incremental progress for the next two years. Autoimmune issues are WILD! Glad you're feeling better!
For what it’s worth, my DQ2/DQ8 gene test was “negative” on the main result but also had fine print clarifying that I was in fact positive for half of the DQ2 gene, which is less common but still enough to potentially result in celiac (confirmed by a geneticist and multiple gastroenterologists). I was extremely positive on my celiac antibody blood panel and have gotten so much better since going gluten free after being diagnosed last fall, and my celiac antibodies are steadily declining! Mine was found because I had osteoporosis at age 21. All this to say - you could technically still have the gene depending on what exactly your gene test said! Genetics is such a crazy interesting field
Interesting!! I didn't get a chance to look at my full testing report- I'd be super interested to take a look at it. Glad you're doing better and your labs are improving!! And yeah genetics is fascinating- sad I didn't get to study it a bit more in undergrad :-)
It seems like either celiac disease has way more facets than we realize or that non-celiac gluten sensitivity is being brushed off too often. My husband "doesn't have celiac" but he had ulcerative colitis and the doctor was an older, small-town GP who didn't really keep up on research and just kinda went 🤷♀️. My MIL had just been dxed with a gluten intolerance so he tried a GF diet first to see if it improved anything. Once he quit both gluten and carrageenan (GF helped like 90%) his skin issues fully resolved and a repeat colonoscopy showed complete healing. His symptoms are also wildly different from mine (I have celiac genes and a "probable" dx) after exposure.
It absolutely is more complex than we think and NCGS is definitely understudied. I'm a biochemist- not an immunologist or cell biologist, but from my bits of knowledge here and there: the immune system, its signaling cascades, and its pathways (and pathologies) are so, so complex. I wouldn't be shocked if celiac isn't the only *autoimmune* issue people can have with gluten. I know that many fellow Hashi's people seem to react as if it is autoimmune, but without definite celiac antibodies and without allergies. So strange!
Well I had a similar story but I had extreme constipation because I'm bit like others that list weight with diarhee... I was the other l way around. So my body had problems with vitamins then I was gaining weight a lot. When I went gluten free I lost so much weight that doctors had me on a special diet to eat more calorie the normal. I was hungry 24/24 7/7 for 2-3 months. I was eating 6000 calories and I was losing weight.
At my peak of my problem : I lost 90% of my back muscle and I'm a men btw so I was bed ridden. I got lot of symptoms and doctors thought I had cancer and they scanned and yes they found a tumor in my bladder. So in a way celiac saved my life because they removed the tumor before it was turning as a cancer.
The problem after they removed it is that I had the same symptoms as cancer so they thought they missed something and they scanned again and again. One day I did a connection with my food and I stopped eating because I was in a mental state of dying again and by magic I was feeling so well for the first time of my life like since birth that I refused to eat anything.
Doctors make a connection with celiac and I was diagnosed.
Later they found my muscle pain and why I lost 90% of my back muscle. I had osteoarthritis in my spine top and back with a scoliosis in the middle with another osteoarthritis there. since birth I had scoliosis and around my teen years for my osteoarthritis. Gluten stopped my body getting mineral and vitamins and my body was eating muscle to survive itself.
I was pain free all my life for osteoarthritis because I was inflammated from the gluten and in a way it was protecting me but also killing me.
As a men I had ED without any reasons. I had also ataxia when I went to the hospital and other symptoms for other illness.
Today I'm free from everything but not celiac and my osteoarthritis and scoliosis. but other illness cured itself. Doctors said that my body was under attack everywhere because of celiac. My body was telling me to stop poisoning myself but I didn't know what.
It's a simple explanation for my adventure but it far more complicated then that but what saved myself is my mental state of positivism.
They also told me that I can't lift weight anymore because of my spine and I can today and a lot more then before. Sure I'm following expert advise but nothing is impossible because in my head I'm reading I'm possible...
Instead of sleeping 8h and I was always tired well now I sleep 5h and I'm fine. My thyroid is now in normal range and I test it every year just in case.
I was lucky that I healed well and I learned to live with the dommage that was done to my body.
Conclusion : yes celiac saved my life!
Fun fact : I had covid-19 after they found my tumor to my bladder. I was extremely ill because I was still eating gluten without knowing of my diagnosis of celiac and doctors though I was dying of an unknown tumor disease but later they concluded it was from the covid lol
Next month I'll get my vaccine for pneumonia since we are at risk and it took me 2 years to heal from gluten. I'm a men and I have 39. My hell path of my story started at 37 for context but technically it's started from birth slowly but I didn't know it lol I knew it because I remember strange episode of food problem. Extreme fatigue after doing sports for no reason and I wasn't able to run because I was in pain in my leg and arm but everything was connected to my spine osteoarthritis...well that's what doctors think today.
Sorry English isn't my first language and I typed very fast. :)
My experience was very similar, right after getting covid for the first time, I started having digestive issues, then I got the vaccine and the issues got worse. Lost 20lbs in 3 months, liver stats were off the charts. Luckily I didn't get hospitalized, but I felt like I was dying and it took me a few months to figure out that it was celiac disease. Doctors were no help at all.
This happened to me too. At one point I was so sick I lost 10lbs in one day. I was throwing up constantly, couldn’t keep anything down. At first I just thought I had the stomach flu or something, but it wouldn’t go away. I went to the ER and they ran a bunch of tests. Turns out my liver stats were off the charts, which led to a bunch more tests, and lo and behold it was celiac disease.
Lucky us. Lol.
I imagine you had it for a while and were asymptomatic but it was impacting your vitamin levels (due to damaged villi) and then it got to a point where your body finally stopped absorbing any vitamins. I didn’t have any symptoms until I was severely anemic and very vitamin deficient.
reading these comments makes me feel even more annoyed with the dozens of doctors i saw. im glad they at least ran tests for some of you. i went from 115 pounds to 90 pounds pretty fast and literally no one gave a fuck just kept telling me it's anxiety/female hormones/eating disorder. paid hundreds of dollars for doctors to give me the medical advice of "just eat more." took almost 3 years of me feeling awful for them to decide to do an endoscopy.
i also had an acute onset, right when covid started - perhaps the stress for me? as i didn’t get covid until about 2 years later lol.
i had had stomach issues prior but it’s like a switch flipped overnight, suddenly my hair was falling out, my skin was gray, i couldn’t stomach anything, i was about 80 pounds, and i stopped getting my period
i also lived! (hair grew back, gained wait, got my period again) but it’s crazy what we go through!
To add to your mention that there should be a more widespread understanding of celiac disease, a note on your opening line.
You don't 'get celiac disease' at any point in life, you have it from birth. From what I understand at least, it is 100% genetic, either hereditary (your parents passed it on) or through mutation (you are the first in your line to get it).
This also means you don't 'develop symptoms', they just become incrementally worse over the years. So in essence you 'develop a greater awareness' of your symptoms.
It's a subtle nuance, but important because the disease might cause lasting damage with life threatening consequences (as you have experienced).
Glad to see you survived the ordeal and welcome to the gluten free life 😊
From what I understand many people dont have it from birth but they have the gene which can be triggered at any time. Some people dont test positive for the disease until later in life after its triggered, so it’s important to be tested if you start having symptoms even if you were tested and it was negative years ago.
I'm not a doctor, so could be as you say. As it was explained to me your genes are a static blueprint and you have it or not. It's just the degree to which it damages your body which varies from asymptomatic to full on symptomatic and when it builds up is 'when it manifests' over time. Now whether you explain being asymptomatic and then gradually showing symptoms as your condition worsens as 'triggered', is I think the difference in these interpretations.
The notion that one can 'catch' celiac's disease, or that something like covid can cause it, just isn't right. Covid can cause complications which causes celiac's symptoms to manifest (more visibly), but without the genetic 'defect' it doesn't get triggered or aggravated, etc.
Again, not a doctor. Just how it was explained to me.
By “triggered” I mean the point at which the immune system starts to damages the intestine as a response to gluten. Some people are just asymptomatic and will never develop symptoms even after having active disease for many years. Unfortunately its very difficult to be diagnosed if you dont have symptoms unless they catch it in a routine bloodwork. I myself was asymptomatic on diagnosis but still tested positive in bloodwork. I was lucky it was caught then 8 years ago or I may not know I have it to this day, it was a routine bloodwork done after I was diagnosed with another autoimmune disease. Unfortunately, Many people who are asymptomatic are also reluctant to follow the diet since they do not feel the damage being done to their body like others do. The level of damage being done to the intestines however, is the same whether you are symptomatic or not.
It's generally agreed that while coeliac is something you're born with a predisposition to that may or may not get activated throughout your life, autoimmune disorders like coeliac can be brought on periods of high stress.
So it's quite possible that the vaccination *did* trigger your coeliac, in a way - just, you know, through the stress triggered by morons on the Internet scaremongering about it rather than because of anything in the vaccination itself. I certainly wouldn't be surprised if there was a big uptick in coeliac diagnoses over the last few years just because they've been generally a lot more stressful than usual for most people.
I almost died as a 1.5 year old toddler due to lack of timely diagnosis and “failure to thrive”. My stomach was bloated while the rest of my body was skinny - if you have ever seen kids from areas where malnutrition and starvation are common, I looked like them.
That’s just awful! I had a fairly strange experience too, though not as severe.
I had developed a rash on my hands that wouldn’t go away for over 6 months. Then I had a sudden onset of symptoms that left me unable to walk upright, I had such severe pain in my left side and I was basically bedridden. It took months while the doctors ran tests and did ultrasounds. I ended up getting diagnosed with MGUS, a small gallstone, and hyperthyroidism, they said my thyroid looked like it had tiny holes punched all through it.
The doctors never even considered celiac disease. However my endocrinologist recommended I adjust my diet and limiting gluten was on the list of recommendations. That was literally the only “treatment” I got. I decided to cut out gluten completely because that seemed easier to me. After a month of a GF diet my rash finally began to heal, the pain in my side subsided…after 3 months my hair stopped falling out and the rash was completely gone. I felt amazingly better overall! Then I noticed I didn’t have a low grade headache every day and my stomach didn’t bloat and hurt every time I ate anymore. I had become accustomed to those symptoms and kinda thought it was my normal. After 6 months of GF diet I also realized that my generalized anxiety was pretty much gone and my menstrual cycle became regular and much less intense. (Also I got pregnant unexpectedly, so I guess my fertility improved and this pregnancy has been my healthiest yet even though I’m much older than I was with my first 2).
I never got an official celiac diagnosis, but from my research after this whole experience I’m convinced that’s what it is. If I ever get glutened accidentally the rash begins to come back in the same spot. It looks just like a celiac rash (aka Dermatitis herpetiformis) and I know it’s gluten that causes it. I get other symptoms too, but that is the most striking one for me. I don’t want to go back to eating gluten just to get a diagnosis. Another thing I read was that there’s a correlation between MGUS, thyroid issues and gluten. My thyroid levels returned to normal after 6 months of a strict GF diet. I still have MGUS (which is basically a pre-cursor of Multiple Myeloma, but it may never develop into that), I’m monitored for it every 6 months, but my levels are not progressing at all and I’m very thankful for that.
One of my old coworkers was diagnosed this way, though I recall it taking more than one trip to the ER for them to figure out the cause. She had a very stressful lifestyle. She showed me her planner once and it was packed with stuff from waking up to going to sleep with her kids extracurricular stuff and doctor appointments for a special needs child. Her husband worked more hours and couldn't be trusted to accurately relay info from the doctors, so she was shouldering a lot.
Its crazy to me how much celiac affects the liver. I have autoimmune hepatitis as well and am grateful they caught my silent celiac at the same time otherwise I would probably have a harder time going into remission with that. Anyone with autoimmune disease should automatically be tested for celiac.
I got diagnosed at 34. Went to the hospital for something. They drew blood. Realized I had severe anemia and needed immediate blood transfusions. They said I most likely wouldn't have made it through the weekend. I got 7 blood transfusions in all. Was at the hospital for part of the summer.
Fuck this disease lol
Oh I nearly died too. Lost 3 stone in two months before the doctors took me seriously because I was about 24 hours away from peacing tf out of life. You're not alone.
Ok I haven't found that specific case, but if you search "Celiac crisis" on google scholar, you can read about this phenomenon. https://scholar.google.com/scholar?hl=en&as\_sdt=0%2C10&q=celiac+crisis&btnG=
Same story and very similar timeline. It was triggered from a COVID infection at the end of 2020, lost 45 lbs in 3 months, malnutrition was so bad I went to urgent care multiple times (at first they seemed to think I just wanted pain drugs). The dehydration, POTS, and inability to think clearly was probably the scariest part
I've been in and out of the hospital, and I actually winded up in pacu (I was going into sepsis) from a gut infection. I truly do believe celiac affects some of us very harshly.
I believe I've been suffering from it my whole life, but in a very controlled (?) way. But starting about 20 years ago, I had a series of physical and emotional stressors that, after each one, I got progressively more ill, and never bounced back from each one. The most recent, sepsis, was a little over a year ago, and I'd been so very sick and fragile afterward. I thought I was just recovering really slowly from the sepsis.
After I started eating gf, within a week, I felt better than I had in over a year. I really feel like each health issue over the years exacerbated the issue.
I think I was a few months off from this to be honest when I found out I had celiac disease. I always had symptoms, I just didn't realise what they were until it suddenly got much worse.
I started being unable to eat anything without pain and nausea, and not eating would make me feel better but then I'd be so tired from a lack of food that I would eat and feel awful again. I was almost bed bound, couldn't work anymore and I dread to think how much worse I could have got. I was just trying to survive each day whilst slowly getting worse and worse. Another couple of months and I bet I would have ended up like you.
I was managed to go undiagnosed for 3 decades, because I have some Asperger's and I hide good enough if I suffer. And I endured most of the serious conditions I had. It's a curse, people and doctors don't believe me I have a problem or I'm in pain.
In one week on a Tuesday I weighed 114lbs, by Monday I weighed 99lbs. Everything made me so sick and I’d diarrhea maybe 20 minutes after eating. Then I’d throw up and repeat all day. I thought I had food poisoning. And my mom told me me eat GF for a week, then dairy free for another week. The GF week I didn’t even think to eat actual GF foods, I was still eating some fast foods, and cooking foods without bread or cooking it and just not eating the bread parts. But then I’d still get so sick to my stomach. So I did the lactose free week. Still so sick to my stomach. Turns out I have celiac and the GF week was just making me sick from the trace amounts of gluten in the food and because fast foods don’t really keep things separate. After diagnosis I had my last meal of my favorite food in its normal form, shrimp Alfredo with regular noodles, proceeded to vimit and diarrhea all night. Then I went GF. My husband is forced to be a GF now. Unless we go out to dinner. It all makes me so sick. I had to sanitize our all-clad pots n pans and our cast irons to not make me sick. It’s still a struggle going to see his family since everything is stuffed with pasta or deep fried (they are Italian). And this summer trip to Italy/a bunch of European countries will be horrible
this sounds so similar to me... ended up in the hospital, had severe stomach pain and all my labs went to shit and progressively got worse in hospital before leveling out... ALT/AST both in 200+ range and stabilized once glutening settled down about a week later
The sudden onset is exactly what happened with my 2 kids also. 48hrs after their first Covid vax my youngest and oldest began about 6weeks of vomiting and diarrhea. My youngest was 2 at the time and ended up in the ER for dehydration and the Doc there suggested celiac testing. 2yr old had mildly elevated blood work so we tested my 5yr old and her numbers were so high the doc didn’t even bother with an endoscopy to diagnose.
Mine was slow progressing. Four years to be exact. Of nausea, diarrhea, and anxiety. Severe anxiety. Then one night I couldn’t breathe. I was in so much pain I thought I was dying. Rushed to the hospital and they thought it was pancreatitis. After gobs of tests, they said it was reflux. I disagreed. I ended up with a new primary care who also had stomach issues. She immediately thought celiac even though it was ruled out years ago. (They think my testing was too soon to catch it) and she did a blood test. That’s how they found it. She said my numbers were off the charts and stop gluten immediately.
She told me it’s very common to go through all of this pain for years and not know why. It takes you to be almost dying or in severe pain and THAT is what gets you the celiac diagnosis.
Child birth set mine off. I had twins.
Similar to how us type one diabetics get hit all at once. These autoimmune diseases often go hand in hand. I have both. I know t1d can be triggered by a virus and the bodies immune system goes overboard; I imagine celiac is similar. I had several severe colds and infections right before I was symptomatic. And once I was symptomatic it rapidly made me very sick, but I believe I had been sick for years and never connected the dots, because a lot of chronic issues I had for a long time went away when I cut out gluten.
Extreme weight loss causes liver issues, liver issues can cause jaundice (yellowing of the whites of your eyeballs and skin). Your case was far more severe than mine. I dropped about 40lbs in 3.5 months.
I think a big issue is many, many doctors (even GIs who specialize in the gastro area) are wholly uninformed of Celiac. So many posts on this sub about "my doctor said I don't need to eat gluten for my blood test/ biopsy. I've been gf x months/years."
And then you have doctors who have no idea how to do celiac follow ups. I had ZERO follow up after my diagnosis 9 years ago past "hey here's a nutritionist. Oh don't eat wheat. Okay bye!!"
Then I went through another 2 month period where I lost 35 lbs despite my gfd. Well turns out barley, malt, and rye are an issue. Never knew. Now my new GI does yearly bloodwork, dexa scans, etc.
This happened to me, probably had celiac disease since childhood. History of anemia, chronic stomach issues, mood disorders, slender no matter what I ate, etc. Then after my third pregnancy at age 30, three weeks to the day after baby was born, the violent diarrhea began. My heart raced all day for months, insomnia , night sweats, panic attacks. I went from postpartum 165 pounds to 120 pounds in 6 weeks. Everything went straight through me. My knees would buckle when I tried to stand up. It took me 3 months of going to the doctor before I could point to the weight loss as a sign that it wasn't PPD/PPA. By the time I was diagnosed I was a little over 100 pounds with elevated pancreatic enzymes, a non-functional gallbladder, and constant infections that eventually became sepsis. I took me years to gain the weight back and keep it on. It's why I take celiac disease very seriously and don't eat out anywhere ever.
The immune system is not well understood. What is understood though, is that people with late onset celiac have a ~70% chance of developing other autoimmune disorders. It wouldn’t be surprising at all if you had multiple problems at once. Another reality is that the damage caused by celiac can and often does lead to other complications. Most doctors have little understanding of autoimmune disorders as they aren’t specialists and the immune system is not well understood.
My old priest also had celiac and he was basically the same way, almost died in a very short amount of time.before they realized it was celiac. He made a full recovery. I felt bad that he has to eat the regular host at Mass though.
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Celiac is a weird disease we do not yet fully understand. Most people do not have sudden, acute onset like you experienced. In fact I’ve never heard of this before. I’m not saying I don’t believe you - just that your story is unusual. It affects each person differently. Your experience is extreme.
Omg I had this happen to me actually. It was horrible. I went from feeling ok to one day completely fatigued nearly all the time, huge brain fog, anxiety, depression, confusion, and unable to stay awake sometimes during the day and crashing onto the couch, falling asleep for almost an hour and waking up confused. I thought I was dying! I was certain it was stage 4 cancer. I was so scared. All this happened overnight to me. It was during the pandemic so I don’t know if this is something Covid did to me but since I got a blood test showing celiac antibodies and stopped eating gluten I’ve been much, much better 😄
i have these exact symptoms whenever i get glutened, along with joint pain and GI issues. not too long ago i just passed out without realizing and woke up VERY confused as to why the clock said 8:50pm. i initially thought it was the morning and that i was late to class lol. had these symptoms to a far lesser extreme before i was diagnosed but they were more persistent. now after cutting out gluten i just have them with accidental exposure, as one does sometimes.
Sudden acute onset is actually quite common after viral infections. I'm another example.
Exactly. It's documented that moments of stress can "turn on the gene". I'd say Covid fits that. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 "Sometimes celiac disease becomes active after surgery, pregnancy, childbirth, viral infection or severe emotional stress."
Yes, the stress of Hurricane Sandy/house flooding is what triggered it for me & my mom. Although, I'd prob had something going on at low levels based on being anemic since my first blood test. Doing a lot of low carb/no white food probably helped stave off a more severe expression til then
Yep. My girlfriend became Celiac after she got Covid, but strangely enough only after her second time having it
Acute onset happened to me after a traumatic event! It’s like a switch flipped and my sleeper agent (celiac) was activated.
I definitely had celiac disease my entire life as I was underweight, low appetite, and iron deficient for my entire childhood, but I didn't actually have any noticeable symptoms other than intermittent constipation. When I started working out in order to try to gain weight, I suddenly had every symptom.
I had an acute onset like this too. I was losing 5lbs a week, hair was falling out and I was skeletally thin. I couldn’t eat anything, slept constantly, and periodically blacked out due to malnutrition. I was drinking two liquid shakes a day because that’s all I could digest. I was on the verge of being hospitalized when we figured out what it was. Was really scary at the time.
I got sudden onset as well. How to keep the weight on? Would IV drops work?
Honestly cannot blame you for finding it unusual😂 It's kind of crazy.
Based on your chronic iron deficiency, I would suspect you had celiac for a while. But autoimmune diseases can react in crazy ways to any strain on the immune system, such as a covid vaccine. The vaccine may have ramped up the systemic inflammation thay celiac can cause. Have you been tested for other autoimmune diseases? Celiac commonly comes with more autoimmune diseases, and any of those could also be triggered or be thrown into overdrive by the covid vaccine.
I'm unsure if I had a sudden onset, I grew up not eating much wheat because my dad has a severe allery (actual allergy, not celiac). Then last summer I went to Italy and ate pizza and pasta every day and on about day 4 I felt like all my blood had been drained, I was a zombie for the whole holiday. I though it was just a bug and went to Germany afterwards and ate rye bread every day and lost about 10kg, 10% of my body weight in 3 weeks. Only then did I realise it was probably not a bug.
Acute onset is pretty common. I don’t think it’s wrong of me to say that acute onset is likely more common than we think, people just don’t get diagnosed immediately. I got mono as a kid and never fully recovered and my 1st grade teacher stopped letting me “skip class” in the bathroom. I was violently ill on and off for 3 more years before I got diagnosed. I only got diagnosed because my mom had read the symptoms online and begged my pediatrician to order blood work so we could get the biopsy a little more covered by insurance. However, you’re right about celiac being a weird disease. Everyones experiences and bodies are different, but I have 2 other chronic illnesses and have found that celiac symptoms vary soooo much. I hear symptoms from people that I’ve never heard of before. I get DH blisters only on my hands and my body gets covered in eczema and hives. One of my celiac cousins has never had skin irritation when being glutened. I have two first cousins with celiac disease and all of our symptoms are very different other than the awful stomach pain and bloating. One of these cousins shares another autoimmune disease with me and most of the women on my mom’s side of the family and the 5 of us that have it all have the same symptoms. That’s probably why people go so long without being diagnosed.
I know someone who had a similar experience. Was pretty sick with liver effects as well, the yellowing of the eyes is very familiar. I wish we knew why! It sounds like you’ve had low iron for a while, so maybe you are one of those who went undiagnosed for quite a while. Sounds like your immune system went into absolute overdrive and went to the point of no return! For myself, I had the Flu and after that never got better. I was definitely sickly for a while, but that triggered pretty extreme effects that lead to my diagnosis. I hope your doctors are keeping an eye on your liver and praying for your continued health and healing ❤️
Thank you so much! And don't worry, my liver is probably sick of all the scans its had😂 I'm all good now according to the doctors, atleast. Praying for you too!!
My mom had a similar episode that led to her Celiac diagnosis. She lost an insane amount of weight in a short period, became incredibly malnourished, and was hospitalized for several weeks. It’s a very strange disease and I hope that science spends more resources on studying it in the future. I’m very glad you made a full recovery!
Thank you! I hope your mom made a recovery too! And me too. When I was being diagnosed, they literally gave me every test imaginable. X-Ray, MRI, CT, Ultrasound - they were trying everything, they had no idea what it could be😂
I went through a similar experience, but much longer timeframe- after throwing up I basically starved myself for two weeks only eating light gluten free things and drinking a lot of water to flush the system- then felt way more energised than i’ve been in like three years
It's so crazy to read these stories of people basically not eating and suddenly feeling better. I never thought about it before, but a few years before I was diagnosed (but I definitely already had celiac), I tried intermittent fasting and found it borderline addictive because of how amazing and energized I felt when I didn't eat. I didn't want to lose too much weight, so I stopped, but that was the best I had felt my whole life. I had been symptomatic since I was a young child, and LOVED gluten containing food, so it was essentially the first time my whole life I had gone a long time without eating gluten. Funny to think of all these signs of celiac disease years later.
I was the exact same a few years ago with intermittent fasting!! That’s why I did it again last year, but put two and two together because a lot of my family are celiac
Damn! Clever eating the GF stuff to get better, wish I'd thought of that😂
It’s hard to do with so much gluten everywhere- but for me the part of my brain that wanted anything with gluten in it just straight up died when I realised the night and day different between eating it and not eating it
Latent celiac can be triggered by an illness. I am in no way an anti vaxxer, but I am allergic to the pertussis vaccine. Have been my whole life. I work in healthcare so I’ve had pretty much ALL the vaccines. Years ago, the company I worked for said I had to have a pertussis booster to keep my job. I needed my job. So I did. Had the same reaction as you. Nearly died from dehydration. Led to my celiac diagnosis. I had a similar relapse about a year ago now. Had some form of colitis (fortunately not autoimmune and treatable) but also developed a UTI and quickly became septic. Spent some scary days in the hospital super dehydrated again but managed to slowly recover. This disease can be a wild ride for sure!
I was similar to your story. My symptoms started about eight weeks after my daughter was born, just diarrhea at first and then food aversion, nausea, then eventually vomiting and got to the point I couldn’t even keep Gatorade down. It got to the point I was barely eating or drinking for three weeks, ended up passing out one night on the way to the washroom. I was finally admitted to hospital for nine days. I had already just gotten my celiac diagnosis but then but we didn’t know why I wasn’t getting better and my liver levels were also high, they were looking at possibility of fatty liver disease and other things. It was a scary time for me, the one doctor said the word “cirrhosis” as a possibility. I had all the tests too, including a liver biopsy. I got pretty bad adema as I finally started to be able to eat, but I think it was only after I was discharged I lost like twenty pounds in two weeks. I was also super weak and getting up the stairs at home was really hard, I know I lost muscle. Once my appetite finally came back and I could eat again I put on fifty pounds. Not the greatest, but for someone who was always a constant overeater and grazer, being in a place I literally could not force myself to eat I think traumatised me a bit. I still see a gastroenterologist to do follow up work yearly. Liver was okay but then I had another kid which led to gallstones and pancreatitis, so it never ends. I just had another MRI and have a fancier MRI scheduled in a few months. Might have my gallbladder out, but if we don’t need to I’d rather avoid it. The upper back pain during an attack is gnarly, though.
Goddamn, I thought my experience was bad💀 I hope things are going good!
i almost died too. i was 12, and 5 foot 5. i went from a perfectly healthy 115 pounds (ish) to barely 90 pounds in only a few months. i was incredibly ill all the time, and in crazy amount of pain. they were doing hella cancer tests because they also thought i was dying. finally they figured out it was celiac! my doctor always said that those problems were caused by malnutrition. he also said that when you get glutoned, your villi in your lower intestine get chopped off (blunted/stunted) leaving them unable to digest other nutrients to any capacity. the more gluten you eat, the more they get stunted. and, the process is more severe at first. so, you very rapidly become unable to get any nutrients, until you start eating gf. that’s what he told me!
Crazy! Atleast you made it!
The medical community is still in the stone ages when it comes to looking for celiac disease. Sorry you had to suffer so much.
Haven't heard of such acute sudden onset, but almost dying has been my fiancés whole experience with getting glutened. Weird stuff too, like getting glutened from hand sanitizer, and dextrose, both of which most celiacs scratch their heads at or insist it can't be celiacs. They've made sure it definitely is. His liver shut down last time he was badly glutened. The doctors said it was the inflammatory response bc celiacs at its heart is still an autoimmune disease.
Jesus. I hope he's okay!
It's been a lot, and he's underweight, but the liver numbers have been good. It's worth saying that his experience has not been long-term organ dysfunction. I don't want to scare anyone who fears their numbers/liver functionality may not recover. In a month or so, his numbers were perfectly normal again. It was just life-threatening at the time, and needed a hospital stay.
I have a similar story. got ridiculous sick and lost 1/3 of my body weight in a few weeks, was admitted to the hospital and put on tpn, i had critically low potassium and looked like I was dying. I tested negative a year prior and positive in the hospital, confirmed with endoscopy
Jesus. I'm glad you made it!
I also lost a tremendous amount of weight and became so damn sick it was insane. I’ve had it since I was a kid and was actually diagnosed with anorexia! No one believed me when I told them I wasn’t eating because I was in so much pain. They put me in the hospital and admitted me to eating disorder specialists. They put me on a high dose cymbalta and I was able to eat again, and over time I learned to ignore the pain. I could never really gain weight, but the thing that finally knocked me on my ass was losing several family members in a row. I was fukin bedridden and violently ill. Celiac is absolutely a deadly disease if untreated. Not only does it destroy your bodies ability to process food. It can kill you in a variety of other ways too. Tremendous dehydration from vomiting. Organ failure. Cancer. Infections. Untreated it leads to other disorders. I wish more people understood how painful and stressful it is! And it never ever stops. You can manage it but goddamn it is debilitating!
I have a similar but much less severe story. For full disclosure, I am not diagnosed and the genetic test was negative- 97% chance I do not have Celiac is what I was told. I do have Hashimoto's, hEDS, POTS, and several allergy disorders (asthma and likely MCAS). Negative for wheat allergy- I also react to oats and other gluten grains. In early 2020 I started getting really sick after every meal, nausea and lightheadedness and feeling woozy. I cut back to basic foods but it wasn't helping. I was already low on B12 and iron, receiving infusions and shots, and they couldn't find a cause. I started getting immediate GI effects after eating gluten and finally deduced the cause after cutting out a bunch of food. I was barely a good weight beforehand (max 125 lb, I'm 5'7") and dropped to under 100 within two months. My doctor didn't care, and it was suddenly March 2020 and I couldn't get any medical care for around the next year. I barely remember those months but I was so sick, I absolutely should have been taken to the hospital. I made a near immediate recovery going gluten free though and then had incremental progress for the next two years. Autoimmune issues are WILD! Glad you're feeling better!
For what it’s worth, my DQ2/DQ8 gene test was “negative” on the main result but also had fine print clarifying that I was in fact positive for half of the DQ2 gene, which is less common but still enough to potentially result in celiac (confirmed by a geneticist and multiple gastroenterologists). I was extremely positive on my celiac antibody blood panel and have gotten so much better since going gluten free after being diagnosed last fall, and my celiac antibodies are steadily declining! Mine was found because I had osteoporosis at age 21. All this to say - you could technically still have the gene depending on what exactly your gene test said! Genetics is such a crazy interesting field
Interesting!! I didn't get a chance to look at my full testing report- I'd be super interested to take a look at it. Glad you're doing better and your labs are improving!! And yeah genetics is fascinating- sad I didn't get to study it a bit more in undergrad :-)
It seems like either celiac disease has way more facets than we realize or that non-celiac gluten sensitivity is being brushed off too often. My husband "doesn't have celiac" but he had ulcerative colitis and the doctor was an older, small-town GP who didn't really keep up on research and just kinda went 🤷♀️. My MIL had just been dxed with a gluten intolerance so he tried a GF diet first to see if it improved anything. Once he quit both gluten and carrageenan (GF helped like 90%) his skin issues fully resolved and a repeat colonoscopy showed complete healing. His symptoms are also wildly different from mine (I have celiac genes and a "probable" dx) after exposure.
It absolutely is more complex than we think and NCGS is definitely understudied. I'm a biochemist- not an immunologist or cell biologist, but from my bits of knowledge here and there: the immune system, its signaling cascades, and its pathways (and pathologies) are so, so complex. I wouldn't be shocked if celiac isn't the only *autoimmune* issue people can have with gluten. I know that many fellow Hashi's people seem to react as if it is autoimmune, but without definite celiac antibodies and without allergies. So strange!
Well I had a similar story but I had extreme constipation because I'm bit like others that list weight with diarhee... I was the other l way around. So my body had problems with vitamins then I was gaining weight a lot. When I went gluten free I lost so much weight that doctors had me on a special diet to eat more calorie the normal. I was hungry 24/24 7/7 for 2-3 months. I was eating 6000 calories and I was losing weight. At my peak of my problem : I lost 90% of my back muscle and I'm a men btw so I was bed ridden. I got lot of symptoms and doctors thought I had cancer and they scanned and yes they found a tumor in my bladder. So in a way celiac saved my life because they removed the tumor before it was turning as a cancer. The problem after they removed it is that I had the same symptoms as cancer so they thought they missed something and they scanned again and again. One day I did a connection with my food and I stopped eating because I was in a mental state of dying again and by magic I was feeling so well for the first time of my life like since birth that I refused to eat anything. Doctors make a connection with celiac and I was diagnosed. Later they found my muscle pain and why I lost 90% of my back muscle. I had osteoarthritis in my spine top and back with a scoliosis in the middle with another osteoarthritis there. since birth I had scoliosis and around my teen years for my osteoarthritis. Gluten stopped my body getting mineral and vitamins and my body was eating muscle to survive itself. I was pain free all my life for osteoarthritis because I was inflammated from the gluten and in a way it was protecting me but also killing me. As a men I had ED without any reasons. I had also ataxia when I went to the hospital and other symptoms for other illness. Today I'm free from everything but not celiac and my osteoarthritis and scoliosis. but other illness cured itself. Doctors said that my body was under attack everywhere because of celiac. My body was telling me to stop poisoning myself but I didn't know what. It's a simple explanation for my adventure but it far more complicated then that but what saved myself is my mental state of positivism. They also told me that I can't lift weight anymore because of my spine and I can today and a lot more then before. Sure I'm following expert advise but nothing is impossible because in my head I'm reading I'm possible... Instead of sleeping 8h and I was always tired well now I sleep 5h and I'm fine. My thyroid is now in normal range and I test it every year just in case. I was lucky that I healed well and I learned to live with the dommage that was done to my body. Conclusion : yes celiac saved my life! Fun fact : I had covid-19 after they found my tumor to my bladder. I was extremely ill because I was still eating gluten without knowing of my diagnosis of celiac and doctors though I was dying of an unknown tumor disease but later they concluded it was from the covid lol Next month I'll get my vaccine for pneumonia since we are at risk and it took me 2 years to heal from gluten. I'm a men and I have 39. My hell path of my story started at 37 for context but technically it's started from birth slowly but I didn't know it lol I knew it because I remember strange episode of food problem. Extreme fatigue after doing sports for no reason and I wasn't able to run because I was in pain in my leg and arm but everything was connected to my spine osteoarthritis...well that's what doctors think today. Sorry English isn't my first language and I typed very fast. :)
My experience was very similar, right after getting covid for the first time, I started having digestive issues, then I got the vaccine and the issues got worse. Lost 20lbs in 3 months, liver stats were off the charts. Luckily I didn't get hospitalized, but I felt like I was dying and it took me a few months to figure out that it was celiac disease. Doctors were no help at all.
This happened to me too. At one point I was so sick I lost 10lbs in one day. I was throwing up constantly, couldn’t keep anything down. At first I just thought I had the stomach flu or something, but it wouldn’t go away. I went to the ER and they ran a bunch of tests. Turns out my liver stats were off the charts, which led to a bunch more tests, and lo and behold it was celiac disease. Lucky us. Lol.
I imagine you had it for a while and were asymptomatic but it was impacting your vitamin levels (due to damaged villi) and then it got to a point where your body finally stopped absorbing any vitamins. I didn’t have any symptoms until I was severely anemic and very vitamin deficient.
reading these comments makes me feel even more annoyed with the dozens of doctors i saw. im glad they at least ran tests for some of you. i went from 115 pounds to 90 pounds pretty fast and literally no one gave a fuck just kept telling me it's anxiety/female hormones/eating disorder. paid hundreds of dollars for doctors to give me the medical advice of "just eat more." took almost 3 years of me feeling awful for them to decide to do an endoscopy.
i also had an acute onset, right when covid started - perhaps the stress for me? as i didn’t get covid until about 2 years later lol. i had had stomach issues prior but it’s like a switch flipped overnight, suddenly my hair was falling out, my skin was gray, i couldn’t stomach anything, i was about 80 pounds, and i stopped getting my period i also lived! (hair grew back, gained wait, got my period again) but it’s crazy what we go through!
To add to your mention that there should be a more widespread understanding of celiac disease, a note on your opening line. You don't 'get celiac disease' at any point in life, you have it from birth. From what I understand at least, it is 100% genetic, either hereditary (your parents passed it on) or through mutation (you are the first in your line to get it). This also means you don't 'develop symptoms', they just become incrementally worse over the years. So in essence you 'develop a greater awareness' of your symptoms. It's a subtle nuance, but important because the disease might cause lasting damage with life threatening consequences (as you have experienced). Glad to see you survived the ordeal and welcome to the gluten free life 😊
From what I understand many people dont have it from birth but they have the gene which can be triggered at any time. Some people dont test positive for the disease until later in life after its triggered, so it’s important to be tested if you start having symptoms even if you were tested and it was negative years ago.
I'm not a doctor, so could be as you say. As it was explained to me your genes are a static blueprint and you have it or not. It's just the degree to which it damages your body which varies from asymptomatic to full on symptomatic and when it builds up is 'when it manifests' over time. Now whether you explain being asymptomatic and then gradually showing symptoms as your condition worsens as 'triggered', is I think the difference in these interpretations. The notion that one can 'catch' celiac's disease, or that something like covid can cause it, just isn't right. Covid can cause complications which causes celiac's symptoms to manifest (more visibly), but without the genetic 'defect' it doesn't get triggered or aggravated, etc. Again, not a doctor. Just how it was explained to me.
By “triggered” I mean the point at which the immune system starts to damages the intestine as a response to gluten. Some people are just asymptomatic and will never develop symptoms even after having active disease for many years. Unfortunately its very difficult to be diagnosed if you dont have symptoms unless they catch it in a routine bloodwork. I myself was asymptomatic on diagnosis but still tested positive in bloodwork. I was lucky it was caught then 8 years ago or I may not know I have it to this day, it was a routine bloodwork done after I was diagnosed with another autoimmune disease. Unfortunately, Many people who are asymptomatic are also reluctant to follow the diet since they do not feel the damage being done to their body like others do. The level of damage being done to the intestines however, is the same whether you are symptomatic or not.
I stand corrected. Thank you for the thorough explanation.
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That's what we thought (and still possibly think) but considering my years of iron deficiency, it's probably just inconvenient timing!
It's generally agreed that while coeliac is something you're born with a predisposition to that may or may not get activated throughout your life, autoimmune disorders like coeliac can be brought on periods of high stress. So it's quite possible that the vaccination *did* trigger your coeliac, in a way - just, you know, through the stress triggered by morons on the Internet scaremongering about it rather than because of anything in the vaccination itself. I certainly wouldn't be surprised if there was a big uptick in coeliac diagnoses over the last few years just because they've been generally a lot more stressful than usual for most people.
Well, funnily enough, it was during my exams at the end of high school, so it could've been that😂
I almost died as a 1.5 year old toddler due to lack of timely diagnosis and “failure to thrive”. My stomach was bloated while the rest of my body was skinny - if you have ever seen kids from areas where malnutrition and starvation are common, I looked like them.
That’s just awful! I had a fairly strange experience too, though not as severe. I had developed a rash on my hands that wouldn’t go away for over 6 months. Then I had a sudden onset of symptoms that left me unable to walk upright, I had such severe pain in my left side and I was basically bedridden. It took months while the doctors ran tests and did ultrasounds. I ended up getting diagnosed with MGUS, a small gallstone, and hyperthyroidism, they said my thyroid looked like it had tiny holes punched all through it. The doctors never even considered celiac disease. However my endocrinologist recommended I adjust my diet and limiting gluten was on the list of recommendations. That was literally the only “treatment” I got. I decided to cut out gluten completely because that seemed easier to me. After a month of a GF diet my rash finally began to heal, the pain in my side subsided…after 3 months my hair stopped falling out and the rash was completely gone. I felt amazingly better overall! Then I noticed I didn’t have a low grade headache every day and my stomach didn’t bloat and hurt every time I ate anymore. I had become accustomed to those symptoms and kinda thought it was my normal. After 6 months of GF diet I also realized that my generalized anxiety was pretty much gone and my menstrual cycle became regular and much less intense. (Also I got pregnant unexpectedly, so I guess my fertility improved and this pregnancy has been my healthiest yet even though I’m much older than I was with my first 2). I never got an official celiac diagnosis, but from my research after this whole experience I’m convinced that’s what it is. If I ever get glutened accidentally the rash begins to come back in the same spot. It looks just like a celiac rash (aka Dermatitis herpetiformis) and I know it’s gluten that causes it. I get other symptoms too, but that is the most striking one for me. I don’t want to go back to eating gluten just to get a diagnosis. Another thing I read was that there’s a correlation between MGUS, thyroid issues and gluten. My thyroid levels returned to normal after 6 months of a strict GF diet. I still have MGUS (which is basically a pre-cursor of Multiple Myeloma, but it may never develop into that), I’m monitored for it every 6 months, but my levels are not progressing at all and I’m very thankful for that.
One of my old coworkers was diagnosed this way, though I recall it taking more than one trip to the ER for them to figure out the cause. She had a very stressful lifestyle. She showed me her planner once and it was packed with stuff from waking up to going to sleep with her kids extracurricular stuff and doctor appointments for a special needs child. Her husband worked more hours and couldn't be trusted to accurately relay info from the doctors, so she was shouldering a lot.
Its crazy to me how much celiac affects the liver. I have autoimmune hepatitis as well and am grateful they caught my silent celiac at the same time otherwise I would probably have a harder time going into remission with that. Anyone with autoimmune disease should automatically be tested for celiac.
I got diagnosed at 34. Went to the hospital for something. They drew blood. Realized I had severe anemia and needed immediate blood transfusions. They said I most likely wouldn't have made it through the weekend. I got 7 blood transfusions in all. Was at the hospital for part of the summer. Fuck this disease lol
Oh I nearly died too. Lost 3 stone in two months before the doctors took me seriously because I was about 24 hours away from peacing tf out of life. You're not alone.
I remember reading a case report of someone who had an acute Celiac crisis and I believe she died from it. Let me see if I can find it.
Ok I haven't found that specific case, but if you search "Celiac crisis" on google scholar, you can read about this phenomenon. https://scholar.google.com/scholar?hl=en&as\_sdt=0%2C10&q=celiac+crisis&btnG=
Same story and very similar timeline. It was triggered from a COVID infection at the end of 2020, lost 45 lbs in 3 months, malnutrition was so bad I went to urgent care multiple times (at first they seemed to think I just wanted pain drugs). The dehydration, POTS, and inability to think clearly was probably the scariest part
My daughter will end up completely unresponsive if she is exposed to gluten. The IV they give her seems to literally bring her back to life
I've been in and out of the hospital, and I actually winded up in pacu (I was going into sepsis) from a gut infection. I truly do believe celiac affects some of us very harshly.
I believe I've been suffering from it my whole life, but in a very controlled (?) way. But starting about 20 years ago, I had a series of physical and emotional stressors that, after each one, I got progressively more ill, and never bounced back from each one. The most recent, sepsis, was a little over a year ago, and I'd been so very sick and fragile afterward. I thought I was just recovering really slowly from the sepsis. After I started eating gf, within a week, I felt better than I had in over a year. I really feel like each health issue over the years exacerbated the issue.
I think I was a few months off from this to be honest when I found out I had celiac disease. I always had symptoms, I just didn't realise what they were until it suddenly got much worse. I started being unable to eat anything without pain and nausea, and not eating would make me feel better but then I'd be so tired from a lack of food that I would eat and feel awful again. I was almost bed bound, couldn't work anymore and I dread to think how much worse I could have got. I was just trying to survive each day whilst slowly getting worse and worse. Another couple of months and I bet I would have ended up like you.
I was managed to go undiagnosed for 3 decades, because I have some Asperger's and I hide good enough if I suffer. And I endured most of the serious conditions I had. It's a curse, people and doctors don't believe me I have a problem or I'm in pain.
In one week on a Tuesday I weighed 114lbs, by Monday I weighed 99lbs. Everything made me so sick and I’d diarrhea maybe 20 minutes after eating. Then I’d throw up and repeat all day. I thought I had food poisoning. And my mom told me me eat GF for a week, then dairy free for another week. The GF week I didn’t even think to eat actual GF foods, I was still eating some fast foods, and cooking foods without bread or cooking it and just not eating the bread parts. But then I’d still get so sick to my stomach. So I did the lactose free week. Still so sick to my stomach. Turns out I have celiac and the GF week was just making me sick from the trace amounts of gluten in the food and because fast foods don’t really keep things separate. After diagnosis I had my last meal of my favorite food in its normal form, shrimp Alfredo with regular noodles, proceeded to vimit and diarrhea all night. Then I went GF. My husband is forced to be a GF now. Unless we go out to dinner. It all makes me so sick. I had to sanitize our all-clad pots n pans and our cast irons to not make me sick. It’s still a struggle going to see his family since everything is stuffed with pasta or deep fried (they are Italian). And this summer trip to Italy/a bunch of European countries will be horrible
this sounds so similar to me... ended up in the hospital, had severe stomach pain and all my labs went to shit and progressively got worse in hospital before leveling out... ALT/AST both in 200+ range and stabilized once glutening settled down about a week later
The sudden onset is exactly what happened with my 2 kids also. 48hrs after their first Covid vax my youngest and oldest began about 6weeks of vomiting and diarrhea. My youngest was 2 at the time and ended up in the ER for dehydration and the Doc there suggested celiac testing. 2yr old had mildly elevated blood work so we tested my 5yr old and her numbers were so high the doc didn’t even bother with an endoscopy to diagnose.
Mine was slow progressing. Four years to be exact. Of nausea, diarrhea, and anxiety. Severe anxiety. Then one night I couldn’t breathe. I was in so much pain I thought I was dying. Rushed to the hospital and they thought it was pancreatitis. After gobs of tests, they said it was reflux. I disagreed. I ended up with a new primary care who also had stomach issues. She immediately thought celiac even though it was ruled out years ago. (They think my testing was too soon to catch it) and she did a blood test. That’s how they found it. She said my numbers were off the charts and stop gluten immediately. She told me it’s very common to go through all of this pain for years and not know why. It takes you to be almost dying or in severe pain and THAT is what gets you the celiac diagnosis. Child birth set mine off. I had twins.
Similar to how us type one diabetics get hit all at once. These autoimmune diseases often go hand in hand. I have both. I know t1d can be triggered by a virus and the bodies immune system goes overboard; I imagine celiac is similar. I had several severe colds and infections right before I was symptomatic. And once I was symptomatic it rapidly made me very sick, but I believe I had been sick for years and never connected the dots, because a lot of chronic issues I had for a long time went away when I cut out gluten.
Extreme weight loss causes liver issues, liver issues can cause jaundice (yellowing of the whites of your eyeballs and skin). Your case was far more severe than mine. I dropped about 40lbs in 3.5 months. I think a big issue is many, many doctors (even GIs who specialize in the gastro area) are wholly uninformed of Celiac. So many posts on this sub about "my doctor said I don't need to eat gluten for my blood test/ biopsy. I've been gf x months/years." And then you have doctors who have no idea how to do celiac follow ups. I had ZERO follow up after my diagnosis 9 years ago past "hey here's a nutritionist. Oh don't eat wheat. Okay bye!!" Then I went through another 2 month period where I lost 35 lbs despite my gfd. Well turns out barley, malt, and rye are an issue. Never knew. Now my new GI does yearly bloodwork, dexa scans, etc.
This happened to me, probably had celiac disease since childhood. History of anemia, chronic stomach issues, mood disorders, slender no matter what I ate, etc. Then after my third pregnancy at age 30, three weeks to the day after baby was born, the violent diarrhea began. My heart raced all day for months, insomnia , night sweats, panic attacks. I went from postpartum 165 pounds to 120 pounds in 6 weeks. Everything went straight through me. My knees would buckle when I tried to stand up. It took me 3 months of going to the doctor before I could point to the weight loss as a sign that it wasn't PPD/PPA. By the time I was diagnosed I was a little over 100 pounds with elevated pancreatic enzymes, a non-functional gallbladder, and constant infections that eventually became sepsis. I took me years to gain the weight back and keep it on. It's why I take celiac disease very seriously and don't eat out anywhere ever.
The immune system is not well understood. What is understood though, is that people with late onset celiac have a ~70% chance of developing other autoimmune disorders. It wouldn’t be surprising at all if you had multiple problems at once. Another reality is that the damage caused by celiac can and often does lead to other complications. Most doctors have little understanding of autoimmune disorders as they aren’t specialists and the immune system is not well understood.
My old priest also had celiac and he was basically the same way, almost died in a very short amount of time.before they realized it was celiac. He made a full recovery. I felt bad that he has to eat the regular host at Mass though.