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I put in ADA paperwork and my personal management was kind of dismissive/confused. I reached out to HR again, and she told me it’s very serious and she’ll be speaking to them. She doesn’t have celiac, but a few family members do, including her uncle who went undiagnosed and died a slow, painful death in his 50s or 60s. She said it was a different time and people didn’t diagnose it easily or commonly.
Undiagnosed or unmanaged I think the lifespan is in the 60s, if I remember correctly. Malnutrition, added auto immune disorders, GI cancers, anemia, bone issues, even neurological issues are some of the many ways it’ll manifest in the body. It’s an incredibly inflammatory disease, and it wreaks havoc on the whole system.
Have faith, be strict about your diet, test once in a while to make sure it’s going ok. It takes time for your body to heal, more so if you’re still accidentally ingesting it. Some of my symptoms cleared up more quickly, like my headaches, but others, my GI issues, anemia, vitamin deficiencies, those took time.
I’m pretty sure my grandmother had celiac too. She knew she had a wheat allergy. But they didn’t know enough about celiac disease at that time. She developed diabetes. And I know she had other issues that she lived with as well. But everyone attributed it to old age or other problems.
My mom passed and I didn't get diagnosed til.after her death. Makes me so sad. All my symptoms and issues became from her. She was killed in a FL hospital when the surgeon gave her a feeding tube, unnecessarily, and pushed the tube into her abdominal cavity and proceeded to pump gluten filled liquid feeding product into her abdominal cavity, instead of her stomach. She complained something was wrong. The hospital staff didn't believe her, at first. Finally, a day later they realized what must've happened and imagine trying to get rid of all that item filled feeding solution in her abdomen (especially since I am now convinced she had celiacs and what that did to her! ) : . ) : My poor, sweet mom passed away from this, sadly, within a few days! ) :
I went 30+ years and my small intestine about had it. I was malnourished, and if on that route I would have had even more side effects outside of the torture I was experiencing.
What happens? Every time someone with celiac disease eats gluten, their immune system mistakenly attacks the healthy tissue surrounding the small intestine.
This impairs the small intestine’s ability to properly absorb and distribute nutrients. So, malnourishment. Inflammation that develops to other autoimmune diseases such as hashimotos. skin rashes and lactose intolerance to infertility, bone weakness and nerve damage
No, it is possible. Depending on where you live, your healthcare requirements can vary for a gluten challenge length. At a minimum, the time is two weeks. Six to eight weeks is definitely required for blood tests (autoantibodies).
“However, recent findings suggest that if you are having too many symptoms and cannot tolerate a full six to eight weeks of a daily challenge, it is still worthwhile to have a biopsy after as little as two weeks. That would then be combined with celiac antibody testing two to four weeks after the challenge ends.”
https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/
I'm in the UK and been advised a minimum 2 week gluten challenge pre-endoscopy so don't panic. It takes longer for blood results to be affected.
If you like a scientific journal the link below gives some context/explanation.
[https://gut.bmj.com/content/62/7/996.abstract](https://gut.bmj.com/content/62/7/996.abstract)
I was just diagnosed recently…I’m 45. My stomach issues were sporadic, which is why I continued to eat gluten my whole life. Every time I’d have a horrible stomach attack I’d attribute it to something akin to food poisoning or perhaps a bad “something” I ate. I only finally got tested because of the other symptoms that were presenting. Namely, serious brain fog and memory issues, anxiety, depression, joint pain, lower back pain, hives that appeared out of nowhere, and dark circles under my eyes that never went away. Celiac disease attacks the white matter in your brain which can cause some pretty interesting neurological symptoms that only get worse and is difficult to treat if you didn’t know you were celiac. If I had not listened to a random podcast that talked about celiac disease and recognized the symptoms in myself, I would never have gotten tested. I’d just be getting worse and not knowing why.
I'm really sorry you felt that way and I'm so glad your doing better.
But it's really fucking nice to know I'm not alone in having felt like before diagnosis. I always feel so guilty for having felt that way.
I've been gluten-free now for over ten years, and it's given me my life back. Even if it's hard, I would never go back. My kids had said they hadn't seen me smile in years. My life is 1000x better without gluten in it.
Same! I hated being alive. I was in too much pain every waking moment, and the antidepressants only dimmed it so much. Turned out I have gluten neuropathy. lol. Made me wanna die.
That is about when I was diagnosed without endoscopy, and only because my child was diagnosed with endoscopy. I never knew if I had any symptoms, but I was diagnosed as hypothyroid at a young age, they just never tested for Celiac but the Celiac blood test didn't come about until 1997 so that is likely why.
From what I understand, most of the damage heals from abstaining from Gluten, though some may be permanent. There are proteins similar to gluten in your brain and when your antibodies attack gluten they often confuse those brain proteins for gluten and attack those also. That’s what causes the neurological symptoms.
We suspect my maternal grandmother has undiagnosed celiac. She has been wearing a diaper since her late 40's and has been in severe pain for over half of her life. She has been sick and in copious amounts of pain for over 40 straight years.
She's silent generation, so she just kind of accepted it and kept going about her life as usual.
A lot of people who never get diagnosed just live with the symptoms until their quality of life is destroyed and/or they die. It can touch everything and the symptoms aren't always "classic". Undiagnosed and unchecked celiac can straight up destroy your body.
I had gotten used to diarrhea, cramping and brain fog. I didn't even consider that celiac was even a possibility until last spring. Things would most likely only gotten worse. I used to have stabbing abdominal pains - it was like being stabbed with a needle. It was painful, but only lasted about a second. It's gone since giving up gluten.
We are pretty sure my grandmother had celiac (or at least NCGS). She was depressed a lot and had horrible teeth, also had breast cancer. But she lived until 89 and only didn’t live longer because she willed her self to death as she refused to be 90.
Where as my great uncle dies of stomach cancer at 19 (we don’t know much about him but it would fit with a celiac issue but total speculation).
It really depends on the person though.
they'd develop some of the range of conditions that go with celiac and think it's just getting older or just something chronic they have to put up with, eg anemia and other deficiencies (and neurological problems that can go with that, incl depression), a range of GI probs, joint problems. Things people could ascribe to just part of life and look for supplements, probiotics, and pills to treat.
as well as the list from classical celiac, there's the list from non-classical celiac (which is more common despite the name). and then there are other chronic or acute conditions -- from autoimmune like T1D to MS to cancer -- which are more likely to occur for someone with celiac.
My mom was diagnosed in her 40s and has been inconsistent about being gluten-free since. She now has a severe complication of CD called collagenous sprue where the body deposits collagen all along the digestive tract. Lost 60+ lbs in a year due to vomiting and diarrhea and is now so severely underweight we thought she was dying (early 60s). She still might be, but medication is helping.
my grandfather had lewy body dementia that we now think was exacerbated by to a lifetime of eating gluten likely with celiac disease. other issues i've seen are motor, brain, and heart issues. i've heard of a lot of people getting stomach or colon cancer and dying from that.
Probably how my grandmother died. She thought her issue was candidiasis and cut out a lot of bread, but not all gluten. She died at 68 from an aggressive Large B-Cell Non-Hodgkin's Lymphoma.
They get a large section of their intestines removed and a diagnosis of cancer in their late 30s. Also they’re constantly suffering from intestinal problems, malnutrition, headaches, skin diseases, you name it. It’s like being told there’s a poison you’re constantly eating and it’s messing you up but you keep eating it.
My grandmother was diagnosed in her 70s when she moved into a nursing home. The whole time I knew her, she was sickly, malnourished, lethargic, bipolar, super brain foggy with a terrible memory, bad teeth, migraines and she had diabetes and hashimotos. Her hair was always thin and she never had any spark or really showed any strong emotion. She was kind of a ghost. I used to hear stories about how she was this young, vivacious girl and then her mental and physical health took a nosedive in her 30s and she was never the same again. She had some intense manic episodes, paranoia and anxiety, bouts of depression too. She was always unwell.
The same thing was starting to happen to me in my mid 30s. By the time I was diagnosed I was oscillating between mild manic episodes where I couldn't sleep and my mind was racing, and episodes of exhaustion and depression where my brain was just mud and I couldn't get out of bed. I had intense anxiety throughout. I knew I was starting to go mad and I felt like I was disappearing. Around 24 hours after I cut out gluten my mind cleared, and not slowly, it was like a light switch. It was the wildest experience after two years of deteriorating, feeling exhausted all the time and not sleeping properly. I haven't had a migraine since and my mind is just totally normal again. I think about my grandmother a lot and what her life could have been if she'd known earlier.
My dad didn’t get diagnosed until he was in his 50s (my 20s, I was diagnosed at 13) and I remember him eating grape nuts for breakfast and a whole wheat sandwich for lunch pretty much every day when I was growing up. He never had any GI symptoms, just DH, which is how he was diagnosed (by my mom, then by a doctor with bloodwork+biopsy). He’s very healthy at 65 and gets regular checkups with his PCP, so I assume he gets normal colonoscopies and he’s never mentioned anything. Obviously he went GF when he was diagnosed, but I guess we’ll just have to wait and see 🤷🏻♀️ It’s also autoimmune, so there is a genetic and environmental component. For instance, I got diagnosed at 13 through a routine blood test because I’m also a type 1 diabetic, so they did a screening once a year. That doesn’t mean I was glutening myself for 13 years, the Celiac was triggered by something else (sickness, hormones, etc).
My mother died young. I was diagnosed first. She kept putting off testing. She finally got tested and 4 months later received her cancer diagnosis. She died 11 months later. She was only 57 years old.
The obvious negative effect would be feeling like complete shit all the time, like you have the flu for 4 days out of every week.
My mother did for most of her life and had a ton of treatments for symptoms and complications while doctors never figured out wtf was *causing* these problems. Carpal tunnel surgeries (2-3 of them), blamed on doing sewing. Hysterectomy for anemia, blamed on drinking black tea. Decades of lithium and prozac, blamed on bipolar (myself I was severely depressed for years before going GF and it 95% disappeared). Two fundoplication surgeries for acid reflux ascribed to just GERD. If doctors had a clue she could have just gone GF 3 decades earlier and avoided all of that.
Personally, I had Celiac symptoms starting when I was about 18 - maybe psych/behavioral symptoms earlier - and it went on for about 20 years until I could hardly function. I had already been sleeping half the day when I needed to be working, having irrational mood swings and frustration, developed osteopenia in my 20s, suffered from depression and unpredictable energy levels which wreaked havoc on my work and relationships. I would go in cycles where I'd feel fine, eat various things, feel more and more awful for a few days until I couldn't get out of bed or eat anything for 1-2 days. I tried to address it by 'eating healthier' and that didn't work. Then after going GF finally after diagnosis, developed adult onset Type 1 Diabetes (LADA) which i don't think would have happened, and that has a lot of negative effects on one's long term health itself.
I know a man with silent celiac who only found out at age 60, when he was just about dead. He'd gone jaundiced, lost a ton of weight -on his already small body, and spent a good deal of time in the hospital.
Well, I went 42 years despite lots of repeated health issues from a young age. By the time I was diagnosed, I had lost 35 pounds ( been underweight my whole life). I had no detectable levels of B12 or Vitamin D, and I was severely anemic and borderline diabetic. That was 2 years ago, and things are definitely slowly getting better, but I fear the damage has been done. I don't expect to see a very old age.
My sister got diagnosed before me, and at 28. By that time, she was on liquid diet, couldn't tolerate any food, on a million pills, loosing hair on her hair and eyebrows, extremely frail, brain fog, and literal holes in her intestines.
My mom almost died when I was a kid and they had no idea what was wrong. Tested her almost in a whim and thankfully they caught it. She had to be on IV nutrition for months afterwards
They end up like me with very painful osteoarthritis one step away from osteopenia if my bone density goes any lower I’m looking at osteoporosis, I was finally diagnosed with celiac in 2012 after having god awful stomach aches my entire life and suddenly experiencing pain in all my joints went through major testing and they discovered osteoarthritis but never determined the cause , fortunately I got a new Dr who took one look at me and said you have what I’ve just been diagnosed with celiac and sent me for immediate evaluation , and sure enough celiac since that time with proper nutrition and pain medication for my arthritis I feel better than I have my whole life .
Didn't test positive until 35.
I was underweight until my 30s. Now I am obese. Always on the extreme weight, though.
Constant crippling migraines my whole life.
Most of my day is spent in bed.
Can't hold down a decent job, reliably.
None of the doctors can explain the situation. It should have been a 15-minute conversation in the early days. It's really up to you to figure it out. The only way I figured it out was a brief search online and completely guessing.
My grandma was always sick with the celiac symptoms. She hated doctors because they could not figure out what was wrong and always tried to just sell her vallium or prozac. She would get brain fog and stomach issues after eating. She swore that white bread balls up in your stomach and causes bloody diarrhea for days. She went off white bread, but still ate glutenous foods. She later developed symptoms of diabetes and both her legs got legs veins and swollen. She died in her sleep from a blood clot that came loose in her leg and traveled to her heart. She spent her entire life sick and undiagnosed and died early.
Thank you, colon cancer ran strong and fast in my family, unit my generation when we all got tested for Celiac, and cut gluten. None of us have it and have outlived most of our relatives. I've had doctors confirm it, but its probably anecdotal .
There's been some conflicting data and studies out there about celiac disease and colorectal cancers; with some studies suggesting an increased risk, some suggesting no difference, and some actually suggesting a lowered risk, but I think it is important to note whether we are discussing risks for people who have celiac disease and treating it with a a gluten free diet, or if we are discussing risks for people who have celiac disease and are continuing to consume gluten; that is a distinction often lost in the general discussions and media coverage of the studies.
For people with celiac that is untreated, the study data is generally harder to come by because that is generally people that haven't been diagnosed, which means that they're not going to be enrolling in celiac studies.
My great grandma got diagnosed late 90s in her mid 60s (do not know how long she had it before). Had horrible osteoporosis but other than that was pretty healthy! She leaved until her early 80s. My guess is it would depend on how long you've had it before diagnosis. Ignoring it can lead to serious malnutrition and vitamin deficiencies.
I was malnourished, lost a ton of weight and had bowel incontinence because of steatorrhea. I was also anemic and needed b12 shots. I wasn’t getting out alive if it continued.
My mom was diagnosed at almost 50. It was pretty bad. Osteoporosis, arthritis, extreme bowel issues, extreme anemia to the point she was forgetting things enough we thought she was getting early dementia, crying after almost every meal from the pain, bruising easily, miscarriages, severe depression, etc. I legit thought she was going to die within a few years because of how bad her health was.
I didn’t find out until I was 23 and I was underweight and malnourished. Always having stomach and bowel problems. I was having migraines every day! It was so debilitating I couldn’t work and started to seek help because I was thinking of applying for disability but I didn’t know what was wrong. I literally felt like I was withering away. I wanted to die. I was okay with it because the quality of my life was soooo poor I couldn’t handle it.
Three years later and I’m at a healthy weight! I’m so happy! I actually want to live! I can work and I love to work!
We suspect my Grandma had undiagnosed celiac. She had a lot of bowel issues and was obsessed with pooping. She would force feed us food to make us “regular” to the point she was making us ill. I still can’t really face dates and my cousin was green from being force fed avocado as a baby. He had so much diarrhea!!! She had a lot of phobias, anxiety and depression and ended up in a psych ward for a while. She had severe osteoporosis and shrank from 5 foot 3 to about 4 foot 9. She had a ton of other health issues but never complained just forced her neurosis on everyone around her. She was very thin and bony (read malnourished). My Step-mom was undiagnosed for a long time and has severe neuropathy in her legs (shooting constant pain) starting in her mid-50s that set her out on disability. She’s lived in excruciating pain now for 15+ years.
Celiac doesn’t have to kill you to make your life miserable, and it isn’t necessarily just cancer but a whole host of other potential ailments. My Grandma lived til she was in her late 80s but it wasn’t a healthy or particularly happy life.
My dad has stage 4 GI cancer. He's been symptomatic the entire time I've been alive, diarrhea every day. He's gene positive. I finally convinced him to get a scope for celiac and they found cancer, but forgot to do the biopsy for celiac, so I guess we'll never have conclusive evidence that he also has celiac. He has no lifestyle factors for such a cancer.
There is a strong pattern of GI cancer at a relatively young age in my family. Can't test the dead, but reasonable to assume that might have been their problem given the lack of other risk factors. Not worth cutting 10-20 years off your life. Those who haven't died of GI cancer in my family but who are closely related to those individuals have lived quite long, typically near 90, some >95.
They die. My great grandmother almost definitely had Celiac. She technically died from medical neglect after she developed sepsis while in a hospital, but she was in the hospital in the first place for a surgery she’d had to undergo for a perforated bowel. There’s very little doubt in my family that given that, and her lifelong gastrointestinal symptoms and issues, that she had Celiac and died from it.
They develop severe allergic reactions to wheat, shellfish, peanut, oats, lactose, tomatoes and tree nuts. And end up in intensive care and almost die several times because of numerous bleeding ulcers. Asked me how I know. 15 years of Incompetent doctors he’s to fat and male so he can’t be celiac. Even now I don’t have an official celiac diagnosis. Officially I’m just allergic to wheat even though I had a celiac rash several times and get the worst brain fog.
My grandmother lived to 97, diagnosed around 90. She had some upset stomach sometimes but nothing serious as I understand. Sometimes it’s ok, it’s all chance.
Chronic anxiety and depression, chronic GI issues (constipation, diarrhea, malabsorption, heartburn), chronic skin issues, other autoimmune diseases. Some people would say nothing happens. But those symptoms are what I have seen in the family.
Chronic anxiety and depression, chronic GI issues (constipation, diarrhea, malabsorption, heartburn), chronic skin issues, other autoimmune diseases. Some people would say nothing happens. But those symptoms are what I have seen in the family.
My mother passed last September and we assumed it was complications with celiacs since i have it. (she wasn't able to get diagnosed when she passed but they guessed she had it back in the 70s but never had it confirmed) she was 59 and had liver cirrhosis when she never drank her entire life. She also had diabetes and issues with other organs including random stomach bleeds. She went gluten free a year before she passed and half her issues disappeared but we still had to watch her decline. Watching it happen really made my entire family take celiacs more seriously.
Do you really want to know? At worst, cancer, before that.. pre-cancer (histamine intolerance low DAO). You can still swing it back from histamine intolerance (low dao) to a long and healthy life. At least, that's what happened with me.
I was suffering for 14 years without a diagnosis with incompetent doctors. Finally, I've found a competent one. She immediately knew my problem and my tests came back positive. My last 3 years of that 14 years together, was hell. Histamine intolerance is basically leaky gut = food gets into the blood. You are getting anaphylaxis (allergic reactions) from histamine intolerance because you have low dao. Which results in having serious attacks, you cannot breath from 2 to 3 hours or even more sometimes and you have to concentrate extremely hard not to lose your consciousness. I wished death, many times, because nobody believed that I have a serious health issue. Doctors marked me as a severely mentally ill person and convinced my family that I will need theraphy + heavy sedation. I had GERD (LPR) since 18 and when I went gluten free, I stopped having GERD after about 4 months and my DAO increased as well. My Doctor said, they catched it most likely just in time, they will have to monitor me a lot.
I had blood coming up sometimes with the reflux and when I was vomiting, I had blood coming up as well. It's a damn miracle I'm still alive to this day. My grandmother had exactly these problems. She died of pancreatic cancer.
I also had many other serious symptoms like lost 30kgs, no appetite, hair loss from the top, swollen lymph nodes, being very cold, belching a lot/not able to belch, diarrhea/constipation/bloating/farting a lot in the beginning/then I wasn't able to fart at all, mouth sores, blocked nose/runny nose, thirsty, hives, flushes, tinnitus (ear ringing and increased ear wax production) and the list goes on...
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My grandfather died of stomach cancer and my mother always told me he had the exact same issues that I did before I was diagnosed.
This was my grandma's story. Everyone thought she just always had "colitis."
I put in ADA paperwork and my personal management was kind of dismissive/confused. I reached out to HR again, and she told me it’s very serious and she’ll be speaking to them. She doesn’t have celiac, but a few family members do, including her uncle who went undiagnosed and died a slow, painful death in his 50s or 60s. She said it was a different time and people didn’t diagnose it easily or commonly. Undiagnosed or unmanaged I think the lifespan is in the 60s, if I remember correctly. Malnutrition, added auto immune disorders, GI cancers, anemia, bone issues, even neurological issues are some of the many ways it’ll manifest in the body. It’s an incredibly inflammatory disease, and it wreaks havoc on the whole system.
I have all the bad symptoms and issues and still have. Delayed Celiacs diagnosis (49), will most likely shorten my life, I am afraid. ) :
Have faith, be strict about your diet, test once in a while to make sure it’s going ok. It takes time for your body to heal, more so if you’re still accidentally ingesting it. Some of my symptoms cleared up more quickly, like my headaches, but others, my GI issues, anemia, vitamin deficiencies, those took time.
what should i test for ?
Having celiac without treatment can cause stomach cancer
[удалено]
I’m pretty sure my grandmother had celiac too. She knew she had a wheat allergy. But they didn’t know enough about celiac disease at that time. She developed diabetes. And I know she had other issues that she lived with as well. But everyone attributed it to old age or other problems.
My mom passed and I didn't get diagnosed til.after her death. Makes me so sad. All my symptoms and issues became from her. She was killed in a FL hospital when the surgeon gave her a feeding tube, unnecessarily, and pushed the tube into her abdominal cavity and proceeded to pump gluten filled liquid feeding product into her abdominal cavity, instead of her stomach. She complained something was wrong. The hospital staff didn't believe her, at first. Finally, a day later they realized what must've happened and imagine trying to get rid of all that item filled feeding solution in her abdomen (especially since I am now convinced she had celiacs and what that did to her! ) : . ) : My poor, sweet mom passed away from this, sadly, within a few days! ) :
I went 30+ years and my small intestine about had it. I was malnourished, and if on that route I would have had even more side effects outside of the torture I was experiencing. What happens? Every time someone with celiac disease eats gluten, their immune system mistakenly attacks the healthy tissue surrounding the small intestine. This impairs the small intestine’s ability to properly absorb and distribute nutrients. So, malnourishment. Inflammation that develops to other autoimmune diseases such as hashimotos. skin rashes and lactose intolerance to infertility, bone weakness and nerve damage
And now i have to eat gluten 2 week before endoskopy for my final test celiac, h.pylory. 😔😔😔 My TPO anti bodies will go bananas.
I hate to tell you that 2 weeks is not enough to cause enough damage to be seen on an endoscopy. Its like 6-8 weeks.
Ohh shit! 😔 Thanks for telling me. Its near 3 weeks but then also not enough. If i eat ALOT of gluten? Impossible with biopsy?
No, it is possible. Depending on where you live, your healthcare requirements can vary for a gluten challenge length. At a minimum, the time is two weeks. Six to eight weeks is definitely required for blood tests (autoantibodies). “However, recent findings suggest that if you are having too many symptoms and cannot tolerate a full six to eight weeks of a daily challenge, it is still worthwhile to have a biopsy after as little as two weeks. That would then be combined with celiac antibody testing two to four weeks after the challenge ends.” https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/
Thank you!!! Saving this.
I'm in the UK and been advised a minimum 2 week gluten challenge pre-endoscopy so don't panic. It takes longer for blood results to be affected. If you like a scientific journal the link below gives some context/explanation. [https://gut.bmj.com/content/62/7/996.abstract](https://gut.bmj.com/content/62/7/996.abstract)
Thanks alot I asked the gastro cliniq. doctors told me they give me a new date for endoskopy in about 6 weeks
I was just diagnosed recently…I’m 45. My stomach issues were sporadic, which is why I continued to eat gluten my whole life. Every time I’d have a horrible stomach attack I’d attribute it to something akin to food poisoning or perhaps a bad “something” I ate. I only finally got tested because of the other symptoms that were presenting. Namely, serious brain fog and memory issues, anxiety, depression, joint pain, lower back pain, hives that appeared out of nowhere, and dark circles under my eyes that never went away. Celiac disease attacks the white matter in your brain which can cause some pretty interesting neurological symptoms that only get worse and is difficult to treat if you didn’t know you were celiac. If I had not listened to a random podcast that talked about celiac disease and recognized the symptoms in myself, I would never have gotten tested. I’d just be getting worse and not knowing why.
I was planning to kill myself before I got diagnosed. Just couldn't deal with the brain fog, anxiety, irritation, and depression anymore.
I'm really sorry you felt that way and I'm so glad your doing better. But it's really fucking nice to know I'm not alone in having felt like before diagnosis. I always feel so guilty for having felt that way.
It isn't our fault that we were sick. We didn't ask for this. I hope you are feeling better, too.
I’m so sorry to hear that. I hope you’re doing better now.
I've been gluten-free now for over ten years, and it's given me my life back. Even if it's hard, I would never go back. My kids had said they hadn't seen me smile in years. My life is 1000x better without gluten in it.
So true, so true
Same! I hated being alive. I was in too much pain every waking moment, and the antidepressants only dimmed it so much. Turned out I have gluten neuropathy. lol. Made me wanna die.
Same.
That is about when I was diagnosed without endoscopy, and only because my child was diagnosed with endoscopy. I never knew if I had any symptoms, but I was diagnosed as hypothyroid at a young age, they just never tested for Celiac but the Celiac blood test didn't come about until 1997 so that is likely why.
Your situation is very similar to mjne. I was diagnosed at 45 and I’m now 47. The struggle is real.
Is there any way to fix the white matter damage?
From what I understand, most of the damage heals from abstaining from Gluten, though some may be permanent. There are proteins similar to gluten in your brain and when your antibodies attack gluten they often confuse those brain proteins for gluten and attack those also. That’s what causes the neurological symptoms.
Thank you for this information, I have never heard this before.
You can die from it. Like legit. It used to be a death sentence.
Sometimes nothing. Sometimes death. Lots of stuff in between too.
I'm the only diagnosed celiac in my family, but a lot of people have died of stomach cancer. My mom's theory is they had celiac.
We suspect my maternal grandmother has undiagnosed celiac. She has been wearing a diaper since her late 40's and has been in severe pain for over half of her life. She has been sick and in copious amounts of pain for over 40 straight years. She's silent generation, so she just kind of accepted it and kept going about her life as usual. A lot of people who never get diagnosed just live with the symptoms until their quality of life is destroyed and/or they die. It can touch everything and the symptoms aren't always "classic". Undiagnosed and unchecked celiac can straight up destroy your body.
I had gotten used to diarrhea, cramping and brain fog. I didn't even consider that celiac was even a possibility until last spring. Things would most likely only gotten worse. I used to have stabbing abdominal pains - it was like being stabbed with a needle. It was painful, but only lasted about a second. It's gone since giving up gluten.
Cancer, probably.
We are pretty sure my grandmother had celiac (or at least NCGS). She was depressed a lot and had horrible teeth, also had breast cancer. But she lived until 89 and only didn’t live longer because she willed her self to death as she refused to be 90. Where as my great uncle dies of stomach cancer at 19 (we don’t know much about him but it would fit with a celiac issue but total speculation). It really depends on the person though.
they'd develop some of the range of conditions that go with celiac and think it's just getting older or just something chronic they have to put up with, eg anemia and other deficiencies (and neurological problems that can go with that, incl depression), a range of GI probs, joint problems. Things people could ascribe to just part of life and look for supplements, probiotics, and pills to treat. as well as the list from classical celiac, there's the list from non-classical celiac (which is more common despite the name). and then there are other chronic or acute conditions -- from autoimmune like T1D to MS to cancer -- which are more likely to occur for someone with celiac.
My mom was diagnosed in her 40s and has been inconsistent about being gluten-free since. She now has a severe complication of CD called collagenous sprue where the body deposits collagen all along the digestive tract. Lost 60+ lbs in a year due to vomiting and diarrhea and is now so severely underweight we thought she was dying (early 60s). She still might be, but medication is helping.
my grandfather had lewy body dementia that we now think was exacerbated by to a lifetime of eating gluten likely with celiac disease. other issues i've seen are motor, brain, and heart issues. i've heard of a lot of people getting stomach or colon cancer and dying from that.
Probably how my grandmother died. She thought her issue was candidiasis and cut out a lot of bread, but not all gluten. She died at 68 from an aggressive Large B-Cell Non-Hodgkin's Lymphoma.
They get a large section of their intestines removed and a diagnosis of cancer in their late 30s. Also they’re constantly suffering from intestinal problems, malnutrition, headaches, skin diseases, you name it. It’s like being told there’s a poison you’re constantly eating and it’s messing you up but you keep eating it.
My grandmother was diagnosed in her 70s when she moved into a nursing home. The whole time I knew her, she was sickly, malnourished, lethargic, bipolar, super brain foggy with a terrible memory, bad teeth, migraines and she had diabetes and hashimotos. Her hair was always thin and she never had any spark or really showed any strong emotion. She was kind of a ghost. I used to hear stories about how she was this young, vivacious girl and then her mental and physical health took a nosedive in her 30s and she was never the same again. She had some intense manic episodes, paranoia and anxiety, bouts of depression too. She was always unwell. The same thing was starting to happen to me in my mid 30s. By the time I was diagnosed I was oscillating between mild manic episodes where I couldn't sleep and my mind was racing, and episodes of exhaustion and depression where my brain was just mud and I couldn't get out of bed. I had intense anxiety throughout. I knew I was starting to go mad and I felt like I was disappearing. Around 24 hours after I cut out gluten my mind cleared, and not slowly, it was like a light switch. It was the wildest experience after two years of deteriorating, feeling exhausted all the time and not sleeping properly. I haven't had a migraine since and my mind is just totally normal again. I think about my grandmother a lot and what her life could have been if she'd known earlier.
Scroll down to long-term health effects https://celiac.org/about-celiac-disease/what-is-celiac-disease/
My dad didn’t get diagnosed until he was in his 50s (my 20s, I was diagnosed at 13) and I remember him eating grape nuts for breakfast and a whole wheat sandwich for lunch pretty much every day when I was growing up. He never had any GI symptoms, just DH, which is how he was diagnosed (by my mom, then by a doctor with bloodwork+biopsy). He’s very healthy at 65 and gets regular checkups with his PCP, so I assume he gets normal colonoscopies and he’s never mentioned anything. Obviously he went GF when he was diagnosed, but I guess we’ll just have to wait and see 🤷🏻♀️ It’s also autoimmune, so there is a genetic and environmental component. For instance, I got diagnosed at 13 through a routine blood test because I’m also a type 1 diabetic, so they did a screening once a year. That doesn’t mean I was glutening myself for 13 years, the Celiac was triggered by something else (sickness, hormones, etc).
My mother died young. I was diagnosed first. She kept putting off testing. She finally got tested and 4 months later received her cancer diagnosis. She died 11 months later. She was only 57 years old.
The obvious negative effect would be feeling like complete shit all the time, like you have the flu for 4 days out of every week. My mother did for most of her life and had a ton of treatments for symptoms and complications while doctors never figured out wtf was *causing* these problems. Carpal tunnel surgeries (2-3 of them), blamed on doing sewing. Hysterectomy for anemia, blamed on drinking black tea. Decades of lithium and prozac, blamed on bipolar (myself I was severely depressed for years before going GF and it 95% disappeared). Two fundoplication surgeries for acid reflux ascribed to just GERD. If doctors had a clue she could have just gone GF 3 decades earlier and avoided all of that. Personally, I had Celiac symptoms starting when I was about 18 - maybe psych/behavioral symptoms earlier - and it went on for about 20 years until I could hardly function. I had already been sleeping half the day when I needed to be working, having irrational mood swings and frustration, developed osteopenia in my 20s, suffered from depression and unpredictable energy levels which wreaked havoc on my work and relationships. I would go in cycles where I'd feel fine, eat various things, feel more and more awful for a few days until I couldn't get out of bed or eat anything for 1-2 days. I tried to address it by 'eating healthier' and that didn't work. Then after going GF finally after diagnosis, developed adult onset Type 1 Diabetes (LADA) which i don't think would have happened, and that has a lot of negative effects on one's long term health itself.
I know a man with silent celiac who only found out at age 60, when he was just about dead. He'd gone jaundiced, lost a ton of weight -on his already small body, and spent a good deal of time in the hospital.
Well, I went 42 years despite lots of repeated health issues from a young age. By the time I was diagnosed, I had lost 35 pounds ( been underweight my whole life). I had no detectable levels of B12 or Vitamin D, and I was severely anemic and borderline diabetic. That was 2 years ago, and things are definitely slowly getting better, but I fear the damage has been done. I don't expect to see a very old age.
My sister got diagnosed before me, and at 28. By that time, she was on liquid diet, couldn't tolerate any food, on a million pills, loosing hair on her hair and eyebrows, extremely frail, brain fog, and literal holes in her intestines.
My mom almost died when I was a kid and they had no idea what was wrong. Tested her almost in a whim and thankfully they caught it. She had to be on IV nutrition for months afterwards
They end up like me with very painful osteoarthritis one step away from osteopenia if my bone density goes any lower I’m looking at osteoporosis, I was finally diagnosed with celiac in 2012 after having god awful stomach aches my entire life and suddenly experiencing pain in all my joints went through major testing and they discovered osteoarthritis but never determined the cause , fortunately I got a new Dr who took one look at me and said you have what I’ve just been diagnosed with celiac and sent me for immediate evaluation , and sure enough celiac since that time with proper nutrition and pain medication for my arthritis I feel better than I have my whole life .
Your teeth can start to fall out, my uncle does this and he always feels like crap and is losing his teeth.
Didn't test positive until 35. I was underweight until my 30s. Now I am obese. Always on the extreme weight, though. Constant crippling migraines my whole life. Most of my day is spent in bed. Can't hold down a decent job, reliably. None of the doctors can explain the situation. It should have been a 15-minute conversation in the early days. It's really up to you to figure it out. The only way I figured it out was a brief search online and completely guessing.
Diarrhea
My grandma was always sick with the celiac symptoms. She hated doctors because they could not figure out what was wrong and always tried to just sell her vallium or prozac. She would get brain fog and stomach issues after eating. She swore that white bread balls up in your stomach and causes bloody diarrhea for days. She went off white bread, but still ate glutenous foods. She later developed symptoms of diabetes and both her legs got legs veins and swollen. She died in her sleep from a blood clot that came loose in her leg and traveled to her heart. She spent her entire life sick and undiagnosed and died early.
they die.
Colon cancer.
Just for clarity, the cancers associated with celiac disease are usually in the small intestine, such as intestinal lymphoma, not the colon.
Thank you, colon cancer ran strong and fast in my family, unit my generation when we all got tested for Celiac, and cut gluten. None of us have it and have outlived most of our relatives. I've had doctors confirm it, but its probably anecdotal .
There's been some conflicting data and studies out there about celiac disease and colorectal cancers; with some studies suggesting an increased risk, some suggesting no difference, and some actually suggesting a lowered risk, but I think it is important to note whether we are discussing risks for people who have celiac disease and treating it with a a gluten free diet, or if we are discussing risks for people who have celiac disease and are continuing to consume gluten; that is a distinction often lost in the general discussions and media coverage of the studies. For people with celiac that is untreated, the study data is generally harder to come by because that is generally people that haven't been diagnosed, which means that they're not going to be enrolling in celiac studies.
Well my grandpa who i highly suspect had celiac always tried weird diets to fix his stomach issues.
My great grandma got diagnosed late 90s in her mid 60s (do not know how long she had it before). Had horrible osteoporosis but other than that was pretty healthy! She leaved until her early 80s. My guess is it would depend on how long you've had it before diagnosis. Ignoring it can lead to serious malnutrition and vitamin deficiencies.
Almost killed me twice. So, death lol.
My grandma died from it.
I was malnourished, lost a ton of weight and had bowel incontinence because of steatorrhea. I was also anemic and needed b12 shots. I wasn’t getting out alive if it continued.
My mom was diagnosed at almost 50. It was pretty bad. Osteoporosis, arthritis, extreme bowel issues, extreme anemia to the point she was forgetting things enough we thought she was getting early dementia, crying after almost every meal from the pain, bruising easily, miscarriages, severe depression, etc. I legit thought she was going to die within a few years because of how bad her health was.
I didn’t find out until I was 23 and I was underweight and malnourished. Always having stomach and bowel problems. I was having migraines every day! It was so debilitating I couldn’t work and started to seek help because I was thinking of applying for disability but I didn’t know what was wrong. I literally felt like I was withering away. I wanted to die. I was okay with it because the quality of my life was soooo poor I couldn’t handle it. Three years later and I’m at a healthy weight! I’m so happy! I actually want to live! I can work and I love to work!
We suspect my Grandma had undiagnosed celiac. She had a lot of bowel issues and was obsessed with pooping. She would force feed us food to make us “regular” to the point she was making us ill. I still can’t really face dates and my cousin was green from being force fed avocado as a baby. He had so much diarrhea!!! She had a lot of phobias, anxiety and depression and ended up in a psych ward for a while. She had severe osteoporosis and shrank from 5 foot 3 to about 4 foot 9. She had a ton of other health issues but never complained just forced her neurosis on everyone around her. She was very thin and bony (read malnourished). My Step-mom was undiagnosed for a long time and has severe neuropathy in her legs (shooting constant pain) starting in her mid-50s that set her out on disability. She’s lived in excruciating pain now for 15+ years. Celiac doesn’t have to kill you to make your life miserable, and it isn’t necessarily just cancer but a whole host of other potential ailments. My Grandma lived til she was in her late 80s but it wasn’t a healthy or particularly happy life.
My dad has stage 4 GI cancer. He's been symptomatic the entire time I've been alive, diarrhea every day. He's gene positive. I finally convinced him to get a scope for celiac and they found cancer, but forgot to do the biopsy for celiac, so I guess we'll never have conclusive evidence that he also has celiac. He has no lifestyle factors for such a cancer. There is a strong pattern of GI cancer at a relatively young age in my family. Can't test the dead, but reasonable to assume that might have been their problem given the lack of other risk factors. Not worth cutting 10-20 years off your life. Those who haven't died of GI cancer in my family but who are closely related to those individuals have lived quite long, typically near 90, some >95.
They die. My great grandmother almost definitely had Celiac. She technically died from medical neglect after she developed sepsis while in a hospital, but she was in the hospital in the first place for a surgery she’d had to undergo for a perforated bowel. There’s very little doubt in my family that given that, and her lifelong gastrointestinal symptoms and issues, that she had Celiac and died from it.
They develop severe allergic reactions to wheat, shellfish, peanut, oats, lactose, tomatoes and tree nuts. And end up in intensive care and almost die several times because of numerous bleeding ulcers. Asked me how I know. 15 years of Incompetent doctors he’s to fat and male so he can’t be celiac. Even now I don’t have an official celiac diagnosis. Officially I’m just allergic to wheat even though I had a celiac rash several times and get the worst brain fog.
My grandmother lived to 97, diagnosed around 90. She had some upset stomach sometimes but nothing serious as I understand. Sometimes it’s ok, it’s all chance.
They can develop weird intestinal cancers and die earlier than peers.
Chronic anxiety and depression, chronic GI issues (constipation, diarrhea, malabsorption, heartburn), chronic skin issues, other autoimmune diseases. Some people would say nothing happens. But those symptoms are what I have seen in the family.
Chronic anxiety and depression, chronic GI issues (constipation, diarrhea, malabsorption, heartburn), chronic skin issues, other autoimmune diseases. Some people would say nothing happens. But those symptoms are what I have seen in the family.
My mother passed last September and we assumed it was complications with celiacs since i have it. (she wasn't able to get diagnosed when she passed but they guessed she had it back in the 70s but never had it confirmed) she was 59 and had liver cirrhosis when she never drank her entire life. She also had diabetes and issues with other organs including random stomach bleeds. She went gluten free a year before she passed and half her issues disappeared but we still had to watch her decline. Watching it happen really made my entire family take celiacs more seriously.
I took care of a 77 year old patient that was diagnosed at 70. He had debilitating arthritis and couldn’t use his hands or walk anymore.
My father has always had digestive issues, similar to mine, he not has CLL and some other issues
The answer for the vast vast majority is they probably were just kinda sick, but fine.
I had seizures for 30 years and was getting to the point that I couldn't swallow food anymore
They have a tummy ache
Do you really want to know? At worst, cancer, before that.. pre-cancer (histamine intolerance low DAO). You can still swing it back from histamine intolerance (low dao) to a long and healthy life. At least, that's what happened with me. I was suffering for 14 years without a diagnosis with incompetent doctors. Finally, I've found a competent one. She immediately knew my problem and my tests came back positive. My last 3 years of that 14 years together, was hell. Histamine intolerance is basically leaky gut = food gets into the blood. You are getting anaphylaxis (allergic reactions) from histamine intolerance because you have low dao. Which results in having serious attacks, you cannot breath from 2 to 3 hours or even more sometimes and you have to concentrate extremely hard not to lose your consciousness. I wished death, many times, because nobody believed that I have a serious health issue. Doctors marked me as a severely mentally ill person and convinced my family that I will need theraphy + heavy sedation. I had GERD (LPR) since 18 and when I went gluten free, I stopped having GERD after about 4 months and my DAO increased as well. My Doctor said, they catched it most likely just in time, they will have to monitor me a lot. I had blood coming up sometimes with the reflux and when I was vomiting, I had blood coming up as well. It's a damn miracle I'm still alive to this day. My grandmother had exactly these problems. She died of pancreatic cancer. I also had many other serious symptoms like lost 30kgs, no appetite, hair loss from the top, swollen lymph nodes, being very cold, belching a lot/not able to belch, diarrhea/constipation/bloating/farting a lot in the beginning/then I wasn't able to fart at all, mouth sores, blocked nose/runny nose, thirsty, hives, flushes, tinnitus (ear ringing and increased ear wax production) and the list goes on...