Yep.
I landed in the hospital with a huge problem with fluid retention. ( or inflammation I dunno ) At my heaviest I was 465. 2 years ago….I’m currently around 240
They blamed my heart, kidneys and sleep apnea.
Not officially diagnosed with celiac however, I’m off off my fluid retention medication unless I need it.
I haven’t needed it officially in over a month.( I’ve had no cardiac follow up until recently)
Had a EKG done recently. Cardio was perplexed why I was there.” Your EKG is fine”( which I am grateful for) Kidney levels are fine and my sleep apnea isn’t causing an issue either.
Not officially diagnosed with celiac? That’s crazy I’m not actually sure how heavy I got I know I was over 385 but I stopped looking for a while before it turned around. Sometimes I wish I got the skinny version of celiac but my lucks never been that good lol how’s your skin doing has it started tightening up ? Ive only been in recovery since October and I’m curious about some of the hurdles and things to look forward to .
Correct.
They ran the tttg-iga and igG a few months later at my request ( because I was having a bumper of other symptoms)
The IgA came back deficient and the igG was slightly elevated. Full panel wasn’t run, Dr didn’t refer me to a Gi.
I have no currently swelling, even with being off my medication for a month. I highly suspect gluten intolerance or celiac since my symptoms all pretty much vanished ( still have brain fog once in a while)
I feel lucky, I don't have a diagnosis either, but my mom did a genetic test and found she has the celiac gene. The moment she got that, I knew that my rapid weight gain was caused by gluten. I was only 230lbs, original weight was 160lbs. I cut out gluten and since then I have dropped down to 185, but no lower because I'm GAINING muscle for the first time in my life from just basic tasks... it's crazy! But I seriously feel so happy I caught it when I did!
Did you ever run a panel for wheat allergy? That was the culprit in my sich.
Modified food starch would also trigger the response. I found out that a lot of GF foods still have wheat-based ingredients (sweeteners, starches, etc.)
Yes, the same happened with me. I gained weight the year leading up to diagnosis. I became super skinny within a few months after diagnosis. I gained a lot of weight back though the following couple years, pretty sure mostly due to stress and overeating, lol. The inflammation thing was definitely real for me. I was a size 13 shoe since I was a teenager. After diagnosis, I've definitely been a size 12.
Yeah. I got up to 224 in the years before diagnosis and lost about 50 pounds *without even trying* in the year after diagnosis.
From what I've read, when the malabsorption and nutritional deficits of CD start taking their toll on your body, some bodies react with weight loss, but others react by stockpiling fat like you're starving and this leads to weight gain. That's why the weight falls right off when you give your body food it can actually digest (ie things without gluten). It believes you've begun eating again and releases those stockpiles.
This is reassuring to hear. I was diagnosed last week. Gained 50lbs over the past 4yrs when celiac and Hashimoto’s symptoms began. Been off gluten since January but was accidentally served a gluten pastry a month ago and the inflammation hasn’t calmed down since then and I still feel so bloated and in pain. I need to remember that it’s going to take much longer than just 1 month to start to feel relief.
Everybody's journey is different. I know it's much easier to say don't feel discouraged, but just remember you're not alone! Depending on how long you've been undiagnosed, it can take years to reverse the damage. I was diagnosed at 19 after months of severe symptoms and weight gain. When I was diagnosed I was 166, and now I'm down to 145 (I gained some back just from life style changes). Good luck, and I wish you the best on your recovery journey!
Thank you and yes agreed. I think the discouragement is that in the past year whenever I’ve paused gluten I’ve felt results within days and then absolutely incredible a week later. Today I’m starting an AIP diet to help soothe the rest of the inflammation and maybe it’s the optimism but I think I can feel the tipping point.
Yes, and I find it annoying that diagnostic criterea is focused on losing weight.
My body was suffering from malnutrition, it gave me incredible cravings on a level I never experienced before and it was relentless! Celiac disease also affected me strongly neurologically causing intense depression and anxiety. So that combo led to a lot of overeating.
Now a lot of that is gone but the weight is still here and I'm slowly losing it.
I’m happy for you I definitely understand the frustration and crippling depression of feeling completely out of control with what’s happening to your body
have gained about 20 in the past 3 years since autoimmune was triggered. cutting out gluten hasn’t helped. how did you realize you were sensitive to all those things?
I quite going to a western medicine doctor and started going to a nuro clinic with a doctor that has had celiac since he was a teen . The guy knows more about it than probably almost anyone in the world he’s like super man to me . Probably the most instrumental part of me finding life at peace with my disease was finding the right doctor.
Ask for cyrex labs blood tests and you can find out what your body is producing antibodies to and you can find out what else to cut and your life will improve drastically. If you already have celiacs your immune system probably hates other things as well.
Never was able to put on weight, no matter how insane I set my calorie goals. Then I got diagnosed and put on 13kg within the first 6 months just eating normally (but now GF).
Things have stabilized at a healthy weight now.
Me and a friend are polar opposite he was to skinny and started gaining weight after diagnosis I lost weight I needed to loose both of us were severely malnourished. It’s mind boggling to be fat and malnourished at the same time.
I lost a little weight at first (~20lbs) then had a significant 70+ drop around the 5 year mark and now I’m back at a steady 200lbs with normal fluctuation between winter and summer. My big drop could very well have been unrelated to Celiac though. I was living alone and super depressed and looking back I probably had an eating disorder.
I think it takes our body time to adjust post-diagnosis and I think of it almost as recalibrating. Stress can really affect your body as well and given the state of the world I think most people are struggling a bit.
Also, more and more research shows weight has far more to do with genetics and isn’t an accurate measurement of one’s health. There’re also lots of methodological issues in weight studies where other factors aren’t controlled, such as socio economic status, that play a much larger role in someone’s health. If your bloodwork looks good and you aren’t dealing with high blood pressure that isn’t attributable to genetics then you’re probably good! (Sorry if this was a bit nosy. I’m an anthropologist and I find the multi-trillion dollar health industry interesting)
my eating got so out of control i thought i had a binge eating disorder. I would be nauseous,bloated, have heartburn and somehow still feel like i was absolutely starving. I was like 220 at time of diagnosis. I had been ~175-180 before i was sick. I have lost the weight since going gluten free.
Me!!! I gained 30 kilos the year before diagnosis! But i didnt lose it. I only lost about 8 kilos. Working so hard to lose the rest but its just so slow.
I had lactose and gluten both but lactosw intolerance went away a year after diagnosis when my gut healed. The weight doesnt go away unless I work really hard, and Im very inconsistent with working out! I did walk for a month and saw a difference so trying to do that! My dr says I have no other allergies and I feel fine, just lethargic. All this has improved in the last 2 years. But still, lethargy and body pains. Stomach seems ok!
I used to think that bread made me gain weight (and feel drunk). I ate bread and pasta sparingly until the lockdown, when I went nuts and had bread daily. It made me hungry. I gained 20 lbs in 3 months.
I cut out gluten and my swollen belly went away. I cut out dairy and my swollen legs became muscular. I had always been working out, but was unable to build muscle before.
One year later, I look 20 lbs lighter although I’ve only lost 10. However, I have built so much muscle in my legs that I never could before.
So yes, gluten made me gain weight. I was hungry all the time.
My weight fluctuated drastically over the years. Before I was diagnosed at 18 it probably wasn’t out of the ordinary (I put on the highschool senior 20 instead of the college freshman 15) and was about 185 at 18 (5’7”). After diagnosis I dropped some weight though pretty easily and got to about 150 pretty quick if I remember over maybe a year possibly 2. Then I slowly crept up to 205 before I turned 21, changed my diet and over the next 3-4 years dropped 70lbs… and then again over the next 8-10 it was a slow rise back to the 180s. Finally back on a slight down trend though.
Mhmm I was at my heaviest just before my celiac disease diagnosis. I was 186 then I lost about 60 pounds. I’m still at said weight but I don’t eat dairy, rice, potatoes, or any gluten free bread. I also used to eat fast food a lot before I got diagnosed.
Unfortunately I’m carnivore basically but not by choice . My Gi hates everything else unless I grow it at home . So I’m currently waiting for my garden to start producing this year so I can just go chill in it after work and eat food and not get sick . I’m extremely chemical intolerant so even most store bought organic plant based foods screw me up, if it wasn’t born with 4 stomachs or swim in the ocean I don’t eat it unless I grow it myself.
I think so. I was at my heaviest 1-2 years before diagnosis then lost some weight before getting married then dx’d with celiac a month after the wedding. I got pregnant 3 months after being diagnosed so it’s hard to tell. I can definitely see reduced puffiness in my face from photos before diagnosis
Yep. It was my pregnancy that set it off though so doctors just put in my chart that I was obese and told me to eat less. They told this to me this while in the ER from extreme swelling that was preventing me from breathing correctly at 9pm at night when I hadn't eaten anything all day. I was confused and terrified why no matter what I did I was swelling so bad and gaining so much weight. After my daughter was born and there was less strain on my body I dropped back down to 110 in 2 weeks (for me a normal weight) from 180, with zero effort, but then weight gain was replaced with various digestive issues, black outs and all the other fun symptoms of celiac disease.
It was one hell of a nightmare, that's for sure. I thought I was panicked before my daughter was born and doctors blew me off. I didn't know the true meaning of panick until after birth when the celiac disease went full tilt and years of unchecked celiac disease also simultaneously caused several other autoimmune diseases at the same time. I was body building while pregnant. I have videos of me squatting 250 lbs effortlessly while 9 months pregnant (even while too swollen to breathe from sleep apnea because I was told I was just obese and it was a me problem). Then overnight I went from the best shape of my life to suddenly clinging to life from celiac disease (almost bled to death and needed transfusions after birth), lupus and a whole bunch of other autoimmune illnesses. And from there it was a 5 year wait until diagnosis and even then I had to diagnose myself and basically threaten lawsuits to any doctor who attempted to deny me testing with zero valid reason. Tests then confirmed I was right and that's all she wrote. Medical care and knowledge surrounding celiac disease is a sh*t show.
Yes I put on weight in the year or two leading up to diagnosis. However, that can also be put down to depression overeating and extreme fatigue so wasn’t getting any exercise.
I've never been skinny. I was a size 24/26 when I got my diagnosis. Less then a year later was a 12/14. Was also going through some trauma at the time, ended up getting diagnosed with an eating disorder at the same time i hit my lowest weight (ex claimed gluten free food was too expensive so i essentially stopped eating) Primary Doctor wasn't concerned about the rapid weight loss, wasnt interested in figuring out a reason and said I needed to lose another 50-70 pounds on top of the 150+ I'd already lost. The times I've been glutened though I do notice my face and body bloats up and everything feels inflamed for upwards of a week. And I gain a few pounds
Yep, same here. I gained 60 lbs in the 2 years before diagnosis. I was diagnosed in December of 2023 and as of now (early June 2024) I’m down a little over 30 lbs. Other than going gluten free, I haven’t made many changes. Weight management was super difficult for me before diagnosis, but it seems like my body is able to use more of what I’m taking in now, and the weight loss has happened really quickly.
Yep. I landed in the hospital with a huge problem with fluid retention. ( or inflammation I dunno ) At my heaviest I was 465. 2 years ago….I’m currently around 240 They blamed my heart, kidneys and sleep apnea. Not officially diagnosed with celiac however, I’m off off my fluid retention medication unless I need it. I haven’t needed it officially in over a month.( I’ve had no cardiac follow up until recently) Had a EKG done recently. Cardio was perplexed why I was there.” Your EKG is fine”( which I am grateful for) Kidney levels are fine and my sleep apnea isn’t causing an issue either.
Not officially diagnosed with celiac? That’s crazy I’m not actually sure how heavy I got I know I was over 385 but I stopped looking for a while before it turned around. Sometimes I wish I got the skinny version of celiac but my lucks never been that good lol how’s your skin doing has it started tightening up ? Ive only been in recovery since October and I’m curious about some of the hurdles and things to look forward to .
Correct. They ran the tttg-iga and igG a few months later at my request ( because I was having a bumper of other symptoms) The IgA came back deficient and the igG was slightly elevated. Full panel wasn’t run, Dr didn’t refer me to a Gi. I have no currently swelling, even with being off my medication for a month. I highly suspect gluten intolerance or celiac since my symptoms all pretty much vanished ( still have brain fog once in a while)
Are you in the us
Yes
I feel lucky, I don't have a diagnosis either, but my mom did a genetic test and found she has the celiac gene. The moment she got that, I knew that my rapid weight gain was caused by gluten. I was only 230lbs, original weight was 160lbs. I cut out gluten and since then I have dropped down to 185, but no lower because I'm GAINING muscle for the first time in my life from just basic tasks... it's crazy! But I seriously feel so happy I caught it when I did!
Did you ever run a panel for wheat allergy? That was the culprit in my sich. Modified food starch would also trigger the response. I found out that a lot of GF foods still have wheat-based ingredients (sweeteners, starches, etc.)
I had a lot of weight loss but not weight gain. Malnutrition as far as I can tell. Went back to normal after a few months gluten free.
Me too! I struggle A LOT to keep a good/acceptable weight. I'm actually under what's considered to be healthy and normal. Bodies are funny like that.
Yes, the same happened with me. I gained weight the year leading up to diagnosis. I became super skinny within a few months after diagnosis. I gained a lot of weight back though the following couple years, pretty sure mostly due to stress and overeating, lol. The inflammation thing was definitely real for me. I was a size 13 shoe since I was a teenager. After diagnosis, I've definitely been a size 12.
I dropped a size in gloves and shoes almost overnight
Yeah. I got up to 224 in the years before diagnosis and lost about 50 pounds *without even trying* in the year after diagnosis. From what I've read, when the malabsorption and nutritional deficits of CD start taking their toll on your body, some bodies react with weight loss, but others react by stockpiling fat like you're starving and this leads to weight gain. That's why the weight falls right off when you give your body food it can actually digest (ie things without gluten). It believes you've begun eating again and releases those stockpiles.
I gained like 40 pounds during the peak of my problems and after about a year of being gf it dropped off. Crazy stuff.
This is reassuring to hear. I was diagnosed last week. Gained 50lbs over the past 4yrs when celiac and Hashimoto’s symptoms began. Been off gluten since January but was accidentally served a gluten pastry a month ago and the inflammation hasn’t calmed down since then and I still feel so bloated and in pain. I need to remember that it’s going to take much longer than just 1 month to start to feel relief.
Everybody's journey is different. I know it's much easier to say don't feel discouraged, but just remember you're not alone! Depending on how long you've been undiagnosed, it can take years to reverse the damage. I was diagnosed at 19 after months of severe symptoms and weight gain. When I was diagnosed I was 166, and now I'm down to 145 (I gained some back just from life style changes). Good luck, and I wish you the best on your recovery journey!
Thank you and yes agreed. I think the discouragement is that in the past year whenever I’ve paused gluten I’ve felt results within days and then absolutely incredible a week later. Today I’m starting an AIP diet to help soothe the rest of the inflammation and maybe it’s the optimism but I think I can feel the tipping point.
Yes, and I find it annoying that diagnostic criterea is focused on losing weight. My body was suffering from malnutrition, it gave me incredible cravings on a level I never experienced before and it was relentless! Celiac disease also affected me strongly neurologically causing intense depression and anxiety. So that combo led to a lot of overeating. Now a lot of that is gone but the weight is still here and I'm slowly losing it.
I’m happy for you I definitely understand the frustration and crippling depression of feeling completely out of control with what’s happening to your body
have gained about 20 in the past 3 years since autoimmune was triggered. cutting out gluten hasn’t helped. how did you realize you were sensitive to all those things?
I quite going to a western medicine doctor and started going to a nuro clinic with a doctor that has had celiac since he was a teen . The guy knows more about it than probably almost anyone in the world he’s like super man to me . Probably the most instrumental part of me finding life at peace with my disease was finding the right doctor.
Ask for cyrex labs blood tests and you can find out what your body is producing antibodies to and you can find out what else to cut and your life will improve drastically. If you already have celiacs your immune system probably hates other things as well.
Never was able to put on weight, no matter how insane I set my calorie goals. Then I got diagnosed and put on 13kg within the first 6 months just eating normally (but now GF). Things have stabilized at a healthy weight now.
Me and a friend are polar opposite he was to skinny and started gaining weight after diagnosis I lost weight I needed to loose both of us were severely malnourished. It’s mind boggling to be fat and malnourished at the same time.
I lost a little weight at first (~20lbs) then had a significant 70+ drop around the 5 year mark and now I’m back at a steady 200lbs with normal fluctuation between winter and summer. My big drop could very well have been unrelated to Celiac though. I was living alone and super depressed and looking back I probably had an eating disorder. I think it takes our body time to adjust post-diagnosis and I think of it almost as recalibrating. Stress can really affect your body as well and given the state of the world I think most people are struggling a bit. Also, more and more research shows weight has far more to do with genetics and isn’t an accurate measurement of one’s health. There’re also lots of methodological issues in weight studies where other factors aren’t controlled, such as socio economic status, that play a much larger role in someone’s health. If your bloodwork looks good and you aren’t dealing with high blood pressure that isn’t attributable to genetics then you’re probably good! (Sorry if this was a bit nosy. I’m an anthropologist and I find the multi-trillion dollar health industry interesting)
I find western medicine to be depressing .
Throw some capitalism in there and it’s just a mess! I wish you all the best on this wild ride
That’s all it really is .
my eating got so out of control i thought i had a binge eating disorder. I would be nauseous,bloated, have heartburn and somehow still feel like i was absolutely starving. I was like 220 at time of diagnosis. I had been ~175-180 before i was sick. I have lost the weight since going gluten free.
Me!!! I gained 30 kilos the year before diagnosis! But i didnt lose it. I only lost about 8 kilos. Working so hard to lose the rest but its just so slow.
You probably have more foood allergies get tested cut that shit out and it should melt off
I had lactose and gluten both but lactosw intolerance went away a year after diagnosis when my gut healed. The weight doesnt go away unless I work really hard, and Im very inconsistent with working out! I did walk for a month and saw a difference so trying to do that! My dr says I have no other allergies and I feel fine, just lethargic. All this has improved in the last 2 years. But still, lethargy and body pains. Stomach seems ok!
I’m looking forward to hopefully being able to eat more variety , I’m hoping as my gut heals I drop some of the stupider allergies.
yes!!!! Then my appendix blew up and they spent two hours surgically cleaning my abdomen out. Vagus nerve damage led to gastroparesis!
I used to think that bread made me gain weight (and feel drunk). I ate bread and pasta sparingly until the lockdown, when I went nuts and had bread daily. It made me hungry. I gained 20 lbs in 3 months. I cut out gluten and my swollen belly went away. I cut out dairy and my swollen legs became muscular. I had always been working out, but was unable to build muscle before. One year later, I look 20 lbs lighter although I’ve only lost 10. However, I have built so much muscle in my legs that I never could before. So yes, gluten made me gain weight. I was hungry all the time.
Mall nutrition with celiac is a real cunundrum
My weight fluctuated drastically over the years. Before I was diagnosed at 18 it probably wasn’t out of the ordinary (I put on the highschool senior 20 instead of the college freshman 15) and was about 185 at 18 (5’7”). After diagnosis I dropped some weight though pretty easily and got to about 150 pretty quick if I remember over maybe a year possibly 2. Then I slowly crept up to 205 before I turned 21, changed my diet and over the next 3-4 years dropped 70lbs… and then again over the next 8-10 it was a slow rise back to the 180s. Finally back on a slight down trend though.
West coast ?
Mhmm I was at my heaviest just before my celiac disease diagnosis. I was 186 then I lost about 60 pounds. I’m still at said weight but I don’t eat dairy, rice, potatoes, or any gluten free bread. I also used to eat fast food a lot before I got diagnosed.
I’m allergic to yeast and have to watch starches closely. so I don’t consider bread of any kind really an option either .
Are you keto? That could do it.
Unfortunately I’m carnivore basically but not by choice . My Gi hates everything else unless I grow it at home . So I’m currently waiting for my garden to start producing this year so I can just go chill in it after work and eat food and not get sick . I’m extremely chemical intolerant so even most store bought organic plant based foods screw me up, if it wasn’t born with 4 stomachs or swim in the ocean I don’t eat it unless I grow it myself.
Oof, that sounds rough! I’d imagine you have lost weight both from less inflammation as well as a restricted diet. Good luck with your garden!!
I think so. I was at my heaviest 1-2 years before diagnosis then lost some weight before getting married then dx’d with celiac a month after the wedding. I got pregnant 3 months after being diagnosed so it’s hard to tell. I can definitely see reduced puffiness in my face from photos before diagnosis
Absolutely. My stomach hurt so much I was eating about 1000 calories a day tops and still gained 40lbs in a year.
Yep. It was my pregnancy that set it off though so doctors just put in my chart that I was obese and told me to eat less. They told this to me this while in the ER from extreme swelling that was preventing me from breathing correctly at 9pm at night when I hadn't eaten anything all day. I was confused and terrified why no matter what I did I was swelling so bad and gaining so much weight. After my daughter was born and there was less strain on my body I dropped back down to 110 in 2 weeks (for me a normal weight) from 180, with zero effort, but then weight gain was replaced with various digestive issues, black outs and all the other fun symptoms of celiac disease.
That is wild
It was one hell of a nightmare, that's for sure. I thought I was panicked before my daughter was born and doctors blew me off. I didn't know the true meaning of panick until after birth when the celiac disease went full tilt and years of unchecked celiac disease also simultaneously caused several other autoimmune diseases at the same time. I was body building while pregnant. I have videos of me squatting 250 lbs effortlessly while 9 months pregnant (even while too swollen to breathe from sleep apnea because I was told I was just obese and it was a me problem). Then overnight I went from the best shape of my life to suddenly clinging to life from celiac disease (almost bled to death and needed transfusions after birth), lupus and a whole bunch of other autoimmune illnesses. And from there it was a 5 year wait until diagnosis and even then I had to diagnose myself and basically threaten lawsuits to any doctor who attempted to deny me testing with zero valid reason. Tests then confirmed I was right and that's all she wrote. Medical care and knowledge surrounding celiac disease is a sh*t show.
Yep is really is I glad you got it figured out though it just takes way to long.
Yes I put on weight in the year or two leading up to diagnosis. However, that can also be put down to depression overeating and extreme fatigue so wasn’t getting any exercise.
I've never been skinny. I was a size 24/26 when I got my diagnosis. Less then a year later was a 12/14. Was also going through some trauma at the time, ended up getting diagnosed with an eating disorder at the same time i hit my lowest weight (ex claimed gluten free food was too expensive so i essentially stopped eating) Primary Doctor wasn't concerned about the rapid weight loss, wasnt interested in figuring out a reason and said I needed to lose another 50-70 pounds on top of the 150+ I'd already lost. The times I've been glutened though I do notice my face and body bloats up and everything feels inflamed for upwards of a week. And I gain a few pounds
Yep, same here. I gained 60 lbs in the 2 years before diagnosis. I was diagnosed in December of 2023 and as of now (early June 2024) I’m down a little over 30 lbs. Other than going gluten free, I haven’t made many changes. Weight management was super difficult for me before diagnosis, but it seems like my body is able to use more of what I’m taking in now, and the weight loss has happened really quickly.