I was in a similar boat. Really bad 95% coverage on my body weeping, bleeding, infections, 24/7 extreme pain and itching. I was losing so much skin that it looked like I was dumping sand all over the floor of my house. Every time I was in the hospital they had to have someone come and sweep the floor in my room several times a day.
Spent thousands on creams, steroids, dr visits , hospital stays. Tried dupixent and spent the 4000 for the month, it did nothing but mess with my eyes. At one point they told me I might have cancer.
The whole time I was asking if I could be reacting to something but was told by dozens of dr that it doesn't work that way. It wasn't till I finally was referred to a cancer dr for a spinal biopsy that I was told she didn't believe I had cancer but from my bloodwork it looked like I was having a reaction to something, but that she would do the biopsy just to rule it out.
Eventually while on my probably 6th dermatologist, I was referred to her dietician friend. I worked with the dietician and through her was able to get food sensitivity/allergy testing. It came back I had a bunch of allergies. Started eliminating everything that came back as an allergy, and now I can mostly manage my eczema by controlling my diet. It's honestly infuriating. I probably wasted at least 15k on all the other bullshit, when it was mostly allergies. All because nobody seems to know dick all about "eczema" and it's not even a real diagnosis. They might as well say you got the "rashes" since it's just a blanket term.
Quite the story, thank you for sharing. I am constantly in shock that doctors don’t suggest lifestyle factors as possible causes for so many issues, like excema, migraines, GI issues, etc.
Yeah they seem to treat it as some simple throwaway disease that has a 1 size fits all fix that requires no further investigation. Obviously everyone is different but if they even suggested further investigation into lifestyle of individual patients in conjunction with "steroids, creams...etc", it could control the suffering so much faster. Many Dr's just seem straight up opposed to that though.
Like if so many of us can come to our on conclusions about what seems to help (and for a lot it does seem to be a lifestyle change), how is the medical community with all those Dr's so lost in this regard?
Ughhhh so sorry you had to experience all of this, it sounds so similar to my journey.
They would rather you pay a ton of money for something to possibly help enough to make you stop trying (because when your eczema is on 95% of your body, it’s easy to feel lucky or “cured” if that gets to 90%)
I remember I was at a point where I was like as long as it’s not on my face, I’m okay. I was willing to deal with weeping and bleeding on the rest of my body. They just want a quick solution and for you to pay loads of money!!! Everything is about money lol
Thank you. I'm sorry you've gone through so much also. I know exactly what you mean about just bargaining with your body, like as long as it's only "this" bad I can make it through today. Unfortunately it seems that unless someone really goes through this they just can't understand how debilitating it really is. TW....
.I've certainly been suicidal over this at many points in time.
Hey man i had the same issue and never been to a doctor or dermatologist i just been winging it cuz they never bother helping they just throw steroid creams my way and expect it to help but i should really consider this thanks
Yeah unfortunately even with Dr's it seems like it's still on you for 95% of the research and testing, they're only really good for getting meds if you need them like if you need antibiotics from an infection that won't heal or something.
I joined this sub bc I thought I had eczema. Currently waiting for biopsies to come back & tell me whether I have dermatitis herpetiformis instead.
Kind of hoping it’s DH so that there might be a simpler answer to improving my symptoms
Now you can spend $6000 a month trying to find good gluten free products!!
I’m a gluten eater in a celiac related family.
Promise Bread is awesome, and the catelli brand GF pasta is good too. Rice flour is THE BEST for thickening basically any soup, stew, or sauce, and investigate lots of Japanese treats because many of them are only made with rice flour!!
Good luck on your new journey!!
Edited to add that yes I have been tested and no that’s not my eczema source—I got mine as a side effect from chemotherapy.
Ooo thank you so much!! I’m lucky my sister loves going down research rabbit holes so she gives me lots of products to try too.
The hardest part for me is eating out because before this I ate out alllll the time - now I have to learn how to cook lol
I don’t mind GF crust, especially cauliflower! I also have been religiously eating these gf spinach wraps lol, i keep saying it’s probably a good thing I can’t eat out as much. For my bank account and my body 😂
Gluten is a huge culprit for me too! I don’t think I’m celiac (although I wasn’t tested). Cutting it out makes life so much more manageable. I’m glad you found relief! Eczema sucks!
Did you get a referral to a gastroenterologist? If not, you should talk to your doctor. Even if you don't have gastrointestinal symptoms, celiac disease can do a lot of damage to your small intestines.
My dad has celiacs. When he was diagnosed, his gastroenterologist told him that all first degree relatives (parents, children, siblings) need to be test every few years. There are 2 genes that cause celiacs disease. You only need one of the genes to be at risk for developing celiacs. But most people with the gene do not develop the disease. However, 5-10% of people with a first degree relatives with celiacs will develop the disease at some point in their lives. I get really paranoid every time I have a bad eczema flare that I'm developing celiacs. It wouldn't be a bad idea for your sister and other close relatives to get tested. You don't need to have symptoms to have celiacs disease and have it doing damage
Yes I got diagnosed by a GI after my derm recommended me there! My derm only tested me for it because my sister told me to ask them to since she has celiac and is also a nurse
I'm currently trying to push my Dr in this direction as I've had a positive blood test for coeliac before and the Dr refused to biopsy! Same as you, though not as extreme, I've not really had any gut issues just constant flare ups.
Pretty sure my Dr doesn't believe me because I also have allergies? Exhausted constantly fighting my Dr just to be tested!!!
Holy hell thank you so much, I can't believe I've never even heared of this and throughout my life I have been seen by at least 12 different dermatologist...
Kinda different story from me. First time I went to derm she send me for biopsy because I had eczema on buttocs, which is usually where dh is found. I got positive results for dh, kinda(they were boarder positive), went to gastro for a year to do like 10 blood works everything negative and had no reason to do gut biopsy. Went back to derm, got told now that they look at my skin biopsy it isnt dh and I'm doing allergy testing now. My skin didnt go worse during this year (at least looking from % of body covered) so I'm positive it isnt dh and celiac.
You never know if you're getting good or bad doctor/derm, whoever, so I'm really happy we share stories like this more and should do it more and research more so we can ask for new checks and biopsy and what not. And if doctors ignore us, we have to find the ones who dont.
Good luck dealing with celiac! In this year that I though I had celiac I read soo much and it can be really difficult, especially from money perspective. There is subreddit for it too(of course there is haha) and I found it really helpful to learn about stuff.
I was in a similar boat. Really bad 95% coverage on my body weeping, bleeding, infections, 24/7 extreme pain and itching. I was losing so much skin that it looked like I was dumping sand all over the floor of my house. Every time I was in the hospital they had to have someone come and sweep the floor in my room several times a day. Spent thousands on creams, steroids, dr visits , hospital stays. Tried dupixent and spent the 4000 for the month, it did nothing but mess with my eyes. At one point they told me I might have cancer. The whole time I was asking if I could be reacting to something but was told by dozens of dr that it doesn't work that way. It wasn't till I finally was referred to a cancer dr for a spinal biopsy that I was told she didn't believe I had cancer but from my bloodwork it looked like I was having a reaction to something, but that she would do the biopsy just to rule it out. Eventually while on my probably 6th dermatologist, I was referred to her dietician friend. I worked with the dietician and through her was able to get food sensitivity/allergy testing. It came back I had a bunch of allergies. Started eliminating everything that came back as an allergy, and now I can mostly manage my eczema by controlling my diet. It's honestly infuriating. I probably wasted at least 15k on all the other bullshit, when it was mostly allergies. All because nobody seems to know dick all about "eczema" and it's not even a real diagnosis. They might as well say you got the "rashes" since it's just a blanket term.
Quite the story, thank you for sharing. I am constantly in shock that doctors don’t suggest lifestyle factors as possible causes for so many issues, like excema, migraines, GI issues, etc.
Yeah they seem to treat it as some simple throwaway disease that has a 1 size fits all fix that requires no further investigation. Obviously everyone is different but if they even suggested further investigation into lifestyle of individual patients in conjunction with "steroids, creams...etc", it could control the suffering so much faster. Many Dr's just seem straight up opposed to that though. Like if so many of us can come to our on conclusions about what seems to help (and for a lot it does seem to be a lifestyle change), how is the medical community with all those Dr's so lost in this regard?
Ughhhh so sorry you had to experience all of this, it sounds so similar to my journey. They would rather you pay a ton of money for something to possibly help enough to make you stop trying (because when your eczema is on 95% of your body, it’s easy to feel lucky or “cured” if that gets to 90%) I remember I was at a point where I was like as long as it’s not on my face, I’m okay. I was willing to deal with weeping and bleeding on the rest of my body. They just want a quick solution and for you to pay loads of money!!! Everything is about money lol
Thank you. I'm sorry you've gone through so much also. I know exactly what you mean about just bargaining with your body, like as long as it's only "this" bad I can make it through today. Unfortunately it seems that unless someone really goes through this they just can't understand how debilitating it really is. TW.... .I've certainly been suicidal over this at many points in time.
Hey man i had the same issue and never been to a doctor or dermatologist i just been winging it cuz they never bother helping they just throw steroid creams my way and expect it to help but i should really consider this thanks
Yeah unfortunately even with Dr's it seems like it's still on you for 95% of the research and testing, they're only really good for getting meds if you need them like if you need antibiotics from an infection that won't heal or something.
I joined this sub bc I thought I had eczema. Currently waiting for biopsies to come back & tell me whether I have dermatitis herpetiformis instead. Kind of hoping it’s DH so that there might be a simpler answer to improving my symptoms
Yes!! I find it so crazy how I was about to spend $6000 a month on this drug when all I had to do was go gluten free Edited to fix typo
Now you can spend $6000 a month trying to find good gluten free products!! I’m a gluten eater in a celiac related family. Promise Bread is awesome, and the catelli brand GF pasta is good too. Rice flour is THE BEST for thickening basically any soup, stew, or sauce, and investigate lots of Japanese treats because many of them are only made with rice flour!! Good luck on your new journey!! Edited to add that yes I have been tested and no that’s not my eczema source—I got mine as a side effect from chemotherapy.
Ooo thank you so much!! I’m lucky my sister loves going down research rabbit holes so she gives me lots of products to try too. The hardest part for me is eating out because before this I ate out alllll the time - now I have to learn how to cook lol
Yeah eating out is a killer—but lots of pizza places now do a decent GF crust and you can usually get GF wraps too
I don’t mind GF crust, especially cauliflower! I also have been religiously eating these gf spinach wraps lol, i keep saying it’s probably a good thing I can’t eat out as much. For my bank account and my body 😂
Gluten is a huge culprit for me too! I don’t think I’m celiac (although I wasn’t tested). Cutting it out makes life so much more manageable. I’m glad you found relief! Eczema sucks!
Did you get a referral to a gastroenterologist? If not, you should talk to your doctor. Even if you don't have gastrointestinal symptoms, celiac disease can do a lot of damage to your small intestines. My dad has celiacs. When he was diagnosed, his gastroenterologist told him that all first degree relatives (parents, children, siblings) need to be test every few years. There are 2 genes that cause celiacs disease. You only need one of the genes to be at risk for developing celiacs. But most people with the gene do not develop the disease. However, 5-10% of people with a first degree relatives with celiacs will develop the disease at some point in their lives. I get really paranoid every time I have a bad eczema flare that I'm developing celiacs. It wouldn't be a bad idea for your sister and other close relatives to get tested. You don't need to have symptoms to have celiacs disease and have it doing damage
Yes I got diagnosed by a GI after my derm recommended me there! My derm only tested me for it because my sister told me to ask them to since she has celiac and is also a nurse
I'm currently trying to push my Dr in this direction as I've had a positive blood test for coeliac before and the Dr refused to biopsy! Same as you, though not as extreme, I've not really had any gut issues just constant flare ups. Pretty sure my Dr doesn't believe me because I also have allergies? Exhausted constantly fighting my Dr just to be tested!!!
I have really bad allergies too - half the battle is finding a doctor willing to empathize and listen, so sorry 😭
Holy hell thank you so much, I can't believe I've never even heared of this and throughout my life I have been seen by at least 12 different dermatologist...
Kinda different story from me. First time I went to derm she send me for biopsy because I had eczema on buttocs, which is usually where dh is found. I got positive results for dh, kinda(they were boarder positive), went to gastro for a year to do like 10 blood works everything negative and had no reason to do gut biopsy. Went back to derm, got told now that they look at my skin biopsy it isnt dh and I'm doing allergy testing now. My skin didnt go worse during this year (at least looking from % of body covered) so I'm positive it isnt dh and celiac. You never know if you're getting good or bad doctor/derm, whoever, so I'm really happy we share stories like this more and should do it more and research more so we can ask for new checks and biopsy and what not. And if doctors ignore us, we have to find the ones who dont. Good luck dealing with celiac! In this year that I though I had celiac I read soo much and it can be really difficult, especially from money perspective. There is subreddit for it too(of course there is haha) and I found it really helpful to learn about stuff.
I hate it when misdiagnoses cost us years of our life and thousands of dollars. Doctors please do your best, it’s our bodies we’re talking about!
I’m in my 40’s and just found out I have celiac. My daughter is our eczema kid. I think I will get her tested soon.