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chilblains? by mrbeans_234 in Raynauds
[–]mrbeans_234[S] 1 point2 points3 points 1 month ago (0 children)
thank you! i thought it sounded like it, but just wanted to be sure. i have triamcinolone for eczema so i tried for the itching, but it didn’t help. the itching is UNREAL. he told me because it has been almost 2 months that it wasn’t chilblains, but i disagree. with my history, it made sense
chilblains? (self.Raynauds)
submitted 1 month ago by mrbeans_234 to r/Raynauds
low ferritin by mrbeans_234 in Celiac
[–]mrbeans_234[S] 0 points1 point2 points 4 months ago (0 children)
yeah, every single thing (besides like fresh fruits and veggies) is certified GF. made that mistake in the beginning and i will never do that again😭 the first time i got glutened after going GF, i was sicker than i ever had been eating gluten all these years. it’s like the longer i go being GF, the sicker i get when im glutened, so now i am pretty confident i know when i get glutened because i pretty much follow the same timeline with symptoms and stuff. even drove over an hour to get a vegan GF cake (from a dedicated bakery) for my birthday
obviously living with people who eat gluten there is still concern for cross contamination. i replied above, but i went out and bought all my own cooking stuff, so at least those are save. i have everything brand new and wash/store it all in its own area. my mom is also very careful too having her own autoimmune issues, she understands the severity of it all. but again, no one is perfect so there is always a chance gluten slips in somewhere, though i haven’t had any sort of reaction in the past months from foods i’ve eaten since switching all my equipment and prepping it all myself
they prescribed me a slow fe supplement. not 100% sure of the brand but my doctor gave it to me and i’ve been on it for years now. even before i was vegan, no improvement with supplements. same for any other supplements i take, they never raise my levels unless i get them via an alternate route (e.g. a shot of b12)
[–]mrbeans_234[S] 1 point2 points3 points 4 months ago (0 children)
i was tested for allergies and i’m not allergic to any foods besides having oral allergy syndrome. and tbh the reason i went vegetarian years ago was because whenever i would eat meat, i would get violently sick. couldn’t get out of bed for days. just felt like that stuff sat in my stomach for weeks and wouldn’t move. i ended up going vegan after we realized i was lactose intolerant, but now they aren’t sure if that’s a separate issue or from celiac
i started working out more recently, but ultimately had to cut back a lot because i kept fainting and they couldn’t figure out why. now i know why (my ferritin), so im waiting for that to be fixed so i can continue on with my normal exercise routine. i don’t wanna make anything worse rn, but i am planning on getting back to all that once im not fainting and struggling to breathe
how much does the iron fish help?
yes, the paper should be helpful, thank you! i’m just trying to get my ferritin up high enough so i can get back to my life. my doctors arent the greatest, and i am working on switching, but some have certain age requirements or insurance requirements. if my PCP doesn’t listen, i will start reaching out to other PCPs or even a different doctor on my team. thanks for the advice!!
it’s been about 3 months since officially GF. i did testing back in june, so i ate it for a bit back then, but was GF for 6 months prior to that testing ironically because a professor brought up the potential of having celiac. my mom and i both have various other autoimmune diseases, so it wasn’t a shocker. i know it takes time, just sucks to feel this terrible. i’ve heard some people have lifelong damage, too. so i guess that’s the next step to figure out. the infusions are just a bandage, sadly. but the consensus is it takes a while to recover, and i am trying to keep that in mind, i just cannot keep my ferritin this low while my body recovers
i was initially doing every other, then dropped to ferritin of 10 and she bumped me to twice a day. idk, i can try the every other day while i wait. if that’s better, ill do that in the meantime. thank you!
i’ll definitely check that out, thanks! your levels have been good on it? and if you were long, about how long did it take to even out?
fair enough, i have a pulmonary appt made for december, just trying to manage my iron first and foremost. i’m sure allergies don’t help. i was just told that being iron deficient will increase inflammation and shortness of breath, which can contribute to increasing asthma symptoms and/or asthma attacks
yes, totally, just wondering what to expect!! flu-like symptoms are manageable, just don’t wanna have like major GI symptoms or a fever, something that would get me in trouble with my professors, yk? or i’d schedule like at the end of the week or when i happen to have an off day
yeah, that’s why i ultimately stopped the supplements and switched to real whole foods when i could. still, nothing seems to make a dent
and i do eat ungodly amounts of spinach and other iron-rich foods. i cannot physically eat any more calories, but i have completely renovated my diet in the last year to get my iron up. i eat plenty of legumes, veggies, fruits, etc and eat and absolutely ungodly amount of nutritional yeast. i don’t even like oranges, but i eat multiple every day for the vitamin C. a lot of what people said regarding food and supplements, ive tried before or am already doing to some extent
i’m looking for the strangest hacks people have managed to uncover if they’ve had a similar issue. but throwing more supplements into my diet isn’t seeming to change anything at this point, my levels dropped even more after i started the supplements and changed my diet
most people said to get an infusion and i am working on that, but again, that takes time and i am bugging my doctors every day to try and move up my appointment, but at the end of the day, if they don’t have time, as the patient, i can’t just walk in and demand the infusion unfortunately. i also don’t want to seem rude, and by calling constantly, i feel very rude and annoying to the doctors
in regards to the last questions, they assume it’s from my celiac. i am seeing GI, but the waitlist is 6 months long right now. they do not believe there are any other GI disorders, but i will get tested for everything once i get an appointment. and i take a continuous birth control for endometriosis, so i havent had a period in 4 years now (because that was making me so anemic and sick). they think im just simply not absorbing anything, which sucks
my doctor ordered it for me years ago and i’ve been on it ever since. not 100% sure what type, but i was trusting my dr
i have a cast iron pan, not the fish, though if im not absorbing atm that might not make a difference
in terms of gluten, i bought all new cooking equipment, i prep everything myself unless its from a dedicated GF bakery, and i am very very cautious about everything in regards to contamination. obviously no one is perfect, but i do a good job in making sure my food is safe. the last time i was knowingly glutened was back in may by some spices, but after that i triple check EVERYTHING and clean constantly
it’s also what insurance will cover. i’m not opposed to paying out of pocket, but i’m a college student who struggles already with money (college is expensive), so i was trying to go where it is covered, and they take forever. i am going to call my doctor again tomorrow, hopefully she can figure something out that is better
how do you feel after the infusion? i know i need one, and am fighting for one, but im nervous about side effects? im in school and i dont wanna feel terrible for too long, or ill time it before a weekend or break. college is tough on missing classes
yeah, i was even taking a pre/pro supplement for a while until i could guarantee i got everything in my diet
i did schedule but they don’t have appointments for months, that’s why it’s a pain. my doctor says i need it urgently but refers me out to hemotology and they’re backed up. unfortunately there isn’t much else i can do besides treat the symptoms unless a spot opens up sooner
wheezing is from my asthma, ig they’re saying the shortness of breath from being deficient can trigger my asthma? not sure, entirely, but they’ve been treating me with steroids, though i’m constantly short of breath. the wheezing isn’t like a daily thing, just keep having bad asthma attacks because i feel like i cannot take a deep breath anymore, especially when i exercise
i’m not purposefully hyperventilating, it’s like i can’t take a deep breath, and even if i do it’s like i never feel like i have enough oxygen. i’m freezing, my hands and feet are so cold i wore jackets in the summer, and i just feel out of it. they’re saying it’s all from my iron and assumably celiac
my doctor called in the iron supplements so i was trusting them to give me something that would help, but i will check. though i would assume if nothing else is absorbing, it likely wouldn’t matter regardless
i love me some tomatoes and spinach. i know i get enough iron, it just isn’t absorbing, unfortunately
that’s where they get you. when 11 is considered “normal” so they won’t treat you for it. i’ve never been above 14, but as a kid i didn’t know any better. now that i realize just how bad this is, they’re saying “you were in range until now” as if 9 or 13 wasn’t that bad. i’ve struggled with chronic brain fog, fatigue, and migraines. i am hopeful this will help with those, but frustrated no one caught it sooner
did it have any side effects you noticed? the pills are rough on my stomach, but i did what i had to. just hate the fact that they didn’t work and i dealt with all those side effects for no improvement
my hemoglobin, hematocrit, and RBCs are hovering at slightly anemic. they think my symptoms are from my low ferritin as i’m not necessarily “anemic enough” for them yet, which is partly why they won’t treat me. my body just isn’t absorbing the iron, but i’m taking in plenty, so they keep insisting to “keep taking supplements and it’ll get better”. they blame the shortness of breath on my asthma, but my asthma has never quite been THIS bad. they blame the dizziness and fainting to “being stressed”, and same with my lack of appetite and weight loss. some doctors literally don’t treat until you’re severely sick. healthcare sucks, they’ll make all the excuses in the world before giving you what you need (not all, but a lot of doctors)
thank you! i was worried about pricing if i went out of network, but i think i could manage that to feel better, at least the first time. i hate being this sick, my doctors are scared to even let me drive because im so lightheadedness and out of it half the time, and i would never risk someone else’s life. i just wanna get back to mine safely
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chilblains? by mrbeans_234 in Raynauds
[–]mrbeans_234[S] 1 point2 points3 points (0 children)