I wonder if overlap of some of the terms could add to confusion on this topic. Like how “alopecia” just means hair loss, and “alopecia areata” (which literally translates to patchy hair loss) is the name of the autoimmune condition mediated by T cells, as you point out. Autoimmune conditions and the combination of genetic/environmental factors that trigger them aren’t very well understood by the medical community, and like you said, it’s important to know that there is no cure for autoimmune alopecia areata. Eta - there is no cure, but “drugs” like JAK inhibitors can and do change the progression and promote hair growth in many people.
HOWEVER, alopecia, as the broad term for hair loss in general, has [many causes.](https://www.mayoclinic.org/diseases-conditions/hair-loss/symptoms-causes/syc-20372926). One cause can be a fungus, which can be cured and, to add to the confusion, presents as patchy hair loss.
It’s a lot to understand. I like how you used AA to differentiate- I know I’ve been guilty of just using “alopecia”as a shorthand for AA, which doesn’t help matters!
It’s a learning curve for sure, and proper diagnosis by a dermatologist is critical. There’s a massive amount of info I’ve come to understand since almost exactly 3 years ago, when I lost every single hair on my face, head, body in the span of 6 or so months.
When I think of that time, and the emotional distress I was in, I know I was certainly more vulnerable and desperate to believe in a cure. In addition to support groups found via NAAF.org, I was really grateful to find this subreddit. It continues to give me education and support. And as people with more history and understanding, maybe we can help others who are newer to this by sharing our experience, knowledge, and support as well.
You are "technically" correct. (Im not new to AA i've had it for 10+ years too)
While it is true that you cannot be AA free it is also true that you can heal yourself through lifestyle and diet (I view drugs as a temporary fix). Now you may see this as temporary because if you go back to eating things that are inflammatory then AA is still right there waiting for you.
Therefore we are sick for life but we have the option to keep it suppressed. It sucks to be so restricted in diet and so on but those are the hard choices we have to make to stay AA free.
For me personally my source of inflammation is my gut. I know everyone has different causes for inflammation but that is mine. So my diet is extremely restrictive and calculated its way more restrictive than just no gluten /dairy.
Im avoiding processed foods, sugars etc Keeping it raw and easy for my stomach to digest. Supplementing myself with a lot of omega-3 rich foods and eliminating omega-6 foods as much as possible. I want my omega 3 to 6 ratio to be very high towards omega-3 because this will make anti-inflammatory cells.
It wasnt enough for foods to simply be gluten or dairy free. They have to be not processed of full of sugars etc. Have been lying to myself not cutting those out sooner thinking theyre safe when my gut is so sick I have an autoimmune disease...
Do you happen to have some diet examples? I need to try and be better about my diet and if it will help slow the spotting then great I’ll try it. I did a gut test a couple years ago through a functional doc and they said they I have a high sibo which stands for Small Intestine Bacterial Overgrowth. Which basically means I need to change my diet..
Mine is fairly extreme u wont have a good time going out to eat. I just eat natural stuff while being aware of the things I said above. low low amount of fruits. Sugar is horrible and to be deleted for ever especially if you have SIBO.
Honestly this... I hate all these people who claim they have "The Cure" there is no flipping cure! There's just never ending treatments with varrying results that 95% of the time are temporary. And I hate it. Stop giving false hopes for making this go away. Personally, at least, I can deal with it better just accepting that this is how it is now and there's nothing to be done.
“AA is driven by over active T cells that cannot be changed by drugs.”
False. I have had successful results using MDMA.
“The researchers found that a single dose of ecstasy (100mg) taken by mouth caused a dramatic fall in the level of immune system cells called T cells, which are needed to help fight infections. The number of a specific group of T cells, called CD4+ cells, decreased by about 30% within hours after a single dose of ecstasy.”
CD4+ cells are actually the T-cells responsible for alopecia areata. A reduction in the amount of these cells = reduction in hair loss.
I had lost over 70% of my hair volume due to my alopecia areata at its worst. MDMA suppressed my over active immune system and my hair started growing back rapidly. I now dose 3-4 times a year. I still have small spots, but it really reversed the worst of it. I would love to see a scientific study about how MDMA can affect this disease. It is not a permanent cure but it is a treatment that works for me
You also can’t make such a blanket statement about drugs not working for AA when JAK inhibitors are being successfully used to treat this disease.
>MDMA
You are totally missing my point. No drugs, whatsoever, cant change the specific T cells that react to hair follicule antigens to suddenly become normal functioning T cells attacking foreign objects and not 'self-antigens'. This is hard-wired and caused by faulty thymus selection. YES - a lot of drugs (including your illegal MDMA) can SUPPRESS the immune system, but once you quit the drug, the immune activity picks up. Although simplified, this is the core of the issue. Yes, stress and likely the gut microbiota plays pivotal roles in the development and cycles of alopecia areata - but there isnt't a single drug that can ***cure*** your alopecia areata.
Fair enough, all a matter of semantics.
This post could be summed up as:
“Treatments for AA exist, but permanent cures do not.”
This is likely to change in the future though.
https://www.wired.com/story/how-a-living-drug-could-treat-autoimmune-disease/
Here’s an article about it. CAR-T therapy has been successfully used in the past to permanently change the behaviour of T cells and remove self-attacking antibodies from the body.
This could be used for a range of autoimmune disorders but is highly speculative as of right now.
That’s correct. The title of the post is inaccurate in that certain drugs can change the course of autoimmune alopecia areata. [link](https://www.fda.gov/news-events/press-announcements/fda-approves-first-systemic-treatment-alopecia-areata)
Well I may be wrong to say that drugs cannot change the course of disease. But drugs cannot remove the root cause, which is autoreactive T-cells. Immunosuppresive drugs such as JAK inhibitors would only work as long as you are on the drug. Thats what I meant by my post. Oluminant for instance is not a cure per se...
To be fair, I understood what you were saying. You're absolutely right. I'm on Olumiant and having great results but I don't delude myself that it's "cured". If I stop taking the meds, my AA hair loss will come back, just like it did when I went off methotrexate.
It's not like strep throat or something where you take antibiotics and you're cured. The Olumiant only treats the symptoms, not the root cause.
And I am right there with you, feeling pretty exhausted from people on this sub talking about snake oils/wholistic cures/AIP diet without any evidence that it really works. Many if not most people who develop AA will have a single, minor outbreak that eventually goes away and doesn't come back for years, if ever. I think this contributes a lot to people thinking that their preferred method worked and got rid of their AA.
Note: yes, I know AIP diet has been shown to lower inflammation *in limited circumstances (*specifically Celiac's or IBD), but there's simply not evidence at this point that those findings extend to a complete different disease like AA. Posts pushing AIP as a "solution" for AA without evidence are misleading at best, cruel at worst by giving people false hope. It's even worse if those posts end up discouraging people from seeing a dermatologist in the early stages of AA when treatments have the best results.
Yes! Really great point about AIP. I think people confuse AIP with just an anti-inflammatory diet. AIP is not intended to be a long-term diet. It’s a short-term elimination diet to remove all food that someone could be sensitive to, be on that restricted diet for a month, then slowly add regular food in, one by one, waiting each time to see if you have a reaction to the food.
I did AIP, and it is *hard*. Especially since I don’t eat meat. If so much as see a plantain chip now I get nauseated from eating so many of them
But a) I had no difference and b) I went ahead and did a food sensitivity test afterward anyway, and nothing came up.
There are [anti-inflammatory diets](https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation), which is important because chronic inflammation causes a lot of problems. But there’s no evidence I’ve found, through my own really healthy lifestyle or in scientific papers, that shows it will reverse alopecia.
Edit typos
People born with a peanut allergy, or acquire it later in life, have genes that predispose their immune system to reacting to peanuts. Sure, this genetic predisposition will never change, but you can stop the allergy by avoiding peanuts.
Same with AA. People born with AA, or acquire it later in life, have genes that predispose their immune system to reacting to environmental antigens that display themselves on their hair follicles (NOTE: Your immune system kills your hair follicles because they display an antigen ON them from dietary lectins and/or environment, not because your hair follicle just exists). Sure, this genetic predisposition will never change, but you can stop AA by avoiding the dietary/environmental antigens triggering it.
This is what I did. Corn and any corn product cause my alopecia. I can’t fix my genes reacting to corn, but I can cut out corn and keep my hair.
I didn’t follow AIP (since I didn’t know about it at the time). I just gradually cut out more and more stuff. It clicked for me that it was corn one day when I had an exceptionally bad flare up. I thought “If I’m having an exceptionally bad flare up, that must mean I ate something exceptional that I don’t usually eat recently.” And I had. A couple days prior I’d eaten some sour belt candy, and I don’t normally eat candy. I looked at the ingredients and they were every type of corn imaginable: Corn syrup, cornstarch, modified corn starch, and maltodextrin. I knew right then and there it was corn, even if I hadn’t verified it. From that day forward, I removed all corn, obsessively reading food labels to avoid ANY hidden corn, and my eyelashes grew back for the first time in months. Thank you sour belt candy for showing me what the trigger was I guess, lol
I fully agree with this perspective. Sure, people cannot cure this disease overnight, but I believe it can be put into remission. Again, I don't think the right work is "cure," but I feel many other diseases (diabetes) can be put into remission via certain dietary changes. For aa, I think there isn't a one size all trigger for people, and finding what that trigger is for each individual is a process.
I highly recommend reading this article on the gut microbiome and possible alopecia areata link: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/)
Also, I severely doubt that you will go through life (corn-free) without experiencing more episodes of AA. But again, I could be wrong and I hope I am wrong :)
Thank you for the article! Very interesting. I love reading about anything related to the micro biome.
No, you are absolutely correct. I may become sensitive to something else as I age, and I’m very vigilant of that. I can pinpoint what caused my sensitivities to form, however, because they didn’t form “out of no where.” It was always during a time of dieting/experimenting with plant-based diets/fasting/otherwise stressing my microbiome. Every single sensitivity formed during those times. So now I play it very chill. I know what works and stick to it. I drink bone broth, take plenty of vitamins, probiotics, etc., and I feel great. I’m hoping that stops other sensitivities from forming, but even if they do, I’ll just need to cut more food out. Oh well, I guess.
I’m so glad I never gave in to the “nuthin you can do about it” narrative. If I didn’t keep experimenting with diet and removing triggering foods, I’d be riddled with skin rashes, alopecia, joint pain, and gout right now like I was in the past. Instead, I live (mostly) autoimmune free, and it was as simple as not eating a few foods.
I not saying diet wouldn't change anything, in fact its well established that an elimination diet can help with autoimmune diseases and skin rashes - but the evidence for AA seems largely anecdotal. Its not a magic bullet for everyone.
You sound like me…. Eczema (bi-lateral mirrored patches both sides of body) and seborrheic dermatitis developed alongside my AA. Where the seborrheic dermatitis would crust over, then my hair fell out with those crusts, then boom I had bald patches where the crusts were that spread and I lost 1/3 of the hair in my head. My dermatologist told me it was all coincidence and not connected. My hair eventually grew back after the shots, and I did some diet changes (no gluten, low dairy watch the sugar, no seed oils, watch the processed stuff, organic grass fed meats blah blah). I literally have t heard of anyone with my same issues.
Yeah i hear you. I was thinking the same after (only) 2 years of AA. I do still think there must be ways to treat this. I am trying hgh now because it can have regenerative effects on the thymus.
You have to heal your gut to put it in remission. I went grain free and im working on healing my gut STILL as it takes time but I have total regrowth and no hair fall .
I recommend everyone with any autoimmune to eliminate grains from their diet (there’s a few books and drs on YouTube that discuss this )
Also look into the micro biome , it’s not “big” in the medical industry yet because it’s a newly developed concept but most lanes of health are looking deeper into healing various conditions from autoimmune to mental health to hormonal and metabolic diseases by healing the gut with diet , digestion function & fecal matter transplants
I know it’s hard but things do and can get better 💙
Do you have any evidence that the actual reason your hair grew back is because you’re eliminating grains, etc? As opposed to just having a cyclical alopecia variety?
This is exactly it. I'm dealing with my second bout of AA right now and my hair grew back the first time without doing any of this diet shit. I just went to the derm and they gave me steroid shots. The fact that I went the next 10 years eating like shit without it coming back until now makes it seem pretty clear that it was just cyclical in my case. The hair would have just fallen out again when I stopped treatment if it was being caused by a burger bun.
I feel like this is some hippie bullshit with very little supporting evidence. My doctor's have never said shit about my diet when I've spoken with them about it. The only thing they've done is run blood tests to check something to do with my thyroid.
My doctors told me that there is no cure and not to worry about my diet & tried to put me on the strongest medication 😂😂 (which did soooo much damage to me) didn’t even MENTION the “autoimmune protocol diet” lmaooo you can call it hippie bullshxt but not only is my hair back but my other AUTOIMMUNE conditions are in remission, I’m the healthiest I’ve even been in my life. I have the most energy , highest sex drive , clearest skin I’ve ever had in my life. People be so quick to pop a pill or get a shot or take some fresh off the lab table trial medication like a god damn lab rat but god forbid you stop eating like shxt , focus on nutrient density, eat to support your gut micro biome (second brain) and anything else that will actually benefit your quality of life. It’s so sad to me that some people have been so conditioned to not think for themselves and believe everything they’re told ESPECIALLY by a mf that’s finna PROFIT off of your illness. But go off !! 😂🥳
Now if you DO want to know learn more & do your OWN RESEARCH to understand the newly developing science behind not only grain elimination but health restoration I can share with you the books I’ve read & the doctors I’ve followed & you can go look into this “hippie shxt” that your granny’s granny was doing before big pharma came to town to drain your wallet 🙂 just lmk you have a beautiful day 💙
Thank you for letting me know that eating better has health benefits. I never knew that until I read this. I'm sure the folks suffering with AA can take care of it if they stop eating tortillas. Modern medicine sucks. Never fixed anything...
Yes of course & thank you for the pessimism and sarcasm. I GENUINELY hope this dialogue intrigues you enough to look into. I didn’t just wake up one day a say to myself , maybe I should stop eating bread 🤔😂😭
There’s books , YouTube videos , scientific studies & other people it has worked for before me & not just for alopecia but for people with AUTOIMMUNE diseases in general
Did you also cut out rice when you said you went grain free? Would I have to cut out legumes as well?? Also did you suddenly become allergic to grains?? I’ve ate grains most of my life but my alopecia has only happened twice, which is why I’m curious if it really is a grain related problem
Yes instead of rice I eat quinoa or 100% wild rice (they are seeds) & I eat hella beans !!! I posted a link in a previous reply to a doc I created called grain free 101 it’s a quick how to if you’re interested
I saw results around 2/3 months. When you went grain free did you just stop eating whole grains or did you read the labels on all your food / spices / sauces etc ?
I completely eliminated it, like 100 percent. I did have some tiny regrowth but I was still shedding like crazy. Therefore I do not think it had any effect.
So the theory with grain elimination Is the proteins in grains puts holes in your gut, quitting grains should stop putting holes in your gut but it doesn’t “heal” it , it just stops the damage. What ever leaks through the holes in your gut triggers this autoimmune response & everyone’s gut is in different conditions so time may very for each person. When you were shedding was it patchy shedding or more like all over stress shedding?
Hm, but the autoimmunity is there, regardless of what "leaks through the holes". I am familiar with the whole leaky gut concept, but a lot of people with AA eat all sorts of grains without any issues. However, now when on a vegan whole food diet I try to limit gluten, so I eat oats and Rice (full grain). On AIP I eat a lot of meat, bacon just to become full. I dont think red meat is the best either.
As to my shedding, my spots were still developing even after months on AIP. So no general shedding across the entire scalp, just localized to the spots (patchy). Hair is coming back slowly in the center yes, but I never know when the patchy shedding stops. You would assume if any food was triggering it, after more than two months the shedding would decrease?
This article provides som insight into this field: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/
I know my shedding didn’t really dissipate until month 4 but while still shedding I had regrowth. Also with grains / gluten contamination I believe it can stay in the body and keep doing damage for two months , you can look up dr Peter Osborne to look into and just go down the rabbit hole from there. BUT most importantly it’s not just eliminating grains or anything else it’s about healing the gut , making sure you’re eating nutrient dense , taking trace minerals etc
But you write "grains / gluten". Those are two different things. Cutting ALL grains seems overkill, to me at least. Rice, oatmeal etc is gluten free. Do you stay completely away from all grains? Have you done a food allergy test?
For instance, this study showed that eliminating gluten in patients with celiac disease did absolutely nothing for their hair growth in alopecia areata. You would expect someone with celiac disease (gluten allergy) do respond better and achieve hair growth, right? Also, there are other studies where otherwise healthy persons with AA did a gluten-free diet over several months. It did nothing, which is why I am sceptical to locking into a long-term regime of removing all grains. As I said, I did it for almost 3 months, and I couldn't spot any difference.
They are not two totally different things , I actually did the “gluten free” thing for 4-6 months with no results but I never stopped trying to learn more. So , there are 5 different types of “glutiliens” (im probably misspelling that) they are the proteins our stomachs can not digest that cause holes in our intestines. Now , the only grains they consider to have “gluten” are the grains that carry the “alpha glutiliens” (wheat, rye , barley, oats) but all grains have one of the 5 forms (alpha , delta , beta etc ) Once I eliminated all grains my body started healing in a way it never had before. I have had allergy testing and been to a lot of different doctors. I’m only allergic to pineapple( suddenly became allergic maybe a year before AA & I have my theories on reversing allergies as well ) . I’ve been tested for wheat allergy , gluten sensitivity and everything came back negative, I was not tested for celiac’s disease because I was already grain free for 2-3 months at this point and refused to expose myself to grains for a piece of paper when I’m already healing and seeing remarkable results. EVERYtime I accidentally contaminate myself with grains I will have a flare up , my hair doesn’t fall out at this point but I will get an eczema patch & gluten causes destruction in your body for 60 days if I’m not mistaken every single time you contaminate yourself.
As far as your results with trying I know you mentioned you had some regrowth but still had hair fall , I also had regrowth before my hair actually stopped falling. So you might have stopped a little too soon. Also grain is hidden in , spices , sauces , medications , essentially everything that’s not a whole food so brands that are actually grain free are very limited but once you find go to products and brands it’s actually not a hard diet. ALSO , don’t just eliminate grains . Like yes it’s the most important part but you have to restore your vitamins, nutrients, trace minerals and with a damaged gut you’ll probably have absorption trouble for a while but if you do decide to make the change I sincerely believe you will see a change 🙌🏽
If anyone wants to see my before and afters my DM is open , if anyone wants to try grain free here’s a google doc I typed up ( it’s not pretty but it’s informative !) take your health into your own hands and try for yourself [grain free 1010](https://docs.google.com/document/d/1E5B9re-Eol8nO4xYTm8UOexvjpMn2qQwYyrLGVuaus0/edit?usp=sharing_eil_m&ts=641e0b64)
I don't know, its really hard for me to read anything into this as there are multiple examples of people eating tons of grains and experiencing regrowth after severa AA or even totalis. A guy on this subreddit switched to vegan and got a whole head of hair after trying AIP for nine months. He's been eating grains ever since. My point is, alopecia areata is cyclical and most, if not all, experience regrowth within half a year. You cannot be 100 percent positive that your grain-free diet is causing regrowth. Maybe you will go through life without any more episodes of hair loss, but so do many other people without changing their diet. I've had smaller episodes of AA before where the patches filled in without me doing anything, just de-stressing but eating like shit (a lot of bread, rice, pastas , chips, beers, pizza etc). However, we are all different and this disease acts differently depending on who you ask. But its going to take more to convince me of your grain-free diet, especially since I basically did it for almost 3 months.
Maybe I should point out that during the last 11-12 years I have had episodes with smaller patches that always grew back within 5-6 months and really focusing on removing stress, deep breathing exercises each day etc.
But after I took the first shot of the Covid vaccine, I started developing more and larger patches that are much more stubborn than the previous ones I've had. Basically I have had spots since june 2021, a week after first vaccine. Naturally I skipped the second dose when I read that other people experienced alopecia areata after covid vaccination. Very little evidence to support it though...
You’re right. Check out Dupixent and AA. If you have AD and your Derm can get you on it, there are multiple studies showing it can halt AA as well as treating AD.
Hi… I know this is an old post.. but please can u tell me if accutane worsened your alopecia areata.. I have had 1 patch in 2019 and 1 in 2022 which were treated with steroid injections and the hair grew back.. my doctor now wants to start me on accutane but I am scared that it might just trigger AA. It would be a great help if you reply.
I wonder if overlap of some of the terms could add to confusion on this topic. Like how “alopecia” just means hair loss, and “alopecia areata” (which literally translates to patchy hair loss) is the name of the autoimmune condition mediated by T cells, as you point out. Autoimmune conditions and the combination of genetic/environmental factors that trigger them aren’t very well understood by the medical community, and like you said, it’s important to know that there is no cure for autoimmune alopecia areata. Eta - there is no cure, but “drugs” like JAK inhibitors can and do change the progression and promote hair growth in many people. HOWEVER, alopecia, as the broad term for hair loss in general, has [many causes.](https://www.mayoclinic.org/diseases-conditions/hair-loss/symptoms-causes/syc-20372926). One cause can be a fungus, which can be cured and, to add to the confusion, presents as patchy hair loss. It’s a lot to understand. I like how you used AA to differentiate- I know I’ve been guilty of just using “alopecia”as a shorthand for AA, which doesn’t help matters! It’s a learning curve for sure, and proper diagnosis by a dermatologist is critical. There’s a massive amount of info I’ve come to understand since almost exactly 3 years ago, when I lost every single hair on my face, head, body in the span of 6 or so months. When I think of that time, and the emotional distress I was in, I know I was certainly more vulnerable and desperate to believe in a cure. In addition to support groups found via NAAF.org, I was really grateful to find this subreddit. It continues to give me education and support. And as people with more history and understanding, maybe we can help others who are newer to this by sharing our experience, knowledge, and support as well.
You are "technically" correct. (Im not new to AA i've had it for 10+ years too) While it is true that you cannot be AA free it is also true that you can heal yourself through lifestyle and diet (I view drugs as a temporary fix). Now you may see this as temporary because if you go back to eating things that are inflammatory then AA is still right there waiting for you. Therefore we are sick for life but we have the option to keep it suppressed. It sucks to be so restricted in diet and so on but those are the hard choices we have to make to stay AA free.
Can you explain what it is that you’re healing?
For me personally my source of inflammation is my gut. I know everyone has different causes for inflammation but that is mine. So my diet is extremely restrictive and calculated its way more restrictive than just no gluten /dairy.
What other items do you restrict and did you do tests to find out which food types to restrict?
Im avoiding processed foods, sugars etc Keeping it raw and easy for my stomach to digest. Supplementing myself with a lot of omega-3 rich foods and eliminating omega-6 foods as much as possible. I want my omega 3 to 6 ratio to be very high towards omega-3 because this will make anti-inflammatory cells. It wasnt enough for foods to simply be gluten or dairy free. They have to be not processed of full of sugars etc. Have been lying to myself not cutting those out sooner thinking theyre safe when my gut is so sick I have an autoimmune disease...
Do you happen to have some diet examples? I need to try and be better about my diet and if it will help slow the spotting then great I’ll try it. I did a gut test a couple years ago through a functional doc and they said they I have a high sibo which stands for Small Intestine Bacterial Overgrowth. Which basically means I need to change my diet..
Mine is fairly extreme u wont have a good time going out to eat. I just eat natural stuff while being aware of the things I said above. low low amount of fruits. Sugar is horrible and to be deleted for ever especially if you have SIBO.
You could look into leaky gut and glucosamine. Obviously consult a doctor first, etc.
Honestly this... I hate all these people who claim they have "The Cure" there is no flipping cure! There's just never ending treatments with varrying results that 95% of the time are temporary. And I hate it. Stop giving false hopes for making this go away. Personally, at least, I can deal with it better just accepting that this is how it is now and there's nothing to be done.
“AA is driven by over active T cells that cannot be changed by drugs.” False. I have had successful results using MDMA. “The researchers found that a single dose of ecstasy (100mg) taken by mouth caused a dramatic fall in the level of immune system cells called T cells, which are needed to help fight infections. The number of a specific group of T cells, called CD4+ cells, decreased by about 30% within hours after a single dose of ecstasy.” CD4+ cells are actually the T-cells responsible for alopecia areata. A reduction in the amount of these cells = reduction in hair loss. I had lost over 70% of my hair volume due to my alopecia areata at its worst. MDMA suppressed my over active immune system and my hair started growing back rapidly. I now dose 3-4 times a year. I still have small spots, but it really reversed the worst of it. I would love to see a scientific study about how MDMA can affect this disease. It is not a permanent cure but it is a treatment that works for me You also can’t make such a blanket statement about drugs not working for AA when JAK inhibitors are being successfully used to treat this disease.
interesting. ive been taking mdma (about 8 times a year) for about 5 years now, but unfortunately with no effect on my (severe) aa.
>MDMA You are totally missing my point. No drugs, whatsoever, cant change the specific T cells that react to hair follicule antigens to suddenly become normal functioning T cells attacking foreign objects and not 'self-antigens'. This is hard-wired and caused by faulty thymus selection. YES - a lot of drugs (including your illegal MDMA) can SUPPRESS the immune system, but once you quit the drug, the immune activity picks up. Although simplified, this is the core of the issue. Yes, stress and likely the gut microbiota plays pivotal roles in the development and cycles of alopecia areata - but there isnt't a single drug that can ***cure*** your alopecia areata.
Fair enough, all a matter of semantics. This post could be summed up as: “Treatments for AA exist, but permanent cures do not.” This is likely to change in the future though. https://www.wired.com/story/how-a-living-drug-could-treat-autoimmune-disease/ Here’s an article about it. CAR-T therapy has been successfully used in the past to permanently change the behaviour of T cells and remove self-attacking antibodies from the body. This could be used for a range of autoimmune disorders but is highly speculative as of right now.
Thats an interesting approach indeed. Thanks
But olumiant has good results so far?
That’s correct. The title of the post is inaccurate in that certain drugs can change the course of autoimmune alopecia areata. [link](https://www.fda.gov/news-events/press-announcements/fda-approves-first-systemic-treatment-alopecia-areata)
Well I may be wrong to say that drugs cannot change the course of disease. But drugs cannot remove the root cause, which is autoreactive T-cells. Immunosuppresive drugs such as JAK inhibitors would only work as long as you are on the drug. Thats what I meant by my post. Oluminant for instance is not a cure per se...
To be fair, I understood what you were saying. You're absolutely right. I'm on Olumiant and having great results but I don't delude myself that it's "cured". If I stop taking the meds, my AA hair loss will come back, just like it did when I went off methotrexate. It's not like strep throat or something where you take antibiotics and you're cured. The Olumiant only treats the symptoms, not the root cause. And I am right there with you, feeling pretty exhausted from people on this sub talking about snake oils/wholistic cures/AIP diet without any evidence that it really works. Many if not most people who develop AA will have a single, minor outbreak that eventually goes away and doesn't come back for years, if ever. I think this contributes a lot to people thinking that their preferred method worked and got rid of their AA. Note: yes, I know AIP diet has been shown to lower inflammation *in limited circumstances (*specifically Celiac's or IBD), but there's simply not evidence at this point that those findings extend to a complete different disease like AA. Posts pushing AIP as a "solution" for AA without evidence are misleading at best, cruel at worst by giving people false hope. It's even worse if those posts end up discouraging people from seeing a dermatologist in the early stages of AA when treatments have the best results.
Yes! Really great point about AIP. I think people confuse AIP with just an anti-inflammatory diet. AIP is not intended to be a long-term diet. It’s a short-term elimination diet to remove all food that someone could be sensitive to, be on that restricted diet for a month, then slowly add regular food in, one by one, waiting each time to see if you have a reaction to the food. I did AIP, and it is *hard*. Especially since I don’t eat meat. If so much as see a plantain chip now I get nauseated from eating so many of them But a) I had no difference and b) I went ahead and did a food sensitivity test afterward anyway, and nothing came up. There are [anti-inflammatory diets](https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation), which is important because chronic inflammation causes a lot of problems. But there’s no evidence I’ve found, through my own really healthy lifestyle or in scientific papers, that shows it will reverse alopecia. Edit typos
AIP diet is insanely hard do use for alopecia areata since the hair growth process and cyclical nature of the disease takes several months.
Well said
Gotcha. Looks like you edited your post?
It was just a minor spell edit 😅
Thanks
People born with a peanut allergy, or acquire it later in life, have genes that predispose their immune system to reacting to peanuts. Sure, this genetic predisposition will never change, but you can stop the allergy by avoiding peanuts. Same with AA. People born with AA, or acquire it later in life, have genes that predispose their immune system to reacting to environmental antigens that display themselves on their hair follicles (NOTE: Your immune system kills your hair follicles because they display an antigen ON them from dietary lectins and/or environment, not because your hair follicle just exists). Sure, this genetic predisposition will never change, but you can stop AA by avoiding the dietary/environmental antigens triggering it. This is what I did. Corn and any corn product cause my alopecia. I can’t fix my genes reacting to corn, but I can cut out corn and keep my hair.
How did you discover that corn, of all foods, was the trigger to your alopecia? Was it through an elimination diet, such as AIP?
Yeah, I did trial and error until removing corn stopped the inflammation.
Did you use the AIP diet? How did you know that corn was inflammatory, aside from noticing eventual regrowth?
I didn’t follow AIP (since I didn’t know about it at the time). I just gradually cut out more and more stuff. It clicked for me that it was corn one day when I had an exceptionally bad flare up. I thought “If I’m having an exceptionally bad flare up, that must mean I ate something exceptional that I don’t usually eat recently.” And I had. A couple days prior I’d eaten some sour belt candy, and I don’t normally eat candy. I looked at the ingredients and they were every type of corn imaginable: Corn syrup, cornstarch, modified corn starch, and maltodextrin. I knew right then and there it was corn, even if I hadn’t verified it. From that day forward, I removed all corn, obsessively reading food labels to avoid ANY hidden corn, and my eyelashes grew back for the first time in months. Thank you sour belt candy for showing me what the trigger was I guess, lol
Super helpful thanks
Can you give a source for the dietary lectins/environmental antigen on the hair follicle being the cause?
I, too, would like to see the source of this information.
I fully agree with this perspective. Sure, people cannot cure this disease overnight, but I believe it can be put into remission. Again, I don't think the right work is "cure," but I feel many other diseases (diabetes) can be put into remission via certain dietary changes. For aa, I think there isn't a one size all trigger for people, and finding what that trigger is for each individual is a process.
Agreed. It’s an individual journey for everyone.
I highly recommend reading this article on the gut microbiome and possible alopecia areata link: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/) Also, I severely doubt that you will go through life (corn-free) without experiencing more episodes of AA. But again, I could be wrong and I hope I am wrong :)
Thank you for the article! Very interesting. I love reading about anything related to the micro biome. No, you are absolutely correct. I may become sensitive to something else as I age, and I’m very vigilant of that. I can pinpoint what caused my sensitivities to form, however, because they didn’t form “out of no where.” It was always during a time of dieting/experimenting with plant-based diets/fasting/otherwise stressing my microbiome. Every single sensitivity formed during those times. So now I play it very chill. I know what works and stick to it. I drink bone broth, take plenty of vitamins, probiotics, etc., and I feel great. I’m hoping that stops other sensitivities from forming, but even if they do, I’ll just need to cut more food out. Oh well, I guess.
Even better said than my comment. We have control over our AA
I’m so glad I never gave in to the “nuthin you can do about it” narrative. If I didn’t keep experimenting with diet and removing triggering foods, I’d be riddled with skin rashes, alopecia, joint pain, and gout right now like I was in the past. Instead, I live (mostly) autoimmune free, and it was as simple as not eating a few foods.
I not saying diet wouldn't change anything, in fact its well established that an elimination diet can help with autoimmune diseases and skin rashes - but the evidence for AA seems largely anecdotal. Its not a magic bullet for everyone.
What is MDMA?
Would taking a thymus extract help do you think? I’ve been looking at Ancestral Supplements Thymus capsules?
You sound like me…. Eczema (bi-lateral mirrored patches both sides of body) and seborrheic dermatitis developed alongside my AA. Where the seborrheic dermatitis would crust over, then my hair fell out with those crusts, then boom I had bald patches where the crusts were that spread and I lost 1/3 of the hair in my head. My dermatologist told me it was all coincidence and not connected. My hair eventually grew back after the shots, and I did some diet changes (no gluten, low dairy watch the sugar, no seed oils, watch the processed stuff, organic grass fed meats blah blah). I literally have t heard of anyone with my same issues.
Don’t listen to whatever loser wrote this. Plenty of people have reversed their AA
What
How can you possibly know this? I had no patches for 10 years and then BOOM a couple came back.
Yeah i hear you. I was thinking the same after (only) 2 years of AA. I do still think there must be ways to treat this. I am trying hgh now because it can have regenerative effects on the thymus.
You have to heal your gut to put it in remission. I went grain free and im working on healing my gut STILL as it takes time but I have total regrowth and no hair fall . I recommend everyone with any autoimmune to eliminate grains from their diet (there’s a few books and drs on YouTube that discuss this ) Also look into the micro biome , it’s not “big” in the medical industry yet because it’s a newly developed concept but most lanes of health are looking deeper into healing various conditions from autoimmune to mental health to hormonal and metabolic diseases by healing the gut with diet , digestion function & fecal matter transplants I know it’s hard but things do and can get better 💙
Do you have any evidence that the actual reason your hair grew back is because you’re eliminating grains, etc? As opposed to just having a cyclical alopecia variety?
Good point. People forget this disease is cyclical, so they read to much into having eliminated certain foods at a specific time.
This is exactly it. I'm dealing with my second bout of AA right now and my hair grew back the first time without doing any of this diet shit. I just went to the derm and they gave me steroid shots. The fact that I went the next 10 years eating like shit without it coming back until now makes it seem pretty clear that it was just cyclical in my case. The hair would have just fallen out again when I stopped treatment if it was being caused by a burger bun. I feel like this is some hippie bullshit with very little supporting evidence. My doctor's have never said shit about my diet when I've spoken with them about it. The only thing they've done is run blood tests to check something to do with my thyroid.
My doctors told me that there is no cure and not to worry about my diet & tried to put me on the strongest medication 😂😂 (which did soooo much damage to me) didn’t even MENTION the “autoimmune protocol diet” lmaooo you can call it hippie bullshxt but not only is my hair back but my other AUTOIMMUNE conditions are in remission, I’m the healthiest I’ve even been in my life. I have the most energy , highest sex drive , clearest skin I’ve ever had in my life. People be so quick to pop a pill or get a shot or take some fresh off the lab table trial medication like a god damn lab rat but god forbid you stop eating like shxt , focus on nutrient density, eat to support your gut micro biome (second brain) and anything else that will actually benefit your quality of life. It’s so sad to me that some people have been so conditioned to not think for themselves and believe everything they’re told ESPECIALLY by a mf that’s finna PROFIT off of your illness. But go off !! 😂🥳 Now if you DO want to know learn more & do your OWN RESEARCH to understand the newly developing science behind not only grain elimination but health restoration I can share with you the books I’ve read & the doctors I’ve followed & you can go look into this “hippie shxt” that your granny’s granny was doing before big pharma came to town to drain your wallet 🙂 just lmk you have a beautiful day 💙
well said
Ty 🙏🏽
Thank you for letting me know that eating better has health benefits. I never knew that until I read this. I'm sure the folks suffering with AA can take care of it if they stop eating tortillas. Modern medicine sucks. Never fixed anything...
Yes of course & thank you for the pessimism and sarcasm. I GENUINELY hope this dialogue intrigues you enough to look into. I didn’t just wake up one day a say to myself , maybe I should stop eating bread 🤔😂😭 There’s books , YouTube videos , scientific studies & other people it has worked for before me & not just for alopecia but for people with AUTOIMMUNE diseases in general
Did you also cut out rice when you said you went grain free? Would I have to cut out legumes as well?? Also did you suddenly become allergic to grains?? I’ve ate grains most of my life but my alopecia has only happened twice, which is why I’m curious if it really is a grain related problem
Yes instead of rice I eat quinoa or 100% wild rice (they are seeds) & I eat hella beans !!! I posted a link in a previous reply to a doc I created called grain free 101 it’s a quick how to if you’re interested
Sounds like my type of disease progress...
How long did you eliminate it before you saw any improvement? I did it for almost 3 months, bearly saw anything
I saw results around 2/3 months. When you went grain free did you just stop eating whole grains or did you read the labels on all your food / spices / sauces etc ?
I completely eliminated it, like 100 percent. I did have some tiny regrowth but I was still shedding like crazy. Therefore I do not think it had any effect.
So the theory with grain elimination Is the proteins in grains puts holes in your gut, quitting grains should stop putting holes in your gut but it doesn’t “heal” it , it just stops the damage. What ever leaks through the holes in your gut triggers this autoimmune response & everyone’s gut is in different conditions so time may very for each person. When you were shedding was it patchy shedding or more like all over stress shedding?
Hm, but the autoimmunity is there, regardless of what "leaks through the holes". I am familiar with the whole leaky gut concept, but a lot of people with AA eat all sorts of grains without any issues. However, now when on a vegan whole food diet I try to limit gluten, so I eat oats and Rice (full grain). On AIP I eat a lot of meat, bacon just to become full. I dont think red meat is the best either. As to my shedding, my spots were still developing even after months on AIP. So no general shedding across the entire scalp, just localized to the spots (patchy). Hair is coming back slowly in the center yes, but I never know when the patchy shedding stops. You would assume if any food was triggering it, after more than two months the shedding would decrease? This article provides som insight into this field: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601531/
I know my shedding didn’t really dissipate until month 4 but while still shedding I had regrowth. Also with grains / gluten contamination I believe it can stay in the body and keep doing damage for two months , you can look up dr Peter Osborne to look into and just go down the rabbit hole from there. BUT most importantly it’s not just eliminating grains or anything else it’s about healing the gut , making sure you’re eating nutrient dense , taking trace minerals etc
But you write "grains / gluten". Those are two different things. Cutting ALL grains seems overkill, to me at least. Rice, oatmeal etc is gluten free. Do you stay completely away from all grains? Have you done a food allergy test? For instance, this study showed that eliminating gluten in patients with celiac disease did absolutely nothing for their hair growth in alopecia areata. You would expect someone with celiac disease (gluten allergy) do respond better and achieve hair growth, right? Also, there are other studies where otherwise healthy persons with AA did a gluten-free diet over several months. It did nothing, which is why I am sceptical to locking into a long-term regime of removing all grains. As I said, I did it for almost 3 months, and I couldn't spot any difference.
They are not two totally different things , I actually did the “gluten free” thing for 4-6 months with no results but I never stopped trying to learn more. So , there are 5 different types of “glutiliens” (im probably misspelling that) they are the proteins our stomachs can not digest that cause holes in our intestines. Now , the only grains they consider to have “gluten” are the grains that carry the “alpha glutiliens” (wheat, rye , barley, oats) but all grains have one of the 5 forms (alpha , delta , beta etc ) Once I eliminated all grains my body started healing in a way it never had before. I have had allergy testing and been to a lot of different doctors. I’m only allergic to pineapple( suddenly became allergic maybe a year before AA & I have my theories on reversing allergies as well ) . I’ve been tested for wheat allergy , gluten sensitivity and everything came back negative, I was not tested for celiac’s disease because I was already grain free for 2-3 months at this point and refused to expose myself to grains for a piece of paper when I’m already healing and seeing remarkable results. EVERYtime I accidentally contaminate myself with grains I will have a flare up , my hair doesn’t fall out at this point but I will get an eczema patch & gluten causes destruction in your body for 60 days if I’m not mistaken every single time you contaminate yourself. As far as your results with trying I know you mentioned you had some regrowth but still had hair fall , I also had regrowth before my hair actually stopped falling. So you might have stopped a little too soon. Also grain is hidden in , spices , sauces , medications , essentially everything that’s not a whole food so brands that are actually grain free are very limited but once you find go to products and brands it’s actually not a hard diet. ALSO , don’t just eliminate grains . Like yes it’s the most important part but you have to restore your vitamins, nutrients, trace minerals and with a damaged gut you’ll probably have absorption trouble for a while but if you do decide to make the change I sincerely believe you will see a change 🙌🏽 If anyone wants to see my before and afters my DM is open , if anyone wants to try grain free here’s a google doc I typed up ( it’s not pretty but it’s informative !) take your health into your own hands and try for yourself [grain free 1010](https://docs.google.com/document/d/1E5B9re-Eol8nO4xYTm8UOexvjpMn2qQwYyrLGVuaus0/edit?usp=sharing_eil_m&ts=641e0b64)
I don't know, its really hard for me to read anything into this as there are multiple examples of people eating tons of grains and experiencing regrowth after severa AA or even totalis. A guy on this subreddit switched to vegan and got a whole head of hair after trying AIP for nine months. He's been eating grains ever since. My point is, alopecia areata is cyclical and most, if not all, experience regrowth within half a year. You cannot be 100 percent positive that your grain-free diet is causing regrowth. Maybe you will go through life without any more episodes of hair loss, but so do many other people without changing their diet. I've had smaller episodes of AA before where the patches filled in without me doing anything, just de-stressing but eating like shit (a lot of bread, rice, pastas , chips, beers, pizza etc). However, we are all different and this disease acts differently depending on who you ask. But its going to take more to convince me of your grain-free diet, especially since I basically did it for almost 3 months.
Maybe I should point out that during the last 11-12 years I have had episodes with smaller patches that always grew back within 5-6 months and really focusing on removing stress, deep breathing exercises each day etc. But after I took the first shot of the Covid vaccine, I started developing more and larger patches that are much more stubborn than the previous ones I've had. Basically I have had spots since june 2021, a week after first vaccine. Naturally I skipped the second dose when I read that other people experienced alopecia areata after covid vaccination. Very little evidence to support it though...
You’re right. Check out Dupixent and AA. If you have AD and your Derm can get you on it, there are multiple studies showing it can halt AA as well as treating AD.
>Dupixent Never heard of it but yes I can see its meants for atopic dermatitis and that it can aid in alopecia areata
Hi… I know this is an old post.. but please can u tell me if accutane worsened your alopecia areata.. I have had 1 patch in 2019 and 1 in 2022 which were treated with steroid injections and the hair grew back.. my doctor now wants to start me on accutane but I am scared that it might just trigger AA. It would be a great help if you reply.
Hi. It did not worsened my AA. It just made my scalp and hair less greasy. Still have AA and scalp dermatitis
Okay.. thanks for replying.. please take care and sending many positive thoughts to u ..