Comment by AnnS on December 20, 2015 at 4:37pm

So I had something called LEAP MRT testing done - you can look it up - and I found out that I tolerate wheat and gluten - but there are a ton of other things I can't have, including soy, dairy and tyramine (any aged/smoked or fermented foods.) This really helped my second round of Alopecia universalis  in 2013. But it returned - and I'll say this, I believe it returned because of some pretty high stress. I also developed psoriasis - which is a family thing - during this same time. My 3rd round of alopecia universalis is much worse than the previous two. I am now trying methotrexate on a low dose, which is supposed to be effective. It's quite inexpensive as well.  My hair has stopped falling out after about two months (I have some patchy hair on my scalp and body, mostly gone on my scalp, and I'm missing random parts of eyebrow and eyelashes.) So if you're going to eliminate, you should probably get tested, or you may never find out. The thing with tyramine was so random I would never have guessed it. And, I can have wheat ;D 

Comment by Tuesday on December 20, 2015 at 5:10pm

I will present my case only to give some perspective.  I am in same viewpoint and Susan McAdams. When I was 19 , moved out of house and promptly developed a mostly vegan (ate meat a few times a year) for most of my adult years.  I ate healthfully and have always tried to avoid processed foods, junk, etc. and exercised daily. Still at age 30, my alopecia started.  I went to naturopath who guaranteed my hair would come back if I followed diet such as you suggested and took her expensive supplements. Sigh.  I was meticulous in following her regime and a few weeks later had lost ALL my hair.  I've had alopecia universalis ever since. I still eat diet that remains free of unprocessed foods, I take supplements such as the ones you list. I have been gluten free and dairy free since the summer as my son was dx'd with a severe immune condition (not autoimmune) triggered by food allergies including wheat.  I notice the absence of gluten makes a difference in terms of the inflammation I suffered in my joints. My arthritic joints are not swelling and aching. But has my hair , brows, eyelashes returned? No.    It might happen to someone else.  But not to me.  That said, this sort of diet is a good thing no matter what the hair loss outcome.   I just don't think it's a magical solution for all people with hair loss.    What bothers me is the media, the cookbooks out there ... that promise it will end alopecia. There's even a Canadian cookbook out there right now called "Scared Wheatless". Well, the diet is what I eat and like I  said - no hair regrowth there.  Who knows.  If ever I do have regrowth, this will be the first place I Report it.

Comment by Jim In Cali on December 20, 2015 at 5:20pm

Alopecia is an Autoimmune disease and as such diet has very little direct impact. Supplements, especially multivitamins have been proven by numerous studies to have no impact on nutritional levels within the body. Individual vitamins supplements show at least some impact on levels in your body but vary on effectiveness.

Whenever you start a new regiment of something it takes about six weeks to see any results. When alopecia attacks your hair follicles and switches it to shed mode their is nothing that can save the hair it will fall out in 3-4 weeks. New hair takes about six weeks to grow through the scalp where you can see.

Comment by MJ on December 20, 2015 at 5:59pm

Hi, I think you are on the right path. My daughter had AU couple of years ago when she was 9 years old. We stopped all the conventional medicine, had done the steroids for a week only. I started her on dr.Ohhira's Probiotics, Nordic Naturals Omega with D3 and doing juicing 3 to 4 times a week with all organic ingredients. She has a dairy allergy,so does not have any dairy in her diet. She is mostly vegetarian, but does eat Chicken and Turkey once in a while. We cut down most of her sugar intake and also all processed food; Changed all her cereals to organic as well. I also started massaging organic coconut oil on her head once a week and she would keep it overnight and wash it off next day. After about a year she had got hair back on her eyebrows, eye lashes, hands & legs. By spring of Spring of 2014, few months before her 10th birthday she had a full head of hair and stopped wearing a wig. She got her natural color of hair back. Now she is 12 and hair is very beautiful. I am still continuing with everything I mentioned above, since we are not sure what specific things actually helped her but very firm believer that diet played a big role in regrow the of her hair. The main thing is you have to very disciplined about it and keep at it. I hope this information will help you.

Comment by Susan McAdams on December 20, 2015 at 6:09pm

I talked in detail with my doctors at Stanford, and what Jim wrote, above, is exactly what they told me. Alopecia is an attack by the immune system on the amino acids that are at the base of the hair follicle. Without those critical components, proteins cannot be created which are essential for hair growth. No supplement or vitamin or diet has been shown to cure that process. Can a strick diet improve digestive problems? That is certainly a good possibility. It helped me when I was having problems with that last year. All autoimmune disorders are not the same. There may be temporary relief to hair loss with diet, but it there has been no medical evidence to support the idea that diet will reverse what is going on at the cellular level. The reason a drug like Xeljanz grew back my hair 95% after having been in AU for almost a year is because the drug suppresses the immune system and keeps the attacks at bay. If I stop the drug, my hair will likely fall out again. I don't plan on doing so for the forseeable future because Xeljanz is working, and I am not experiencing any negative side effects. Going on a very strict diet is really tough to do. It is also downright frustrating when lasting improvements are not seen. Sometimes alopecia can go into remission. It did for me back from 2009-2012. With no change in my diet. But it came back with a vengeance after a long, intense period of stress.

I would never tell someone what to do, nor would I discredit the health benefits of a healthy diet. But please, review the medical research and talk to your doctors. Your MD's. The people who write these nutritional books make really grand claims. Of course they do--that is money in their pockets. But until one sees solid medical evidence that diet can cure alopecia, please keep a critical eye on what you read.

Comment by Dawn on December 21, 2015 at 12:26am

I have tried the diet changes and supplements also but didnt have any hair growth until i added food grade Diatomaceous Earth to my list of supplements. I started seeing regrowth within a few weeks which was very surprising because i was giving up. It hasnt all come back yet but a large majority has. Some comes back white but eventually stars changing. Just remember to get the FOOD GRADE.  

Comment by pterese on December 21, 2015 at 12:50am

Thank you. This is a rough journey. Willing to explore all options.

Comment by AnnS on December 21, 2015 at 8:24am

The issue with AA and AU is that they are overreactions to the protected status of the hair follicle by an overreactive immune system. So calming that fight-or-flight response is key. That's why we take things like methotrexate, and Xeljanz to begin with. I'll tell you there is good concrete evidence for eliminating allergens in your diet for calming autoimmune diseases - of all kinds. I did NOT do any meds with my last remission and my hair all grew back in completely after about one year. I had blood allergen testing for food allergies done (I also saw a rheumatologist who said she couldn't help and a dermo as well.) The problem is most people do these elimination diets without being tested - and believe me, if someone had told me I was allergic to chocolate or cherries or peaches or raspberries or bananas or ..... you get my point. You wouldn't go to these in the first case, you'd go gluten free or dairy free and then wonder why diet didn't work. I'm NOT allergic to wheat or gluten but I AM allergic to chocolate, cherries, peaches, raspberries... and about 300 other food and food-chemical compounds!  I wish I'd have taken a before picture with my first bout of AA / AU and then after. 

Mine came back out of remission because of some pretty extreme stress last year. My hair did stick around all throughout this seven months of hell, but then fell out about four months later (!) but it has stopped falling out and I'm pretty sure it's growing again. I've eliminated that stress from my life (permanently) and I have good support from my family and have changed my work life entirely. It CAN work, diet, exercise and all of that, but you have to get tested by an allergist! In my case, I did the testing with a lab in Florida and my Registered Dietician worked with me on the diet that the program (done by a doctor) recommended for me. 

Comment by Robin on December 21, 2015 at 9:19am

I know that there is not a lot known about alopecia and how it is triggered. What is known is that it is an autoimmune condition that is treated with immune supressant drugs. These drugs are used to calm an over active immune response. Why did the system go into high gear? Why is it that it is said, if you have one autoimmune condition you will have another? There must be a genetic component to what part of the body is attacked by the immune system when triggered, there must be a trigger, and there must be something or a process that supports the attack. This is my thinking. This is true for alopecia as well as the other autoimmune diseases. If we can find reasons that the body is acting this way then maybe we can get to a cause.

I am a person who honors medical science. I love Stanford and all it has done for my family, including a daughter with cystic fibrosis who had a lung transplant. She takes methotrexate as one of her anti rejection drugs among many others. But, I am also aware that medicine does not have all of the answers. When it comes to nutrition, medicine is very lacking in its understanding. I have discussed switching my diet to an anti inflammatory diet with my dermatologist and my internal medicine drs. They are both supportive and interested because they have seen anecdotal evidence from other patients that this type of diet is helpful and relieves symptoms. They can only offer me immune suppressants. The work and study of PhD. Sara Ballantyne and other MDs who have had autoimmune conditions themselves is very compelling. No there have not been enough studies done. Diet studies are very difficult to do and they take a long time and there is not a lot of interest in them. But, how Dr. Ballantyne has delivered her research and study is logical and intelligent. Instead of suppressing the immune system we need to stop the triggers, heal the pathway (the gut) and support a healthy immune system. This seems to make sense and there are a lot of people who get a lot of relief for all kinds of conditions this way.

I want to take care of myself and I do not want to be burdened with more autoimmune conditions. I may get more any way but after experiencing this autoimmune paleo approach diet I see that I am feeling really well, my skin glows, and I look healthier. This must be good for me. It is hard and it does take discipline and I hope I can keep it up. I just do not want to take the immune suppressant drugs....I know what they are because my daughter's life depends on them. They can cause serious issues. I would not trade my health for my hair......not worth it to me....I can get a wig but getting a strange infection that can truly harm me is not worth it to me.

So, that is that......this alopecia thing is difficult for all of us. We all want answers and help and cures. We have to do what is best and I am sad for those of you that are trying so hard and not getting any help with diet changes. I am going to keep this up as it make a lot of sense for my overall health and it makes sense to me that it should also influence my alopecia. May this coming year be one of answers and good health for you all.

Comment by Poppy UK on December 21, 2015 at 1:58pm

I have been juicing for about a year now, not always organic,but I eat raw whenever I can, also taking calcium and vitamin b plus cod liver oils, I have cut out most gluten and dairy, I feel much better and my eyebrows are growing back, there is downy hair here and there on my head, not a lot but I see this as a positive sign, I don't know if the diet is working, but I feel healthier, and surely that's the benefit.

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