AUTOIMMUNE ALOPECIA RESEARCH UK / THE FOOD HOSPITAL

Lets be Positive and Pro Active


Recently I have had one individual radically demanding me to take down my blog site as he suggests that it is false information and that I am preaching to people.  He also said that he could never support Auotimmune Alopecia Research UK because he believes what I am writing about has absolutely nothing to do with Alopecia.  I was firstly hurt by his comments (as he too is an Alopecia sufferer) and secondly disappointed that a sufferer would not embrace a new angle, a new concept, another way forward which can only be good for our community. He believes that autoimmunity and the gut has nothing to do with Alopecia since it has never been researched or proven.  This is true that it has never been researched.  If it is not reserched then how can we ever rule it out???  Alopecia has never had it’s own research in order to look farther down these avenues.  So if we do not investigate farther….. Then how will one ever know?????

As I explained on my Home Page, I am not a doctor and the information I put up on this site is from working with anecdotal evidence which I have gathered from speaking with many many Alopecia sufferers over the course of 2 years.  Also from researching on the internet information from other studies regarding other Autoimmune diseases.  I am simply posing questions which need to be investigated and hopefully this is what AARUK can do in the future….. We can begin to document information and symptoms from sufferers through qeuestionnaires and possibly deduce some common factors which can then be singled out and looked into in greater depths.

Before being part of The Food Hospital on Channel 4 last month I had been tampering with my diet for around 12 months.  My Alopecia has always been complete Alopecia Universalis.  I have never had any regrowth in the 10 years of being universalis and I have never had immature velous hairs anywhere on my body (the only place I have had hair is in my knucles, small baby blonde hairs).

Last year when I changed my diet, in 3-4 weeks I noticed tiny tiny blonde hairs appearing on my scalp.  Not all over, but in small areas.  I was amazed because I had never seen a hair on my head in a decade.  For years my body had been attacking hair follicles on a daily basis and for the first time hair follicles (albeit only a few) had began to produce small blonde hairs.  For me this was real hope.  For my individual case of having not had a hair on my head to having a few single hairs was quite extraordinary.  I have never been a sufferer who has had periods of remission of small regrowth for periods of time etc so the coincidence of changing my diet and the hair growth was definite in my mind.

Over the past year I have been “listening” to my body a lot more intently.  I realise when I eat certain foods that I immediately bloat for example pasta or bread.  I soon noticed that if I loaded up on a lot of carbohydrates before or after I exercised or ate cereal then my bowel movements would be halted for a few days.  I also began listening to my body regarding my sugar intake and my energy slumps midday.  Another interesting thing I began to notice was if I ate too much chocolate or sugar more often than not I would get ulcers on the side of my tongue and on wakening in the morning my hands would be stiff and swollen.

One thing that I can deduce is that my body just cannot tolerate certain foods in larger quantities.  I am still learning about my own body. 

Many people have been writing to me and asking me more about the diet that I was on.  I firstly want it to be known that I cannot guarantee that this “diet” will have the same effect on another individual as we are all very different and just because one person cannot tolerate a certain food item it does not say that the next person wont be able to.  With the research being done into the gut and and the microbiome it is apparent that the medical profession is only touching on what could play a massive role in autoimmune diseases.  Changing a persons diet has a direct influence on the composition of the bacteria in the gut.  In our western diets we consume a lot os trans fats/ sugars/ additives/ preservatives which our bodies simply were not designed to ingest.  Our bodies have tolerated these often in excess for many years.

The diet that I shall be talking about can only be good for ones self.  Whether or not your hair grows back I can guarantee you that you will feel 100 times better and your body will be a lot healthier.

Autoimmune Alopecia is a disease with an inflammatory response of one of the largest organs of the body… The skin.  With myself I know I have problems with my digestive system and so hopefully by addressing this first my body has a better chance of healing.  One of the most important things is routine.  We are routine mammals who awaken in the morning, eat during the day and sleep during the night.  Eating patterns should be kept to a daily routine too.  When food goes in it must also come out.  This is very important.  The last thing you want is waste products to be accumulating in your intestines and byproducts/toxins being absorbed into the bloodstream.  Bowel regularity is key and one should be aiming to have at least one bowel movement  everyday.  Drinking plenty of water throughout the day is imperative along with eating fiber rich foods.

There are certain diseses such as inflammatory collitis whereby patients are told to steer clear of high fiber foods as this may irritate the gut farther and cause a flare up so at this point I must say that before making any huge changes to your diet firstly please speak with a medical practitioner or a qualified dietician.

I cut out and reduced these foods in my diet

All dairy products (apart from a good natural yoghurt)

Wheat ( I cut all wheat out, apart from one toasted wholemeal pitta bread a day but I am now cutting this out entirely)

Processed foods

Alcohol

Caffiene

I eat 3 meals a day at routine times 5 hours apart with a snack at 3 hour intervals.

Breakfast   8am

Snack          11am

Lunch         1pm

Snack          3pm

Dinner        6pm     

I NEVER over eat as not to put any strain on my digestive system.

Each meal has 3 components eg carbohydrate, protien, something fresh.

All the food is fresh and nothing is packaged and there are absolutley NO additives or preservatives in anything  I eat.

When doing the diet, with the research I have done by myself I am conscious not to eat foods which are known to cause an inflammatory response within the body.  I am also conscious to include oily fish in my diet for omega 3 and 6 fatty acids. Also to eat fruits and vegetables which are high in antioxidants and a variety of fresh foods in order to obtain a broad spectrum of vitamins and nutrients.

EXAMPLE MEAL PLAN

Breakfast

2 tbsp gluten free organic oats (if not tolerated try millet flakes)

10/15 almonds

Sprinkling Pumpkin seeds

Natural yoghurt

Handful blueberries

Lunch

one toasted wholemeal pitta bread (no additives or preservatives, check the back of packet…… I am in the midst of cutting this out completely)

Spread with avacado (butter substitute)

Salmon, or any other fresh lean protien…. Chicken, Prawns, Mackeral ( I steer clear of red meats as they are known to produce an inflammatory response in the body).  I also eat Alaskan Wild Salmon from the tin….. quite expnsive but so tasty and less contaminants eg mercury

Salad…… including spinach, watercress. red cabbage, baby beetroots (steamed in own juices, no vinegar) spring oninon raddishes…… As much salad as you like

Dinner

Sweet potato or Brown Rice

Protien source, If I had fish for lunch I would have Chicken or turkey for dinner

Vegetables.  If I had salad for lunch I would have Vegetables for dinner.  Vegetables I would try to eat super foods eg Brocolli or Cauliflower, Asparagus  and any other green leafy vegetables

My snacks

Raw vegetable sticks with hummous

Natural Yoghurt

one piece of fruit

Handful nuts

This is a basic diet and from this you can begin to be more adventurous.  You can makes soups in the winter, blended vegetable juices or smoothies as snacks, you can also get great recipes off the internet.

I would love to be sitting here with a full head of hair at this point and be telling each and everyone of you that if you stick to this diet then your hair will grow back.  But sadly (at present) this is not the case.  What I must remember is that I have had Autoimmune Alopecia for over 10 years and for that reason it may take a long time for my body to heal….  What I also have to remember is that even if my hair does not grow back I know now that my body feels and behaves much more healthily than it has ever done;  my skin looks better, I do not suffer from lethargy during the day, my digestive problems have gone AND I have small blonde growth on my head which I have not had ever during my years suffering Alopecia Universalis.

As an Alopecia sufferer I have never accepted having this disease.  I had hair until I was 19 so something changed in my body for it to fall out.  I will not accept having it until I know sustantial research has been done and all avenues have been exhausted….. At present we are a million miles away from that scenario!

By changing my diet and by setting up AARUK  I feel as though I am being proactive and that to me is more cathartic than accepting this as the normal for the rest of my days.  I hope you can all get behind myself and Sheelagh and Emma in the future with the charity and hopefully together we can make a difference

Thanks for reading

XXX

So for my sceptics who wish to make negative comments about my blog … I am not out to preach to anyone about diet. I am not out to make any gurantees (at this stage).  Diet is out there for you experiment with. There is much research out there regarding autoimmune diseases and diet therapies. The foods we eat determine how our bodies function.  We need food to live and we need simple, quality, unprocessed food for our bodies to function optimally….. Not junk food, processed foods, artificially enhanced foods.  I am not blogging about anything that will harm people, it can only make you feel healthier!!!

As for the charity AARUK I do believe we need to look at our community as a group, we need to ASK our community is there a common link with digestive problems?  Celiacs disease which has been genetically linked with Alopecia is very much focused on diet and gluten intolerances.  We need to be investigating these avenues with independant research into Autoimmune Alopecia.

27 thoughts on “Lets be Positive and Pro Active

  1. I took my teenage daughter to see a kineasiologist /nutritionist who very much believes it is something in the gut and an intolerance to certain foods. She advised she cut out wheat, dairy produce, citric, mushrooms & refined sugar. She didn’t like it but her hair grew back quickly. Sadly it came out again and now she refuses to go back on the diet. This wasn’t helped by being told by her consultant dermatologist that it was all a load of rubbish and her advise was to go out and eat the biggest bar of chocolate she could (great advice!!! NOT) However in all my readings on autoimmune problems, it seems to me that diet is the key to all the successes and I am working hard to persuade my daughter to reconsider. Processed foods, additives and sugar just put more stress on the system!

    • HCW….. Oh my goodness….. It is just shocking isn’t it. A dermatologist who has been involved in treating alopecia for over 20 years responded to me in a similar manner. I think it is terrible. How can they rule it out when it has never been researched! I think your daughter should get back on a diet…. It can do more good than harm xx

  2. I absolutely agree with both blogs. Good diet help hair regrowth. I have suffered from hair loss for the past 2 years. I noticed when I changed my diet and started paying attention to my body my hair started to regrow. I do eat diary products but only if they are organic. I also eat red meat which is a form of high iron. My diet is mainy high iron and has helped me with my hair regrowth. I no longer wake up in the middle of the night, full of anxiety that i’m going to loose all of my hair. Thank god, I got of the rubbish diet, listed to my body and started taking good care of it.

    • Kate thank you so much for your response…. the more people who start thinking like you the better. We were not meant to eat all this processed rubblish. back to basics is what I think….. Your comment inspires me to carry on. Please subscribe to the blog via email so you can receive posts regarding the progression of the new charity xx

      • HI Jayne, did the food hospital give you a list of foods you should eat and shouldn’t eat? If so what can you share with us on this blog with regards to the Food Hospital’s recommendations? Or perhaps even recipies? Thanks

  3. Thanks for this its really interesting…Starting from tomorrow I am going to put your diet into practice and see what happens. Giving up wine might be a small problem!!
    I have had AU for the last year and I started to see a nutritionist in January but the vitamins she wanted me to go on were so expensive it just was not feasible. This is something that I also find frustrating…the expense of wigs, vitamins, organic food etc all for a disease that we cannot help. I know it is not life threatening but I cannot help but feel we are hard done by. Maybe if we all tried the diet you recommend and post feedback on any hair growth then it might help us to work out foods that work and foods that don’t. x PS. there are always going to be people who are negative, best thing to do is ignore them – negativity will get us nowhere 🙂

    • Hi Anna, thank you so much for your kind words….. with the basic diet that I have posted I must say that the wholemeal pitta bread is something which I am trying to cut out altogether, then the diet will be fully wheat and gluten free. I tend to not substitute breads or cakes with anything from a “gluten free” range because they are still processed and have other additives in. The one pitta bread seemed to not cause me any problems but if I ate more than one then it would…. As a test I will cut it out. The natural yoghurt aswell i made sure was organic and had good bacteria in it… sometimes I would substitute this with organic natural goats yoghurt.
      I would love if you were going oon this to document and let me know if you have any success xx i too shall keep you posted

  4. Perhaps a tab on this site with peoples suggested menu’s might also be helpful…my biggest problem is thinking of what to make and buy, if there was a central place on this site with recipe ideas that could be really useful? x

    • Hi Anna, that sounds like a great idea….. I know what you mean about thinking of things to make…. i always just google a gluten free recipe with foods that I have in the presses! I will set up a tab and get the ball rolling xx

    • Aw thanks Sue….. good luck trying the diet…. Can you please subscribe if you have not already done so so I can keep you up to date with the charity…. Also we are hoping to set up a questionnaire for Alopecia sufferers to complete in the near future to try to put some more pieces of the puzzle together. A food diary is good to keep because sometimes I have to say you do forget what you have eaten in a day (perhaps selective memory in some cases lol)
      Good luck and let me know how you get on xx

    • Yes that is a very good idea. As Alopecia is an inflammatory condition also…..I modified mine by cutting out the red meat and stering clear of specific fruits. I posted a food diary sheet which is quite helpful too x

  5. Hi Jayne,
    I could not agree with you more. I believe I am living proof that the gut and what we eat has something to do with my alopecia. Mine also started at about 20 years of age and then in my 30’s it escalated. I was AU for 2 years and then with all my research I came across Mary Corrigan’s diet, I contacted her and got my hands on her book through a family member in the UK (I am in SA). I stuck to her diet religiously, the anti candida plan, and my hair grew back about 80% of it. I then became complacent as time went on and the gluten creeped back in and the sugar and a little dairy here and there and then of course I started noticing my new found hair starting to fall out. It cannot be coincedence! So now I am back on my horse and starting all over again. It is not easy but it can be done. I took my profile off of Alopecia World because of negative people not wanting anyone to spread a little hope. I am sure you are aware of Global Alopecia Mission, what they have to say makes so much sense…. Bring on the research. I wish we could start something like that here in SA. I feel like an isolated case:-) All the alopecians I know are overseas! Dermatologists and the like are happy to jab us dozens of times in the head and convince us that this will cure us, why would they tell us that the cause lies in possible food sensitivity? Because then they would be losing part of their livelihood. I have no faith in the doctors anymore. I have accomplished more with my own research into food allergies and gut sensitivity than any doctor could tell me. Jayne stick to your diet, it will take time, but those little blond hairs will become terminal hairs. However what everyone needs to remember is that, it is not a diet, it is a lifestyle. If one is going to make these changes in what they eat, it needs to be a permanent change and not just 6weeks at a time. So for that teenage girl who feels let down by the diet, please try again, I know how you feel. It all comes down to discipline. Jayne I love reading your blog, thank you so much, it is comforting and energising and positive and full of hope. Don’t get bullied by anyone who can’t see what you and many others are trying to do for the alopecian community. We do not have to live with this, we don’t want to live with this and if there is a way you can bet your bottom dollar we will find it.

    • Marlene,
      Thankyou so much for your message. I agree with you 100% and again you are proof that what you eat has so much to do with auotimuune alopecia….. Your response is amazing and I hope many take heed from you! I am slowly fixing my body.. I have faith that my hair will return because I now know that I am on the right path now. From the foods that I used to consume regularly to the foods I eat now are worlds apart and I can feel the difference within my body!

      I would love to keep in touch with you.

      Although you feel isolated over there you can always contact me whenever you feel the need. I also know a man called David who set up Alopecia Kenya Chapter…. you should try to contact him. He is lovely.

      Much Love Marlene,

      Again a plesure to hear your story xxx

      • I think it is fantastic that so many success stories are coming out on this log. that only confirms that diet and autoimmune alopecia need to be looked into farther. It seems crazy to me that the medical profession do not want to talk to people who have had success through diet and then research this avenue. Surely it would be easier to investigate something from working backwards rather than fumble forwards?
        I cannot wait for Autoimmune Alopecia Research UK to be set up. Really I cannot. the future is bright 🙂 xxx

  6. Do you have any information regarding Feratin levels. I know there is some connection but I’m not too clear on things other than when tested mine was very low. As this is not something I get tested for regularly, I don’t know what my feratin levels are now. If I remeber correctly, it’s not normal kind of Iron deficiency, but a deficiency in the Iron in the bone? (this is a recollection from years back, so may be incorrect). I need to read your more regards your diet, but my one concern is the cost of having to buy non proccessed food etc, it’s just so expensive. It seems the trashier the food, the more chance of it being cheaper or on offer. To go off on another tangent, I watched a programme where a person was “cured” of severe Psoriasis through a course of Hypnosis, if alopecia was stress related, would hypnosis not be able to help towards aleviating the problem. (I personally don’t think it’s stress related). I too would be gratefull for any recipe ideas as I wouldn’t know where to begin.

    • Yes Sue… my serrum ferritin levels are low. Trying to get suffiicient Iron through diet is important and then you can supplement too….. Mary Corrigan speaks a lot of Serrum Ferritin levels in her book. Hers too was also low and so she put herself on a high iron diet. I cut out red meat from my diet but perhaps i will try adding the odd piece of steak 🙂
      Hypnosis…. i dont know about… I have tried it but I really do feel that alopecia has so many triggers. if you think your own trigger is anxiety or constant stress then perhaps hypnosis would be good. I believe mine was triggered by antibiotics/contraceptive pill so I don’t believe hypnosis would work for me. Yes I shall try to post up some recipes. If you find any feel free to post and share some goodies xx

      • Dear Jayne, I saw the food hospital programme briefly and understand you we’re taking a probiotic called something like bifidus bacterium infantis as part of the diet. Would you kindly let me know where I can purchase this as I understand it helped with symptoms of IBS which I suffer from. Many thanks, John.

  7. Hi Jayne, Have read your blog with great interest and really admire what you are doing. Its a brave thing to take a new perspective and fight against convention and establishment to get your voice heard so good for you! its true what some people have mentioned on here that doctors are so keen to give you expensive invasive treatments yet refuse to acknowledge the power of good nutrition, and surely Medicine is a science which is based in research and evidence? Im a nurse as well as a patient so i know how frustrating and stuck in their ways some doctors can be. I turn 30 next month and have had hair loss since the age of 17, its exhausting. I haven’t lost all my hair but i have diffuse AA and my hair sheds all across my head and has thinned drastically over the years. i went through every treatment there was including Minoxidil and steroids- nothing really worked..and then i got active and researched nutrition online and everywhere i could. My family are coeliacs and hypothyroids and we all have thinning hair so its clear there is at least some link between autoimmune conditions, diet and hair loss. Anyway i cut out gluten as well as excess processed fatty and sugary foods. I also take high dose iron and Vitamin D among other supplements. i have noticed over the past 9 months that not only has my shedding decreased but i have hundreds of new 1-3 inch hairs growing all over my head! for the first time in years it seems something is working 🙂 am keen to learn more about incorporating probiotics into my diet as I too tend to experience IBS symptoms so i will be looking into taking some probiotics also, any you could recommend would be so helpful?

    Please keep us posted on your progress 🙂
    Sarah

    • Sarah,

      Fantastic! that is great news….. yes unfortunately doctors are not thinking down these lines yet….. but they will… they are always miles behind!! I see food now as medicine for my autoimmune condition….. It would be great to keep in touch. I have a lady on the diet with amazing hair growth…. I shall email you some information on probiotics xxx

  8. Thank you for your blog. I have enjoyed reading it. My husband starting losing patches about 6 months ago. It has progressed to alopecia universalis very quickly. We are going to try this starting tomorrow. I’ll let you know how things go.;)

    • Hi Claire, thank you so much for reading the blog. If your husband would like to take part in our research study this year please email me on jayne@aar-uk.org and I will send you out a form for him to complete so that he is on our database. We really need hundreds of alopecia patients to take part so it is very important. There is not a lot of research into this disease as it is not seen as debilitating. However it can be psychologically challenging as though who suffer it do know.

      I hope to hear back from you and your husband

      Best wishes

      Jayne x

  9. So glad I came across this! I have alopecia universalis. I went to numerous doctors, tried steroid creams with no results. My mom convinced me to see a homeopath and he advised me that I change my diet. I also cut out all wheat and sugar and amazingly my hair is slowly but surely growing back! Couldn’t agree more with your article!

  10. Please ignore the haters Jayne and carry on with your inspiring work and research in the field of autoimmunity and alopecia. Like you have said this is an under-researched area and has lacked interest from the medical community for years. I strongly believe alopecia and many other autoimmune health problems are triggered and inflamed by particular food groups and for myself cutting out wheat, sugar & dairy has massively helped my hair. I have suffered with hair loss for over 10 years and have seen promising improvements since cutting out known allergens and inflammatory foods. I no longer have an enormous amount of daily hair loss and have regrowth all over my head. I have only changed my diet so can’t really attribute these changes to anything else. I can’t understand why a fellow sufferer or indeed anyone would want to criticise the worthy research you are doing in this unexplored field. Conventional medicine had failed to produce any kind of reliable treatment or cure for hair loss so it certainly can’t hurt to try a natural approach without drugs that cause side effects and are in no way guaranteed to work. Perhaps this person has a vested interest in the pharmaceutical industry?

    I wish you all the best and ongoing success 🙂

    • Hi Sarah, thank you for your kind words! It is such an interesting area to research and we hope to do the alopecia world proud with the projects we shall be pursuing. Very exciting and we have so much to explore and find out. The human body is a very sophisticated piece of “machinery”. Thank you for following this blog. I know it is not very active at all but with the charity and my own work schedule I get very little opportunity to complete this monthly blog.

      I am so please to hear of your hair growth and I know too that you are on the right track.

      One must work hard and follow their own path to get results. i would much rather regret what I do than regret what I do not do.

      Much Love

      Jayne

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