Diagnosed AU without trigger: (trying) to cure the natural way

Dear all,


This is my first post. Last September suddenly out of the blue I started losing my hair, and it progressed very quick between 2 1/2 months to AU. Never had it before, On my 45th (!) The only thing I remember is that my hair became more thin when my mother died (I found her in November 2011 she fell from the stairs in her hallway) she had diabetes 2) So i think something to do with the wrong genes (my father has COPD/ asthma and Vitiligo and both grandmothers had diabetes 2), chronic stress, hormones and something with my intestines (painful stool since 2010: sorry too much information hahah) and dyeing my hair blonde too much (balayage, ombre) and i was addicted to Gel nailpolish. (Last year it started with severe headaches (skipped period 3 times and it returned + a got a cold/ flu) 2 weeks before my doctor prescribed vit D, then I got the flu and my skin started itching really bad, also my eyes(blepharitis) A week later I was on a vacation in Bilbao and San Sebastian the shedding began. In the swimmingpool I saw my hair receding and I thought something is seriously wrong. I thought I was going to die!

Did a lot of tests but apart from sensitive skin and AU, the endocrinologist and dermatologist said I have no other autoimmune dissease and they don't know what triggered it. What I notice now is that after losing all my hair my skin is more dry, so I try every day to rub my skin with sesame oil (ayurvedic)and use coconut oil as a night mask.And massage my scalp with argan and other essential oils (I'm a massage therapist) my eyes became more sensitive to light so wearing sunglasses is now completely legit :)

I was wondering if there are more people who experienced the same, 'out of the blue' AA/AU without other severe autoimmune diseases like thyroid or Crohns or Hashimotos or Psoriasis (My skin condition worsened though, had a weird rash breakout 2 months ago because of stress and work in the sauna I think) My skin is also more sensitive to warmth (working in a sauna giving hamams is not so much fun anymore) and more sensitive to scented body and shower oils (even natural) also allergic to some 'perfume mix' not all perfume but certainly perubalsam, Cinnamal.

After it all began, I went natural, reading labels more, food labels + make-up, health and beauty items. Also started gluten free, and prep myself to try GAPS or AIP. Tomorrow I'm going to visit an orthomolecular GP who is specialized in Autoneuroimmunology because I need some coaching to go on this diet because I want to do it right. I don't think that it will bring my hair back but I understand it's better to start the diet to prevent becoming polyautoimmune (more auto immune diseases)

The beginning of this year I gave blood in a clinic in Antwerp to a proffessor genetics for research (for the next generations of Alopecians) I also tried UVB for a few months but it did not help getting my hair back. Going gluten free did not help but, feel better because still managed to have the same weight as when I was 18. If there was a possibility I would start with Xeljanz but am waiting for a safe and inexpensive cure (the professor told me there are liver- related risks)

Oh I'm thinking of trying DCP but the stories I already read on this forum are depressing and scary. Still thinking about it but first going to try and see what A few months on the GAPS or AIP will do


I learn a lot here, I'll keep on reading reading and learning about this strange disease because still trying to cope.

Thanks for all the info you guys.



Kind regards and greetings from Holland,

Gon

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Hi and welcome~

I don't think I have any other autoimmune diseases though I'm going to recheck my thyroid. I had a normal TSH but I'm going back to check on my T3, T4, etc. The only other thing I have besides alopecia is dry eyes from MGD. I'm quite certain my trigger for alopecia was stress. I was insanely stressed prior and during the time leading up to my diagnosis. I don't see or know anyone in my family with this condition either, so I guess mine seems quite out of the blue. For now I'll just have to keep doing research. Hang in there!

-Strawberry

Dear Strawberry,

Thank you for your reply. I've read your story. You are also new to this. I understand it's scary as hell. I think chronic stress was also the biggest factor for me. I was also glad that I didn't have more auto immune disorders.

I've been to the orthomolecular doctor last Friday and he said he wanted to calm down the immunesystem an told me to begin with the Paleo diet, I was already gluten free and no milk the cheese, candy and chocolate I will miss :( (when complete on Paleo I will try GAPS as well)

Only 3 meals a day, no snacks. (to calm down my gut as well)


He advised also intermittant fasting (mondays and thursdays not eating 18 hours. Or you I can split 500 kcal in breakfast and dinner but going to try only dinner today.

He told me 2 minutes cold shower when getting shower is also good for the immunesystem and skin.

Fish oil, Zinc, vit. D are the most important and Biotine, and a good multi.

This is the first day I start with intermittant fasting. From what I read it's very easy. For more info check the BBC documentary:

https://vimeo.com/103656060

I will try this,
It would be great if I can solve this the natural way.
See if this natural way of calming my immune system will help.
Since we have no Xeljanz here. Untill then I try this.

Thank you for accepting my friend request, Gon. I'm sorry for replying back so late - I've been waiting for my thyroid results. It appears my T4 and antibodies are normal. I have heard of the autoimmune protocol diet, which is very strict, more so than going gluten free. Is this what you're trying out? It sounds so difficult but if it works, I'll try it. I would love to know whether you see results in the future.

I have also heard great things about supplementing with higher vitamin D dosages. Someone regrew their hair by taking 10,000IU a day. I'm not sure how safe that is though. As for Xeljianz, I do not have RA so I don't know if I can actually take it. Thank you for sharing for you know from your doctor though. That is very nice of you.

Hi Strawberry,

I have 3 growing hairs (since I quit gluten I think) on my scalp, not a lot but it is a start,  : )

Xeljanz is an immune supressor,

not sure what it does to the liver in the long run to be quite frankly. 

I started with Paleo, going GAPS, (not so difficult if you are not on a hamburger and soda diet everyday, and I guess you are not) because I noticed I can eat raw CHEESE and raw yoghurt in small quantities , and not with AIP so I chose the most comfy diet to start so I can get used to the change in food preparation etc. What I am going to do is this: next week I'm starting the GAPS introduction, that is only Bone broth (I already did some groceries at farms nearby, bought lot's of bones haha, so that I know the food is safe) and Raw Yoghurt to reset and see where it leads to.  

I started losing some facial hair in October 2015, then went through a lot of stress with my brother passing away and started losing hair on my scalp. It soon progressed to losing patches all over my body and have started losing my eyebrows. I had thyroid checked and several blood tests and everything came back good.
Read a lot on here about diet so I startded the Whole 30 program and today is day 10. Not sure it will cause my hair to regrow but worth a try and very healthy anyway. I have had a very bad diet for the last few years. I really believe my diet and stress where the triggers but will see.

Dear Heisten, Thank you for your reply.

Yes Stress is the famous trigger..

I already started Paleo. That is what the Orthomolecular doctor told me, no gluten, no milk, and to calm down the immune system: 3 meals a day. And to make it worse 2 Fast days (500kcal) a week. He also advised to take a cold shower when showering, that is good to reset the immune system. And to take 45mg Zinc, 1000 mg Fish oil, 3000 (75mg) vit D, and Biotine. Oh yes and he asked me if I had a goal in my life. and think about it. He said that when he was in spain following Psychoneuroimmunology (PNI) lessons the professor told him that there was a Spanish lady with colitis ulcerosa. He asked her what she wanted to do in life and regretted not doing, (she wanted to study Psychology) she did, had her diploma and lost her colitis ulcerosa.  

I don't know what the whole 30 is and I will read about it. thanks for the info.

I visited my fysiotherapist last week and he told me the partner of a friend suddenly got alopecia totalis. I asked if her hair came back and it did. He told me she started eating and living healthy. So there is hope.

Take care

Best regards,

Gonda Leona

Gonda

Here is a little information on Whole 30:

What is the Whole30?

Established by Dallas Hartwig and Melissa Hartwig (of Whole9) in April 2009, the Whole30® is our original nutritional program designed to change your life in 30 days. Think of it as a short-term nutritional reset, designed to help you put an end to unhealthy cravings and habits, restore a healthy metabolism, heal your digestive tract, and balance your immune system.

I'm on day 17 and physically and mentally feeling better than I have for quite awhile.

If hair starts re-growing it will be great but if not I've started a healthier life style.

Good Luck

Tom

Dear Heisten,

Thank you for the info on Whole 30

Here I found an intersting link about the purpose of anti inflammatory diets:

http://coolinginflammation.blogspot.nl/search/label/anti-inflammato...

http://www.marksdailyapple.com/the-primal-blueprint-21-day-challeng...

An anti inflammatory diet doesn't have to be expensive (superfoods do not exist), you just skip a few things like gluten, starch vegetables and dairy and focus on the things like more healthy greens (no legumes) you can eat and feel better. 

I experience the same, I feel better living glutenfree, I think it will take a while cleaning up the gut and normalise out of balance gutflora, also liver cleanse is not a bad idea I think..

See it as an investment in healthy aging.

Good luck and have a nice weekend Tom

I started losing my hair back in 2011 and lost probably close to 75%. I have been researching and trying everything natural  including changing my diet. About a year ago i started taking food grade diamataceous earth and within 2 weeks had hair coming in. I also started massaging essential oils into my scalp and for the first time in years i got a real haircut and go out without a hat. It has been a long journey and i appreciate every strand of hair and now will continue eating healthy and taking supplements to keep it.

 

Which DE product do you use and how much daily?

Dear Dawn,

Thank you for your reply. Diamataceous earth is new to me..I shall google it. Amazing that you had your hair back. What kind of supplements do you take? I already started eating healthy. no gluten potatoes etc, almost no rice (that's difficult for me) no sugar but sometimes pure chocolate. I'm going to write my dermatologist and postpone the topical immunotherapy. Not looking forward to it and first want to try if living and eating healthy and stress free will help. Yesterday I went to 2 Eco farms and bought bio eggs, cheese, and meat so tomorrow I'm going to make my first bone broth. And thinking of fermenting yoghurt. First I have to find a farm who sells raw milk. (the only healthy milk is straight from the cows)

I massage my scalp with argan oil and sometimes a mix. I also found an ayurvedic amla paste I am going to try. I've read something about golden tumeric paste. Also interesting..

Best regards,

Gonda Leona 

Hi Dawn, could you please tell us more about DE? I was inspired by your post and ordered it. It's been 2,5 wks now. I'm also using ldn. How did you notice the new hairs? I have also lost about 75%, but just recently, I noticed some 'dots' on some of the bald areas. Not sure, whether that will grow out to be new hairs and if that is thanks to the DE or ldn (low dose naltrexone). So, I'd be happy if you could share more details. Did the hairs start of like that and how long did it take before they were actually growing? Did it grow fast? How much DE did/do you (still) take and did you notice something different in your body (stomache pain, bowel movement, etc)? Many questions:-). Looking forward to your reply. I did a lot of research, some are very positive, others less. I will start with bentonite clay also.

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