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Autoimmune Conundrum

Commented on January 30, 2016
Created November 28, 2012 at 1:13 PM

Hi, I have the autoimmune condition alopecia universalis, (total hairloss.) I got it when I was 15 and am now 34. At 21 my hair started to grow back and by 26 I had quite a lot of hair (though not all.) During this time I had adopted a vegetarian approach to eating. Lots of veg, fresh juices, beans. I never went low fat, still ate some chicken, fish and butter but my food was vegetarian for the most part.

From 26 to 31 (whilst still eating the same way) my hair all fell out again this was following a stressful event. I discovered paleo at about 31 and was amazed and delighted that someone was at last linking autoimmunity to diet and I started eating this way. I would say for the last 3 years I have been more paleoish than paleo. Still eating dairy and I fall off the gluten free wagon every now and again. The thing is since going primal, my alopecia has gotten worse. I have now lost every hair on my body and I always had some growing.

I know this isn't supposed to happen. The internet is awash with stories of how great paleo is for autoimmune conditions. How excited I was to try it and how crushing it is that my condition has worsened. Even if I haven't been able to do it 100% I at least thought by adopting the 80/20 rule that I would see some benefits or at the very least that my condition would stay the same not worsen.

I'm starting to think that my vegetarianish approach was better. Though this goes against all the evolutionary logic etc. But I just seemed to do better on it. Is it possible that some people are better suited to lots of plant food as opposed to animal fats and protein? I am just a wee bit puzzled by what happened to me on primal.

Any thoughts anyone?

089dd41b18fbb95ebb5347cded708d98

(5635)

on December 27, 2012
at 03:59 AM

i definitely agree.

75d65450b6ff0be7b969fb321f1200ac

(2506)

on December 26, 2012
at 09:00 PM

I don't anyone is talking about curing autoimmune diseases since most if not all of them are incurable, pure and simple. Attaining remission of symptoms is not the same thing as curing.

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on December 26, 2012
at 07:21 PM

+1 Totally agree on 100% cutting of gluten. I never thought gluten was a problem for me when I was experiencing some autoimmune issues, but when I actually truly cut it out 100%, I felt so much better, and when I had a slip, I could see how much worse I felt.

B7646bb4582c3adfc977b57392c35a92

on November 28, 2012
at 07:44 PM

Well, the cheap way to figure it out is to stay off for about a month and see how you feel.

92c2ed40cf1145f8b8085cb4c5e81d36

(0)

on November 28, 2012
at 05:42 PM

Thanks! Yes I do sometimes wonder if I've done more harm than good by going through phases of being gluten free. I don't have any obvious adverse reaction to gluten so I do find it hard to stay off it 100%.

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5 Answers

1
525549c8b273a1ce4add3153aa4ee69c

(20)

on December 26, 2012
at 06:45 PM

I second the thyroid-absolutely the culprit. I, and 2 of my 5kids have thyroid problems, and major hair loss. www.stopthethyroidmadness.com for more info.al my best-aj

1
B7646bb4582c3adfc977b57392c35a92

on November 28, 2012
at 03:10 PM

Hashimoto's thyroiditis here, went gluten free about 2 years ago, and started my paleo journey about 5 months ago.

One of the things I've discovered, especially with gluten: halfway doesn't work. It's better just to eat it and let your immune system adapt than to cheat every once in a while and continuously shock your system. It ends up being far more damaging since your system never adapts.

B7646bb4582c3adfc977b57392c35a92

on November 28, 2012
at 07:44 PM

Well, the cheap way to figure it out is to stay off for about a month and see how you feel.

92c2ed40cf1145f8b8085cb4c5e81d36

(0)

on November 28, 2012
at 05:42 PM

Thanks! Yes I do sometimes wonder if I've done more harm than good by going through phases of being gluten free. I don't have any obvious adverse reaction to gluten so I do find it hard to stay off it 100%.

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on December 26, 2012
at 07:21 PM

+1 Totally agree on 100% cutting of gluten. I never thought gluten was a problem for me when I was experiencing some autoimmune issues, but when I actually truly cut it out 100%, I felt so much better, and when I had a slip, I could see how much worse I felt.

0
F153d78b345635d3f85188d6cd973f74

on January 28, 2016
at 03:12 PM

I agree with the others: going halfway will not work. Especially with dairy and gluten.

I am on a similar exploration with a hair-loss auto-immune disease (lichen planopilaris). I’ve been on the STRICT auto-immune diet (no cheating) for 10 weeks and I think I feel worse as well. My hair loss and scalp pain is the same and now I have added IBS symptoms which were never an issue before. I was mostly vegan before (eating no dairy and no gluten and no eggs) going on the AIP.

So no real answer from me but I do feel like my body does not handle meat well. I am getting some more tests done as it seems some people cannot process animal proteins well which may lead to a build-up of ammonia.

I was wondering if you had an update regarding possible thyroid triggers? I had my TSH and free T4 tested and they were normal, but I didn’t get the antibody test done.

(I was also wondering how you EMOTIONALLY dealt with losing your hair? I just started losing my hair about a year ago and sometimes I just cannot cope with it.)

92c2ed40cf1145f8b8085cb4c5e81d36

(0)

on January 30, 2016
at 10:57 AM

Hi Lurath, 

I am sorry to hear about your hair loss. Any blood tests I've undertaken have come back normal. My thyroid was a little on the high side but still within range. 

On the emotional side, I did find it very difficult to cope when it happened to me first. I've tried different things at different times. I read a lot of self help books which helped me for a time but I'm not a fan of these any longer!! I also went to a support group for a while. It helped at the time but I no longer feel the need for this and found that most people had no desire to find a cure which is something I find really frustrating!! Getting a really good wig helped me enormously. I don't know if you need one or not - I did as I lost all my hair. If you do, I would recommend Freedom Wigs above any other.

Hope this is of some help.  

 

0
75d65450b6ff0be7b969fb321f1200ac

(2506)

on December 26, 2012
at 09:04 PM

Psoriasis is my personal autoimmune nightmare. I agree with others: you have to go 100% in eliminating potential food triggers and wait (90 days?) to have any meaningful results. You really have to be a diet Nazi, pure and simple. In my own experience, and based on what I've read from others, dairy and gluten are the most obvious suspects. Yet I will say that went further to eliminate all grains and starchy veggies my symptoms improved even more, ... but then again I also suffered from IBS.

Best of luck.

_Lazza

0
089dd41b18fbb95ebb5347cded708d98

(5635)

on December 26, 2012
at 07:33 PM

i don't think a paleo diet can cure autoimmune disease on its own for everyone. i've read a few lucky people stories, but i also have an AI condition and have not been able to get into remission with a paleo diet. it lessens my symptoms, but i am still in a major flare.

if you feel better following the diet you were previously, do that. it sounds pretty much the exact same as paleo besides the beans. maybe just add beans back in so it resembles your older diet and see if that helps.

75d65450b6ff0be7b969fb321f1200ac

(2506)

on December 26, 2012
at 09:00 PM

I don't anyone is talking about curing autoimmune diseases since most if not all of them are incurable, pure and simple. Attaining remission of symptoms is not the same thing as curing.

089dd41b18fbb95ebb5347cded708d98

(5635)

on December 27, 2012
at 03:59 AM

i definitely agree.

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