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Hi all,

So I am wondering how many people have had issues with their hair due to Celiac/NCGS? Mine has been temperamental for the last few years. It's always been fine but never this thin and never with this weird growth pattern: I have a ring around my crown where the hair never grows longer than 3-4 inches. It's odd. I only noticed it about two years ago, so I do not believe it's always been like that. It's a bit distressing.

 

I saw my doctor's NP about it - this was before my dx - and she said "Oh, don't worry about it. It's just part of aging." I was 35 at the time. I guess I am hoping she was wrong and that it may start to fill out again someday. I have heard that hair can take a long time to recover and I have also had a lot of stress this year, what with trying to figure out what was wrong with me, meeting lots of resistance from doctors while I continued to get worse and then learning how to properly care for myself once we figured out what was going on.

 

Your thoughts and experiences? Thanks, everyone.

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I have a working theory ...  lol.  I have the thin fine hair too, ugh.  Very brittle, very dry and hardly grows.  So anyway, about 11 months ago I was getting my cancer treatment which knocked out my immune system.  During the treatment my hair changed.  It stopped breaking, didn't tangle up in the shower, combed through with no snarls and actually grew!  My theory is that my malfunctioning immune system kept my hair a mess.  When my immune system was stopped, hair was great!.  Interesting huh? 

 

The supplement Biotin can help with hair and nails also.  Hopefully your immune system stops attacking and your hair will recover.

 

Colleen

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How are your fingernails and toenails?  My theory is it takes awhile for your body to replenish itself.  My fingernails used to be paper thin, now they're strong.  It took longer for my hair to start recovering, but I have Lupus too, and hair loss is typical with Lupus.

 

I don't think the NP gave you an adequate answer.  In fact, I'd have to say she gave you phony baloney. 

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I had a lot of hair loss... hated it! I too had pretty severe thinning over my temples and then it would grow in wispy. Yuck. I also developed some bald patches  on my crown, and my part is much too wide.... BUT it did improve going gluten-free, and it is improving after my thyroid was treated to proper hormone levels. I find that I still have some sort of autoimmune flare-up when stressed or just a every few months when my hair falls out thicker again... I don't know what causes that.

 

Anyway my hair thickness has improved overall but the areas that thinned the most are still my thinnest and seem to be the first spots to drop their follicles. Sigh.

 

My theory is opposite of Marilyn's. I have a high level of growth hormones (higher than most) and that causes the body to create new cells rather than repair or keep what it's got. I'm guessing that it works with hair too so my body just drops the hair and starts fresh when things affect my... hair health.... Just a theory though.

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I have a working theory ...  lol.  I have the thin fine hair too, ugh.  Very brittle, very dry and hardly grows.  So anyway, about 11 months ago I was getting my cancer treatment which knocked out my immune system.  During the treatment my hair changed.  It stopped breaking, didn't tangle up in the shower, combed through with no snarls and actually grew!  My theory is that my malfunctioning immune system kept my hair a mess.  When my immune system was stopped, hair was great!.  Interesting huh? 

 

The supplement Biotin can help with hair and nails also.  Hopefully your immune system stops attacking and your hair will recover.

 

Colleen

Very interesting theory! How is your hair now? I have heard about Biotin, but I wonder if it was just snake oil. I may give it a shot.

 

How are your fingernails and toenails?  My theory is it takes awhile for your body to replenish itself.  My fingernails used to be paper thin, now they're strong.  It took longer for my hair to start recovering, but I have Lupus too, and hair loss is typical with Lupus.

 

I don't think the NP gave you an adequate answer.  In fact, I'd have to say she gave you phony baloney. 

My fingernails and toenails are quite strong, always have been, interestingly enough. I have noticed that I get fewer white dots on my fingernails now. And the thing about my hair is, it's not noticeably thin to the casual observer - it is very fine and soft (my mom calls it duck fluff) but not thin, meaning I have a decent amount of it and my scalp does not show through. And what I do have has a lot of body - I always say it's because it is so fine that it defies gravity! Heh. It's only when I lift the sections around the crown that you can see that the density stop around 3-4 inches. I was trying to grow my hair out and it just looked ridiculous. But with a shorter haircut it looks normal.

 

Yeah, that NP was pretty clueless about a lot of things, IMO. I also told her that I felt like I was addicted to sugar and baked goods. She told me I just needed to learn self control. Since being gluten free, my sweet tooth is significantly more manageable.

 

I had a lot of hair loss... hated it! I too had pretty severe thinning over my temples and then it would grow in wispy. Yuck. I also developed some bald patches  on my crown, and my part is much too wide.... BUT it did improve going gluten-free, and it is improving after my thyroid was treated to proper hormone levels. I find that I still have some sort of autoimmune flare-up when stressed or just a every few months when my hair falls out thicker again... I don't know what causes that.

 

Anyway my hair thickness has improved overall but the areas that thinned the most are still my thinnest and seem to be the first spots to drop their follicles. Sigh.

 

My theory is opposite of Marilyn's. I have a high level of growth hormones (higher than most) and that causes the body to create new cells rather than repair or keep what it's got. I'm guessing that it works with hair too so my body just drops the hair and starts fresh when things affect my... hair health.... Just a theory though.

I had noticed what seemed to be some thinning around my temples, now that you mention it. And I swear I see some new "baby hairs" in that area now, though I cannot say for sure if they are new. I will just have to wait and see. Hair does seem to take a long time to recover.

 

You theory is interesting too! I was wondering if there would be some reason why my hair would just stop growing at 3-4 inches, but now I am wondering if it just drops after it reaches that length. Hmmm.

 

Thanks for the replies everyone! This AI stuff sure is a mystery - sometimes fascinating, sometimes frustrating.

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Very interesting theory! How is your hair now? I have heard about Biotin, but I wonder if it was just snake oil. I may give it a shot.

 

 

Abby, It has been great since then.  It is longer than its been since childhood, I'm 47 now.  My nails have always been wicked long and strong and I just realized that I have no white dots now either. 

 

Colleen

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Hair:

 

In 2007 and noticed hair got short in the back.  I had to wear hoodies to keep the back of my neck warm.  This happened without any realization of large quantities of hair coming out.  I take it that my hair simply stopped growing as long.  My hair was thin and tended to be snarly.  I noticed changes in my hair when I went gluten free and had supplements.  The dry hay look went out and my hair seemed silky in texture.  At one point you could see and feel a difference in quality of the hair.  There was a line of good stuff on top and dry brittle hair on the bottom!  It is increasing in length again.  I also noticed over this past summer that my hair bleached out and actually was blonde.  I had grown up blonde, but every year it has been darker and in recent years was considered brown.

 

Other hair notes:

 

I have very little hair on my legs and haven't shaved them for years!  I am saying what there is isn't visible.  I have very long whiskers that grow occasionally on my chin.

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My hair was falling out in droves , that was one of my complaints before I was Dx'd the rash on my back my hair falling out .. among a list of other things. But since I have been Gluten Free my hair has stopped falling out.. Yay! I don't think it has thickened back up. I am not sure if it will or not. Good thing I used to have thick hair! It is just thin now. I have hight hopes It will come back as I heal :) 

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my hair falls out....it's awful.  I used to be really thick, and now it is thin around the temples...first place I notice, but it comes out in massive strands...my shower has hair all over it.  It's awful.  

I also get this wierd strip of super coarse hair coming from my crown.  It comes and goes and it is really wierd.

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