Alopecia Areata Support Group

withhope,
My dermatolgist also suggested the shots but after I found out about the side effects.....well, I figured that wigs were cheaper and I didn't have to spend so much time on my own hair.

Since I know you have already read my post about CD and AA and how mine seem to be related and from what you have written here, it would seem that you have not had the same positive response with respect to your hair on the GF diet.

Our local support group had a meeting last Friday night and the author of the book "Recognizing Celiac Disease", Cleo Libonati spoke to our group. One of the local gastrointerologists, Dr. Al-Tawil was also there and I asked both of them several questions about the connection between CD and AA. Neither were able to give me any more information than I had already found or experienced. I suppose that there just hasn't been sufficient research into this area yet.

I also sent an inquiry to the AA foundation asking if they were aware of any connection or if they were in the process of persuing any research. I have not yet received a reply back from them.

I understand how you feel about your hair loss.......whether it's mild or severe makes no difference. It's still a blow and can be very depressing. .......as if we don't already have enough to deal with, eh?

Hang in there. If you need to chat, I'm here.

NickiDx

I had hair I could sit on when I was younger, too, and so thick I could barely get a brush through it. The funny thing is, I was never very pretty, but I had nice hair, eyes and hands. The alopecia took my hair, eyebrows, and eyelashes and eventually started warping my fingernails. I'm not particularly religious, but sometimes I think this is God's plan to remove any shred of vanity in me.
Anyway, I'm not from Washington, but I'm just north of you in British Columbia. Friends?

I hope they are able to do more testing on how the two are related, I do believe they are. Your a lucky gal to have had such a meeting, not everyone is. Knowledge is the key for all of us and it looks like your doing a fine job. Yes it is depressing, but isn't life what we make it. My mother use to tell me not to cry over spilled milk. So we all do the best we can. I do believe that the shots aren't a good thing as I have headaches since starting treatment. So really I am looking for other ways to be successful even if that means never having hair again, one important thing is that we do have each other.

Take care

Yes I would love to be friends sharing is a wonderful thing for all of us.

Withhope

I live in Washington state, near Seattle. I've pretty much adapted to the "ups and downs" and it doesn't bother me much anymore. I've had this problem since I was 10, and I just turned 30. I'm not so much bothered by it as I am bothered by telling people. I'm terrified of telling people, but getting over that. I've been in wigs for years.

P.S -- Celiac disease is an autoimmune disorder, just like AA. Autoimmune disorders tend to appear in clusters. I have Hashimoto's thyroiditis (an autoimmune disorder) and alopecia. I also have polycystic ovarian syndrome, which has not yet been classified as autoimmune, but has been linked to autoimmune diseases.

Many people with alopecia also have rheumatoid arthritis or lupus along with it. Once your immune system gets out of whack, these problems can manifest themselves in many different ways.

I have a really strange kind of alopecia...so strange that no one knows what to call it! I have a couple of doctors who think I have lupus and not AA at all, but I do not meet enough of the lupus diagnostic criteria. So...who knows?

I know how hard it can be! I have had alopecia for about 30 years. After I became the spokesperson for the National Alopecia Areata Foundation, a lot of women were facing emotional ups and downs and needing my help and support, so I wrote a book called, "If Your Hair Falls Out, Keep Dancing!" It might make you feel better. Check it out on www.Amazon.com, www.naaf.org at the Marketplace, or my author web site at www.leslieannbutler.npauthors.com. And let me know how you are doing!
LeslieAnn

Hi and thanks for the response, I am still new the forum and trying to get use to the way it works, so forgive me if I make any mistakes.
Yes they do appear in clusters and I'm really sorry for everything you have gone through. As far as the shots I think I am going to opt to not do them anymore. I've talked to some people and know of others that it just doesn't work and they are now bald so go figure. There are some other forms of treatment that I may explore that I've read about on here.

As for people in general I find most are ok with what we have. I've been wearing a hat to work for the past two days and the talk is everywhere, so be it. It is what it is and some people will never change.

Thanks again for the ongoing support.

You deal with it day by day. I'm still relatively new to alopecia, but it's robbed me of so much. In one week, I lost about half of the hair on my head. Within a few more weeks, I was completely bald as the treatments slowed but didn't stop the inevitable. I have never been a hugely vain person, but I've always had beautiful hair (which i of course wore up in a ponytail.) I feel like this is simply God's way to get me to not take my hair for granted.

I get SO frustrated some days. I've always had REALLY long hair, and I look at pictures and wonder when I'll have hair again.

The emotional ups and downs are natural and normal. The best advice I can offer is to take it one day at a time.

i struggle with this too. I'm only 23, and it's getting worse fast. I don't wanna get a wig... I already feel unattractive and self consious with my hair loss, I would feel even more so with a wig.... I cry over this alot and ask myself why did this have to happen to me, why cant i have pretty hair like the other girls, I have curly hair, and i try not to straighten it cause that makes it fall out more, I try not to put too much product in it cause that makes it fall out, and i hate for people to touch my hair cause THAT makes it fall out. I think about it alot!