Replies to This Discussion

Permalink Reply by CJ- Christine from Ottawa Canada on January 12, 2013 at 4:18pm

I will email you directly on your Rogers account.
Cheers,Christine

Permalink Reply by Goody on January 24, 2013 at 10:53pm

Hi Celia - I am so happy to hear from you. You are beautiful. Trust me - nobody else notices the scope of hair loss you are experiencing - unless you point it out.
I know this issue definitely impacts confidence, but don't let it.

I work in business. Recently, I was asked to speak at an event with a reception after. Because I knew I would bump into people who knew me before this issue, I was nervous to accept. Bottom line - it was a great event and one of my best presentations ever delivered.

I know nobody thought anything of my eyebrow loss or thinner hair. It is what it is and I am just trying to make the issue less impactful on my full life.

Accept every invitation. Teach anyone who wants to learn. I am sure you notice the issue more than others.

Permalink Reply by Susanne on January 28, 2013 at 7:13pm

Hi everybody. How crazy is it that we all ended up with something so rare? I'm 52 and was just diagnosed with FFA several months ago. I first started noticing one of my eyebrows disappearing and hadn't even noticed my hairline receding. Luckily, I can still hide it well enough, but of course, I was panicked. Lots of crying, just feeling miserable. Since the doctors really couldn't help me much, I finally went to a nutritionist/acupuncturist several weeks ago. Before that I had started taking turmeric capsules on my own to fight the inflammation. So the nutritionist told me that was a good thing but to do three things: 1. increase my vitamin D intake, 2. take glutathione (which tastes like the devil's tap water) every morning and to go gluten-free. In a perfect world she would have me go on the paleo diet, but I'm not really there yet. In any case, my inflammation is gone. The dermatologist was quite astounded when I saw him. I feel tons better, am not constantly weepy and my skin looks better, too. I thought I would share this with you because it's really helping me, I think. It's a fairly big lifestyle change, but I believe that a lot of strange auto-immune illnesses out there are caused by our diets. If you start reading about it, you'll find a lot of information about why gluten is pretty bad for you. I have to say, I was very skeptical about what I considered to be the whole gluten-free craze, but I feel so much better and somewhat in control when I've been feeling so out of control about this whole thing. I hope you are all doing well under the circumstances. All the best to you!

Permalink Reply by PamW San Diego, CA, USA on January 28, 2013 at 11:20pm

Hi, Susanne. welcome to our group. I have also been trying to follow a gluten free diet. Gluten is hidden in many foods, not just the obvious breads, etc. so I have been a bit challenged to eliminate it entirely from my diet. I have heard from many people that they get relief from itching, etc. if they eat gluten and/or paleo diets. I am interested in the supplement turmeric that you mentioned. How much do you take a day? I have heard of turmeric before for inflammation. has your hair loss slowed also? Do you take Plaquenil? Thanks for providing the information!

Permalink Reply by Susanne on January 28, 2013 at 11:32pm

Hi Pam. Thanks for the welcome. I do take Plaquenil. I was giving me nightmares, but those have subsided. I've only been gluten-free for about three weeks, but I've really been good about avoiding anything and everything which could have it in it. To be honest, I'm not entirely sure why the inflammation is down, but my gut tells me it's not Plaquenil. My derms were pretty surprised that I was no longer inflamed. I have been taking the Turmeric for a couple of months now - I take three capsules of Turmeric Force brand capsules a day. You can get it through Amazon. The other thing I've been doing is drinking homemade broth every day for a couple of weeks. This is something that's on the paleo diet, but I'm certainly not doing that diet. I do avoid sugar most of the time. Yes, my hair loss seems to have slowed down significantly in the last few weeks. How long have you been dealing with this? It's so crazy-making, isn't it?!

Permalink Reply by PamW San Diego, CA, USA on January 28, 2013 at 11:59pm

Crazy-making describes it perfectly. I have been certifiably crazy since getting the diagnosis in July 2012. I noticed eyebrow loss first in March and didn't really see the hair loss until July. My doctors noticed it when I showed them my eyebrows. They did a biopsy and diagnosed FFA. I cannot begin to tell you about my sheer panic and sadness. Anyway I have taking Plaquenil since August, and recently tried but abandoned Actos(a diabetic drug that is supposed to help metabolize). My hair loss has slowed, my hairline is still receding, but I am not shedding like crazy anymore. I have lost a lot of volume in addition to my temples and front hair line.

Luckily, I have a wonderful dermatologist who is willing to let me try anything as long as I don't harm myself. I never heard of glutathione before, but I just looked it up and saw Dr. Oz explain it in a you tube video and gosh it makes sense! I am not usually one to believe in herbs and supplements, but if someone tells me something works, I listen!

Thanks for sharing your info. I feel such a sense of kinship with the ladies on this site!

Permalink Reply by Susanne on January 29, 2013 at 9:36am

Your timeline is EXACTLY like mine. Same business with the eyebrows - hadn't noticed the hair until then. The stuff I'm taking is called Readisorb Liposomal Glutathione. A teaspoon stirred into water first thing in the morning. I'm finally to the point where I don't gag when I drink it. Be forewarned. In addition to the turmeric capsules - or in place of one of them - I take straight-up turmeric, about 1/2 teaspoon mixed with Nordic fish oil and a bit of pepper. I know this sounds strange, but turmeric is a really good anti-inflammatory and I do really believe it's helped me a lot. The Glutathione is what my husband and I call "faith-based medicine." Who knows? It's not easily absorbed through the digestive system, but the liposomal nature of this one is supposed to help. I also think the gluten-free business is a plus. The more I read about it, the more it makes sense to go G-free and believe me, I was a bit of a skeptic. The one thing it has done is make me feel less depressed/frantic. I've also increased my protein intake at meals - the acupuncturist told me I "needed blood." You look to be a bit younger than I, but I've been going through that perimenopausal craziness and the moodiness this last cycle was completely gone. I can only attribute that to a better diet. I do think the diet route is something to be explored. I'm sorry to know you're going through this, too, but you're the very first person I've encountered who also has this and it's kind of a relief to talk with someone else. Thank you.

Permalink Reply by PamW San Diego, CA, USA on February 3, 2013 at 7:28pm

Well, went to Walmart today and bought Tumeric. I will give anything a try. I am 56 years old and I am an elementary school teacher. I have heard many people discuss the role of stress and auto immune disease. if that we're true, all teachers would be sick. I firmly believe this is diet related because when I wake up in the am my scalp is calm and gets worse through tout the day. My worst days oddly enough are the weekends, when I am eating out a lot. I am doing my best to be gluten free. many talk about the positive affects of the paleo diet, but it is just too restrictive for me. I just can't eat all those veggies.

When I read about low glycemic and ant inflammatory diets I think that those make the most sense. Does wine have gluten? Why no wine?

Permalink Reply by Susanne on February 3, 2013 at 7:45pm

No, wine doesn't have gluten, but it is inflammatory and I'm just going to leave it out for a month to detox a bit. It's not that I drink a ton, but I like a glass of wine with dinner. This whole diet thing is complex. I'm also leaving out most dairy. I agree that the paleo diet is crazy restrictive. I'm certainly not there, but one of my main concerns is that these autoimmune diseases tend to come in clusters. If I am indeed gluten-sensitive (and the results so far are pointing in that direction) I want to do what I can to avoid getting anything else. My mother died of another mystery illness - also presumed to be an autoimmune disorder - and I would very much like to avoid that fate. On the one hand, I feel like I'm taking some control over this situation, but then I get discouraged. Maybe it's not so odd that your worst days are on the weekends when you eat out. Most restaurant food has all kinds of stuff in it and they don't always use the best ingredients. I'm sure it is hard for you as a school teacher to find the time to cook from scratch all the time. It's almost impossible to eat the way we're supposed to eat in the modern world. Good luck with everything, Pam. I'm so sorry you're going through this too. I have a question - when you say your scalp gets worse - is it painful, itchy, both, very red? I only know my own situation, so I don't know what someone else is experiencing with this. I hope you can find ways to reduce your stress at work. Stress is probably not the sole culprit of autoimmune disease, but it doesn't help, I'm sure. I've had to to try to do that myself.

Permalink Reply by PamW San Diego, CA, USA on February 3, 2013 at 7:57pm

I can see redness at the root of the hair, I get itchy and it burns. I have had almost 7 days in a row of being pain free, so I am happy. But I have been very, very careful about being gluten free. I am interested in the anti fungal conversation. No one has ever mentioned that before. Wish we had a doctor on this board, or someone with a medical background. What is your Tumeric intake?

I love, love, love my job! Wouldn't trade it for the world.

Permalink Reply by Susanne on February 3, 2013 at 8:28pm

I'm glad you love your job. You are lucky. We both are. I love mine too - most of the time. It sounds like being gluten-free might be helping you some. Good luck with it. It's hard, I know. I've noticed other benefits from going gluten-free, so I'm going with it. I only hope it'll make this thing come to a stop. I'm interested in the anti-fungal conversation too. I would think they would have detected that in my biopsy though. I take 400 mg of turmeric (Brand: Turmeric Force) three times a day with food.

Permalink Reply by Susanne on January 29, 2013 at 2:17pm

Hi Celia - and thank you - I know exactly what you mean that we don't know what is actually helping with the inflammation. I also get from my friends that they don't notice (yet!) and was pretty despondent early on - I still have my moments. I started looking at wig websites and thinking - ok, this is my only option. If it were to stop now, I'd be okay, so I'm actually pinning great hopes on this diet of mine. We'll see. I would like to eventually skype, but am not there yet. I still need to get used to this whole thing a bit. As far as the gluten-free thing goes, yeah... who knows, but there is a lot of information out there about auto-immune diseases and gluten, so I'm giving it a go. All I know for now is that I'm feeling a bit better and the inflammation is down. One thing I have to get over is the fact that not every little hair I find means that it's kicking in again bigtime. Everybody loses some hair, but isn't it awful to freak out every time you see a hair?! All the best to you from North Carolina.

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