• Celiac, Gluten Free, Hair loss???

    by Ellen on September 11, 2013 · 28 comments

    Celiac & Alopecia (Hair loss), Gluten Free Diva

    In my wildest dreams, I never thought being gluten free had anything to do with hair loss.

    I was diagnosed with Alopecia in early 2005. The dermatologist had no prescription for hair regrowth other then to have massive shots of Cortizone injected into my scalp. And he couldn’t guarantee whether it would even work. Waaaa!!! You’ve got to be kidding! I was not interested.

    Six months later, after a lot of online research, I asked my internist to test me for Celiac, as my sister had been diagnosed with it about 8 years before but her doctor never suggested the rest of the family be tested, so we all figured we had dodged the Celiac bullet.

    My Celiac diagnosis was confirmed in November 2005. By blood test, with further confirmation by endoscopy in January 2006. That was all I needed to know. I went completely 100% gluten free. I wanted my hair to grow back. I wasn’t even thinking about how bloated I’d been FOR YEARS. I always assumed everyone felt like a stuffed boar every time they ate a bagel or pasta or pizza. It was my normal. All I cared about at the time was my vanity.

    I was crazy gluten free. Not a crumb passed my lips. It took the better part of 3 years for my bald patches to regrow. Is it completely regrown? No, but I’m totally fine with where I am now. It is about 80% regrown and the parts that are still bald are hidden by my hair, thanks to my wonderful hairdresser.

    You can read more about it here. I am certain that the combination of steps I took for my healing are what made all the difference.

    1. I went completely 100% gluten-free. No exceptions.

    2. I began eating a very clean diet. It didn’t happen overnight but gradually my diet has become very clean. What does that mean? I eat very little packaged foods and most of the food I eat comes from the perimeter of the grocery store. I’m VERY creative and love cooking, and that helps, for sure. I plan my food/meals like it’s my job. Why? I want to be healthy and safe.

    3. I take a probiotic And digestive enzymes every day.

    4. I take Lifelong Vitality supplements (Lifelong Vitality Pack) from Doterra every day. Though I only started taking them in the last year, I can tell you that they’ve put me over the top and have made all the difference.

    5. I slowed down. I learned to take deep, cleansing breaths. I use doTERRA Essential Oils as part of my healing regimen.

    6. I made getting enough sleep a priority, and I use my doTERRA Essential Oils EVERY SINGLE NIGHT to make sure I sleep well.

    7. I do a detox every season. I have an online detox (Detox With The Diva) coming up which you are welcome to join. Make sure you’ve signed up for my email list in the right sidebar and you’ll be notified as soon as it is launched.

    If you have any questions, email my team at [email protected]

    I am very happy, very confident and quite sure that this path I am on, as a result of the steps I’ve taken over the last 8 years, is responsible for it. It did not happen overnight, but little by inches I’ve made changes that have made me feel like a new woman.

    And guess what? I get compliments on my hair every single day.

    LLV

    P.S. I just reread my post and realized that I focused alot on doTERRA Essential Oils. That’s because I consider the oils an essential part of every part of my daily routines. I’ve never found a better, reasonably priced, more natural approach to healing. And they smell good, to boot!

    { 28 comments… read them below or add one }

    Dana September 12, 2013 at 10:56 am

    Hi,

    I just wanted to tell you that I had an unbelievably identical experience to yours. I was first diagnosed with Alopecia Areata at the age of 18. I wasn’t diagnosed with celiac disease until my mid-20′s. As soon as I cleaned up my diet, I started to clear up all of my GI symptoms, but I was still losing patches of hair here and there. Like you, I had “symptoms” that I didn’t know were even symptoms until they started disappearing. But, I was still going out to eat and getting contaminated about once a week. I didn’t see the connection between the alopecia and the minute gluten exposure until I moved to another country where I rarely to almost never go out to eat (it’s 3rd world, so there aren’t a lot of options) and 100% of my food is prepared at home. Since then, it’s been 2.5 years and I haven’t lost a single patch and my hair has grown back. It seems far fetched to believe until you look at the science behind the connection. Basically, when gluten is ingested and antibodies are made against it, there is an excess auto-immune response that doesn’t just stay localized in the gut. These antibodies go and attack other things, like hair follicles. Ofcourse, this is just a theory, but alopecia areata is listed as a T-cell mediated auto-immune disease, so it makes sense to me that the initial trigger could be a misidentified antigen.

    Thanks for writing this post, I think its extremely important to get this kind of information on the internet for others to see and draw their own conclusions. How much sooner would we have been diagnosed if there were more articles like this one floating around at the time?

    Reply

    Ellen September 12, 2013 at 12:06 pm

    Hi Dana Marie – yes, yes, yes! It’s so important to talk about it so that others can learn and potentially benefit. Thank you for your story – we need to get this info published!!!

    Reply

    Becca September 26, 2013 at 7:43 pm

    Hi Ellen,

    I would love to know which doTERRA oils you use! I just bought some for the first time a few weeks ago. I have the OnGuard and Breathe, but am really interested to start trying other ones. :) I am assuming that most of these are dairy and gluten free also since you use them? I just found your blog today, as I have just recently changed to dairy and gluten free lifestyle. Thank you so much, I am loving all the inspiration I have found through your blog so far! :)

    Becca

    Reply

    Ellen September 26, 2013 at 10:55 pm

    Hey Becca – can we have a chat about it? Email me at support AT glutenfreediva DOT com. And we’ll find a time to talk.

    Reply

    Julie Rosenthal October 6, 2013 at 8:46 pm

    I also have had a similar experience. Actually I have been gluten free since 2006 when I was diagnosed Celiac, but from June-December I was constantly traveling and I was super strict but somehow gluten got into my diet. I got so sick during that time, and also was diagnosed with a form of non-permanent Alopecia. I went to 4 hair doctors and a Trichiologist. I did cortisone shots all over my head, anti-inflamatory drops, and now I am on a medication called Spirolactone or something like that. I lost a LOT of hair. And we also couldn’t figure out what had happened. My story is a bit different, because I already have the Celiac diagnosis but-I also had never had this happen to me before, and I happened to stumble on this article, and I guess it all goes back to Celiac.

    Reply

    Ellen January 25, 2014 at 1:20 pm

    Dear Julie,

    It is my belief that gluten is the culprit. I have been 100% gluten free – VERY CAREFUL. It took the better part of 3 years for my hair to mostly grow back. I never take chances and pray that between being strictly gluten free as well as mostly plant-based, I won’t have the issue again. I am determined to help others with similar problems to see the correlation between gluten and/or Celiac and health issues.

    Reply

    Gina October 26, 2013 at 1:27 pm

    I am 29 and when I was 18 I had a minor battle with alopecia areata but it resolved . . . About a year ago I started losing my hair and blamed my thyroid (hashimotos) it started with small patches and I went for the extremely painful cortisone injections and at first they worked but then the patches would grow back and I would lose next to it. About 6 months ago it got bad. My hair rapidly fell out and I now have to wear a wig as I have lost 90% of my hair. It’s heartbreaking. I went to a naturopath who suggested I go GF and told me to take a probiotic- like you. I was going ho for three months and felt amazing. Hubby was super supportive and all was well… Then summer hit and I had nothing but excuses and failed miserably at GF. This is not an easy change for someone who works 60hrs as week as an attorney who is always on the go. I am struggling big time…

    Reply

    Ellen November 10, 2013 at 3:36 pm
    Gabby November 8, 2013 at 5:31 am

    Thank you, Ellen. I am excited to try some of your tips. For years, doctors have just told me “It’s Alopecia or Male Pattern Baldness.” I am a female and my hair isn’t actually receding. I just have a large rounded forehead. Regardless of that, giving my problem a name or diagnosis didn’t help me at all. I remember sitting there on the examining table thinking “Okay. You gave it a name. Now, what?” No tests. No suggestions. Nothing. Frankly, this coupled with other doctor experiences has made me lost faith in most of them.

    Reply

    Ellen November 10, 2013 at 3:35 pm

    Gabby….I’m with you. Believe me, I was SO frustrated after my Alopecia diagnosis. They had no answers or suggestions. In fact, 9 months later, when I was diagnosed with Celiac, and then saw the doc at a party, he denied there being any connection between gluten and alopecia. I think I need to go present to the medical school he went to, and show them living proof!

    Reply

    macarena November 16, 2013 at 8:41 pm

    hi ive been told I might have celiac so I just got tested but haven’t heard from the doc yet ,a few months back I lost 50 % of my hair in 2 months and now is getting worse I told my husband I would leave him if I go bald because I don’t want him to feel emberrasd to be with an ugly wife im loosing my mind I cry everyday and im loosing hope im going to try to go 100% gluten free and see if that helps but I don’t know if is going to work .I went to the dermatologist to find out why I was losing all my hair no one in my family is bald expept my dad and his father so he said to use rogain for the rest of my life ,never gave me a reason why I was going bald and rogein hasn’t help .I was diagnosed with hypothyroidism but all the test they do now show normal so I cant even get help for that .

    Reply

    Ellen January 25, 2014 at 1:05 pm

    Dear Macarena,

    It took me the better part of three years of being strictly gluten free before my hair began to grow back. You must stick with it. There are other things you can do as well, take a look at reducing or eliminating dairy and also take a look at other allergens like soy and eggs. It’s new territory when it comes to food intolerances, and sometimes you have to experiment to figure it out. Best of luck! I’m happy to offer you a complimentary strategy session should you want to consider working with me on this issue. Best of luck!

    Reply

    Jo November 23, 2013 at 5:06 am

    Hi Ellen,

    Thank you for your very interesting article. I’m 36 and have been to see various doctors about my hair loss, which has been going on for the past 4 months. I’ve been prescribed topical creams and lotions, antibiotics, and told to exercise more. Every doctor I’ve seen has blamed my hair loss on stress, despite the fact that I’ve been managing my stress pretty well recently. I just don’t believe it’s stress, especially since the rate at which my hair is falling out has become disturbingly worse in the past 2 weeks. Whenever I take a shower, my hair literally washes off of my head in a neverending connected thread. It’s especially bad at the back of my head where the bald spots are getting bigger and can no longer be hidden by artful hair arrangements. I have to wear a hat to work and am becoming extremely depressed and tired by the back and forth with the doctors. Could my sudden hair loss be related to gluten intolerance? I also have painful cystic acne on my face and scalp (also a recent thing) and am lactose intolerant.

    Reply

    Ellen January 25, 2014 at 12:49 pm

    Dear Jo,

    First, let me say that my heart goes out to you. Been there, done that. It’s only been in the last year that I trust my hair won’t fall out again, and I tossed the wig advertisements I used to save. I’ve made some dramatic changes in my life around food choices and stress reduction. I would suggest that you keep exploring and experimenting. One of the best places to start is by going gluten free. And there are other dietary changes you can make as well. My health coaching practice revolves very much around this topic and I would be happy to speak with you about it. If you’re interested in setting up a time to speak, I can offer you a complimentary strategy session. You can schedule it on the front page of my website. Email me or my team with further questions: support AT glutenfreediva DOT com.

    Reply

    Jen December 1, 2013 at 9:30 am

    Ellen, I have not been diagnosed yet with alopecia but I am pretty sure that is what I am experiencing. I am definitely going to look into a gluten free diet and other options but I also wanted to mention a trick for those like me still trying to figure all of this out! My sister was a genius finding a colored dry shampoo. I am a brunette and by using a brown tinted dry shampoo on my bald patches it has completely eased my mind about the beginning stages I am going through. At this point you would never know I had alopecia unless I told you. This is a wonderfully harmless quick fix until I decide what avenue works for me for treatment. I would so appreciate it if you got this information out to others on your blog…it has extremely changed my confidence level and mental state in dealing with alopecia.

    Reply

    Ellen January 25, 2014 at 12:39 pm

    Thank you for sharing this tip! I know others will be interested in learning about it!

    Reply

    Samantha December 13, 2013 at 11:24 pm

    I sincerely hope that my story will have a happy ending like yours. I’ve been losing my hair since I was 15, and I’m 23 now. It has never been patches, but even loss all throughout the top of my head. It has been attributed to stress, pcos, being overweight, etc. I went on birth control for 6 months. A week after I stopped taking it I became severely allergic to the sun. That has been going on for 3 years now. Last week I was diagnosed with celiac. I’ve been gluten free for 9 days and it has been tough. I have been wearing a wig for nearly a year now since I’ve lost about 70% of my hair. Gluten doesn’t make me sick, but may possibly be showing its effects through my hair. I’ve had so many negative diagnoses that its hard to believe that this could possibly be the true problem.

    Reply

    Ellen December 26, 2013 at 10:19 pm

    Samantha….my heart goes out to you. I lived with the prospect of needing to buy a wig for the longest time. It took about 3 years for my hair to grow mostly back, and even then, I continued to hold onto wig advertisements. It is much of the reason I became a health coach. If you’re interested in a strategy session to talk about your possible next best steps, please email me at support AT glutenfreediva DOT com. Either way, keep up the gluten free. It might take years, but it’s worth holding out hope.

    Reply

    Eva December 26, 2013 at 8:05 pm

    Hi Ellen,

    First of all, thanks so much for sharing your inspiring story. I actually randomly came across the gluten intolerance -alopecia association only today, while surfing the internet. It’s amazing that through my 9 years of Alopecia exprience this possibility never came up, no doctor ever mentioned it… They’d just send me to numerous tests and check-ups and prescribe some ointments, injections.. It all started with eyebrow loss at the age of 13 and by the time I was 18 it developed into accelerating scalp hair loss.. A couple of years ago I was diagnosed with Alopecia Universalis and was told there was only 10 percent chance for my hair regrowth, so I lost all hope and tried getting used to the fact I was going to live bald for the rest of my life.

    But now this.. I’ve been browing this new possibility for the last few hours and I’ve decided to go gluten free starting now. It’s worth trying, it’s absurd to not try an option that doesnt involve doctors and huge medical bills..

    Thank you again, Ellen, and best of luck with keeping up the good work. May I just ask after how long exactly after starting the GF diet did your hair start coming back consistently?

    Eva

    Reply

    Ellen December 26, 2013 at 10:12 pm

    Hi Eva….so glad you wrote. If I can provide any solace and hope to you, it makes my blog worth writing. Have faith, be patient, do your homework. And to answer your question, it took about 3 years until 80% of my hair grew back, and then the regrowth just stopped. I’m lucky in that the hair loss is behind one of my ears, and my hairdresser cuts my hair in such a way that it doesn’t show. If you’re interested in working with me, I’d be happy to offer you a complimentary strategy session where we talk about your next best steps. Let me know by emailing me at support AT glutenfreediva DOT com.

    Reply

    gluten free diet for kindle January 6, 2014 at 12:31 pm

    Great article. awesome content I look forward to reading your other posts.

    :)

    Reply

    Cat bond January 25, 2014 at 10:33 am

    Hi Ellen I have a 3 year old that was exposed to high dose antibiotics at 5 months. Wasn’t my favorite choice, but at the time I felt I had no other choice.
    I wasn’t so wise about gluten and probiotics at the time so I didn’t notice any problems until her hair wasn’t growing. Her hair is still very short for a 3 year old. After much research and tons of trial and error, I feel the connection bt gluten and her hair growth is strong. She has a chronic dry scalp as wel and I’m sure it’s all related. We have managed to get it growing somewhat again with gluten free for a bit and probiotics. But it feels near impossible to go gf with kids and school and all the other activities that involve crappy snacks and food. Especially when the rest of the family eats it as well as her big sister! I don’t want her to grow up with a complex about her hair, which I begin to see already. She focuses on it alot and it makes me sad.
    Do u have any suggestions? Thanks!

    Reply

    Ellen January 25, 2014 at 12:36 pm

    Though I didn’t deal with Celiac until I was 50 years old, I am an Early Childhood Music specialist with two degrees in Education and a Masters in Early Childhood, plus two daughters and 2 grandkids of my own, so I speak from experience when I say that it’s hard enough as an adult to deal with the social challenges of being gluten free. I can only imagine the pitfalls and roadblocks you must be facing. My heart is with you. I imagine it must be difficult for her to have to be GF when the rest of the family isn’t. Would you consider going somewhat more GF at home? It would be a good place to start. If she felt that her family was on her side and that you were all doing it together, it might be easier for her to deal with. I also would take her shopping for really pretty hair stuff – headbands, barrettes, hats, boa scarfs – really do it up so that she feels extra special around her hair. And of course, I would also suggest thinking about how else you can help detox her from the antibiotics – can you up the amount of clean eating that you do? More smoothies, lots of fruits/veggies/nuts/seeds/grains/beans etc. Make a commitment to ditch sugar as much as possible – find substitutes like coconut sugar and stevia – I bake with them all the time. I would be happy to have a complimentary strategy session with you as a prelude to working with me as your family health coach – that would be a great next step, I think, given your commitment and desire to do everything you can to help her. If you’re interested, either email me at support AT glutenfreediva DOT com, or look for the strategy session link on the first page of my website. Good luck! And I wish you the very best, whatever you decide to do!

    Reply

    Sara January 26, 2014 at 10:59 am

    I’ve been losing my hair over the past two years, but it has accelerated in the past few months. I can easily say I’ve lost half the hair on my hair, if not more. I am going to try do the gluten free diet starting today. I don’t eat soy and barely any dairy. I love eggs. I eat them everyday. Is there way to get a blood test for wheat, egg, soy, and dairy allergies? I find your story inspiring. Any ideas for me?

    Reply

    Ellen January 31, 2014 at 1:41 pm

    Sara – please check with your internist and/or naturopath. Or you might see if you can find a practice that does functional medicine.

    Reply

    Lauree K. January 28, 2014 at 11:34 pm

    Thanks for this. I’ve always had nice thick hair and while my hairdresser still tells me I have a lot of hair I know it’s not what it used to be. When I was a teenager my hairdresser noticed several bald spots and told me they were caused by stress. I went to a specialist and was told it was hereditary and was given steroid shots which made it grow back. However, there are no major cases of baldness on either of my parents sides. My grandpa (mother’s father) is actually the first man I’ve known to not have a full head of hair and mountain man beard going off of pictures going back to my great, great, great grandfather. Now, since Christmas, I have been sick and ended up so nauseous and in pain that I ended up in the ER New Year’s Eve. I was told it was probably my gallbladder and I’d have to get it out. I had an ultrasound that surprisingly came back fine so my doctor scheduled a HIDA scan. It came back at 24% so not horrible but it was the most pain I had ever had in my life (and that includes labor) so my doctor suggested getting my gallbladder out and set up an appt. with the surgeon. A week before my appt. I had a really healthy breakfast (made with whole wheat, coconut oil, plain yogurt and fruit) and an hour later I was sick and for the rest of the day. I started paying attention and it seemed any time I had wheat I was sick, tired, aggitated, etc. within a short period of time. When I met with the surgeon (who is also a digestive health doctor), I told him I wasn’t comfortable having my gallbladder removed since other than pain the tests all came back pretty good (I know some medicines can contain gluten and I’m wondering if the HIDA drug is one of them). I told him my symptoms and he thought checking for Celiac sounded like a good step and scheduled a biopsy of my small intestine, which I have tomorrow. I have an appt. Feb. 6 to get the results and am looking forward to getting answers.

    Reply

    Ellen January 31, 2014 at 1:39 pm

    Wow Lauree – what a story! I’m so very glad to hear that you’re being proactive and taking your health into your own hands. And how lucky for you that you have a surgeon who is also a digestive specialist. I’m so sorry to hear about your pain, but the fact that you’ve traced it to gluten doesn’t surprise me at all. I will await your results and hope that you get to the bottom of this. Good luck!

    Reply

    annamaree February 2, 2014 at 7:10 am

    hi..great article.now im determined to go GF.Ihave hashimotos, wellcontrolled ,bioidentical thyroid, had one swing from 1` up to 5 tsh in august, in october over 3 weeks lost 90% of my hair!! tsh is no 0.5 ,normal .. hvent had a btest for celiac..have you heard of such amajor sudden loss. eyelashes,eyebrows,some pubic hair :(.a

    Reply

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