Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hair Loss


naiiad

Recommended Posts

naiiad Apprentice

I've been adding tea tree oil to glycerine for shampoo, and rinsing my scap with a nighttime primrose oil soap bar. I can honestly say that after only a week, its been helping wonders. The swelling on my scalp has gone down and my hair doesn't seem to be falling out at an alarming rate. I'll definitely look into the OTC. Thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

Having an itchy scalp can be so maddening. It's good to see you've found some relief!

  • 2 months later...
angelikness Newbie

Thank you so much wheat chef, it helped a lot. I too am discovering an issue with dairy. I've cut out lactose (which got rid of the stomach issues it was causing me), but after reading your post, do you suggest I should cut all dairy out? (Including lactose-free milk and cheese).

Unfortunately, I've been about 2 weeks on a "clean" diet, and my hair loss is only getting worse. My hair is so. friggn. thin. I feel so unnatractive and sickly. This hair loss is effecting every area in my life - I just want to lock myself up in my room and not face the world. As I've said before, the only thing that keeps me going is knowing that I have a bit of money saved up from my last job should I need a wig.

I guess I'm going to make an appointment with my doctor, yet again. Doubt it'l help.

Naiiad, I know what your going through. At 24 my extremely thick hair started falling out like CRAZY. I knew something was very wrong. My hair never fell out before. I might lose a couple in my hairbrush, but nothing more. I'm now 29 and my hair is still falling out. Thank heavens I had a lot to begin with or I would be bald. I'm getting there though. I've struggled watching my hair grow thinner and thinner. I saw dermatologists and they said it was either stress (and should let up soon) or it was genetic and I'd lose most of it. NICE! Well, it's still falling out almost 2 years since last dermatologist appt. My ponytail used to be about 2.5" across when gathered. It is now the size of a nickel. I had psoriasis as a child that mysteriously went away and it came back just last year (about 20 years later). I've tried Nioxin shampoos and Rogaine. I've tried soaking my head in herbal teas. I've even bought all the herbs that were supposed to be for hair loss and encapsulated them, taking them daily. Nothing helped. I know your anxiety and fear over this. I really do understand. It is not easy to stand by helplessly and watch as you lose your hair. It's been a difficult road. My oldest daughter was just diagnosed with gluten sensitivities and I get tested next week. We did go gluten-free for one month several months (to see if we noticed any health improvements) ago and my psoriasis was 100% gone on day 2!! At about week 3 I ate some wheat thins purposfully to see if I'd have a reaction and ..... nothing. I remained on a strict gluten-free diet. But, a week later my psoriasis came back like I had never seen it. We'll be going gluten-free for good now and I pray my hair stops falling out after a few weeks. You REALLY do have to be 100% with it or your wasting your time and effort. There are things you wouldn't even think of that contain gluten like shampoos, toothpaste, and even the stickies on envelopes! Call the manufacturer #'s on the back of the bottles and ask them if it is gluten-free. Cecelia's Marketplace sells gluten shopping guides that are AWESOME. They made our month of gluten-free so much easier. Even meats can have gluten in them. Turkies are sometimes put into broth which contains gluten. You can't use anything that gluten has touched. For example, if your gluten-free peanut butter has had a knife dipped into it that touched regular bread...the peanut butter is contaminated. We buy 2 and write gluten-free on top of lid in marker so everyone knows not to contaminate it. You definetley need your own toaster. A crumb of gluten in your system can be just as bad as a loaf of bread to your body.

  • 2 years later...
depechemead Newbie

A year ago (and for the 19 years of my life before that) I had very long, very thick healthy hair. Around this time last summer it started falling out - in chunks. It was really dry and brittle and my roots where thin and white. Within a few months more then half had fallen out and I had to wear hats and different hair styles to cover the thinning patch at the top. I switched to washing my hair with 1 part baby shampoo and 1 part sage tea. After 6 months my hair stopped falling out and it grew back, but not to its original thickness and health.

Anyway, it was at this time that other symptoms started popping up, and doctors had no idea what was going on, but I eventually discovered celiacs. (*Note that I haven't been tested... cant see a specialist for 6 months, I'm also not sure that the hair loss is wheat-related, even though it seems highly likely).

Recently I've been noticing that my hair is thinning again. My roots are dry and brittle and I'm loosing way more hairs then I should be. I first noticed this when I switched to a Revlon shampoo for two weeks and my hair was falling out excessively. When I realized that wheat was a listed ingredient, I immediately threw out the bottle and started using baby shampoo. My hair seemed to improve a little bit, but since then it's been getting progressively worse. I'm so terrified, I don't want to go through the anxiety of losing my hair again.

I'm aware that I've been sneaking small amounts of wheat into my diet - a handful of non-gluten-free rice crackers here, a few potato chips there - foods that I know give me a small reaction but don't contain significant amounts of wheat gluten. Currently ive stopped "cheating" on my wheat-free diet. I hope that helps.

Does anyone have any experience with celiac related hair loss? Any suggestions as to what else I should be doing to preserve my hair?

Yes, I have experienced the exact same thing. I am really upset about it. My hair had to be chopped off at my chin because I loss so much. I have regrowth now, but I think it is still thinning. I haven't cheated on my diet, but I've noticed here and there things containing gluten. For example, I started taking a pytovitamin and noticed after about 3 months that gluten was an ingredient. I think that is what caused my intial hair loss and 3 months later I am finally rebounding. I am perplexed and the other things. I have break outs of acne more now than ever too.

nvsmom Community Regular

I had pretty bad hair loss too. It continued while gluten-free because thyroid issues were causing it as well. It takes a while to balance out.  :)

 

BTW, this thread is a few years old and the member you are responding to hasn't visited the board in over two years so they may not respond.

wystearya Rookie
 even the stickies on envelopes

 

 

 

Wow..  I did not know this.  I wonder if Post it Notes are gluten free?  I use them all the time at work.

 

---

 

My hair also thinned significantly right before I found out I was gluten sensitive.  I also just found out I -have- to be more careful with my own eating habits too.   

 

I know your scalp is itchy and sore, so you probably won't want to try this until it is healed..  But I have been using an apple cider vinegar rinse for a few months and I believe I am seeing more hair coming back!   I tend to have an oily scalp, and I think the rinse (1 third vinegar, 2 thirds water) is helping!  I typically use my shampoo, rinse with water, and then I use my vinegar rinse.  I work it into my scalp, especially the top and front.  Keeping my head tilted back to avoid getting it in my eyes.  I then rinse out the vinegar and use some conditioner.  The vinegar does not feel like it strips the hair.  It actually feels smooth/silky.  This may or may not help you, but it does seem to be helping me.

 

I hope your diet & lifestyle changes will help your hair come back!   

GF Lover Rising Star

There is no Gluten in glue on envelopes!!!.

 

Colleen


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Blue Roan replied to Blue Roan's topic in Related Issues & Disorders
      4

      Lymph nodes in neck + thyroid issues

    2. - Scott Adams replied to Dawn R.'s topic in Related Issues & Disorders
      1

      Gluten Ataxia

    3. 0

      Vanderbilt Celiac Disease Clinic Life with Celiac Disease: Home for the Holidays

    4. - knitty kitty replied to Bindi's topic in Super Sensitive People
      31

      Refractory or super sensitive?

    5. - glucel replied to Bindi's topic in Super Sensitive People
      31

      Refractory or super sensitive?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,911
    • Most Online (within 30 mins)
      7,748

    haglcaro
    Newest Member
    haglcaro
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Blue Roan
      @RMJ@Scott Adams@knitty kitty, Thank you for all of your responses, tips, and suggestions. I'm very grateful that this website exists. It makes me feel a lot less alone in my celiac journey!  The endocrinologist had me do a neck ultrasound just to be safe. Thankfully, thyroid and lymph nodes came back normal. knitty kitty, my Vitamin D is on the higher end of normal, but I will definitely consider the dentist route next time I have my checkup if I'm still noticing issues. Thank you! Scott, thanks for suggesting the ENT. I may consider seeing one if things don't resolve on their own. I am thankfully feeling a bit better now, so hopefully, this is just some sort of residual celiac inflammation like you mentioned, Scott. After all of the numerous tests and clinical visits I've had all year, I'm going to give my body (and wallet) a break for a few months to rest and heal without the stress of doctor appts/labwork and whatnot. Perhaps the health anxiety is also contributing to some of my symptoms.  Thank you once again for sharing your stories.  
    • Scott Adams
      Welcome to the forum. A search for "ataxia" in our forum shows 718 results: https://www.celiac.com/search/?q=Ataxia&quick=1&type=forums_topic We also have an article category dedicated to summarizing research on this topic: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ Do you have a specific question about it?
    • knitty kitty
      Using a pressure cooker will break down Lectins.  Long cooking times as in using a crock pot will also reduce Lectin content.   However, having tried both, going lectin free for a few weeks is like a vacation for my digestive system.  I do hope you give the AIP diet a try.  I understand that changing ones diet takes a lot of mental readjustment which is difficult, but it's really worth the effort for long-term health.   P.S.  Once your digestive tract is healed up, you should be able to add beans and rice back into your diet gradually.
    • glucel
      Depending on which source you research sprouting or fermentation can reduce lectins. I sprout rice, buckwheat and quinoa. However, I admit that gas and intestinal inflammation still plague me after 5 1/2 mo gluten-free. I have been resisting but I may try the aip diet at some point.
    • cristiana
      Hi @jadeceoliacuk I am a UK based coeliac and I have used a private nutritionist a few times. She is very highly qualified and having just googled her details, she is listed on this website (see link).  For that reason, I think you could trust the listings here as I am quite sure she would not want to associate with this website unless it was a professional, trustworthy resource. https://www.nutritionist-resource.org.uk/ I hope this helps. Cristiana  
×
×
  • Create New...