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Hair Loss


naiiad

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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!


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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


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    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    • suek54
      Hi Im new to this game, so bear with me.  May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far.  The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.
    • xxnonamexx
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