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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Hair Loss
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32 posts in this topic

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

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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.

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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.

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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.

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 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.

 

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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!   

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

 

Colleen

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