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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Prezwilson15

Did You Have Hair Loss From Celiac?

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As I mentioned in a different post, the past several months I've lost a lot of hair. Even still this morning, there were probably 200 strands of hair that fell out between the shower and combing afterwards. Luckily, I started out with VERY thick hair so if you didn't know me, you wouldn't be able to tell.

If this continues though, people will start to notice.

So far the Doctors have tested me for a lot of things and have ruled out thyroid disease, etc. The only thing that came back up on my tests that were weird was that my iron "stores" were slightly low, a 58 (on a scale from 59-158 being normal) and my Vitamin D was slightly low. They didn't test my other vitamin levels like B, but my mom things the crack in the side of my mouth was from a B defiency.

Anyway, did anyone have hair loss from their celiac disease? If I'm putting 2 and 2 together, I seem to think my hairloss might be from (undiagnosed) gluten issues. But I don't know for sure yet. Today is only my 2nd day gluten free.

I've started on a Biotin supplement, and it's been a week and the hair loss hasn't even slowed. I took a couple of iron pills, but need to get back to that.

Any thoughts on hair loss? Did you have it? How long did it take to stop falling out and then grow back?

Thanks,

Paula

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My hair was much thinner before I found out, and grew very slowly. It's healthier now & grows pretty fast.

Also, I had vitamin D deficiency. My doctor was stumped and insisted I take a huge supplement - and said I needed to be outdoors more often. I was already outdoors for 1-2 hours per day! My body just wasn't processing it properly. I'll be tested soon & see if that has resolved itself. I never took the big supplement because I was worried what would happen if I ended up with too much of it - that can be really bad. Vitamin D doesn't just flush out of your system like other vitamins.

Are you taking any other supplements? If you're taking anything in megadoses, make sure it might not be the cause.

And have you done a gluten-free trial with a challenge to see if it is a problem? If you don't have gut problems, it might be hard because my hair didn't improve for a few months - that was just a happy side effect I noticed later.

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I'm doing the gluten free trial right now. I can tell you after 3 days, my stomach doesn't hurt like it did earlier in the week already.

I'm taking a "hair, skin, and nails" supplement that has 5000mg of Biotin in it. I'm hoping that helps. I just started last week. I'm also adding a Vitamin D and an iron on top of that.

I just want the hair loss to stop. At this point I don't care if it grows back right away, just stop falling out.

Paula

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I'm doing the gluten free trial right now. I can tell you after 3 days, my stomach doesn't hurt like it did earlier in the week already.

I'm taking a "hair, skin, and nails" supplement that has 5000mg of Biotin in it. I'm hoping that helps. I just started last week. I'm also adding a Vitamin D and an iron on top of that.

I just want the hair loss to stop. At this point I don't care if it grows back right away, just stop falling out.

Paula

Is your supplement gluten free? You'll want to check that. My hair got thinner too. My doctor said it might take a year or more for it to be healthy again. I think it is better, but not back to "normal" yet (after about 8 months gluten-free).

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I had massive hair loss from celiac. Really bad. I am still very thin up there and it makes me cry. (It is not my thyroid, either--as that can sometimes be the culprit.) I have read a few articles that suggest why it happens---it can be iron, folate or vitamin B deficiencies like biotin...and a deficiency of zinc and essential amino acids.

Your Mom is right! The cracks in your mouth are a B deficiency.

As your gut heals, the vitamins will absorb better and you should see a decrease in hair loss.

Everyone I ask this question of (dcotors, other celiacs) tells me the same thing---it will grow back in. I hope so. Having bald spots is embarrassing for me. :unsure:

Hope you see results soon!

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@Irish, how long has it been since you started going gluten free?

Has the hair stopped falling out?

Paula

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@Irish, how long has it been since you started going gluten free?

Has the hair stopped falling out?

Paula

Paula, I have been gluten-free for 6 months. I hate to tell you this because I do not want you to be discouraged, but mine still sheds. :unsure:

But, EVERYONE is different and I have some severe vitamin/mineral deficiencies and I had undiagnosed celiac disease for MANY years, so I am going to take longer to resolve my gut issues. (remember the small intestine is over 20 feet long!)

So, you may not have the same healing time as others.

You may have resolution a lot faster! Depends on your age, too.

Most people see the hair loss cease within a few months to a year. Some take 2 years. Do not worry if it does not happen over night.

It will come back.

No worries.... okay?!...because stress will just add to the mix.

You're going to be all right! ;)

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I appreciate the information. I know too that my hair could be falling out from stress. I had a really stressful couple of months so that could be the cause too.

I'm going to try this for a while and see what happens, it can't hurt, right?

I'm only 35 years old so hopefully it's not peri-menopause yet as I've been debating on trying to have another child.

I guess time will tell.

Paula

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Definite hair loss for me starting when all my other problems did - about 9 months before my diagnosis with celiac. At the beginning of the summer I even noticed my scalp was sun-burned when I had my hair pulled back into a ponytail (no part.)

I've been gluten-free for 3 months now and do take vitamins (A-Z Women's, Walgreens brand with gluten-free on label) and I've noticed my hair slowly returning.

My hair began falling out a few months after other problems began and continued. It got the point where I dreaded washing/brushing my hair because I knew how much I would lose.

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YES! Started thinning 8 years ago after the birth of my daughter. Fortunately it was pretty thick to begin with, but I could tell a big difference. Hoping that some of it will come back now that I'm gluten-free.

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I have always had a lot of hair, and correspondingly loose more than most. When I started getting really sick I was loosing lots and lots, I mean shower clogging amounts. After going gluten free my hair is staying more where it belongs, on my head. However, when I get glutened my hair starts falling out a bit more. It took a while for me to notice that it wasnt falling out as much, nearly a year after going completely gluten free. Give it some time and be glad that you started with a lot of hair.

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Oh, wow yes. I lose my hair when I get into gluten, I now recognize it as one of my early warning signs that something gluten contaminated has crept into my life again. When I was finally diagnosed with celiac by my doctor, I'd been losing my hair for quite a while (among umpteen other problems which also all turned out to be from gluten). My hair started growing back soon after I pulled all the gluten out of my diet and life, and after a couple of totally gluten-free months I had crazy short tufts of hair growing all over my head from where it was finally getting a chance to grow back in! I went to see my doctor in that time, she saw my hair and said "oh, you are SO celiac". :lol:

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Thank you everyone!

Well between being gluten free and upping my supplements, I think the hair loss is at least slowing down. So I'm hoping that continues to a full stop.

Then it would be nice for it to start growing back. :)

Paula

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Paula, I have been gluten-free for 6 months. I hate to tell you this because I do not want you to be discouraged, but mine still sheds. unsure.gif

But, EVERYONE is different and I have some severe vitamin/mineral deficiencies and I had undiagnosed celiac disease for MANY years, so I am going to take longer to resolve my gut issues. (remember the small intestine is over 20 feet long!)

So, you may not have the same healing time as others.

You may have resolution a lot faster! Depends on your age, too.

Most people see the hair loss cease within a few months to a year. Some take 2 years. Do not worry if it does not happen over night.

It will come back.

No worries.... okay?!...because stress will just add to the mix.

You're going to be all right! wink.gif

Any hair growth improvements???

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YES! Started thinning 8 years ago after the birth of my daughter. Fortunately it was pretty thick to begin with, but I could tell a big difference. Hoping that some of it will come back now that I'm gluten-free.

Have you had luck with your hair growing back?

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Any hair growth improvements???

 

Yes, it's much better than it was, but still not a "thick" as I would like it. No bald patches anymore though (yaay!) . I remain hopeful. :)

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Hi, I had hair loss too...clogging the shower and back then I was dx'd hypothyroid.....that was 2 years ago. Also it grew slowly, along with my nails that became dry, ridgey and brittle and hardly grew. I have been gluten free almost 5 weeks now, hair isn't falling out as much, skin and nails are much better.....now if I can gain some weight!

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My daughter lost a huge amount of hair - very upsetting for her, as she was only eleven at the time.  Good news is that after several months the hair loss stopped and her hair is not as thick as it ever was.

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I had a problem as well, my Dr tested me for a bunch of things and for me I had a Folic Acid Defiency.  Since I started taking Folic acid daily it has improved and the excessive hair loss has stopped. 

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Yep. I lost a lot of my hair. It had been thinning for about 18 months and it wasnt until i realised i hadnt had it cut in a year (trying to 'grow it' ) and it was half the length and thickness. I have been gluten free since october last year when i was diagnosed and its starting to get its thickness back but very slowly :( My brand new hairdresser before she even knew about my coeliac told me she could see fresh hair growing. I was so relieved. Dont worry once everything is under control it should grow back :)

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I know of someone with the hair loss due to thyroid disease also, common with Celiac.  

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I just wanted to post that I have been gluten free for 3 years... prior to this i had major hair loss starting in 8th grade.  I went to see a dr in 8th grade, highschool and again in college... the only thing I was tested for was having too much testosterone? of course i didnt (im a girl!), and was told it was just how i was and would have to deal with it and thats why stars like bruce willis are bald.  :(  lol.... anyway... i have been gluten free for 3 years and not until this year have i seen a huge noticeable difference because i have so many new hairs that are about 3 inches long...  and I am sooo freaking happy about it.  before, it was bad to the point i was embarrassed to wear my hair down and go in the sun, because you could see through my hair :(  super sad and depressing... i also had major ear problems my entire life... tubes in my hear, ear drum  burst, vertigo... eczema... shy, introverted, depressed.... dude my body wasnt getting any vitamins... anyway... i wanted to post this so that if anyone happens on this site and they have these symptoms... they might get tested or go on the diet....  i am a whole different person now.  YEOW!

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Right before diagnosis, when she was really showing the signs or malnutrition, my daughter's hair (she was only 11 then) fell out in handfuls.  It was really awful for her.  Got very thin.  After a few months it stopped falling out, and started to grown in.  Then it happened again!  She's now been gluten-free for just about two years, her hair is nice and thick like it used to be, and we've had no problems.  She does take iron and Vitamin D.  I just noticed I answered this before :(  But it really is very upsetting, particularly for a female.

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My hair was super duper thick, but I had hair loss this past year from thyroid problems and that included my eyebrows which thinned out at the outer edges. All back to normal since my thyroid has stabilized and I must be absorbing all those vitamins I am taking' not to mention the good gluten-free food I have been eating!

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Good evening yall!

 

my question kinda goes out to IrishHeart, I'm a guy but it sounds like my hair loss conundrum is very similar to yours. 

I've always had fine hair, but as a hairstylist said I have alot of tiny hairs so it compensates?

 

anyways I'm losing a fair amount of hair just in the front, which hasn't done much but give me a bigger forehead.

B vitamin tests and folic acid came back normal, what has helped the most for you?  certain shampoo?

should I no longer use hair gel?

 

when you hair came back, did it grow thicker in the middle or did it also normalize the outerlining hairline?

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