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Did Your Hair Fall Out?


libbyann

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libbyann Rookie

Several years ago, my hair fell out. Not completely, but it got really, really thin. I never knew what caused it, or what caused it to stop. But lately I realized this happened at the same time I was having so much trouble with my stomach, before I figured out I'd developed gluten intolerance. And since I stopped eating wheat, my hair hasn't fallen out again. Could there be a connection?

Libby


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Guest j_mommy

Yes! Mine did the same thing...it was caused by the vitamin deficencies, in my case b/c of the celiac your body does not absorb the nutrients. Once I went gluten-free it slowly got better. I have very curly hair so some falls out anyway but it is much better now that I am gluten-free!

ravenwoodglass Mentor

Yes, in my case I think it is autoimmune related. Even now 5 years gluten-free if I get glutened or use a hair care product with gluten it will fall out again. It only lasts a couple days now though before the falling stops. My DH had alopeica areata, also autoimmune related where the hair falls out and leaves round bald patches. If he gets a dose dose that will happen again to him also. I think this is common even if the cause is a bit different for some of us.

miles2go Contributor

Mine did too, but it came back. I remember being at the store almost buying the Rogaine right before dx and now I can't help but *thinking things* with the coworkers who have thinning hair/round bald patches issues.

I don't mind telling my situation, people ask questions and then don't do anything about it. It's your life...

:\

Margaret

cruelshoes Enthusiast

After I was diagnosed, I started to lose lots of hair. I was really freaked out by it. I went to the doctor about it, and she said that any time you have a serious illness (I was literally near death when I was diagnosed), it disturbs the hair cycle. Hair lives a certain amount of time, and then it is programmed to fall out. The number of hairs growing and falling out is supposed to be balanced. But if your body goes through something major, the cycle gets out of whack. It can also happen from periods of stress, diet change, etc. It did stop after about 3 months.

Hope this helps.

Miriam3 Rookie

It happened to me and it was creepy! This was long before I was diagnosed. I had gotten the flu. I couldn't eat much for a few days and around the time I started getting better a CRAZY amount of hair fell out. It was evenly distributed, so no bald patches, but my ponytail wound up being less than half as thick (had to buy those tiny hair ties). I'm sure I was already on the edge of malnutrition and a couple of days only eating applesauce just finished off the hair.

I have always shed a lot of hair-- my sisters too, and the doc didn't care because it didn't seem to be thinning overall. I'm shedding a lot less though since I went gluten free. Anyone else notice this?

jerseyangel Proficient

I lost a significant amount of hair around the time I was diagnosed. I had been quite ill, severly anemic and had lost weight. It stopped falling out about 4 months into the diet. This was in 2005.

I had major surgery in January of this year--my hair has again been shedding for the past few months, and I'm thinking it has to do with the trauma of the surgery.


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sickchick Community Regular

I can't tell you how much hair I have swept up during the last year... but about 6 months ago I started taking a theraputic amount of Biotin (5000 mcg) and a B complex every day. It's helped a lot.

good luck!

jmd3 Contributor
Several years ago, my hair fell out. Not completely, but it got really, really thin. I never knew what caused it, or what caused it to stop. But lately I realized this happened at the same time I was having so much trouble with my stomach, before I figured out I'd developed gluten intolerance. And since I stopped eating wheat, my hair hasn't fallen out again. Could there be a connection?

Libby

My hair fell out by the hand-fulls - thankfully it has stopped over the last few months, since I stopped eating gluten.

blueeyedmanda Community Regular

Mine did fall out...not completely out but I was losing chunks in the shower. At the time I thought I was tying my hair too tight on my head...I always would scrunch it up. My hair was real long and my sister told me everyone with long hair sheds. So I quitting doing my hair like that but I was still losing it.

Since my hair was thick it didnt show up to anyone else, but I knew it was happening. Once gluten free it never happened again :)

Katydid Apprentice

I posted this on another thread but will share again. I have a friend whose 10 year old son had a perfectly smooth bald spot right on the top of his head of otherwise very thick hair. When the dermatologist and skin speciialist couldn't help, his doctor decided it might be caused from malabsorption and ran a celiac panel..and sure enough he was positive. Just weeks after starting a gluten free diet, his hair is starting to fill in already. This was the youngster's only symptom.

blueeyedmanda Community Regular
I posted this on another thread but will share again. I have a friend whose 10 year old son had a perfectly smooth bald spot right on the top of his head of otherwise very thick hair. When the dermatologist and skin speciialist couldn't help, his doctor decided it might be caused from malabsorption and ran a celiac panel..and sure enough he was positive. Just weeks after starting a gluten free diet, his hair is starting to fill in already. This was the youngster's only symptom.

wow, thanks for sharing. We usually hear about all the other symptoms..this is quite the eye opener.

Emily Elizabeth Enthusiast

I had no idea my hair was thinning, but when I went to my hair dresser after being diagnosed, she said that I had lost a lot of hair and that I had new hairs growing in. Crazy!

Several years ago, my hair fell out. Not completely, but it got really, really thin. I never knew what caused it, or what caused it to stop. But lately I realized this happened at the same time I was having so much trouble with my stomach, before I figured out I'd developed gluten intolerance. And since I stopped eating wheat, my hair hasn't fallen out again. Could there be a connection?

Libby

Felidae Enthusiast

Yes, my hair was thinning rapidly before I removed gluten from my diet. My hair has thickened a lot. It was a slow process, but I was glad to notice that it had improved over the first year on the diet.

mftnchn Explorer

I had a sudden and severe hair loss during the last six months of 2005, never really figured out why unless it was hormone related. I had started taking a low dose of prometrium in February of that year to try to help with increasing insomnia that wasn't responding to anything else. It grew back in quite wavy.

Now I wonder whether it was celiac ralated. Since gluten-free, I have started to have another loss of hair, though not as severe. It started the same time of year as 2 years ago, too.

I'll have to wait and see what happens as I am not gluten-free that long yet. (4 months)

goldyjlox Contributor

Thats crazy b/c this just happened to me lately, it has since stopped but I figured that it was my pregnancy hair. My hair fell out with my first at around the same age as my son (11 months) and my doctor said that it was b/c of my pregnancy...maybe not!!!! Very interesting piece of information and I will be keeping a eye on my kids hair too.

lonewolf Collaborator

My hair started getting very thin in college - the same time I started having serious digestive problems. It got thicker when I was pregnant (3 times) and then thinned out again and then thickened a bit when I removed gluten, dairy, eggs and soy from my diet. A few years ago I had to go on Prednisone for 9 months and it got REALLY thin again. It still is pretty thin - enough to cause embarrassment in the wind or when I swim. It hasn't grown in much at all even though I'm fanatically gluten-free. I'm to the point where I dream of getting a hair transplant just to avoid the embarrassment of people looking at the top of my head. I'm not overly vain, but it's hard to deal with. I'm not too old (43), so I don't really want to have this problem right now.

cyberprof Enthusiast
I posted this on another thread but will share again. I have a friend whose 10 year old son had a perfectly smooth bald spot right on the top of his head of otherwise very thick hair. When the dermatologist and skin speciialist couldn't help, his doctor decided it might be caused from malabsorption and ran a celiac panel..and sure enough he was positive. Just weeks after starting a gluten free diet, his hair is starting to fill in already. This was the youngster's only symptom.

That's one SMART doctor!

Cat5 Newbie

Mine too ! I am newly diagnosed and I also happen to have a dead thyroid gland which I have to take a daily pill for, so I always thought my hair falling out was due to my dead thyroid gland because it was one of the symptoms as well.

However, I have read that Celiac disease can cause thyroid troubles so it appears that all of these Auto-Immune diseases may go hand in hand.

Sheesh, this is scary! My hair still falls out...so much so that when I vacuum which is at least once a week, I Always have to stop the vacuum cleaner and cut my long hair out of the brush rollers!!

I can see I may learn a lot from this site.

VioletBlue Contributor

My hair started to thin in my twenties. I'm 45 now. It is embarrassing and I've tried Rogain in the past before I was diagnosed with only moderate success.

I gave up on vain a couple years ago. There's just no way I could be. It's obvious I have very thin hair and all the hair care fluffing volume products in the world can't begin to disguise it. Then you throw in the chronic bronchitis and constant itching and obvious hives and I'm a walking freak show most days now. Fortunately it's a relatively small town, and most people who know me well know what I'm dealing with and are kind. That's not to say there aren't some really challenging times still, some days where I just cringe and want to hide and cry because this is as good as it gets and I can't do anything about any of it except remain gluten-free and hope that helps.

In my case I don't know that it's celiac disease that's to blame. I was told years ago that the balding gene passes through the male side of the family and my father began to loose his hair in his twenties as did his father and brother and my brother. My mother kept a full head of hair till her death. But my oldest sister who is 54 has probably half the hair I have and is also "lactose intolerant". I'd suggest she get tested for celiac disease, but we're not speaking. Actually no one in the family is speaking to her. I would guess she has celiac disease. I was surprised the last time I saw her in December that she was obviously skinnier than she was ten years ago. This is not the pattern with the women in my family. We usually get fatter as we get older. My other sister who is 47 has begun to complain of thinning hair. So I don't know. I know I've been severely anemic and I remember a study awhile back that said iron has a lot to do with hair loss. But I also know I have genetics working against me from my father's side of the family.

Violet

My hair started getting very thin in college - the same time I started having serious digestive problems. It got thicker when I was pregnant (3 times) and then thinned out again and then thickened a bit when I removed gluten, dairy, eggs and soy from my diet. A few years ago I had to go on Prednisone for 9 months and it got REALLY thin again. It still is pretty thin - enough to cause embarrassment in the wind or when I swim. It hasn't grown in much at all even though I'm fanatically gluten-free. I'm to the point where I dream of getting a hair transplant just to avoid the embarrassment of people looking at the top of my head. I'm not overly vain, but it's hard to deal with. I'm not too old (43), so I don't really want to have this problem right now.
Aligray Apprentice

I lost SOOOOO much hair! So So So So So much!

I had NO idea why! Kept blaming it on having my son and the epideral! BUT 8 years later I was like...what on earth is going on???

THEN in February I was diagnosed with Critically LOW Vitamin D. I began taking Vitamin D tablets and I cannot tell you how long my hair is now. AND it is soft and my spiral curls are now spiralled again. It's incredible.

I must say that I began the Gluten Free diet in January. That is why I am now able to absorb the Vitamin D.

The rheumatologist is the one that discovered the Vit D deficiency via blood test.

Good Luck!

-Ali :)

lonewolf Collaborator
THEN in February I was diagnosed with Critically LOW Vitamin D. I began taking Vitamin D tablets and I cannot tell you how long my hair is now. AND it is soft and my spiral curls are now spiralled again. It's incredible.

I must say that I began the Gluten Free diet in January. That is why I am now able to absorb the Vitamin D.

Hmm, interesting. I found out in March (I think) that I have very low vitamin D too. Can't figure out why my body isn't absorbing it, since I've been gluten-free for quite a while. I'm still on large doses of D since my numbers are going up slowly. Maybe it will help my hair too! I've got lots of curls on the sides, but not much up on top.

Innana Newbie

It was my hair loss that led to me going to the doctor's in the first place, and ending up with Coeliac diagnosis.

I asked for my thyroid to be checked, as I had noticed an alarming increase in the amount of hair I was shedding each time I washed it or even just wet it in the shower and my Mum has an under-actrive thyroid. The blood tests showed thyroid OK but that I am significantly anaemic. My biopsy (taken as routine here in the UK after diagnosis a few months earlier with hiatus hernia and gallstones) showed positive results for Coeliac Disease.

I've been taking iron supplements and been gluten free since May and my hair is still falling out a lot, but it's all over, not in patches, so still not really noticeable to anyone except me at the moment, although my hairdresser also noticed. I'm hoping to see some improvement soon, but if not, then I'll invest in some fabulous wigs or extensions!

It's conforting to read that this has happened to others as well and that their hair has come back after a while.

ElenaDragon Explorer

I have had hair loss off and on for the past two years or so (and I'm only 28). It is all over and definitely noticeable. I use volumizing shampoos, but you can still see more of my scalp where I part my hair. I've had my thyroid and iron levels checked and all came back fine. I did try Rogaine for two months or so (as my dermatologist recommended) and saw no change. It would be fantastic if it started growing back on the gluten free diet.

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    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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