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Hair Loss?
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Hello everyone,

I had a positive biopsy done on May 9th. Since then, I have been totally gluten-free, or at least by trail and error, am trying to be.

I was diagnosed "severe"..meaning I have probably had this disease for most of my adult life. During that time, I have experienced off again, on again hair loss. It has been horrible since about March, much worse than usual. I have been taking major vitamins and eating healthy since I have been diagnosed, so hopefully, I will see some changes soon.

Has anyone else, experienced hair loss with celiac disease?

Thanks for any input...

Jane in Chicagoland

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Hi SandyShoes,

I have a gluten intolerance. I will be tested for celiac disease soon. I have experienced hair loss in patches for a very long time. I understand what you are going through. I have itchy, irritated scalp. For a while, We thought it could be due to certain products/perms I put on my hair. I have stopped getting any kind of chemical in my hair. Thus, My hair would always come back. Even so, I still have experienced hair loss. There was a time that my head hurt so bad I would yell out and cry. This all has been greatly improved ever since I went gluten free. I was in denial for a long time and would cheat on my gluten-free diet. My mom kept saying you know whats wrong, now try to improve your situation. Once you go completely gluten free, hopefully you'll see results. Also, you may want to see a Dermatologist. I apply a low grade steroid cream to the effected area.

Good luck and God bless,

Traci

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I have had hair loss off and on since I hit puberty. I still have a completely bald spot on my scalp from hair loss at 13.

Despite this I had a thick head of hair until I was about 25 and them I started loosing so much hair that I left a trail of hair everywhere I went, and the tub was FULL of hair floating in the water so bad I had to strain the hair out with a net so it wouldn't clog the drain. This would come and go for months at a time. I lost at least half the vloume of my hair and most of it did not regrow, but fortunately it was uniform hair loss, so I don't have more bald spots!

I do have to say that the hair loss slowed considerable when I went gluten-free. I still loose a little, but I think it is a more normal amount now.

I also have psoriasis on my scalp AND my scalp and hairline is the first place I break out with the DH blisters when I get glutened. I am extremely careful with my hair care products, and haven't permed my hair in over 12 years. I had never used hair color (until last week and I got some highlights) and I don't blow dry or use a curling iron except a few times a year for special occasions. I don't normally use any hairspray, gel, mousse, etc.

God bless,

Mariann

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When I was at my worst, I had above average hair loss. The hair loss cleared up after I was on the diet for awhile.

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I've had hair loss off and on the whole time I've been sick. It was worse in the beginning...I was losing so much I dont know how I didn't get bald spots. I also had Hyperthyroid going on at that time...I was lucky cuz I had 2 conditions going on at the same time for awhile and they both caused hair loss :angry:

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Thispost for some reason reminded me of my own story that started with my hair falling out..........I remember when I noticed my hair falling out and everyone told me I was crazy. A year later and I went from long thick curly hair to hair that just lays flat and thin. I still get sad when I think about it! Anyways people also thought that I was crazy cause I would be in tears about how much my scalp hurt..it was unbearable! I went to the doctor cause I thought I was anemic and he gave me a shampoo and anti-depressants...he didnt see anything wrong with my scalp so he assumed it was in my head. Anyways after a bad allergic reaction to the anti-depressant (which I had to get test for eye damage becuase they were so dilated for so long, my heart rate was abnormal and blood pressure off the roof...thanks doc! ) that wasnt even needed he decided that I had low estregen levels so I was put on birth control..... well after 2 straight months of the flu I finally saw another doctor who told me I had tumors! Then finally they said wait its Celiac! Since that day I have tried to watch my diet and I do mess up a lot but even so my hair has stoped falling out as much!!!! ANd to all of those people who thought I was crazy in the beginging well look I was right something is wrong and now it is my chance to get my life back, heck my hair back. Being Glutten free is the easiest way!

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Thats exactly how people reacted when I would get upset about so much hair falling out. They were like..."theres nothing wrong...you have plenty of hair" or "everyone loses a little hair here and there". It wasnt a little hair here and there though...it was massive amounts. I'd say I lost about half of my hair at one point. Luckily my hair was thick to begin with so it wasnt like I went bald or anything. Just last week before I got my test results back I was talking to a doctor about my weight loss and how I suspected I had malabsorption. The first thing she did was grab my ponytail and she was like "you don't have malabsorption...if you did you'd be losing hair and you have plenty of hair." I just rolled my eyes...it was the first time I'd ever seen her so how would she even know if I'd lost hair or not!

Whatever.

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I used to lose hair like crazy too. I'd have big piles in the shower, hair stuck to my clothes, hair all over my chair at work .... yuck! I am happy to report this is no longer the case. I've had the occasional week or two when this happens again, but I have a feeling these incidents are related to gluten-accidents.

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Thank you for the replies. I asked my cardio (along with celiac, I also have PSVT) yesterday if there is a relation between the hair loss and celiac, and he said absolutely. They only big wonder I have, is that I have had every blood test done known to modern man to check my thyroid, iron levels...things that would show if I have any malnutrition issues. Every test, came back normal. I find that miraculous, considering I have been sick with this disease for years. I guess that my small intestine and my scalp, paid the ultimate price. :(

Jane in Chicagoland

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Hello everyone,

I had a positive biopsy done on May 9th. Since then, I have been totally gluten-free, or at least by trail and error, am trying to be.

I was diagnosed "severe"..meaning I have probably had this disease for most of my adult life.  During that time, I have experienced off again, on again hair loss.  It has been horrible since about March, much worse than usual.  I have been taking major vitamins and eating healthy since I have been diagnosed, so hopefully, I will see some changes soon.

Has anyone else, experienced hair loss with celiac disease? 

Thanks for any input...

Jane in Chicagoland

<{POST_SNAPBACK}>

Hi there. I think I am doing something wrong with replies (new here) but this may post anyway. There is a lot of talk about hair loss being hereditary - I think it may well be that this family history of hair loss is actually celiac related. I have a multiple family members with celiac symptoms (not diagnosed) and I am half way diagnosed at this point (long story). I, my mother and her mother all had significant hair loss. I am using a product called Nioxin - a highly recommended line of products - by doctors and hair salons as well. It takes some dedication but no more than a gluten free diet. Regrowth more common if the loss is recent. It definitely greatly reduces the ongoing process. Good luck. Claire

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Celiac definately affected my hair. Not only was it very thin but my hair was almost totally white on the top and sides. After diagnosis I went through my shampoos and was shocked how many contained wheat along with my hair dyes (I don't dye at all any more). This was almost 3 years ago. My hair has grown back as thick as it was when I was little, (not always a good thing), and best of all what is growing back is brown. It took almost 2 years gluten-free for me to see a real difference but it's finally showing even to others. I know not everyone sees as good of a result as I have but I would expect some improvement. It does take awhile though.

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You saying that your hair grew back brings a lot of hope to me!!! I had every thing under the sone tested as far as my iron levels, protein, so on and mine came back normal too. So I can see how it is confusing! TRUST ME! I ate gluten yesterday and today! I finally went to the health food store and bought food! Well note to self just cause it says WHEAT FREE really big....doesn't mean its barley free.

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just cause it says WHEAT FREE really big....doesn't mean its barley free.

<{POST_SNAPBACK}>

Or rye free, or free of crosscontamination. Some times I feel like eating is a crap shoot. I've thought of going with the raw diet but with extensive diverticulosis don't think that would be advised. Stick with the diet, it can be frustrating at times but its worth it.

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I have lost a ton of hair over the past few years and my doctors told me the same sorts of things...everyone loses hair as they get older, your hair looks fine, and my favorite--you certainly don't look malnourished! All of my tests have come back normal (except for once my thyroid was slightly low but then it recovered). They always told me I was fine. Then in my most recent bout of tests, a month ago, I had low iron levels. So then I asked to look at all of my test results and pretty much everything they tested was at the low end of normal....and the normal range for these things is huge! So I'm wondering is normal for me the same as normal for a 60 year-old man? If anyone knows how these normal ranges were developed I would like to know.

Kallie

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Hi everyone.... I really need some help here! I am getting so frustrated with this disease.. I feel like I am aging so fast, I feel that my skin, eyes and hair have taken a huge hit and its making me so so depressed. I spend so much money on healthy foods that are gluten free and vitamin supplements and nothing is working... I cant stand looking into the mirror any more. I know I have to give it time... I have only been gluten free for 4 months... How long could this take.... Does it get better? Could there be a chance I wont get better? My hair is so freakin thin I dont even look the same as I did 1 year ago......

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Hi everyone.... I really need some help here! I am getting so frustrated with this disease.. I feel like I am aging so fast, I feel that my skin, eyes and hair have taken a huge hit and its making me so so depressed. I spend so much money on healthy foods that are gluten free and vitamin supplements and nothing is working... I cant stand looking into the mirror any more. I know I have to give it time... I have only been gluten free for 4 months... How long could this take.... Does it get better? Could there be a chance I wont get better? My hair is so freakin thin I dont even look the same as I did 1 year ago......

Have you been tested for thyroid problems? not just the TSH but the Free T3 and Free T4?

thyroid and celiac tend to bunch and a classic symptom of low thyroid is thinning/losing hair, dry skin etc.

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Hi everyone,

I too, have been losing a lot of hair lately. Not in patches, but it's just thinner than it used to be & I see it everywhere. I have been using Gluten-Free Savonnerie shampoo & conditioner in the last month since I went gluten free. Since then I've been breaking out with acne all around my hairline & forehead. I mean real bad acne -even my husband noticed it. Anyway , stopped using it a few days ago. I do have a lot of allergies, so I think there's something in it that's really bothering me. I hear Gluten-Free Savonnerie is a good company so I'm not trying to hurt their reputation. I just think everyone's different. And it definitely wasn't good for me. I do like their lotion, though & I don't seem to have trouble with it.

Anyway, tomorrow I'm going to start using Giovanni shampoo & see if it makes everything better. Well see... ;)

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Ooofdah! Looking in the mirror closely I found I have lots and lots of short hairs coming in, all about 1 1/2 inches long!

Was diagnosed celiac a month and a half ago. When I was sick with celiac and didn't know what was going on with me, I was losing a lot of hair. I was having to clean my vacuum cleaner every time I used it because the long hairs were wrapped up in it. My brush was thick with shed hairs whenever I finished using it. But the hair loss wasn't as bad as when I had thyroid disease. Back then, whenever I washed my hair, may hands would be covered so much with hair that I could barely see the skin on my palms.

So, I got a haircut; I explained to the stylist what was happening to me and he gave me the best cut I've had, ever! Now my hair looks thick, in part because of the way he cut it, but also because the little, short hairs that are grwoing in are lifting the longer hairs away from my head.

Yay for a good stylist and the gluten-free lifestyle!

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Hi everyone,

I too, have been losing a lot of hair lately. Not in patches, but it's just thinner than it used to be & I see it everywhere. I have been using Gluten-Free Savonnerie shampoo & conditioner in the last month since I went gluten free. Since then I've been breaking out with acne all around my hairline & forehead. I mean real bad acne -even my husband noticed it. Anyway , stopped using it a few days ago. I do have a lot of allergies, so I think there's something in it that's really bothering me. I hear Gluten-Free Savonnerie is a good company so I'm not trying to hurt their reputation. I just think everyone's different. And it definitely wasn't good for me. I do like their lotion, though & I don't seem to have trouble with it.

Anyway, tomorrow I'm going to start using Giovanni shampoo & see if it makes everything better. Well see... ;)

Does the Savonnerie shampoo have soy in it? I have a topical allergy to soy as well as an intolerance so soy in shampoos will break me out and cause itchiness and eating soy makes my hair fall out as well as other nasty effects.

May not be the issue for you but thought I should mention it, just in case.

I loved the Giovanni line until I developed the soy issues. Their Smooth as Silk Conditioner was my all time favorite conditioner.

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Savonnerie shampoo and conditioner are both soy free (I think all Savonnerie products are).

Have you tried any of the Desert Essences Organics range? I think they are probably soy free too.

Good luck with either, I know how much damage the wrong products can do!

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Having hair grow back in is one of the side benefits of the diet :)

I actually let mine grow out this past winter a bit to see if it would stay thick at a longer length, to just beyond chin length, it did, I said, okay, that's interesting, but it's TOO HOT in the summer for this, especially now that it's more like its thick, curly, and unruly self, and cut it back to shorter again.

For conditioner I mix apple cider vinegar with water, 1 part vinegar to 7 parts, and either spritz or pour it on after shampooing and rinsing. Then if it needs more, I put a tiny dab of pure coconut oil or shea butter in my palm, and spread it around and then rub it lightly all over my hair. This way I don't have to worry about mystery ingredients in the conditioners. B) Diluted cider vinegar makes the pH of the hair closer to normal and is a great detangler.

For shampooing, I found some sort of inexpensive cucumber body wash that has no bad ingredients and that I'm not allergic to when I use it. I am way sensitive to topicals, using the wrong ingredient blotches and breaks out my face badly, and very grateful to have finally figured this out. Since every time I find something like this, the manufacturer either changes ingredients or stops distributing it, I don't want to jinx myself and declare it is the only thing that works. I know how that goes.

Plain old bar soap or castile soap or baking soda and water can also be used on hair, and they are easier to track the ingredients of.

There is an internet forum called the long hair community forum, while it does not specifically deal with gluten free, they have entire long discussion threads on using all sorts of different non chemical ingredients on hair, and they are sort of like natural beauty product connoisseurs for the hair geeks. Some of them will just put conditioner on the hair and then rinse it out well, followed by an ACV (apple cider vinegar) water rinse. This works best for those of us who finally got past the teenaged over oily scalp phase and have the thicker, curly hair that gets dried out easier, but might need to have sweat or dust rinsed out of it often. This is called "Co -washing" or conditioner only washing.

ongoing thread http://forums.longhaircommunity.com/showthread.php?t=2898&page=129

Sometimes I just rinse my hair and then cider and coco or shea it.

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Wow. I am waiting for blood test results (and have already gone gluten free for maybe 2 weeks, with some significant improvements in GI symptoms, but not cured yet-- waiting on immodium to kick in right now before going shopping), but since I've been "sick" (become quickly miserable for the last six months), my hair has been falling out too. I don't see any thin spots yet, but I'm shedding hair like crazy all night and day. I'm gotten very gentle when I brush it! I didn't realize this could be another symptom.

My shampoo doesn't say "wheat" but it does have many paragraphs of words I can't pronounce-- I think I'll go to the health food store and switch to a brand that actually calls itself gluten free.

clarkje20: I have developed a lot of fear since I've been feeling this way, and am really down on my appearance. Even though I've lost a bunch of weight I needed to lose, it's been in a scary way, and I can't enjoy the smaller sizes of clothes like I would if this was a result of healthy habits. I also feel like I LOOK sick, like my face looks drawn, dark circles under my eyes, my hair more brittle, and just gross all over. I am trying to do everything I can to find healthy sources of nutrition, extra sleep, exercise, etc., and this is HARD STUFF. I spend a lot of time on these boards, looking for the posts of people who have this, who have gotten control of it, and who seem to be doing better now, and that's what really helps me.

Those of you who feel better, please keep saying so! I've had a lot of frustration and fear, and it helps.

(Sorry to go a bit off topic!)

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Hi there, I am currently working out wether or not I have gluten intolarance of any kind.

When I was about 8-9 years old i developed Alopecia Areata. No one knew how or why this happened to me. I had bouts of anxiety issues whilst growing up, but no one knew for sure why.

Today I believe i have found the missing link that I have been looking for for many years....GLUTEN. The more I have researched this subject, the more i am convinced my hair will grow back to a healthier fuller hair. I also believe my anxiety which is now under control with venlafaxine could one day go away once the gluten is completely gone from my body. it is only 3-4 days so far and I feel heaps better already. I was suffering from reflux and went on antiacid tabs(losec) which may have contributed to my current bouts of hairloss, as one of it's sideffects are alopcia, anyways i decided to never touch those types of antiacids, i will only go for those chewable ones if i really need it. My need for those chewable tabs are decreasing everyday, and I am so thrilled about this! I drink lots of milk now which also soothes my tummy if i get heartburn. And eating probiotic yoghurt to boost my gut bactieria. Right nowe though i am experiencing lots of flatulance lol, must my gut re-adjusting to the new gluten free enviroment....

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I was accidentally glutened last April, and I ended up with both floppy tendons and various symptoms of zinc deficiency (which included my hair falling out and the scalp becoming flaky). Anyway, I didn't figure out until late September that the zinc deficiency (and possibly manganese and silicon, too) was causing the floppy tendons, which resulted in numerous stress fractures in my feet. I did some research and discovered that I was taking the wrong kind of zinc--I should have been taking amino acid chelated form. So, I began taking that form of zinc, along with chelated manganese (which, if you have a deficiency, can cause iron anemia because it blocks the utilization of iron) and silicon. Not only did my tendons almost immediately begin to become normal again, my hair started growing! There are now hairs that are nearly two inches long growing all over my head, and my hair feels thick the way it used to. I stopped taking the zinc and manganese a few weeks ago because I read that it can be harmful to take too much, but I continue to take the silicon. I use Bio-Sil, which has collagen as well as silicon in it. This, of course, repairs the skin, tendons, cartilage, nails, and hair....so I intend to take to take it FOREVER! An herbalist at the local healthfood store recommended the Bio-Sil, saying that a number of customers with celiac had found that it helped their tendons.

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I am not a gluten sufferer at all. I am gluten free for my daughter who tested positive to intolerance. My kitchen is as gluten-free as I can get it to be for her. She is also hypothyroid and has Hashimotos. She had half of her thyroid removed. I have had a multi nodular goiter since 2005. Hair loss for us was unreal. I was worried we would both go bald.

Now we are on iodine. Our extreme "shedding" and hair loss issues have stopped. I sometime do massages on my scalp with oils. We both do highlighting with no reactions and hair is shiny. Not as thick as it was, but we aren't losing it as bad as before the iodine.

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