34 replies to this topic

[SandyShoes]

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

[LRgirl]

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

[gf4life]

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

[Carriefaith]

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.

[Rachel--24]

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

[Janelson]

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!

[Rachel--24]

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.

[GFManiac]

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.

[SandyShoes]

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

[Claire]

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

[ravenwoodglass]

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.

[Janelson]

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.

[ravenwoodglass]

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.

[kallie]

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

[clarkje20]

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......