Severe Hair Loss in early 20’s

[RKRa]

I am 24 years old, I have been diagnosed with celiac quite recently, I have been gluten free for exactly one year this month. For the last ten years, from the age of 13/14 onwards due to anaemia, I have been experiencing hair loss, and in the last 2-3 years it has gotten worse. Although I have been gluten free for a year now, I would say my hair fall has only increased in the last 12 months…I would class it as edging towards severe, my hair is very very thin and sparse at this point. It’s worse on the crown and back of my head. My hair gets very oily, my scalp tends to get very sore. I can’t seem to get any relief for it at this point. This is my first time using a forum, I has anyone else been through something similar? 

[trents]

May we ask, are you male or female. An important fact when talking about hair loss.

I'm 70 now and I lost most of mine some years ago. Now I shave my head every other day so I'm bald and don't have to fuss with the little that is left. I was diagnosed with celiac disease twenty years ago but realize now I had it for many years before it was diagnosed. I am not aware of any research connecting hair loss with celiac disease but I would not doubt that there is a connection given the fact that celiac disease generally creates vitamin and mineral deficiencies. 

But I'm curious about one detail of your post and that is you have been gluten free for a year but were only diagnosed with celiac disease a month ago. How were you diagnosed? Generally, being off gluten for that long would invalidate any kind of testing for celiac disease.

Edited October 5, 2021 by trents

[RKRa]

I have been diagnosed since a year ☺️  I’ve been gluten free since September/October 2020. I was only ever tested for celiac in 2019 due to my years of hair loss, and I was told it would grew back after being gluten free between 6 - 12 months. With it only getting worse, I’m just not sure when it is supposed to start getting better 😹

[RKRa]

10 minutes ago, trents said:

May we ask, are you male or female. An important fact when talking about hair loss.

I am female

 

[trents]

7 minutes ago, RKRa said:

I am female

 

Have you had your thyroid hormone levels checked?

[RKRa]

According to my GP, my hormones are fine, I will definitely look into it, thank you!

[cristiana]

Hello RKRa

I'm female too.

My hair has never been thick, but around the time of my diagnosis, when I was anemic, I noticed it was considerably thinner.  If you google "iron and hair loss" you will see lots of contradicting evidence and studies online as to whether low iron can cause hair loss, but I would say in my case it did.  It did look better when my iron levels improved.  It took a while, mind.

This is anecdotal so I can't post anything to prove it but I asked my nutritionist who has seen hundreds of coeliacs in her time and she has said to me that quite a few of her female coeliac clients have thinner hair.  I wish I had now asked her why! My gastroenerologist seemed also to recognise it as a coeliac issue and told me iron would help  But he also recently prescribed some very high quality vitamin D supplements as I was feeling very tired and my levels were low, and a side benefit seems to be that my hair looks a bit thicker.

So I would advise having tests for iron and D deficiencies -  it might be helpful?   

Lastly, your sore scalp.  Is it itchy too?  I have developed an itchy scalp which has been put down to adult onset eczema.  Anyway, I have found Neutrogena T/Gel Therapeutic shampoo to be a life saver and my hair really seems to like it.  I would say it breaks less when I use it, too.  

Cristiana

Edited October 5, 2021 by cristiana

[trents]

20 minutes ago, RKRa said:

According to my GP, my hormones are fine, I will definitely look into it, thank you!

Thyroid disease (Hashimoto) resulting in low thyroid hormones is not uncommonly found in association with celiac disease. 

Are you taking any gluten free vitamin and mineral supplements?

Edited October 5, 2021 by trents

[rinaika]

I am certain my alopecia universalis is related to my celiac. As soon as I had my best no-gluten, no irritants streak (no caffeine, low fibre, no allergens) all my hair came back. I could tolerate more foods again. Then, I got glutened!! And it came out again, along with food intolerances. 

[cristiana]

8 hours ago, rinaika said:

I am certain my alopecia universalis is related to my celiac. As soon as I had my best no-gluten, no irritants streak (no caffeine, low fibre, no allergens) all my hair came back. I could tolerate more foods again. Then, I got glutened!! And it came out again, along with food intolerances. 

I have read others say that a glutening episode can cause hair loss, too.  Thank you for your post.