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Hair Falling Out

Janelson

By Janelson
in Coping with Celiac Disease

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Janelson Apprentice
Janelson
Posted

My one complaint about this disease that makes me so down that I cry when thinking about it is my hair. Over the past year and a half it has been falling out to the point where if it continues I wont have much of any soon. I hate it so much and it stops me from going out. I am 20 years old and I can not find the strength to go out because I hate what I see. I need advice on what I can do to make it grow back! I dont know what to do anymore but something needs to be done! I cant take this anymore!

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bluelotus Contributor
bluelotus
Posted

I am 23 and my hair started falling out when I was 20 (around the same time as my "bathroom" symptoms really began to take off). Unfortuneately, I don't have much advice, though I would say stay away from rogaine....its crap. I used the womens variety for about 2 years and I don't think it did anything (and, if you look closely, it says regrowth only lasts for either 48 weeks or 48 months, I have forgotten, but its not forever). I then switched to mens variety, on the advice of my dermatologist (I hadn't been diagnosed with celiac disease yet), and it doesn't seem to work either. Now, I am afraid to stop using it, thinking that doing so may increase my hair loss.

Okay, that said, you want to make sure you are taking vitamins. Biotin is supposed to help as well as zinc. Get your thyroid checked. I have hypothyroidism and with that along with any nutritional/hormonal problems from celiac disease, I am losing my hair. However, taking synthroid doesn't seem to help per se, but maybe the loss would be worse without it?? I haven't taken this step yet (hoping I won't have to once my celiac disease is under control), but there are hair replacements that use real human hair and stick to your head, unlike a wig. See Farrell hair systems. There may be others out there. Also, Yasmin birth control has a different hormone in it that is supposed to help ladies with hair loss, so you may want to consider taking this too.

Overall, it seems that, like my acne, my hair loss fluctuates with my diet. If I make mistakes, it seems to pick up, and with no mistakes for a while, my hair loss improves (though I don't know if it is actually growing back or just not falling out). How bad is yours? Mine is a diffuse thinning. Some have suffered from alopecia areata, a spotty sort of loss that results in quarter-sized bald spots and this is related to celiac disease as well - in this case, the immune system is directly attacking the hair and you can go on steroids for this.

I know, it sucks, sooo bad. I have cried over this during many nights now and have even contemplated suicide. My depression has mitigated somewhat with my improved diet. If you want talk more, feel free. You can also email me if you would like this to be more private (just click on my name). Good luck, girl. There are options and some hope out there, its just a matter of finding what works for you.

LRgirl Explorer
LRgirl
Posted

Hi Janelson,

I have been dealing with the same problem. It seems to happen everytime I cheat on my gluten-free diet. I go to a great dermatologist. I use a low grade steriod cream on my scalp two times a day. Despite this, I recently lost a great area of hair. She decided to inject the medicine directly into my scalp with a needle. Its not as bad as it seems. She used a very small needle. Within a month, I saw a significant growth in that area. I've had to wear a wig. That is very hard, I'm 26! I have been very depressed. I even started crying in the wig store in front of everyone. Not like me at all. Thank God my mom was there for support.

Good luck to you,

Traci

bluelotus Contributor
bluelotus
Posted

LRgirl,

is your hair loss spotty? is that why your derm. was able to inject in one spot and why you use a steroid cream?? just wondering..... when I first went to a derm at age of 21 for hair loss (yes, waited almost a year before seeing someone), she put me on every imaginable medicine - rogaine, steroid, vitamins, etc. the steroid shampoo made me so dizzy, I would fall over, so I had to stop using it. my hair loss seems more diffuse anyway and I always got the impression that steroids are for spottier types.....

Good luck to you.

LRgirl Explorer
LRgirl
Posted

Yes, the hair loss has been spotty. I tend to loose it in certain areas such as an area in the back, strange strips of hair loss on the sides, areas at my temples are always weak. I also experience pain, and she has told me to use a topical antibiotic. The same one I have used for acne. Surprisingly, it works. I went to a previous dermatologist that tried to put me on rogaine. I wouldn't do it and I left him. Are you still going to this dermatologist?

Traci

bluelotus Contributor
bluelotus
Posted

No, I have moved several times since then and figured she (the derm) was full of it anyway. I will be seeing a regular physican this week and hope to get recommendations for a dermatologist, allergist, etc. I realized that by her trying to put me on everything available, she really didn't know what the h#ll was going on and likely wasn't going to find out.

You know, you can always get a scalp biopsy too - though not sure what this is able to show (curable loss vs not curable???). I got this done by the same derm. and the results were inconclusive (what a suprise).

Eliza13 Contributor
Eliza13
Posted

I've had lots of hair fall out too. I still have alot of hair, but it is about 1/2 of what it used to be. SIGH. Even my friend remarked that my hair looks dull and lifeless. Although I am a yo-yoer on the diet, I have noticed that my hair stops falling out when I am gluten-free.

Hope this helps.

Oh---and BTW....excercise and sleep also help with the hair loss.

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Claire Collaborator
Claire
Posted
My one complaint about this disease that makes me so down that I cry when thinking about it is my hair. Over the past year and a half it has been falling out to the point where if it continues I wont have much of any soon. I hate it so much and it stops me from going out. I am 20 years old and I can not find the strength to go out because I hate what I see. I need advice on what I can do to make it grow back! I dont know what to do anymore but something needs to be done! I cant take this anymore!

<{POST_SNAPBACK}>

There are some really sharp wigs out there. It is an answer for the short term - while you work on your health - and your hair. There is a product line by Nioxin that is recommended by physicians and hair salons for patients who have had chemotherapy. I too have lost a lot of hair. I had tons to start with so it is more noticeable to me than anyone else. I do not think I have regained any hair but this product cut the hair loss back to what is normal for everyone. I suggest you get the Cleanser and the Scalp Therapy. These products are not cheap so shop

on line for the best buy. You are suppposed to use it daily. I have only used it every other day. I would think you should try for daily given how serious your problem is. Hope this info is of some help to you. Claire

Rachel--24 Collaborator
Rachel--24
Posted

I lost tons of hair and then it grew back...then I lost it again. Its been off and on for me before diagnosis. Since I started the diet I seem to be losing it again. :angry: Its general hairloss so noone really notices but me. Luckily I had alot to start with.

elisabet Contributor
elisabet
Posted
My one complaint about this disease that makes me so down that I cry when thinking about it is my hair. Over the past year and a half it has been falling out to the point where if it continues I wont have much of any soon. I hate it so much and it stops me from going out. I am 20 years old and I can not find the strength to go out because I hate what I see. I need advice on what I can do to make it grow back! I dont know what to do anymore but something needs to be done! I cant take this anymore!

<{POST_SNAPBACK}>

My son has lost a lot of hair,gluten-free diet helped a little bit,but when we eliminated diary and soy,his hair is coming back strong .he had both patchy hair loss and general thining.I cried many nights ,I know what you are going through.Do you have dairy and soy in your diet?

if so eliminate them for 2 months and see if there is any improvement,we saw his hair loss became less after 6 weeks and there is a lot regrowth since then.

hope it helps. elisabet

Janelson Apprentice
Janelson
Posted
  • Author
My son has lost a lot of hair,gluten-free diet helped a little bit,but when we eliminated diary and soy,his hair is coming back strong .he had both patchy hair loss and general thining.I cried many nights ,I know what you are going through.Do you have dairy and soy in your diet?

if so eliminate them for 2 months and see if there is any improvement,we saw his hair loss became less after 6 weeks and there is a lot regrowth since then.

hope it helps.    elisabet

<{POST_SNAPBACK}>

I do have dairy and soy in my diet but not much at all. I was a vegetarian for 2 years but stoped that about 5 months ago when I found out I had Celiac. From these posts I am starting to see there is no hope. Thanks for the info though guys have a good day.

bluelotus Contributor
bluelotus
Posted

Two things - 1) stay away from Nioxin. It has wheat in it and it is expensive. I used it for a while, didn't notice any regrowth or lessened loss (had used it for a year+) and got headaches from the wheat. I am no doctor, so if it is something you are interested in, by all means, but I'd just be careful.

2) I haven't heard of soy or dairy causing hair problems, though I am not suprised. Does anyone know why? Maybe b/c these are common allergens? I might have to try that, but I already have so little that I eat (no dairy, eggs, corn, gluten).....no soy!!!??? That will be hard. How old was your son, if you don't mind me asking?

LRgirl Explorer
LRgirl
Posted
No, I have moved several times since then and figured she (the derm) was full of it anyway.  I will be seeing a regular physican this week and hope to get recommendations for a dermatologist, allergist, etc.  I realized that by her trying to put me on everything available, she really didn't know what the h#ll was going on and likely wasn't going to find out. 

You know, you can always get a scalp biopsy too  - though not sure what this is able to show (curable loss vs not curable???).  I got this done by the same derm. and the results were inconclusive (what a suprise).

<{POST_SNAPBACK}>

I acually did get a scalp biopsy and the result was inconclusive as well. It was done by my old dermatologist. I'll probably get another one now that I have a decent doctor.

Thanks,

Traci

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