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Celiac And Alopesia


PosNrg

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PosNrg Newbie

I was diagnosed with Celiac 1 1/2 years ago. 9 months ago I started to develop alopesia areata. My dermotologist claims the stress my body went through has triggered the hair loss. I am still experiencing hair loss. Has anyone else experienced the same and could products i.e. shampoos, hair coloring etc that may contain wheat gluten be a factor?

PosNrg


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cookie22 Newbie
I was diagnosed with Celiac 1 1/2 years ago. 9 months ago I started to develop alopesia areata. My dermotologist claims the stress my body went through has triggered the hair loss. I am still experiencing hair loss. Has anyone else experienced the same and could products i.e. shampoos, hair coloring etc that may contain wheat gluten be a factor?

PosNrg

have you been tested for lupus?

Fiddle-Faddle Community Regular

I'm also wondering if you were tested for other things. Did they run a thyroid panel?

And to what stress is your dermatologist referring? Going gluten-free certainly doesn't stress the body...if anything, it's the opposite!

How is your health otherwise?

You didn't by any chance recently wean a baby from nursing, did you? My hair literally came out in clumps after each baby weaned, and I was told that that is normal.

I do know that EVERY time I have had my hair colored or permed in the last 20 years, it has fallen out. Not enough to be given a diagnosis of alopecia by any means, but I'd say the last time (2 1/2 years ago) I lost about half my hair.

I'm not sure I'll ever try chemicals on my hair again. And I was pleasantly surprised when I finally (after 2 1/2 years) grew out the last of the old color (which was supposed to be dark brown, but like all hair colors on me, it turned brassy auburn after a month), I LIKE the natural color BETTER! Really! Even with all the white hairs. I'm pretending they're highlights. :D Seriously, it is so much shinier, and such a nicer color, yes, even with the white hairs!

I remember being in Russia 18 or 19 years ago, and all the women there dyed their hair--everyone was either bright orange or dark RED, and it looked so horrendously fake! It was gruesome.

Have you noticed, in the last decade or so, it is now considered perfectly normal to appear in public with major dark roots? But even so, it is so nice now not having to worry about roots (not to mention the $ involved)!

Anyway, I'm sure the hair thing must be very stressful, so I hope you are able to find some answers!

cookie22 Newbie
I'm also wondering if you were tested for other things. Did they run a thyroid panel?

And to what stress is your dermatologist referring? Going gluten-free certainly doesn't stress the body...if anything, it's the opposite!

How is your health otherwise?

You didn't by any chance recently wean a baby from nursing, did you? My hair literally came out in clumps after each baby weaned, and I was told that that is normal.

I do know that EVERY time I have had my hair colored or permed in the last 20 years, it has fallen out. Not enough to be given a diagnosis of alopecia by any means, but I'd say the last time (2 1/2 years ago) I lost about half my hair.

I'm not sure I'll ever try chemicals on my hair again. And I was pleasantly surprised when I finally (after 2 1/2 years) grew out the last of the old color (which was supposed to be dark brown, but like all hair colors on me, it turned brassy auburn after a month), I LIKE the natural color BETTER! Really! Even with all the white hairs. I'm pretending they're highlights. :D Seriously, it is so much shinier, and such a nicer color, yes, even with the white hairs!

I remember being in Russia 18 or 19 years ago, and all the women there dyed their hair--everyone was either bright orange or dark RED, and it looked so horrendously fake! It was gruesome.

Have you noticed, in the last decade or so, it is now considered perfectly normal to appear in public with major dark roots? But even so, it is so nice now not having to worry about roots (not to mention the $ involved)!

Anyway, I'm sure the hair thing must be very stressful, so I hope you are able to find some answers!

really, before you blame it on celiac, i would be tested for everything else. Have you been? Even doctors like to blame everything on the first suspect. I read in a book that doctors are taught when they hear hoofbeats not to look for zebras, meaning, assume it's the first/easy thing that comes to mind. It is not a very common side effect of just plain celiac. (my sister has horrible wheat allergies, not celiac, but completly unrelated to that was diagnosed with lupus (she too was loosing her hair). Especially, you said you were diagnosed for 1.5 years, this started 9 months ago? it's really likely not related to celiac. Keep us posted.Good luck.

Guest Doll

There is an autoimmune form of alopecia. People with Celiac Disease often develop more than one autoimmune disease. They tend to travel in packs. :) Usually the hair does not grow back in autoimmune alopecia cases, but there are exceptions. I would make sure you are taking in enough calories, proteins, good fats. Many people with Celiac are malnourished, even on the gluten-free diet. If you are malnourished, you will lose hair.

I agree with all of the above posts. You should ask your doctor to run a thyroid pannel, check other hormone levels, and check for other autoimmune diseases such as Lupus.

*Hopefully*, your hair loss is simply due to being malnourished.

mftnchn Explorer

I had a major hair loss episode in 2005, lost hair for months and had to wear a wig for several months it was so bad. It is possible it was celiac related, but my celiac symptoms have not been striking, chronic not acute, and the big C not D. Dermatologist said it was definitely health related.

What we have finally determined by best guess is that it was hormone related, drop in estrogen levels. My hair has grown back quite nicely, is now naturally curly. I was using Nioxin which really helped but all their products have wheat so I have stopped.

My hair is now falling out again, not heavily as yet.

ravenwoodglass Mentor

For me my alopecia was directly related to celiac. I did have to eliminate gluten from my shampoos and toiletries as well as food before it grew back. Unfortunately there is an autoimmune aspect to it and to my gluten reactions that mean that when I get glutened about 3 to 4 days later I will start to lose hair again. This lasts about 2 or 3 weeks then it will stop and grow back. Even then though it doesn't get as thin as before diagnosis, you could see my scalp. I get diffuse shedding with a couple small bald spots that are easily hidden as I keep my hair long. My DH gets alopecia areata with large round patches of missing hair, being a man with short hair it is really obvious, his cleared up also after a couple months gluten-free. I should also note that he also has some male pattern baldness and that of course has remained the same since diagnosis but at least the big circles grew back.

That said you should also be sure to check and make sure there is not another condition causing the hair loss but I hope luck is with you and it does turn out to be in your case, like mine, solely related to the effects of celiac.

Oh and one last note, be very careful if you decide to try any of the Rogaine or that type of product most are loaded with gluten. I have never used them but saw the info on the NIH site that lists gluten sources in non-food products.


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Katydid Apprentice

Wow -the timing on this question is perfect. Just last week a friend of mine put the mother of a newly diagnosed 10 year old boy in touch with me to see if I could help her get started on his gluten free diet.

This little guy had no GI or any other celiac syptoms. As a matter of fact, the only thing that got him diagnosed was a bald spot on the top of his head. After tons of tests, including thyroid, that showed nothing, the doctor decided to do the celiac blood test in the event it was a malabsorption problem. Sure enough, he came back positive and went on to have a positive biopsy. I had never heard of such a thing, but the doctor claims that if he stays gluten free, his hair will return.

ravenwoodglass Mentor
Wow -the timing on this question is perfect. Just last week a friend of mine put the mother of a newly diagnosed 10 year old boy in touch with me to see if I could help her get started on his gluten free diet.

This little guy had no GI or any other celiac syptoms. As a matter of fact, the only thing that got him diagnosed was a bald spot on the top of his head. After tons of tests, including thyroid, that showed nothing, the doctor decided to do the celiac blood test in the event it was a malabsorption problem. Sure enough, he came back positive and went on to have a positive biopsy. I had never heard of such a thing, but the doctor claims that if he stays gluten free, his hair will return.

I just had to say what an amazing doctor! He is definately a keeper. I wish all were as knowledgeable as he is.

Di-gfree Apprentice

What a coincidence. I just got out of the shower, and was talking to a family member about my hair loss, and thought I would check to see if there were any topics on this. About a year ago, I went through the same thing

PosNrg Newbie
I was diagnosed with Celiac 1 1/2 years ago. 9 months ago I started to develop alopesia areata. My dermotologist claims the stress my body went through has triggered the hair loss. I am still experiencing hair loss. Has anyone else experienced the same and could products i.e. shampoos, hair coloring etc that may contain wheat gluten be a factor?

PosNrg

Reply to all:

Thank you for all responses. I am a healthy person no other complaints. I have had my thyroid tested but do not remember any testing for lupus nor reasons for - is alopesia reason enough.? I practice yoga 3 times a week and play competitive tennis. I have no compaints with celiac, I am not malnurished, but would like to resolve if I can the hair issue.

Having noticed my hair products contained gluten cued the question to me. I do not have a problem eating a gluten free diet, but I never thought to look at products I apply topically. I will have to reasearch lupus better, but it seems when I did I just didn't meet enough criteria.

PosNrg Newbie
Wow -the timing on this question is perfect. Just last week a friend of mine put the mother of a newly diagnosed 10 year old boy in touch with me to see if I could help her get started on his gluten free diet.

This little guy had no GI or any other celiac syptoms. As a matter of fact, the only thing that got him diagnosed was a bald spot on the top of his head. After tons of tests, including thyroid, that showed nothing, the doctor decided to do the celiac blood test in the event it was a malabsorption problem. Sure enough, he came back positive and went on to have a positive biopsy. I had never heard of such a thing, but the doctor claims that if he stays gluten free, his hair will return.

That is a smart Dr. It was actually my friend whose children all suffer to some degree with alopesia to acknowledge the possible connection to celiac. (apparently common in the alopesia world) On the alopesia website there are many forums accounting to the regrowth once a gluten free diet was introduced. My situation is the reverse celiac issues then alopesia.

PosNrg Newbie
For me my alopecia was directly related to celiac. I did have to eliminate gluten from my shampoos and toiletries as well as food before it grew back. Unfortunately there is an autoimmune aspect to it and to my gluten reactions that mean that when I get glutened about 3 to 4 days later I will start to lose hair again. This lasts about 2 or 3 weeks then it will stop and grow back. Even then though it doesn't get as thin as before diagnosis, you could see my scalp. I get diffuse shedding with a couple small bald spots that are easily hidden as I keep my hair long. My DH gets alopecia areata with large round patches of missing hair, being a man with short hair it is really obvious, his cleared up also after a couple months gluten-free. I should also note that he also has some male pattern baldness and that of course has remained the same since diagnosis but at least the big circles grew back.

That said you should also be sure to check and make sure there is not another condition causing the hair loss but I hope luck is with you and it does turn out to be in your case, like mine, solely related to the effects of celiac.

Oh and one last note, be very careful if you decide to try any of the Rogaine or that type of product most are loaded with gluten. I have never used them but saw the info on the NIH site that lists gluten sources in non-food products.

I am just now amazed at the products that contain gluten, and never considered this possibility as for the reason for continued hair loss. Thanks for the tip on hair treatments as well, I need to research the product I am using - I feel like an idiot because I never thought about this aspect of remaining gluten free!

Di-gfree Apprentice
PosNrg - I will have to reasearch lupus better, but it seems when I did I just didn't meet enough criteria.

I just wanted to clarify, in my post I mentioned I got tested for lupus. Hair loss was not the reason I got tested - it was because of other health issues.

Also, I only use gluten-free shampoo, and I'm experiencing hair loss once again - so personally, I can't say for sure whether gluten in shampoo is a contributing factor, or not.

  • 2 weeks later...
Katydid Apprentice
Wow -the timing on this question is perfect. Just last week a friend of mine put the mother of a newly diagnosed 10 year old boy in touch with me to see if I could help her get started on his gluten free diet.

This little guy had no GI or any other celiac syptoms. As a matter of fact, the only thing that got him diagnosed was a bald spot on the top of his head. After tons of tests, including thyroid, that showed nothing, the doctor decided to do the celiac blood test in the event it was a malabsorption problem. Sure enough, he came back positive and went on to have a positive biopsy. I had never heard of such a thing, but the doctor claims that if he stays gluten free, his hair will return.

Katydid here again...I just had to jump back in and share something about the little guy I mentioned above. His name is Dylan; and I had him and his parents over the other night for dinner to show them a quick and easy way to make very good gluten-free pizza, since that's one of his favorites. AND GUESS WHAT? His hair is already starting to grow back. Isn't that amazing? What a great doc to think of malabsorption for alopecia.

rbordt Newbie

Hi everyone,

I'm new to this and was excited to read others' experiences with celiac and alopecia. My 9 year old son has had alopecia areata since he was 2. A couple of years ago it turned to alopeica universalis (loss of all hair, including eyebrows, lashes, leg and arm hair). I accidently came across some case studies of alopecia sufferers benefiting from a gluten-free diet. We went gluten-free and after 3 weeks, his hair started to grow (just fuzzy stubs at this point, but the only growth we've seen since it all fell out). After doing a lot of reading, I decided to get him tested for celiac (through Enterolab) and he is gluten intolerant and has 2 copies of a celiac gene. His pediatric gastroenterologist won't accept the Enterolab results (and was quite arrogant about his mistrust), so we are now back on gluten before we can do a biopsy. The ped gas's reaction to Enterolab has led me to find someone else to do the biopsy and celiac diagnosis. I guess I wasn't sufficiently deferential when he dismissed all the reading and web research I had done (as well as Enterolab).

My son has a number of medical problems: minimal change nephrotic syndrome, asthma, mold allergy, and the alopecia. NONE of his many specialists have ever suggested the possibility of celiac.

We are anxious to get the biopsy so we can get back to our gluten-free existence. I'm hoping that once we address the celiac his other problems will disappear (or lessen). For the first time in ages, we have hope!

ravenwoodglass Mentor
Hi everyone,

I'm new to this and was excited to read others' experiences with celiac and alopecia. My 9 year old son has had alopecia areata since he was 2. A couple of years ago it turned to alopeica universalis (loss of all hair, including eyebrows, lashes, leg and arm hair). I accidently came across some case studies of alopecia sufferers benefiting from a gluten-free diet. We went gluten-free and after 3 weeks, his hair started to grow (just fuzzy stubs at this point, but the only growth we've seen since it all fell out). After doing a lot of reading, I decided to get him tested for celiac (through Enterolab) and he is gluten intolerant and has 2 copies of a celiac gene. His pediatric gastroenterologist won't accept the Enterolab results (and was quite arrogant about his mistrust), so we are now back on gluten before we can do a biopsy. The ped gas's reaction to Enterolab has led me to find someone else to do the biopsy and celiac diagnosis. I guess I wasn't sufficiently deferential when he dismissed all the reading and web research I had done (as well as Enterolab).

My son has a number of medical problems: minimal change nephrotic syndrome, asthma, mold allergy, and the alopecia. NONE of his many specialists have ever suggested the possibility of celiac.

We are anxious to get the biopsy so we can get back to our gluten-free existence. I'm hoping that once we address the celiac his other problems will disappear (or lessen). For the first time in ages, we have hope!

It sounds like he has been doing really well on the gluten free diet. Please be sure to research biopsies and the freqency of false negatives throughly and severe reactions to gluten challenge after being gluten-free for a bit. Are you going to put him on gluten if the biopsy is negative? If the answer is no and his gluten symptoms become severe I might rethink the need for a biopsy to 'prove' to the doctors what his body is already showing you.

  • 2 months later...
michelleL Apprentice

Just had to respond - I have celiac sprue and alopecia. The only thing that has halted the hair loss was a gluten-free and soy-free diet, although it takes a loooooong time before the hair starts growing back again - like 1 1/2 years. Being on a "gluten-free" diet is not enough, however. I had my hair grow back with a full head of hair, happy on top of the world (what a feeling to have the wind actually blow through your hair) and lose it all again because the food that I thought was gluten-free actually wasn't. Be very careful with your diet and make sure you are actually avoiding gluten. And if your hair products have gluten or other allergen, make sure you keep your mouth closed at all times while this product is anywhere near your body and until it's fully rinsed away. It's easier just to not buy these products, in the first place, however.

And I had everyting checked thoroughly, thyroid, etc. etc. etc. etc. The only thing that made a difference was the gluten-free diet.

loraleena Contributor

Hi, my son had alopecia areata 3 years ago. We found a wonderful product line called Kalosol. We corosponded with the man who invented it. He lives in England. He had alopecia himself as a child. Anyway there is a shampoo, essential oils rub and a lotion that you use daily. His hair started regrowing within a month. We used it a year later when he got a new spot and it regrew again right away. The website is Kalosol.com. Lots of success stories on there.

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