Hair loss

[MiriamW]

Hello everyone, 

I'm so pleased that I have come across this forum, what a fantastic place full of insightful information. I was wondering if anyone can advise regarding hair loss please? I am a coeliac and have been on a strict gluten-free diet for the past 8 years. I started loosing hair after going on gluten free diet however, I have periods when I loose hair and then it stops for a few weeks, always on and off. It feels like something is triggering it but I can't put my finger on it. I don't eat oats, I have to avoid anything acidic, I don't tolerate any starch or anything bitter. Dairy don't seem to trouble me but I might be mistaken. Hence I was wondering if anyone on here has had a similar experience that they could share? I tried to search for hair loss topic on this website but couldn't find any information. Many thanks. 

[trents]

Welcome to the forum, Miriam!

Have your thyroid hormone levels been checked?

[MiriamW]

Thank you for your prompt reply! My GP only did the basic TSH test which was OK as 0.47 (within the recommended range of 0.35 - 4.94). My iron, B12 and vit D levels were all ok. My white blood cells were low (3.7) and bilirubin high (39). I don't take any medication, don't smoke and don't drink at all. 

[Wheatwacked]

3 hours ago, MiriamW said:

TSH test which was OK as 0.47 (within the recommended range of 0.35 - 4.94).

First I'll mention that your high bilirubin could be a deficiency of Choline, B12, folate and or B6.  High Homocystene levels, which are not a part of regular CBC and lipid tests are and indicator of those deficiencies.

Your TSH is at the low end.

My hair is filling in. I looked into this when I started gluten free Thanksgiving 2014 because I noticed an increase in male pattern baldness. I also have familial hyperlipodemia. The research into these intersected at deficiencies of iodine, DHEA, cortisol (adrenal insufficiency). I've been on prednisone or prednisolone since 2012.  There is a connection between hair loss and estrogen and testosterone (even in females).  There is a direct correlation between DHEA and age such that a 70 year old produces only 10% of the DHEA of a 20 year old.

I eat a sheet of nori every day for iodine and take 100 mg DHEA, along with other vitamins since then, along with GFD.  Check out this chart: Testosterone Metabolism Flowchart. I had also found a chart that indicated that that balance between estrogen and testosterone affected head hair loss. In males the prostate was involved but I suspect in females its the endometrium.

Quote

An iodine deficiency may prevent hair follicles from regenerating. Fortunately, getting sufficient iodine can help correct hair loss that occurs due to an iodine deficiency. One study in 700 people found that 30% of those with low thyroid hormone levels experienced hair loss...  If you experience hair loss because of an iodine deficiency, getting enough of this mineral may help correct your thyroid hormone levels and stop hair loss.  10 Signs and Symptoms of Iodine Deficiency

 

[MiriamW]

Thank you Wheatwacked for your detailed reply, it is much appreciated. The most frustrating thing is that my GP is completely uncooperative and the tests that you have mentioned, they would never agree to do here in England. The information you sent is most helpful and I will look into it. I'm 48 so hormones could be playing a major role in my situation but equally it could be down to iodine deficiency, I haven't thought of it. It's hard to know without getting properly tested. Thank you again for being so helpful! 

[itarachiu]

I do experience typical male type baldness in the corners of my head like 1 finger(1-2 cm), I'm almost 33 and it did started when I was in highschool 16 years ago when I noticed. On that time I did start to experience celiac disease symtomps but I got the diagnoniss too late which was about 5 years ago. The hair loss did progress very very slowly but it in the last years did get noticed more. I use the machine myself to cut my hair every 2 weeks, I keep my hair very low in the last 16-17 years and in the last 2-3 years even my friends noticed not just me and I blame the deficiencies. I don't believe that thing that it's just normal for male to get baldness at some point in life, not now at this age at least but here is the catch. For some reasons at the corners of my head where the hair is gone, only a few grow back after I got on the gluten free diet, I can count them, they are like 5 or 6 that grew back and I wish I could know what or how to make it grow again. The baldness gets more and more every year, slowly but is progressing. I see people walking on streets more younger than me that already have lost most of their hair, much worse than me and probably they don't have celiac disease which is weird.

Also I don't believe in products or expensive treatments or surgeries that will make your hair grow back or at the best they are temporary. I'm interested more in the root cause.

A solution(sort of) will be eventually to shave my head completely more often in the future if will progress more so it will not get noticed anymore.

[knitty kitty]

I thought this article would be of interest.  It discusses vitamin and mineral deficiencies that can impact hair growth.  

The Role of Vitamins and Minerals in Hair Loss: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6380979/

 

[MiriamW]

11 hours ago, knitty kitty said:

I thought this article would be of interest.  It discusses vitamin and mineral deficiencies that can impact hair growth.  

The Role of Vitamins and Minerals in Hair Loss: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6380979/

 

Thank you! Yes it is a great article. 

[cristiana]

Hi MiriamW

Just to say that I'm in the UK too and my experience has been quite similar to yours.  I've even had thyroid tests and was disappointed when the results came back that my thyroid was normal - imagine that!

Anyway, I've always had fine, wispy hair, but before I was diagnosed it went really thin.  I remember one day going to a restaurant that I'd been to six years previously and they had one of those scary mirror configurations in the ladies by the sinks that allows you to see what your hairstyle looks like from all angles.  The difference was very noticeable.  At that time I had not had my coeliac diagnosis but my iron was very low.  I would say it did thicken up a bit as my iron levels increased, but it wasn't the amazing before and after transformation I'd been hoping for.

So I went to see my wonderful private nutritionist thinking she'd have the answer but she said to me that she has noticed this is a common issue with a lot of her coeliac patients.  Oddly enough, I have two acquaitances who have sisters with coelaic disease and their sisters have the same issue, so perhaps that's right in some cases.

Like you I do notice it thickens up,  only to thin again.  My coeliac hairdresser (who has thick hair!) tells me she's noticed this. 

However,  I do think some things have helped me. It could just be coincidental but I also think my hair looks better since I've been taking a Boots supplement - Boots Beauty Vitamin Gummies.  Also, since my consultant has put me onto Fultium D supplements.   I now use a dry scalp treatment which seems to be helping to strengthen my hair and a decent thickening conditioner.   Annoyingly I can no longer supplement iron because my haemoglobin is high normal but if yours is on the lower side of normal you may find supplementing helpful.  There is quite a bit of anecdotal evidence on the internet that having decent iron levels helps, but if you do try this please only do this under medical supervision - as I am sure you are aware, too much iron can be dangerous.

Do come back to us if you find anything that helps - it's good to share!

Cristiana

 

 

 

[MiriamW]

2 hours ago, cristiana said:

Hi MiriamW

Just to say that I'm in the UK too and my experience has been quite similar to yours.  I've even had thyroid tests and was disappointed when the results came back that my thyroid was normal - imagine that!

Anyway, I've always had fine, wispy hair, but before I was diagnosed it went really thin.  I remember one day going to a restaurant that I'd been to six years previously and they had one of those scary mirror configurations in the ladies by the sinks that allows you to see what your hairstyle looks like from all angles.  The difference was very noticeable.  At that time I had not had my coeliac diagnosis but my iron was very low.  I would say it did thicken up a bit as my iron levels increased, but it wasn't the amazing before and after transformation I'd been hoping for.

So I went to see my wonderful private nutritionist thinking she'd have the answer but she said to me that she has noticed this is a common issue with a lot of her coeliac patients.  Oddly enough, I have two acquaitances who have sisters with coelaic disease and their sisters have the same issue, so perhaps that's right in some cases.

Like you I do notice it thickens up,  only to thin again.  My coeliac hairdresser (who has thick hair!) tells me she's noticed this. 

However,  I do think some things have helped me. It could just be coincidental but I also think my hair looks better since I've been taking a Boots supplement - Boots Beauty Vitamin Gummies.  Also, since my consultant has put me onto Fultium D supplements.   I now use a dry scalp treatment which seems to be helping to strengthen my hair and a decent thickening conditioner.   Annoyingly I can no longer supplement iron because my haemoglobin is high normal but if yours is on the lower side of normal you may find supplementing helpful.  There is quite a bit of anecdotal evidence on the internet that having decent iron levels helps, but if you do try this please only do this under medical supervision - as I am sure you are aware, too much iron can be dangerous.

Do come back to us if you find anything that helps - it's good to share!

Cristiana

 

 

 

Hi Cristiana, 

Thank you so much for your message. It is extremely upsetting and stressful to be loosing hair and if I come across any helpful remedy I will most definitely come back and share. But how disappointing that people with coeliac disease tend to experience this problem. Can I ask - did your GP do a full thyroid test or were you referred to an endocrinologist? Did you take prescribed iron tablets or just over the counter supplements? The Boots gummies sound really good and that's wonderful you find them helpful. Unfortunately, I would not tolerate them as they contain citric acid and other additives, that I am sensitive to. May I ask what is the dry scalp treatment and thickening conditioner that you use? I've started using Fulvic Acid shampoo by Victoria Health which sounds promising but I haven't noticed any change so far. I take Biocare vit-D drops and Nano Zinc and Magnesium supplements. Also Acidophilus probiotics. One thing I've noticed over the years since my diagnosis, that I've started to react to all sorts of additives which are typically found in gluten-free products like tapioca, potato starch, maize starch, baking powder, bicarbonate of soda, mixed flours etc. I have a feeling that nuts might be problematic too lately and I'm going to try going dairy free in case it makes any difference. How about you, do you eat dairy? Is there anything else that you avoid apart from gluten? Furthermore, Wheatwacked above made a comment about iodine deficiency and I wonder how we could test it. There is little iodine in our diet in the UK as our salt isn't iodised and I wonder whether that could be causing some problems too. 

Miriam

[LCAnacortes]

In 2016, I lost a LOT of hair following a bout of pneumonia. It fell out by the roots.  It really freaked me out and I didn't know why it was happening. It occurred 3 months after I had pneumonia so it seemed totally out of the blue. I learned that it is common for people to lose hair due to oxygen deprivation because the body sends the oxygen to more important organs. So, if you have bronchitis or pneumonia or Covid - you could lose hair. My thyroid came back normal - even though I felt terrible. I insisted on testing vitamin D and it was off the charts - low. My intestinal problems got steadily worse (my celiac could have been awakened by the pneumonia).  I found out about a family history of celiac in April 2022 but I have not been officially diagnosed. I have have been gluten free in May 2022 and stopped dairy in August. And now I supplement and that helps a lot - D3, Magnesium, B Complex, Thiamine and Niacin.  I used DoTerra essential oils to help it grow back initially because I lost so much.   

[cristiana]

Hello again,

I see you spell coeliac the same way I do so I am assuming that you are based in the UK?

If so, will have found out perhaps, in this country, GPS send us for a TSH test if there is any question of a thyroid problem.  However, I made a special request for a full panel thinking something was missed and offered one other test - it was only the one, and rather unhelpfully I can't remember what it was, sorry.  But it came back plumb normal.

Yet people on this forum have mentioned over the years one must request "a full thyroid panel" which seems to include a whole lot of other blood tests.   Anyway, it is what is here, I guess. 

Both my GP and my nutritionist (who is private, and very thorough) said that those two results that came back for these tests show absolutely that I don't have a thyroid issue.  I don't understand why there is this difference between the UK and US systems, but cut a long story short I was not sent to see an endochronologist.  I've often wondered whether something would have been found if I'd been tested in the States, but I guess I'll never know.

One thing I can say is my hair never looked so good than during my first pregnancy, so I guess there is a hormonal element at play here.  My gynaechologist said HRT could make a difference, but I've not gone down that route because of a family history of breast cancer.   That said, you've probably seen a lot in presss and on TV recently about HRT and people say that it does have it's potential drawbacks, but also plenty of advantages.  My sister is on it, not for her hair, which has always been good, but for other issues.  She is prepared to risk it, pointing out that it is supposed to protect against dementia, something else that we have in our family.  I don't know what you feel about HRT but it is perhaps something to think about.

But going back to the hair tonic - Philip Kingsley Flaky Itchy Scalp Toner.  So impressed.  I don't have dandruff but I suffer from what the docs think is eczema and it has been amazing.  I've tried other products but this worked within two uses.  I think my hair has also stopped falling out so much since using it.  The John Frieda Luxurious Volume Core Restore Conditioner is great.   

Cristiana

Edited January 2, 2023 by cristiana

[MiriamW]

15 hours ago, LCAnacortes said:

In 2016, I lost a LOT of hair following a bout of pneumonia. It fell out by the roots.  It really freaked me out and I didn't know why it was happening. It occurred 3 months after I had pneumonia so it seemed totally out of the blue. I learned that it is common for people to lose hair due to oxygen deprivation because the body sends the oxygen to more important organs. So, if you have bronchitis or pneumonia or Covid - you could lose hair. My thyroid came back normal - even though I felt terrible. I insisted on testing vitamin D and it was off the charts - low. My intestinal problems got steadily worse (my celiac could have been awakened by the pneumonia).  I found out about a family history of celiac in April 2022 but I have not been officially diagnosed. I have have been gluten free in May 2022 and stopped dairy in August. And now I supplement and that helps a lot - D3, Magnesium, B Complex, Thiamine and Niacin.  I used DoTerra essential oils to help it grow back initially because I lost so much.   

Thank you Ana. It's a good point and always helpful to remember that we might loose more hair following some illness, often not immediately but a few months later. That's great you are feeling much better now. Niacin and Thiamine are part of B-complex too and you are right about essential oils, especially rosemary is supposed to be very good. I sometimes mix it in my shampoo or conditioner.

[MiriamW]

Hi Cristiana,

Thank you for all the info. Yes I live in the UK (England, Surrey :)) and unfortunately it is practically unheard of to get a 'full thyroid panel' test in this country, unless you go and pay private of course. The same goes for testing hormonal levels in women during perimenopause/menopause, whereas in other countries it's standard practice. I've considered HRT but haven't had courage to take it without having a proper test done. I don't fancy trying it on myself in case they give me incorrect dose/match and I end up loosing even more hair. Furthermore, in our family all the women have had very thick healthy hair until very old age, plus I've managed to control all of my other hormonal issues with natural remedies, therefore I do not think that HRT would be the answer (but of course I can't be sure). I started loosing hair only after going gluten free, so I think it is more likely linked to my digestive issues. Who knows, maybe all the grains that we have had to stop eating are important for the health of our hair? I've had the Philip Kingsley green shampoo for flaky scalp but haven't tried the toner. Also thank you for the JF conditioner recommendation  Lets hope that 2023 will be a positive year full of healthy hair  

[cristiana]

Strange isn't it - my vitamin D levels have tumbled since adopting a gluten-free diet. 

Perhaps it is because I'm not outside as much as I was when the children were younger, or maybe it's because some foods I used to eat might have been fortified?

 

 

Edited January 2, 2023 by cristiana

[trents]

27 minutes ago, cristiana said:

Strange isn't it - my vitamin D levels have tumbled since adopting a gluten-free diet. 

Perhaps it is because I'm not outside as much as I was when the children were younger, or maybe it's because some foods I used to eat might have been fortified?

 

 

Are grains fortified with vitamin D in the UK? In the US, the only things they fortify with D are milk and dairy products I believe.

[MiriamW]

I believe some breakfast cereals can be fortified with vitamin D. 

[cristiana]

Yes, a lot of cereals are now.   I noticed when I was first diagnosed that some of the brands of bread and cereal I was buying had no additives at all, yet their glutenous counterparts contained them.

That said, the loaf of bread I have in the house just now does have added vitamins and minerals - perhaps it depends on the brand, or perhaps things have changed.  I haven't been paying much attention.

Anyway, here's an article you might be interested in @trents

https://www.bakeryandsnacks.com/Article/2018/03/27/kellogg-s-doubles-vitamin-d-content-in-its-cereals

[LCAnacortes]

For those of us living in the northern parts of our countries - Washington and Alaska in the USA and Canada and the UK, we don't get enough sunshine so it is really common to be low in vitamin D.  It is dark outside for a good part of the winter.  Around 4:15 pm or so where I live now.  I was still eating diary and gluten when my vitamin D was so low. I didn't know about celiac in the family yet so I suspect that I was low in D and several other vitamins due to bad absorption.  I supplement it now - especially now that I am diary and gluten free. 

 

[LCAnacortes]

I should also mention in a hair care thread - to be sure to check your hair products for wheat.  My conditioner had wheat in it and I had itchy lesions and bumps on my head.  I stopped using it and everything went away.  Wishing you the very best!

[MiriamW]

Thank you Ana, that's really helpful. I keep forgetting to check ingredients in my hair care products. Very best wishes to you too! 

 

 

[Rogol72]

20 hours ago, cristiana said:

Yes, a lot of cereals are now.   I noticed when I was first diagnosed that some of the brands of bread and cereal I was buying had no additives at all, yet their glutenous counterparts contained them.

That said, the loaf of bread I have in the house just now does have added vitamins and minerals - perhaps it depends on the brand, or perhaps things have changed.  I haven't been paying much attention.

Anyway, here's an article you might be interested in @trents

https://www.bakeryandsnacks.com/Article/2018/03/27/kellogg-s-doubles-vitamin-d-content-in-its-cereals

Getting a little off topic here but I'll share anyway. I don't eat gluten-free bread any more, but I attended a wake for a friend in the UK this time last year. A day trip from Cork to Heathrow and back. The staff at the pub/restaurant were incredible, it was a bufffet/finger food. I contacted management prior and made it known I was a sensitive Coeliac. They made fresh gluten-free sandwiches and handed them directly to me so as to avoid CC on the buffet table ... the best gluten-free sandwiches I've ever had and no negative reaction. I enquired about the bread they used, it was Warbuton's gluten-free bread. Fortified with calcium and iron, no B vitamins. The restaurant was the Fox and Hounds in Englfield Green for any UK Coeliacs looking for safe restaurants in that area ... https://www.thefoxandhoundsrestaurant.com/

The gluten-free cereals and some of the gluten-free breads are fortified here, but not to the same extent as regular bread and cereals. It must be down to the whims of each manufacturer.

[cristiana]

@Rogol72  This is very good to know!  I could get there in just over an hour.  Thank you for the post, much appreciated.

[Rogol72]

You're welcome @cristiana, really nice pub/restaurant. A good find so had to share.

[MiriamW]

Thank you @Rogol72that's great to know! Also good to know about Warbuton's bread recommendation, I'll give it a try as normally I don't tolerate gluten-free bread.