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Hairloss After gluten-free And Iron Supplementation?
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Hello

Just wondered if anyone would know why my hair is falling out so badly...

It has thinned considerably in last 2 years, obviously as I have since found out that I had a ferritin level of 2.4. I have been gluten-free (inc shampoo) for 10 weeks and on iron supplements too, but the hairloss is really increasing and I'm now frightened to wash my hair. My once crowning glory is virtually a 'comb over' trying to disguise the gaps and scalp. Why would I suddenly start losing even more hair now that my body is getting the iron?? Hormones tested ok, also thyroid/thyroid antibodies ok too. I have also been taking biotin (thought that's supposed to help?)

I almost burst into tears today when I saw it all just fall to the floor... Anyone know what else it could be???

Thanks guys

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Hello

Just wondered if anyone would know why my hair is falling out so badly...

It has thinned considerably in last 2 years, obviously as I have since found out that I had a ferritin level of 2.4. I have been gluten-free (inc shampoo) for 10 weeks and on iron supplements too, but the hairloss is really increasing and I'm now frightened to wash my hair. My once crowning glory is virtually a 'comb over' trying to disguise the gaps and scalp. Why would I suddenly start losing even more hair now that my body is getting the iron?? Hormones tested ok, also thyroid/thyroid antibodies ok too. I have also been taking biotin (thought that's supposed to help?)

I almost burst into tears today when I saw it all just fall to the floor... Anyone know what else it could be???

Thanks guys

When my hair was falling out I also increased my vitamin D intake to 4000 ius. That helped. There is current research showing that vitamin d affects the receptors in the hair follicle. Also, on the off chance you don't know, I'll also mention that calcium inhibits iron absorption and the two should be injested a couple of hours apart. I take my iron pill first thing when i wake up and then eat/other vitamins a couple of hours later.

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Thanks for that. I'm actually awaiting vit d blood results do that will be interesting. Also I have also stopped dairy which might lower my vit d levels.... Interesting... There's so much to learn, just hope I don't go completely bald before I sort it out... It's quite distressing to loose your hair, I'd never even given it a thought before.

I wonder, did your hair loss stop with increased vit d? Were you also anaemic? Sorry for questions!

Thank you again for your help

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I understand about the terrible devestation you feel when you comb your hair and there's just chunks of it sitting in the brush or you pull your hand through your hair and strands of it come away in your fingers. It's horrible. It got to the point where I wouldn't even comb my hair cause I dreaded what I would see.

I have low iron, low calcium which apparently is status quo for those with problems with gluten/malabsoption. I take supplements for both but at separate times as mentioned before. The increase in Vitamin D is what helped me. Some people also try zinc. But again, I believe calcium affects the rate of zinc absorption so you have to be very careful and research what you are doing.

No worries about the questions. :) Ask and/or share away!

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Thank you! I will defo try the vit d!

Really appreciate your help, you described me also, I dread even touching my hair as it is falling away, everyday, tons of it :( utterly devastating

Have you been gluten-free for long, how long before you saw results taking vit d? I know it's obviously not a quick thing... Also, what's your hair like now? Is it back to what it should be like or just 'better'? I long to have my thick hair back!

Thank you again a million times!

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I finished my gluten challenge at the end of December last year and aside from a few accidental glutenings, I've been on the straight and narrow. Within weeks of upping my vitamin D, my hair stopped the massive migration down the drain. I have very long hair, down to my bum, and while it has thinned out I have new growth from the top of my head. It will take forever to grow out but I'm just glad I'm not losing it anymore.

Just as you will be when you get the iron, calcium, zinc and vitamin D nutrients/levels figured it out. It will all work out and you'll actually look in the mirror and enjoy your hair rather than cringing. :lol:

When do you get your testing back for vitamin D?

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(hugs) I understand your frustration. I was getting some good regrowth on the gluten-free diet and then it started falling out at an unprecedented rate. I too have a comb over and a few bald spots... it's hard to handle.

Unfortunately, I am almost sure that my hair loss was related to starting thyroid treatment or a rhuematic AI disease. I hope it's my body reacting to changing hormones but I suspect it's another AI.

If you are following the gluten-free diet, I wouldn't think hairloss would increase unless some gluten slipped in. It's possible that following the gluten-free diet gave your body a chance to breathe so another problem showed itself.... Are you having any other symptom increases other than the hair loss?

I wish you the best... I know it's awfully frustrating when you are doing everything right and wrong things still happen. :(

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@kamma

I hope you are right, am trying my hardest not to stress as I know it doesn't help.

Funnily enough my bloods came back for vit d yesterday eve! I am very deficient!

I have a level of 40 (normal range 75-110)

So... Vit d here I come... Perhaps it may sort some of the aches and pains I have been experiencing along with this horrid horrid hairloss. I really appreciate all your support, thank you :)

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@nvsmom

Hugs to you too.

What happened to your thyroid? Is that since being gluten free?

I am pretty sure I haven't ingested any gluten as I have no other gi symptoms... Unless of course it's possible that it would affect my hair?

I have some really odd symptoms since being gluten free from odd moving pains, joint aches, pinching gland pain to funny moving lump in my throat, night sweats and sharp pains in my upper abdomen (just to mention a few!)...

Though each symptom has only been lasting 7-10 days and then resolving on it own. I have been gluten-free for about 10 weeks. My hair has been thinning over the last 2 years, slowly but surely... But I hoped that being gluten-free may stop the shedding.

However, my ferritin dropped to 2.4. Pretty pathetic. Have been on iron for a while and feel much better for it but the hairloss has increased? I would've thought that it may have slowed. But.. It seems vit d plays an important part too... And I'm deficient... So fingers crossed.

What are your vitamin stats like?

I feel for you, for us, it's so sad to come your hair just to disguise and hide the scalp. I don't know how old you are but I wasn't expecting this at the age of 39!

Big hugs

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Oops should have said 'comb' not come! I'll blame it on the brain fog! ;)

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@kamma

I hope you are right, am trying my hardest not to stress as I know it doesn't help.

Funnily enough my bloods came back for vit d yesterday eve! I am very deficient!

I have a level of 40 (normal range 75-110)

So... Vit d here I come... Perhaps it may sort some of the aches and pains I have been experiencing along with this horrid horrid hairloss. I really appreciate all your support, thank you :)

Oooo that is low! Bring on the Vitamin D! The research that is coming out nowadays is there are huge deficiencies in the populations levels as more people are staying inside and not getting replenished by the sun. What dosage has been recommended to you?

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Also Vit C helps iron absorption, I take them together.

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@nvsmom

Hugs to you too.

What happened to your thyroid? Is that since being gluten free?

I am pretty sure I haven't ingested any gluten as I have no other gi symptoms... Unless of course it's possible that it would affect my hair?

I have some really odd symptoms since being gluten free from odd moving pains, joint aches, pinching gland pain to funny moving lump in my throat, night sweats and sharp pains in my upper abdomen (just to mention a few!)...

Though each symptom has only been lasting 7-10 days and then resolving on it own. I have been gluten-free for about 10 weeks. My hair has been thinning over the last 2 years, slowly but surely... But I hoped that being gluten-free may stop the shedding.

However, my ferritin dropped to 2.4. Pretty pathetic. Have been on iron for a while and feel much better for it but the hairloss has increased? I would've thought that it may have slowed. But.. It seems vit d plays an important part too... And I'm deficient... So fingers crossed.

What are your vitamin stats like?

I feel for you, for us, it's so sad to come your hair just to disguise and hide the scalp. I don't know how old you are but I wasn't expecting this at the age of 39!

Big hugs

I found out I had Hashimoto's when I requested a TSH test, along with nutrient levels tests, when I found out I was a celiac. I've suspected that I was hypothyroid for about 15 years but my doctors always told me that I was normal, or just a bit high, and not to worry about it... I've since learned not to be so trusting and request the lab results because I found out that I was hypothyroid but they did no further testing.

Your symptoms do sound quite a lot like a thyroid problem. I too have a lot of joint pains. It will hurt in a spot (bothe sides of the body for a few months, stiffen up and then fade, and then a few months later it hits again somewhere else... or the same spots. Night sweats are often a hyperthyroid symptom (if your thyroid is distressed it can over or underwork) and the painful lump in the throat (if it's near the base of your neck) could be a thyroid problem.... Or it could be something else entirely. So many of the Ai diseases overlap, and we all bring our personal experiences into our responses... that's why I often suspect thyroid issues. That and because it's the most common AI disease out there.

My vitamin levels are excellent for a normal person, nevermind a celiac... I have absolutely no idea why that is. LOL I was near the low end of the normal range for vitamin D many months back when diagnosed but I quadrupled my D intake and switched to sublingual tablets (for better absorption) as well as extra cod liver oil, evening promrose oil, and salmon oil...so hopefully it went up. Everything else was average. My cholestrol was stellar, and I exceeded the normal range for B12. My doctor refused to test ferritin because he said we'd see anemic problems in my RBC count, which was pretty close to average. I doubt my hairloss is a vitamin thing because it happened at a higher rate when many other symptoms increased and I felt flu-like. It was an autoimmune attack of some sort possibly caused by my shifting thyroid hormone levels (because I started treatment) or another issue.

And I'm younger than you, I'm 38. LOL

You might want to try the sublingual D tablets and add fish oils to your diet. They help. I won't get it from the sun since I'm up by the Rockies in Canada and we only get about 8 hours of daylight now... and it's -15C so there's not much skin in the sun. LOL ;)

Best wishes to you.

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I have some of your same symptoms...night sweats, hair loss, low Vit D, low iron. I also sweat easily just walking around the rooms I'm in at work or home and I have some aches and pains that come and go, in my back, neck, knees, ankles shoulders. I went to a Natropath and had an blood test done - found out I had a lot of other food intolerances besides dairy and gluten. She also wanted some additional blood tests done and those showed some odd thyroid numbers in addition to a couple of other too high interesting things.

I started googling everything on my blood test that was abnormal and starting reading and reading, putting it down for a while and reading again. After I felt let down by my regular general practice doctor, I got lucky and found the doctor I am now going to. He lists his specialities as endocrinology, diabetes, and metabolism. I think after many doctors I may have found a good one. On my last blood test, at the bottom, it said more tests are needed but pseudo-cushing's is suspected. i've read that Cushing's Syndrome is also another disease that Celiacs can get. I've been changing my diet hoping the next test will show some good change. (it's in two weeks.)

I'm at the point where right now (well I've felt this for a while), if I don't start eating only organic, raw, vegan, fruits, seeds, nuts, mostly leafy greens in a (e-bay cheap) Vitamix blender, in addition to cultured or sometimes eating lightly steamed or baked, veggies, with no-sugar, no-grains, and some additional supplements like sublingual B12... if I don't change my eating, I will in essence, be torturing myself into a shorter lifespan.

Luckily I know a woman who cured her ovarian cancer by eating raw healthy fruits, veggies, plus supplements. I also saw a movie called "May I be Frank" about a guy who was cured of his hepatitis (don't know which kind) by eating raw fruits, veggies, seeds and nuts. She has a web site where she lists the 100 things she did to get healthy. I totally applaud her for changing her diet so drastically in 2 weeks, and keeping herself healthy. Glad she lives near me and I met her, and took some classes on culturing and dehydrated food. She has a website with lots of links, she makes nothing off any of her advice, Jane Van Benthusen.

Good luck on your quest to get better and feel healthy...I'm right there with you.

Karen

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Wow nvsmom, your bloods are great then really! Good for you! I wonder then if being hypo is directly related to celiac or whether if you feel you had it anyway for 15 years perhaps it's a coincidence? I would love to know how long I've been celiac. My doc reckons I must have been for a very long time as my ferritin is so low. Hmmm.

I've actually been free of any symptom for 3 days now is a first for me (not even taking vit d yet!) but isn't it great when you feel normal for a bit?

As for the sunshine, I dont know how bad it is there in Canada, but it surely isn't any better here in the UK!! Grey grey grey, and more grey! We only have 6-7 hours daylight (if you can call it that!) at the most. Very grim! No wonder we are all deficient, let's all move to Spain and live the good life!

Thanks for all you help, really lovely to such support, cheers :)

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@motorchicked

Hi Karen

Thanks for your story, it's helpful to see others with similar problems... Cushings syndrome... I thought that was more something someone got after having steroids for a long time (I 'm asthmatic)... Do you have the bloated face symptoms too? I guess pseudo cushings is just the symptoms?? I will look it up.

I think diet plays such an enormous part of everything... I've always known this but I have neglected my health since the birth of my boy 6 years ago. Lone parent, no money (gave up my profession to raise my child), lots of stress... Massive stress actually, and for a long while money went on bills and good food for my son. Thankfully now things are much better but hey, damage done.

I have been vegetarian, virtually vegan (only ate bit cheese sometimes), for 25 years. But you have to eat properly (not like me recently)... So I think I entered celiac phase already malnutritioned. I don't know how long I've been celiac, probably a long time. 6-10 years? Diagnosed 10 weeks ago (only by bloods), gluten-free 10 weeks. I've completely cut the dairy out, because of ongoing problems (nightsweats, aches pains, joints, hairloss etc) and because I too definitely believe in the raw diet! I went raw for 3 weeks before being diagnosed with celiac (I felt fantastic, didn't know why, obviously no gluten!) but when I resumed a normal diet again things really kicked off with the gi symptoms! I have a juicer too, I was juicing every morning until my eye swelled in hives after drinking lots of juice (possibly the celery?) but it put me off as I just can't cope with anything at the moment... I will get back to it and try without the celery. I eat seeds, rice & dried fruit for breakfast, I have rice milk too. I also eat lots of veggies, avocados, quinoa, bit of fruit and I have included eggs into my diet. I didn't really want to but I must admit that I am enjoying them considering my diet so restricted. So I've cut out dairy, caffeine, sugar (I have one square of high quality choc per week!).

My stomach pain has gone mostly, I only get the occasional mild twinge, the last ache/joint pain I had was about a week ago and was very mild... I cut all these things out 3 weeks ago, and I think it probably took 10days to feel a real difference.

I just wonder if this means I have leaky gut? Not even sure what the symptoms are...

Love to know how you get on with you blood work after following the diet. There are so many people eating raw now, I must admit I struggled a bit as my son has nut allergy (and lentils and peas, some fruits etc) so it was very hard to get any protein in the house!

I aim to eat 70% raw if I can... Better than nothing? Thank for your support, what country are you in?

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Wow nvsmom, your bloods are great then really! Good for you! I wonder then if being hypo is directly related to celiac or whether if you feel you had it anyway for 15 years perhaps it's a coincidence? I would love to know how long I've been celiac. My doc reckons I must have been for a very long time as my ferritin is so low. Hmmm.

I've actually been free of any symptom for 3 days now is a first for me (not even taking vit d yet!) but isn't it great when you feel normal for a bit?

As for the sunshine, I dont know how bad it is there in Canada, but it surely isn't any better here in the UK!! Grey grey grey, and more grey! We only have 6-7 hours daylight (if you can call it that!) at the most. Very grim! No wonder we are all deficient, let's all move to Spain and live the good life!

Thanks for all you help, really lovely to such support, cheers :)

I'm pretty sure that I've been a celiac my entire life; I know I've had symptoms since my early school days... I remember being doubled up on the couch with pain. Because I had no clue (and my doctor was clueless) I wasn't diagnosed until I was 38. I think it's possible that living as an untreated celiac caused the thyroid problems to show up, or at least appear earlier, as well as cause my ITP.

I'm sooo glad you are feeling better this weekend! I hope it continues for you and this was just a blip. :)

We not as far north as you but because we're away from the ocean we are a lot colder. It was -25C with the windchill today but with the wind comes clear bright skies so it makes the day more cheerful... There are some advantages to living in a semi-arid prairie! LOL ;)

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nvsmom..where are you located? I'm in Manitoba.

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Wow nvsmom, your bloods are great then really! Good for you! I wonder then if being hypo is directly related to celiac or whether if you feel you had it anyway for 15 years perhaps it's a coincidence? I would love to know how long I've been celiac. My doc reckons I must have been for a very long time as my ferritin is so low. Hmmm.

I've actually been free of any symptom for 3 days now is a first for me (not even taking vit d yet!) but isn't it great when you feel normal for a bit?

As for the sunshine, I dont know how bad it is there in Canada, but it surely isn't any better here in the UK!! Grey grey grey, and more grey! We only have 6-7 hours daylight (if you can call it that!) at the most. Very grim! No wonder we are all deficient, let's all move to Spain and live the good life!

Thanks for all you help, really lovely to such support, cheers :)

Haha. To Spain, Sunshine and Luxerious Hair!

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Oh yes, luxurious hair pleeeease! And a little holiday in Spain would be very nice... If only. Will have to make do here though and keep cheery with you guys instead ;)

Nvsmom omg, -25!! Respect! Glad you're having a bright day tho, makes a difference... Also can't believe you've been undiagnosed for so long, terrible pity that this happens.

Onwards and upwards, thanks lovely people, may our hair grow thick and strong. Would appreciate any updates if you ever have any :)

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nvsmom..where are you located? I'm in Manitoba.

Southern Alberta... so we don't get as cold as you but we're so close to the mountains that we get less than 3 months of frost free days a year. LOL We can Winnipeg "Winterpeg"... I can't imagine those cold Manitoba winters!

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Definitely, DesignerStubble! Keep us posted on how hair and vitamin D is going. :)

NVSmom... I'm from Alberta and BC originally. Winnipeg's winters are killing me. :)

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I had quite a bit of hairloss when I cut gluten, too. It got really bad to where I was considering wigs. My vitamin D level was 21, but after supplements and sunshine, the level went up but I wasn't having any increase in new growth. It was crazy because I wasn't losing like handfuls at a time. It was just a steady loss. Different things seemed to make the shed slow down for a little bit, but then it would pick up again and if I had any regrowth it was thin, weak hairs that I would lose fairly quickly.

Well, when I first cut gluten (14 months ago), I stopped my multiple vitamin, because I thought I was having a reaction to it. Then out of desperation, I started taking it again about 6-8 weeks ago. I've had a slight decrease in shedding, but within a few weeks I started seeing new, thick (!!!) regrowth. So, if you aren't taking a good multiple, I would urge you to try that. I take Alive! They are huge and sort of smell and taste like your lawn, but they are fabulous. Usually with celiac disease/gluten intolerance we have so many absorption problems that a quality multiple is a good idea anyway.

I don't know if this will help you or not, but since I lost so much hair, I bought some clip in extensions. They. Are. Awesome. My only regret is I didn't buy them sooner. I was afraid that since my hair is thin they would be visible, you know? But I put them in and didn't tell my husband. I wore them around for the day and never said anything. He never noticed and when I took them out he was genuinely surprised. I would just suggest getting a color wheel so the color matches perfectly. I don't wear them everyday, because the areas they clip in can get a little thin if you wear them too much. But I love them. The brand I bought was Easihair (the synthetic ones). If you search You Tube there are tons of videos of them in action.

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Thanks bumblebee! Great post, just you tubed the clip in's, they look great! Gonna get some! Thanks for your help, it's so warming to know you're not alone... Not that I wish this hairloss business on anyone, really, it's so distressing.

Update: been on the vit d a few weeks, hairloss seems to have slowed, though I'm frightened to talk about it really as it seems to come and go? I have noticed (as I dye my hair every 6 weeks as I'm also going grey... Hurrah!) that there are a few little white hairs poking up. Though they seem to be mainly at the front?? I dunno why. If I was having some growth why only at the front? I've checked several partings and apart from a few little strays poking up its defo nearest the hairline.

Should I be excited??! Or just ignore!

Hope you guys are getting some regrowth, love to have any updates.

Hugs

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Perhaps the growth is coming in patches, designerstubble.

I had all those new little hairs pointing out from the top of my head too. In a way, it looked hilarious and I had a good laugh at my appearance.

I would definitely start feeling relieved at seeing the new growth. Be excited!

Also, try eating more foods that contain zinc and copper. These two minerals are also connected to hair loss/growth. Raw pumpkin seeds are a good source for both minerals.

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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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