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Hair Loss - When Will It Come Back?

granolagal

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granolagal Apprentice
granolagal
Posted

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

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rosetapper23 Explorer
rosetapper23
Posted

First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

granolagal Apprentice
granolagal
Posted
  • Author

First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

kareng Grand Master
kareng
Posted

I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

granolagal Apprentice
granolagal
Posted
  • Author

I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

True. Although I wonder why my iron went down after being on the supplements for 3 months? I'm so desperate to feel normal again and have hair, I may just start taking the supplements now. Like you said, it's got to be better than none. Thanks for the tip on B12, I'll have to look for it at the pharmacy. So much to learn.... :unsure:

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the iron and sublingual B12 also add in a biotin supplement and make sure that anything you are using on your hair is free of gluten. It usually takes at least 3 months to see any noticeable regrowth. I know how disheartening it is to lose so much hair but it should grow back. Do be very strict with the diet though as for some of us the hairloss can be related just as much to the autoimmune issues of celiac as it is to the nutritional problems. I still lose hair whenever I am glutened severely and it takes about a month for the shedding to stop.

rosetapper23 Explorer
rosetapper23
Posted

All good suggestions, but I added the B vitamins and Biotin and nothing happened. It was only when I took chelated zinc and BioSil that my hair regrew. It was absolutely emotional for me to see new growth all over my head! I wish this same thing to happen to you...

As for the iron, your doctor does NOT understand that you're unable to absorb iron. Most doctors won't give iron injections, and that's fine. However, it's possible to get iron infusions, and many doctors are unaware of this. Your doctor can order infusions, and if she doesn't know how much to prescribe, she can speak to a doctor or nurse who does know. You receive infusions at the hospital in their infusion clinic--you receive iron through an IV. I was unaware of this procedure until someone advised me on this forum. I was on iron infusions for nearly two years before my body was finally able to absorb iron. Without the infusions, I may have died. Please don't place yourself in harm's way--iron is crucial for good health, and if you're lacking in iron for longer than two years, you can begin to develop cancer because of low cellular respiration. If your doctor refuses to prescribe iron infusions, find another doctor. I'm serious.

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tahoma Newbie
tahoma
Posted

Rosetapper:

What type of thyroid medication did/do you take, and how much biosil are you using?

Thanks,

Karen

peeptoad Apprentice
peeptoad
Posted

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

My iron was around 14 at its lowest and alopecia was definitely one of my symptoms. My level is still only about 25 after two years on supplements, but the hair loss was helped by taking iron pills. My hair is much, much better than it was, but is still not back to what it looked like about 5-6 years ago (before all my problems started). I took iron for close to a year before I really started noticing a difference in my hair though... I think it can take awhile.

BTW, some dermatologists who believe that hair loss can be caused by low serum ferritin say you need to get your levels back up to 50-75 to really have optimal hair growth.

AVR1962 Collaborator
AVR1962
Posted

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

I am not a doc but I don't understand why she wanted you to wait til you have been on a gluten-free diet to start supplements?? I had hair loss but I didn't wait for doc to tell me what I needed to take for supplements, as I would still be waiting at this point unfortunately. BioSil drops will help a great deal but make sure you get some zinc, B complex, iron and look at Primrose oil. I had a thyroid growth and belonged to a group for people with thyroid issues. The leader lost a whole bunch of hair and contributed Primrose oil for the regrowth. Her hair looks fantastic so it is possible, I've seen it with my own eyes.

rosetapper23 Explorer
rosetapper23
Posted

I take Armour Thyroid because I need both T3 and T4, and I take one capsule of BioSil per day. Of course, drops may be better for you, though, since you're currently having absorption problems.

I sure hope you follow through on requesting iron infusions. You seem like a good candidate for them--and shame on your doctor for not being knowledgeable enough to order them for you! All of my doctors at Kaiser had never heard of infusions, but one of them was willing to look into it. He called me soon after and told me that the Infusion Center told him that iron was the most common type of infusion. However, it appears that most doctors never got that memo...

Celtic Queen Explorer
Celtic Queen
Posted

I've also had thinning hair problems and know how hard it can be to look in the mirror each day to see the damage. My hair dresser recommended taking biotin. When I first started taking it I didn't notice a difference, but after a few months and increasing my dosage, I noticed a big difference.

My doctor also put me on prescription iron supplements. And I switched to gluten-free shampoo and styling products. There are a bunch of threads on here with different recommendations on gluten-free products.

You said your thyroid was tested. Was it a regular TSH test? Or a T3 and T4 test. I read somewhere that you can have a regular TSH test but still have thyroid problems that are only detectable by testing T3 and T4 levels. There are a lot of people on this board way more knowledgable about the thyroid stuff than me, so maybe they can confirm if I speaking correctly about that.

Also, for me my hair got worse on the gluten free diet before it got better. So be patient. It's taken me several months for my hair to look better. At first I was very discouraged, but now I'm seeing progress.

And I'm definitely going to run out and get some BioSil and Primrose Oil to try.

  • 2 weeks later...
granolagal Apprentice
granolagal
Posted
  • Author

Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

AVR1962 Collaborator
AVR1962
Posted

Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

You are right on track, and no this is not too much to combine. I think everyone of those products reads on the back that they should be taken with a meal. Do that to help with absorbtion. At first you might notice little change. The first thing I noticed was my hair was falling out. Zinc and Biosil are both good to for other things, I know it's not cheap and you may wonder if it is doing anything. I went off my BioSil to see if it was making a difference and my har started falling out again. I have not used the tablets. The drops taste terrible even in juice so if the tabs work, great! Let us know how it works for you!!

Finally-45 Contributor
Finally-45
Posted

My immune system is so weak I respond to eggs and dustmites like I have an allergy. (The allergy tests show very, very mild sensitivity, but my body says other wise. Hoping to get well now that I'm focuses on the celiac.) One symptom is hair weakness and thinning. As soon as I cut back my eggs, it goes away.

  • 1 year later...
designerstubble Enthusiast
designerstubble
Posted

@ rosetapper23...

Is it really true that you can get cancer from having low iron stores for over 2 years??? That's very worrying, I was diagnosed (finally after many years) with celiac and a ferritin level of 2.4. I'm in supplements now, it's going up very slowly but this is worrying as I have always been on the low side for ferritin due to being vegetarian.

How high are these cancer/low ferritin risks, do you know?? :(

Ps my hair seems worse after taking iron for some reason, it's so so thin, I can't even look in the mirror... And find it hard to touch it...

  • 2 months later...
acavazos2 Newbie
acavazos2
Posted

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

 

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

mushroom Proficient
mushroom
Posted

I have spent a lifetime growing (and regrowing) back my hair.  Seems like anything will make  it fall out, including gluten.  But also antibiotics, and anti-rheumatoid drugs like methotrexate,  and now anti-coagulants.  Seems like everything that is anti- something is also anti-hair :lol:   Forrtunately, so far, it always does eventually grow back in, or I would be bald  :wacko:

IrishHeart Veteran
IrishHeart
Posted

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

 

 

 

Testing for celiac is a blood panel, then an endoscopy with biopsy (not a colonoscopy) if that changes your mind at all. (technically, there is no

gluten allergy--do you mean you are allergic to wheat?)

1desperateladysaved Proficient
1desperateladysaved
Posted

I have trouble absorbing my supplements.  I chew tablets and open capsules now!  Maybe you could do this?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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