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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Any Ideas On Hair?
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Am still losing hair... Iron back up now, vit d just over border, am on b12. Sometimes the shedding slows down, sometimes if speeds up. I have a little new growth but no where near enough to compensate what is being lost... Any suggestions welcome thank yoooooooou.

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cyclinglady    715

I don't know who old you are, but women have reported that perimenopause has contributed to their hair loss.  Fluctuating hormones (e.g. thyroid, adrenals, etc.) could also apply.   

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mommida    158

Try supplementing Biotin.  Biotin is normally found in the diet by eating animal liver.  (Most athletes have been advised not to eat animal liver, because it can lead to testing positive for some PEDs.)

I have found no evidence of any toxic level of Biotin supplementation. 

 

It even seemed to have helped my thyroid condition.  (after 15 years on thyroid meds, finally in the last 2 years of taking Biotin it has "softened".) 

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BSVD    0

I've had the exact same problems with my hair. I was hoping being gluten free would help, but actually it has gotten worse. I've tried many different shampoos and been on rogain for 2 years. I'll be watching this post. Sorry I don't have any suggestions but it's nice to know someone else has the same issues with their hair.

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notme!    287

mine is noticably better, but it took a long time (longer than anybody wants to wait!!  crappy hair!!) and i am still 'shedding' - i am currently using tea tree and lavender (gluten-free) shampoo and conditioner and i have a blow dry creme that is gluten-free and sulfate free. <better for people who color their hair)  i had seriously given up on the hair then *poof** it was better.  not great, but i'm finally getting some length which is surprising because i haven't been able to grow it very long.  oh - and i quit getting highlights.  dries it out too much then it sticks out and i look like a witch :)  the broom probably doesn't help lololz :D

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notme!    287

Try supplementing Biotin.  Biotin is normally found in the diet by eating animal liver.  (Most athletes have been advised not to eat animal liver, because it can lead to testing positive for some PEDs.)

I have found no evidence of any toxic level of Biotin supplementation. 

 

It even seemed to have helped my thyroid condition.  (after 15 years on thyroid meds, finally in the last 2 years of taking Biotin it has "softened".) 

i wonder if you could eat liverwurst and it would help - i do actually eat it, i loves me some braunshweager <sp) now i have a good excuse to eat it :)  

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HarryCat    0

Hi!

 

I'll also be keeping an eye on this post - my hair is falling out in chunks. I seem to leave a trail wherever I go and its turned REALLY dry and brittle. So much so that strands 4-5 long are also snapping off.

Is this common with Coeliac's? I was only diagnosed 4 months ago with no symptoms and now my hair is falling out!

 

Advice would be appreciated - does it get better?

 

Cheers

HC

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nvsmom    332

Mine grew back in after 2 months gluten-free but I have had a couple of episodes of shedding over the past year that are linked to hypothyroidism or some other autoimmune issue. One bout was quite extreme, and I'm getting another bout now which I attribute to changing thyroid meds.

 

I hope it stops for you soon.

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Thanks everyone. I wonder if its thyroid as I have gained lots of weight for no reason and feel cold compared to everyone else. I asked docs to check thyroid antibodies but because my general thyroid test was normal they just won't do it. I'm on my 3rd doc here in UK.

Also perhaps hormonal? I'm 40. Think I was perimenopause before dx as periods irregular and boobs had shrunk!! BUT since off gluten I am regular 28 day cycle which I haven't had since my early 20's!

This hair business is upsetting especially when you are trying so hard to get fit! I am gonna try biotin again, only took it for 2 months and didn't see any improvement really... I'll try again.

Again, thank u

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nvsmom    332

Also perhaps hormonal? I'm 40. Think I was perimenopause before dx as periods irregular and boobs had shrunk!! BUT since off gluten I am regular 28 day cycle which I haven't had since my early 20's!

 

 

Hypothyroidism commonly is diagnosed around perimenopause or menopause for women. I'm not sure if that's because it is when it appears or because hypothyoidism makes perimenopause such a miserable time.  LOL

 

If you get a doctor to run thyroid tests, these are the tests I recommend:

TSH - should be near a 1

free T4 and free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - high levels indicate Hashimoto's and an attack on your thyroid

 

I have read books and articles that say celiacs should have their TSH tested (along with nutrients and bone density) when they are diagnosed. maybe you can find some of those and present it to your doctor?

http://www.cureceliacdisease.org/archives/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease

http://www.celiac.com/articles/1135/1/Connection-Found-between-Celiac-Disease-and-Hashimotos-Thyroiditis/Page1.html

 

Good luck! I hope the next doctor will listen.

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Thanks everyone. I wonder if its thyroid as I have gained lots of weight for no reason and feel cold compared to everyone else. I asked docs to check thyroid antibodies but because my general thyroid test was normal they just won't do it. I'm on my 3rd doc here in UK.

Also perhaps hormonal? I'm 40. Think I was perimenopause before dx as periods irregular and boobs had shrunk!! BUT since off gluten I am regular 28 day cycle which I haven't had since my early 20's!

This hair business is upsetting especially when you are trying so hard to get fit! I am gonna try biotin again, only took it for 2 months and didn't see any improvement really... I'll try again.

Again, thank u

There are independent labs in the US, where you can order tests online and go to a lab for the draw. I suggest a thorough thyroid panel that way, if you can do it, rather than fighting with docs. Then, use the results to prove your point (hopefully you get a clear answer). In the US we have alternative practitioners like Naturapaths who can write rx for thyroid (and other things). I'd check it out.

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Hypothyroidism commonly is diagnosed around perimenopause or menopause for women. I'm not sure if that's because it is when it appears or because hypothyoidism makes perimenopause such a miserable time. LOL

If you get a doctor to run thyroid tests, these are the tests I recommend:

TSH - should be near a 1

free T4 and free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - high levels indicate Hashimoto's and an attack on your thyroid

I have read books and articles that say celiacs should have their TSH tested (along with nutrients and bone density) when they are diagnosed. maybe you can find some of those and present it to your doctor?

http://www.cureceliacdisease.org/archives/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease

http://www.celiac.com/articles/1135/1/Connection-Found-between-Celiac-Disease-and-Hashimotos-Thyroiditis/Page1.html

Good luck! I hope the next doctor will listen.

Thank you! That's interesting and very useful info nvsmom :) awesome... I am going to request my doc do it again, I may even show her this thread... My god, menopause!! Can't believe I'm having this conversation! Again, many thanks, really helpful

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There are independent labs in the US, where you can order tests online and go to a lab for the draw. I suggest a thorough thyroid panel that way, if you can do it, rather than fighting with docs. Then, use the results to prove your point (hopefully you get a clear answer). In the US we have alternative practitioners like Naturapaths who can write rx for thyroid (and other things). I'd check it out.

Another very good idea! I'm going to check it out, thanks prickly pear. I did see a naturopath who did a pee test for me, perhaps she can do it... I'll give my doc one last chance, go in armed and blazing! It's so annoying. My doc didn't even know that I needed antibodies tested after being gluten-free. I feel as though I hand hold the dorset, UK medical establishment.

Many thanks, brilliant. Why can't I think of these great things myself?

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Hmmm. Can celiac itself 'make' you lose hair? I read about 10% of celiacs have ongoing hair loss not resolved with being gluten-free. Really?

Why is this?? If its gluten that triggers and you're off gluten then why continual hair loss? Hmmm. Maybe they mean complications of thyroid etc?

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Hmmm. Can celiac itself 'make' you lose hair? I read about 10% of celiacs have ongoing hair loss not resolved with being gluten-free. Really?

Why is this?? If its gluten that triggers and you're off gluten then why continual hair loss? Hmmm. Maybe they mean complications of thyroid etc?

Nutrient deficiencies can make you lose your hair...some Celiacs have a harder time recovering.

Unless that study also says those Celiacs were screened for other issues like Hypithyroidism, nutrient deficiencies I wouldn't assume it's "simply" a "Celiac thing" you must live with.

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nvsmom    332

I had hair regrowth when I went gluten-free and I'm assuming it was because I was gluten-free and not due to my hypothyroidism. Oddly enough, I was not deficient in any vitamins, although I was on the lower end of normal for D and I now know my zinc is a bit low.  I think my celiac hair loss was possibly due to the state of inflammation that celiac disease induces when I eat gluten.... but that's just my theory since I'm not low in nutrients.

 

I dunno... I've had my days where I wished shaving my head would be a bit more socially acceptable.  LOL   ;)

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Nutrient deficiencies can make you lose your hair...some Celiacs have a harder time recovering.

Unless that study also says those Celiacs were screened for other issues like Hypithyroidism, nutrient deficiencies I wouldn't assume it's "simply" a "Celiac thing" you must live with.

I was hoping someone would say that... I really don't hope it's permanent. I know my ferritin was way down (2.4!), but much better now within normal now for 6 months now... So kinda hoped I'd see something happening! There's a little bit of fluff that started growing earlier but so much more has fallen out it just keeps getting thinner.

Back on the biotin now, fingers crossed, I'll give it a while before I judge... Maybe it needs longer than 2 months hey?!

Thanks for help

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I had hair regrowth when I went gluten-free and I'm assuming it was because I was gluten-free and not due to my hypothyroidism. Oddly enough, I was not deficient in any vitamins, although I was on the lower end of normal for D and I now know my zinc is a bit low. I think my celiac hair loss was possibly due to the state of inflammation that celiac disease induces when I eat gluten.... but that's just my theory since I'm not low in nutrients.

I dunno... I've had my days where I wished shaving my head would be a bit more socially acceptable. LOL ;)

Would you really shave it?? I dunno, but I know what you mean... And I must admit I think if you dress right it can be carried off beautifully...

Has your hair regrown then as you must mostly be gluten-free all the time? How long have you been gluten-free nvsmom? I can't remember sorry. I used to have SO much hair... It's horrible trying to tie a ponytail these days and seeing how little there is to go into one. I did stop thinking about it as it stressed me out, but a hairdressers comment recently brought it all back :( but hey, just gotta keep at it. Positive mental attitude has gotta be better. And I am thankful for feeling well enough to go for a little run every week. I do wonder if its thyroid as I have also put on 7k for no reason....

Anyway, time time time!

Thanks for your help, let's all wish each other beautiful hair!

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nvsmom    332

Would you really shave it?? I dunno, but I know what you mean... And I must admit I think if you dress right it can be carried off beautifully...

Has your hair regrown then as you must mostly be gluten-free all the time? How long have you been gluten-free nvsmom? I can't remember sorry. I used to have SO much hair... It's horrible trying to tie a ponytail these days and seeing how little there is to go into one. I did stop thinking about it as it stressed me out, but a hairdressers comment recently brought it all back :( but hey, just gotta keep at it. Positive mental attitude has gotta be better. And I am thankful for feeling well enough to go for a little run every week. I do wonder if its thyroid as I have also put on 7k for no reason....

Anyway, time time time!

Thanks for your help, let's all wish each other beautiful hair!

I doubt I'd shave it - I would look too much like my brother.  LOL  ;)

 

I have been gluten-free for a year now. I had a couple of cc issues in the first month or so, and then in January and Februray I glutened myself a few times with fries that had wheat starch on them when I got lazy reading labels.  :rolleyes: Otherwise I have been gluten-free a year.

 

My hair was thinning mostly on the top. My part was getting wider and wider. Once I went gluten-free, the hair loss slowed a bunch. At two or three months in, I remember noticing small spikes of new growth about 2 cm long that were sticking up off the top of my head and on my hairline.

 

Then at 3 months in, I had some sort of autoimmune attack. It was at the same time that I started thyroid meds so maybe it was related. Anyway, I had a bunch of joint pain, faitigue, mouth sores, and my face got red and rashy, and my hair fell out in scary amounts. My hubby actually came and asked if I was okay because I had forgotten to clean the shower after using it and he was disturbed by the hair he saw there. My hair got pretty thin. I would wear it plastered to my head otherwise you could see through the top of it to the top of my head. I had a bald spot at the back that I attempted combovers with...luckily it was a small spot.  Yuck.

 

That lasted about 3 months and then I started getting regrowth again... I keep my hair in a short bob to help hide the fact that my hair is at so many different lengths. It's been thinning a bit again lately... I'm a believer in hats.  LOL  ;)

 

It does fall out, but then it grows back.  You might just have to wait it out. 

 

I would check out other causes. You've been gluten-free a while - the longer you are gluten-free, the less likely it's caused by the celiac disease. It could still be from celiac disease but i would check your thyroid too.  Know what the subclinical numbers are like for TSH because subclinical TSH can cause a bunch of problems.... it did for me.

 

i hope it gets better for you soon. (((hugs)))

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I doubt I'd shave it - I would look too much like my brother.  LOL  ;)

 

I have been gluten-free for a year now. I had a couple of cc issues in the first month or so, and then in January and Februray I glutened myself a few times with fries that had wheat starch on them when I got lazy reading labels.  :rolleyes: Otherwise I have been gluten-free a year.

 

My hair was thinning mostly on the top. My part was getting wider and wider. Once I went gluten-free, the hair loss slowed a bunch. At two or three months in, I remember noticing small spikes of new growth about 2 cm long that were sticking up off the top of my head and on my hairline.

 

Then at 3 months in, I had some sort of autoimmune attack. It was at the same time that I started thyroid meds so maybe it was related. Anyway, I had a bunch of joint pain, faitigue, mouth sores, and my face got red and rashy, and my hair fell out in scary amounts. My hubby actually came and asked if I was okay because I had forgotten to clean the shower after using it and he was disturbed by the hair he saw there. My hair got pretty thin. I would wear it plastered to my head otherwise you could see through the top of it to the top of my head. I had a bald spot at the back that I attempted combovers with...luckily it was a small spot.  Yuck.

 

That lasted about 3 months and then I started getting regrowth again... I keep my hair in a short bob to help hide the fact that my hair is at so many different lengths. It's been thinning a bit again lately... I'm a believer in hats.  LOL  ;)

 

It does fall out, but then it grows back.  You might just have to wait it out. 

 

I would check out other causes. You've been gluten-free a while - the longer you are gluten-free, the less likely it's caused by the celiac disease. It could still be from celiac disease but i would check your thyroid too.  Know what the subclinical numbers are like for TSH because subclinical TSH can cause a bunch of problems.... it did for me.

 

i hope it gets better for you soon. (((hugs)))

Thanks for that (hugs back) ;)

I have made an appointment (again!) with my doc, I'll get on my knees and beg for the correct thyroid tests! I had my thyroid tested last Dec... Could they have changed in less than a year??

So... subclinical TSH i guess is before it's officially diagnosed?

I had some results come back from an independent pee test I had done privately here in UK, and it showed severe adrenal 'fatigue'.

could this contribute to hair loss i wonder?? I know very little about the adrenal fatigue...Might have post a thread on that one to see if anyone knows about adrenal fatigue... Never ending hey?

Thanks for all your help... if it carries on over the summer, I may have to have a pixie crop. Yikes!!!

Thanks again... Wishing you the glory of a head of hair and much happiness :)

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kate1    0

Mine didnt drop out till over a year gluten free .

It was shedding like mad for 9months ...... I was frantic when i realised how much was coming out!

It was when I had a vit d test done and it came back quite low that I started to worry about my hair, i had also been very fatigued and quite depressed through that 9months.

I think the lack of vit d contributed to the hair loss.

But also feel it was more than that.

I hadn't kept up with my calcium vit d through that time and had stopped dairy.

I researched everything I could for hair thinning.

I took evening primrose, biotin, folic acid b vitamins and fish oil, calcium and vit D.

Started eating plenty of eggs for protein and extra biotin.

Stepped up the protein from chicken etc and ate almonds and walnuts .

I bought L ' Oreal everpure shampoo sulphate free, and Lee stafford treatment to repair build and fix hair.

I used a wide toothed comb rather than brushing.

They gave me a massive dose of vit d to boost my vit D.

It took 3 months to more or less stop but it did.

In all honesty i think a lot of it was lack of protein and calcium and maybe the vitD.

I never shed hair before i was diagnosed and i was pretty ill then.

I think we ar lacking in a lot of vits amd nutrients before we are diagnosed and a long time after .

Although I was really lax about the cacium and vit D , for ages and my body needed it not having dairy and also having osteoporosis too.

Protein is really important for hair etc as is calcium..

Something worked out of all the stuff I did ...lol... not sure what though!

I also have underactive thyroid but never caused me to shed hair only be dried out.

But after going gluten free I had to have meds reduced twice already as was showing hyper and even now might have to have another reduction.

Must be absorbing the meds better but also do think over medicated speeds the body up so could cause shedding.

The lee stafford conditioner is really really good read the revues if you live in uk in boots chemist online.

You use it after shampooing just a blob leave it on a short while then rinse then use your normal conditioner after it.

Bit pricey but well worth it and sometimes on 3 for 2 .

Stay with it and you will get results, very exhausting i know but just as exhausting and stressful watching it go down the plughole

Amd all over the floor which mine was, and the more I stressed the more it shed.

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