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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Hair Loss - Help
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I thought I posted on this yesterday but I guess it got lost with the forum changes. Anyway...

I'm about 4 months into the gluten-free diet. At 2 months, I noticed that I was getting some new growth, which was very welcome because my hair has been steadily thinning for over a decade. Unfortunately at around that same time, I had some sort of autoimmune attack, possibly from my undertreated Hashimotos or another autoimmune problem (lupus suspected) that is yet undiagnosed, and my hair loss increased dramatically; I'm talking a dozen hair balls in the shower alone. My hair thinned noticeably at the front and I have some very thin spots at the back of my head which I can luckily mostly cover with longer hair. The AI attack is mostly subsiding so my hair loss has slowed again, and I do still have the short spikes of regrowth sticking out of my head... Attractive. LOL My husband gave me some looks of sympathy when I asked him to check it for me. :(

My question is: Does anyone have tips or ideas to encourage hair regrowth, and to prevent or slow those periods when my body wants to ... shed?

I currently take biotin on top of B12 (my B levels are good). I also supplement with omega 3 fish oil, cod liver oil and evening primrose oil 2 to 3 times a day. As far as I know, only my D levels are a bit low and they are just on the low side of normal, the rest of my blood levels are really good for a celiac... or even a non-celiac. I take a lot of other vits and supplements but these are the only ones I know of related to hair.

I don't use any special lotions or shampoos but I'm willing to try some... I'm willing to try almost anything. My hair is getting very thin; my pony tail is smaller than a dime. If I was a guy, and it got much thinner, I would be thinking about shaving it off just so I wouldn't have to deal with it.... my husband wouldn't appreciate that look and to be honest, I'm to vain to do that.

Any help would be appreciated. :)

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Hi Nicole,

You could try a good b complex vitamin. I think it's b6 that's needed for hair growth. Get one that has methylcobalmin (b12) and 5-MTHF (folate). AOR is a respected brand in Canada and their b complex is pretty good.

I'm so sorry to hear about the possible Lupus. Hopefully it's not Lupus, but something more treatable. Thinking about you.

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Hi Nicole,

You could try a good b complex vitamin. I think it's b6 that's needed for hair growth. Get one that has methylcobalmin (b12) and 5-MTHF (folate). AOR is a respected brand in Canada and their b complex is pretty good.

I'm so sorry to hear about the possible Lupus. Hopefully it's not Lupus, but something more treatable. Thinking about you.

Thanks for the advice... I don't take a B6 so I'll add that to my grocery list.

I'm not sure about the lupus, it could be something else (like MCTD or UCTD) or just residual celiac or hashimoto problems, or nothing autoimmune related (doubt that one). I'm waiting to see a rheumatologist but apparently there is a doctor shortage since I haven't heard back from anyone after being refered to a rheumatology triage a month ago. I sooo wish I could wash my hands of the whole medical community... I consider them to be a necessary evil! LOL

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I thought I posted on this yesterday but I guess it got lost with the forum changes. Anyway...

I'm about 4 months into the gluten-free diet. At 2 months, I noticed that I was getting some new growth, which was very welcome because my hair has been steadily thinning for over a decade. Unfortunately at around that same time, I had some sort of autoimmune attack, possibly from my undertreated Hashimotos or another autoimmune problem (lupus suspected) that is yet undiagnosed, and my hair loss increased dramatically; I'm talking a dozen hair balls in the shower alone. My hair thinned noticeably at the front and I have some very thin spots at the back of my head which I can luckily mostly cover with longer hair. The AI attack is mostly subsiding so my hair loss has slowed again, and I do still have the short spikes of regrowth sticking out of my head... Attractive. LOL My husband gave me some looks of sympathy when I asked him to check it for me. :(

My question is: Does anyone have tips or ideas to encourage hair regrowth, and to prevent or slow those periods when my body wants to ... shed?

I currently take biotin on top of B12 (my B levels are good). I also supplement with omega 3 fish oil, cod liver oil and evening primrose oil 2 to 3 times a day. As far as I know, only my D levels are a bit low and they are just on the low side of normal, the rest of my blood levels are really good for a celiac... or even a non-celiac. I take a lot of other vits and supplements but these are the only ones I know of related to hair.

I don't use any special lotions or shampoos but I'm willing to try some... I'm willing to try almost anything. My hair is getting very thin; my pony tail is smaller than a dime. If I was a guy, and it got much thinner, I would be thinking about shaving it off just so I wouldn't have to deal with it.... my husband wouldn't appreciate that look and to be honest, I'm to vain to do that.

Any help would be appreciated. :)

Know just what you mean I had a big bald spot right on top of my head and two big sore that wouldn't heal on my arm, I was told it was cause of the lupus and the sun. But now that I have gone gluten free my hair is coming back and my sore are all gone. I also have a flat top. At least now when I comb my hair I am not picking it up from all the place.

I went gluten free May 16 so it may just take some time.

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What I've used in the past after a glutening or Hashimoto's flareup (with resultant hair loss) are the following products with much success: BioSil, NeoCell Super Collagen, and chelated zinc. For a number of us here, BioSil has been the most effective.

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Know just what you mean I had a big bald spot right on top of my head and two big sore that wouldn't heal on my arm, I was told it was cause of the lupus and the sun. But now that I have gone gluten free my hair is coming back and my sore are all gone. I also have a flat top. At least now when I comb my hair I am not picking it up from all the place.

I went gluten free May 16 so it may just take some time.

Thanks Linda. My hair was coming in quite nicely on the gluten-free diet but then something flared up and it fell out worse. I'm hoping being gluten-free will help it grow in again... like before.

What I've used in the past after a glutening or Hashimoto's flareup (with resultant hair loss) are the following products with much success: BioSil, NeoCell Super Collagen, and chelated zinc. For a number of us here, BioSil has been the most effective.

Thanks Rosetapper. I'm hoping it was just a hashi's flareup since I had just started on synthroid a week or two before the "shedding" occurred. I'll look into The Biosil and NeoCell. Thanks. :)

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Good luck! With these products, you should start seeing little "fluffies" around your hairline in about three weeks.

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Hi Nicole, has anyone tested your TSH levels recently, like you said it could be under treated Hashimotos. I had under active thyroid diagnosed many years before Coeliacs disease and I lost 50% of my hair. Fortunately I had very thick hair then, and lots of it, prior to losing it. I did notice more hair loss when my Coeliacs symptoms were at their worst. (2 yrs ago) but I had extremely low ferritin levels (have you been checked for anaemia?) and I had to have high doses of iron for it. I also had very low vitamin D levels, so perhaps these levels need checking too.

Hope this is helpful to you.

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Good luck! With these products, you should start seeing little "fluffies" around your hairline in about three weeks.

Fluffies are good! LOL To bad this isn't the 80's, I could tease my hair back into sky high knots and curls. LOL

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Hi Nicole, has anyone tested your TSH levels recently, like you said it could be under treated Hashimotos. I had under active thyroid diagnosed many years before Coeliacs disease and I lost 50% of my hair. Fortunately I had very thick hair then, and lots of it, prior to losing it. I did notice more hair loss when my Coeliacs symptoms were at their worst. (2 yrs ago) but I had extremely low ferritin levels (have you been checked for anaemia?) and I had to have high doses of iron for it. I also had very low vitamin D levels, so perhaps these levels need checking too.

Hope this is helpful to you.

I did have thick hair when I was a teenager. Back in the 80's (decade of shoulder pads and big hair) I had a perm and my hair looked so thick it's width was almost past my shoulders...and I've got wide shoulders. It's been thinning for so long, and mostly very slowly (except for a few periods like a month ago and postpartum) that it snuck up on me. I can't ignore it much anymore. :rolleyes:

My last TSH was a 7 something or other, with a range of 0.2-6.0. This is down from a couple of months ago when it was in the teens. I'm fairly new to being diagnosed with Hashi's but have had symptoms and marginally elevated TSH tests for about 15 years. I've only been treated (synthetic T4) for about 2 months. My doctor is very slow in increasing my doses so my symptoms are not changing, nor are my free T4 or total T3 levels. At this rate, I doubt my Hashi's will be under control until some time in the new year... and from what I've heard, when the med levels are changing, that can cause more hypo symptoms. :wacko:

I'm not anemic, or at least I wasn't in the summer when it was last checked. My D was near the lower end of the normal range, but since that lab result (in summer) I have quadrupled my (sublingual) D intake so I imagine it will start improving. I will request that my labs be rechecked around the New Year (for a 6-7 month check on how I'm doing on the gluten-free diet).

Thanks for the advice. I appreciate it. :)

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Good grief! Your doctor is killing you! Is there any way you can changes doctors (like PDQ?)? A level of 7 is unacceptable! You should try to get as close as possible to 2. Also, sometimes the synthetic stuff simply doesn't work--if your body is unable to make T3 from T4, you'll never get better....and so what you'd need is Armour Thyroid, which provides both T3 and T4. Are you really stuck with this doctor? Some doctors are extremely weird when it comes to increasing the dose, Yes, too much thyroid medication CAN kill a person, but, generally, you can "up" the dosage by a safe amount without worrying that. With Armour Thyroid, their site said that I could increase the dose safely by 1/2 tablet...so I did when it became obvious that my thyroid level was too high. You might check out the website of your particular medication to see what they recommend for increasing the dose safely. You can then present that evidence to your doctor and demand a higher increase in dose.

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Good grief! Your doctor is killing you! Is there any way you can changes doctors (like PDQ?)? A level of 7 is unacceptable! You should try to get as close as possible to 2. Also, sometimes the synthetic stuff simply doesn't work--if your body is unable to make T3 from T4, you'll never get better....and so what you'd need is Armour Thyroid, which provides both T3 and T4. Are you really stuck with this doctor? Some doctors are extremely weird when it comes to increasing the dose, Yes, too much thyroid medication CAN kill a person, but, generally, you can "up" the dosage by a safe amount without worrying that. With Armour Thyroid, their site said that I could increase the dose safely by 1/2 tablet...so I did when it became obvious that my thyroid level was too high. You might check out the website of your particular medication to see what they recommend for increasing the dose safely. You can then present that evidence to your doctor and demand a higher increase in dose.

He's still in the process of bringing my TSH down, I'm just impatient with the process. He started me at 50mcg synthroid for 7 weeks and now I'm on 75mcg and will be checked again in about a month. He has said that he is aiming for a TSH below a 6 (top of the lab range) and I'm pretty sure that I'll have to fight him to treat my symptoms rather than the labs. I feel no different now (at about a 7) than I did when my TSH was above 14... I just wish the thyroid ranges weren't so broad; for patients who have doctors that live and die by lab results, it's a bit daunting.

And I am sort of stuck with my doctor for now. There is a shortage of doctors in my city so it's very tough to find a good one who is accepting new patients.

I would like to try armour, but I thought it might be easier to get him to switch if I could get my TSH closer to a 2 or 1 first... I'll see.

And thanks again. :)

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I've been on the diet for almost two years now, and I didn't realise how bad my hair loss was (I'm in my early 20s) until I stopped losing it a few months ago. I woke up one morning, got in the shower and thought about how strange it was that there wasn't any hair in the drain...or in my hair-brush...or all over my clothes. It just took almost two years to get to this point. I try to eat a high-fat, whole-grain diet. If you can get a doctor to prescribe it, the b-complex shots (it contains all the b vitamins - not just b12) are good for hair/nails, but if your digestive tract heals and you eat a healthy diet, you won't need them.

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I used BioSil drops and zinc tablets.

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He's still in the process of bringing my TSH down, I'm just impatient with the process. He started me at 50mcg synthroid for 7 weeks and now I'm on 75mcg and will be checked again in about a month. He has said that he is aiming for a TSH below a 6 (top of the lab range) and I'm pretty sure that I'll have to fight him to treat my symptoms rather than the labs. I feel no different now (at about a 7) than I did when my TSH was above 14... I just wish the thyroid ranges weren't so broad; for patients who have doctors that live and die by lab results, it's a bit daunting.

And I am sort of stuck with my doctor for now. There is a shortage of doctors in my city so it's very tough to find a good one who is accepting new patients.

I would like to try armour, but I thought it might be easier to get him to switch if I could get my TSH closer to a 2 or 1 first... I'll see.

And thanks again. :)

The upper limit on TSH is really about 3....per the endocrinology congress from about 6-8 years ago!!!!!! I am not aware of the time needed between med adjustments, so can't help you there....

Just went hunting....lol. Per the european endo journal, 4 weeks is the accepted interval, down from 8 apparently.

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I've been on the diet for almost two years now, and I didn't realise how bad my hair loss was (I'm in my early 20s) until I stopped losing it a few months ago. I woke up one morning, got in the shower and thought about how strange it was that there wasn't any hair in the drain...or in my hair-brush...or all over my clothes. It just took almost two years to get to this point. I try to eat a high-fat, whole-grain diet. If you can get a doctor to prescribe it, the b-complex shots (it contains all the b vitamins - not just b12) are good for hair/nails, but if your digestive tract heals and you eat a healthy diet, you won't need them.

Two years? Sigh. LOL I'm glad to hear it thickened up for you. :)

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I used BioSil drops and zinc tablets.

Thanks. I'm now taking them both. :)

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The upper limit on TSH is really about 3....per the endocrinology congress from about 6-8 years ago!!!!!! I am not aware of the time needed between med adjustments, so can't help you there....

Just went hunting....lol. Per the european endo journal, 4 weeks is the accepted interval, down from 8 apparently.

I've quotoed that number to my doctor, and my son's doctor (his TSH was almost a 5), but they keep saying that our labs are different, ergo the different ranges, but they won't tell me how. I think they avoid American standards even if they are right... just my personal opinion though.

6-8 weeks is the accepted waiting period up here and I'm not pushing that. As a newly healing celiac (4 months) I doubt my gut is picking up the hormones as well as it should so I'm willing to give it time, although I complain about the waiting. LOL ;)

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Hi

Just thought I would add one of my seemingly random posts.

I would say that you will not feel well with a TSH that high, but would like to add that it's important not to just rely on TSH results alone. IMHO they are unreliable and variable and unlikely to reflect how you feel. There are other thyroid tests that should be part of the picture too - not to mention symptoms - good luck with getting a doctor to listen to those!!!

I have had Hashi's for 36 years - took thyroxine for the first 30 years - was never well but in hindsight, I think this was because of celiac - which I also suspect was the cause of the Hashi's. Now take ERFA Thyroid (Canadian) which is brilliant.

A couple of other points spring to mind:

To test for iron you need to have Ferritin Serum (iron storage) tested not the general test for anemia. Low ferritin gives problems with taking thyroid meds.

I can't take Cod Liver or Fish Liver oil because it makes me hypo within 36 hours even with meds. Luckily eating fish seems ok.

This is my own view - gluten also seems to block the meds and makes me hypery as does low ferritin. Have no idea why this should be but then again gluten has loads of horrible effects.

My hairloss comes and goes (sorry to keep banging the same drum) - it is directly related to gluten and I think, soy.

Excellent website re Hashi's and thyroid in general is Stop the Thyroid Madness.

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Hi

Just thought I would add one of my seemingly random posts.

I would say that you will not feel well with a TSH that high, but would like to add that it's important not to just rely on TSH results alone. IMHO they are unreliable and variable and unlikely to reflect how you feel. There are other thyroid tests that should be part of the picture too - not to mention symptoms - good luck with getting a doctor to listen to those!!!

I have had Hashi's for 36 years - took thyroxine for the first 30 years - was never well but in hindsight, I think this was because of celiac - which I also suspect was the cause of the Hashi's. Now take ERFA Thyroid (Canadian) which is brilliant.

A couple of other points spring to mind:

To test for iron you need to have Ferritin Serum (iron storage) tested not the general test for anemia. Low ferritin gives problems with taking thyroid meds.

I can't take Cod Liver or Fish Liver oil because it makes me hypo within 36 hours even with meds. Luckily eating fish seems ok.

This is my own view - gluten also seems to block the meds and makes me hypery as does low ferritin. Have no idea why this should be but then again gluten has loads of horrible effects.

My hairloss comes and goes (sorry to keep banging the same drum) - it is directly related to gluten and I think, soy.

Excellent website re Hashi's and thyroid in general is Stop the Thyroid Madness.

Thanks Lady Eowyn. :) I think you are right on a bunch of things:

I don't feel well with a TSH of 7 something. I think I have a doc who loves the TSH so getting him to treat me once I get in the accepted range (a 6) if I still have hypo symtpoms will be a challenge. I have had the TPO Ab done and I was at the very high edge of normal, free T4 was near the bottom range of normal, and I've had total T3 done (also low end of normal) but I'm not sure why he bothered with that one instead of free T3. :rolleyes:

I think I've had hashi's for 10-15 years... at least. It was back then that I started requesting tests but my TSH was always a high normal or just a bit high and my doctors said that was fine... I trusted them... dumb on me, eh? LOL I've only been on synthroid for a couple of months so I'm still waiting to get my TSH down. At the moment he has me on 75mcg a day which I'm guessing won't be enough if I have had hashi's that long, and because I'm about 165lbs... not petite by a long shot. It's hard to wait though...

I'll go back and check my ferritin levels, or if that test was done. Thanks for the tip.

And fish oil, eh? I take a tonne of that stuff: 6 or so capsules a day. Huh. :blink: I hope it doesn't keep me hypo.

I have NEVER been hyper. Ever. Last time I remember having too much energy was about age 9. LOL No symptoms of it at all, and from what I've heard, hyper symptoms are memorable! LOL

I had some hair regrowth with the gluten-free diet but I still get (got) a period of massive shedding. Something else definitely caused it. I'm guessing hypothyroidism or some connective tissue problem. Hard to say... I just hope it doesn't shed again for a few months, my hair is not laying nicely on my head anymore... it's not good. :unsure:

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