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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Crayons574

Hair Loss Post Gluten Free?

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I have never had problems with my hair. I went strictly gluten free in May/June of this summer. My hair started falling out in June/July and it is now October, and I have lost a significant amount of hair, and it is not letting up.

Anyone ever experienced hair loss after going gluten free?

Any ideas on what might be causing it? I had my ferritin, thyroid, amino acids, and adrenal glands/hormone panel checked out and everything looked fine. Also, I don't believe it is Alopecia Areata, because it is all over hair shedding, not in patches.

Is there a vitamin deficiency or other food allergy I should test for (even though I am on the Paleo diet)?

THANKS so much for any help you could offer!! :)

Hair loss is no fun :( ....

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I had this problem the end of last year. My dr said just because my thyroid test was in the normal range didn't mean I did not need thyroid. She started me back on it and the hair loss stopped. The hard part is finding a doctor who can look at he whole person and not just test results.

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I lose a lot of hair if my hair products have either gluten or soy ingedients. Have you checked yours? I also will lose hair if I eat soy, are you having any other issues that may point to an additonal intolerance?

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I have to say that it is refreshing to know that I am not the only one going through this "hell". I have been sick for around 10 years and I have been to AT LEAST 15 different doctors. It started with my hair falling out in gobs. I mean handfulls of hair would fall out. Every single doctor told me "There is nothing wrong with you, all of your tests are normal." The only thing I had was an iron level so low they had to give me an IV and low B-12. Then I had joint pain, night sweats, swollen face, feet, and hands, nausea, depression, extreme fatigue, rashes, and the list goes on. I have even been told by one doctor to see a psychiatrist. This Friday I went to see a GI for a fever, vomiting, distended abdomen and night sweats. He told me to take some pepcid ac... WHAT?!?! I cried all the way home. When I got home I started doing some research about celiac. I found this rash called dermatitis herpetiformis. Wal la!!!! I have had this "thing" that looks just like DH on my hip, it keeps coming back and my doctor told me that it was herpes. The only thing is I have not had any digestive problems until these last two weeks so I never thought to look at celiac before. Yesterday I stopped eating gluten and today I feel 100% better. I have been so depressed and don't go to social functions anymore because I look so bad. I have lost 90% of my hair now and have very dark circles under my eyes. My friends ask me if I have AIDS. It's very depressing and sad. I think I have finally found my problem. Hopefully my hair will grow back and I will start to look healthy again. This morning I lost half of the hair than I normally lose (this is good!!!). Has anyone else had all of these problems?

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I have to say that it is refreshing to know that I am not the only one going through this "hell". I have been sick for around 10 years and I have been to AT LEAST 15 different doctors. It started with my hair falling out in gobs. I mean handfulls of hair would fall out. Every single doctor told me "There is nothing wrong with you, all of your tests are normal." The only thing I had was an iron level so low they had to give me an IV and low B-12. Then I had joint pain, night sweats, swollen face, feet, and hands, nausea, depression, extreme fatigue, rashes, and the list goes on. I have even been told by one doctor to see a psychiatrist. This Friday I went to see a GI for a fever, vomiting, distended abdomen and night sweats. He told me to take some pepcid ac... WHAT?!?! I cried all the way home. When I got home I started doing some research about celiac. I found this rash called dermatitis herpetiformis. Wal la!!!! I have had this "thing" that looks just like DH on my hip, it keeps coming back and my doctor told me that it was herpes. The only thing is I have not had any digestive problems until these last two weeks so I never thought to look at celiac before. Yesterday I stopped eating gluten and today I feel 100% better. I have been so depressed and don't go to social functions anymore because I look so bad. I have lost 90% of my hair now and have very dark circles under my eyes. My friends ask me if I have AIDS. It's very depressing and sad. I think I have finally found my problem. Hopefully my hair will grow back and I will start to look healthy again. This morning I lost half of the hair than I normally lose (this is good!!!). Has anyone else had all of these problems?

Yes, you will find many of us have all those issues and more. If you want to be medically diagnosed please don't stop eating gluten yet as you must be eating it to be tested. If you are happy with simply feeling better then go ahead and stay on the diet. Not everyone needs a doctor confirmed diagnosis but if you feel you do keep on the gluten and call your doctor and ask specifically to be tested for celiac. Welcome to the board and ask any questions you need to.

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Please, I've just spent the last day and a half crying over the uncontrollability of this....I have lost probably 50% of my hair....I've been gluten free since June and honestly, can someone tell me this is going to stop, that my hair will actually grow back? Is there hope? I'm in the process of having thyroid and hormones checked...I have not changed my hair color...could it be the salon? What kind of hair color (dark blonde/lt. brown base with blonde highlights) can I use? I need the perm. color for the base to cover gray...I feel so pressured and stressed trying to come up with a solution before I have nothing left. I have always had tons of hair...the depression and sadness is just about unbearable and beginning to affect other areas of my life to where I don't want to go out at all. Please, if you find any answers or can offer any hope...

(I've been off gluten since June of this year, it's an all over thinning with emphasis on the front

hairline...)

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Please, I've just spent the last day and a half crying over the uncontrollability of this....I have lost probably 50% of my hair....I've been gluten free since June and honestly, can someone tell me this is going to stop, that my hair will actually grow back? Is there hope? I'm in the process of having thyroid and hormones checked...I have not changed my hair color...could it be the salon? What kind of hair color (dark blonde/lt. brown base with blonde highlights) can I use? I need the perm. color for the base to cover gray...I feel so pressured and stressed trying to come up with a solution before I have nothing left. I have always had tons of hair...the depression and sadness is just about unbearable and beginning to affect other areas of my life to where I don't want to go out at all. Please, if you find any answers or can offer any hope...

(I've been off gluten since June of this year, it's an all over thinning with emphasis on the front

hairline...)

I would have your salon check the ingredients in the dye, some do have wheat germ oil or other wheat based stuff in them. I color my hair at home and there are quite a few safe dyes, I use Garneir Nutritioneste and some times an herbal dye called Herbatint. There are others. I am glad to hear your having those levels checked. Make sure they also have checked you for anemia.

I have had a lot of issues with hair loss and I took a vitamin by Country Life that was specifiacally for hair and nails and I also take biotin on occasions when I get glutened. I also took Royal Jelly for a while and that seemed to help.

Hopefully your hair loss will be temporary and you will start noticing some regrowth soon. It can take some time though. It took about 3 months for me to really notice a difference after I switched shampoos and dyes as well as being super strict on the diet.

Your not alone and hopefully others will have some good advice also.

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I was getting quite distraught about my hair loss, too, especially at the front. I had always had "too much" hair according to some hairdressers, :lol: but I was starting to look like a little old lady with receding hairline and almost bald patches at the front, and trying to bulk it up to make it look like I had more, and bring more and more hair forward into my bangs. This continued on after I quit gluten, and it wasn't until I got my nutrient levels (D, B12, folic acid, B vitamin complex, multimineral, that I really started noticing improvement. I had been away and not seen my hairdresser for four months until this month. She commented on how much more hair I had and how it was shining (I had noticed too :D ) So don't give up hope and make sure to get your vitamin and mineral levels where they should be. Initially you will probably need to do a sublingual B12 to absorb it properly, and take a higher dose than they recommend of D to "fill up your tank" and then drop back to a maintenance dose, otherwise you will just be maintaining yourself at the low level (if your levels test low).

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I had lost most of my hair one time in high school and the hospital said that I was severly vitamin deficient. My hair grew back but has had periods where it started thinning again. Now, 28 years later & gluten free, my hair is healthy and my nails have gotten much stronger too. I guess that I should start paying closer attention to my shampoo too.

Now that I think about it, I lost a little hair after going gluten free but that might have been because I had a sudden weight loss right in the beginning.

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I have been gluten free for about 7 months. I had a check with my gastroenterologist at 4 months post endoscopy, and asked him to check my thyroid, iron, vit D and Vitamin B12 levels. They told me all were fine (which I found surprising, but I take vitamins). Shortly after that, my hair started to fall out like crazy. At first I thought it might be due to an accidental glutening in mid Sept, but it is still falling out. I finally did a hair count after yesterdays shower - 919 strands! :o Thank goodness I (had) thick hair, but its getting noticeable. Coincidentally, yesterday I noticed bruising on my arms & don't remember hitting anything, but I remember getting bumped by someone. Could my iron change that fast? I'm looking for answers. Yes I use gluten free shampoo & product, but I dont know if my hairdressers shampoo is gluten-free. I only go there once a month though. Any ideas would be much appreciated! 

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In addition to checking  products for gluten-free issues, the particular vitamin that supports hair and nails is called biotin. It is included in most multivitamin s, multi b complex vitamins, but if some people do get enough from diet they may need to add a single biotin supplement.

B vitamins are  water soluble so they are not stored by the body. When I get glutened and cc I lose hair, after my  challenge my hair suffered for quite sometime vs my gluten-free years. It takes times the cells are competing for limited nutrients in the commonly malabsorped nutrient celiac body. Good luck

Edited by Awol cast iron stomach
Spelling error

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5 hours ago, jjamstoU2 said:

I have been gluten free for about 7 months. I had a check with my gastroenterologist at 4 months post endoscopy, and asked him to check my thyroid, iron, vit D and Vitamin B12 levels. They told me all were fine (which I found surprising, but I take vitamins). Shortly after that, my hair started to fall out like crazy. At first I thought it might be due to an accidental glutening in mid Sept, but it is still falling out. I finally did a hair count after yesterdays shower - 919 strands! :o Thank goodness I (had) thick hair, but its getting noticeable. Coincidentally, yesterday I noticed bruising on my arms & don't remember hitting anything, but I remember getting bumped by someone. Could my iron change that fast? I'm looking for answers. Yes I use gluten free shampoo & product, but I dont know if my hairdressers shampoo is gluten-free. I only go there once a month though. Any ideas would be much appreciated! 

Did you stop your supplements before they tested your levels?  Your doctor should have told you to do so for a couple weeks so they could get an accurate level. You might want to get an appointment with a dermatologist to get things checked out. Do bring your own shampoo and styling products to the hairdresser with you to be on the safe side. I do it whenever I am getting cut. They have never objected. Most sylists will not object if you want to look at the ingredients in the products they are using if you don't want to bring your own. May not be the case with you but I lose hair if my products contain soy protein but I also have to avoid eating soy as well.

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12 hours ago, ravenwoodglass said:

Did you stop your supplements before they tested your levels?  Your doctor should have told you to do so for a couple weeks so they could get an accurate level. You might want to get an appointment with a dermatologist to get things checked out. Do bring your own shampoo and styling products to the hairdresser with you to be on the safe side. I do it whenever I am getting cut. They have never objected. Most sylists will not object if you want to look at the ingredients in the products they are using if you don't want to bring your own. May not be the case with you but I lose hair if my products contain soy protein but I also have to avoid eating soy as well.

Thanks, they did not ask me to stop supplements before my tests, because they told me I didn't need any! I am not too thrilled with my doc. They just said they'd go based on how I was feeling. I told them I was still tired all the time (this was in Aug, that has gotten better), and wasn't sure I wasn't missing something gluten wise. He said he was "sure I was doing well with the diet" and had no explanation for why I was tired. He "diagnosed" me with also having IBS, but I think 4 months out is way to soon to jump into something else without getting the celiac stuff straightened out. They only tested me that day based on my request from things I have read online. Its very frustrating. And now the past week or two I am getting a flushed, hot face sometimes. (and no, its not hot flashes, those feel completely different for me). So I think I have some other food sensitivity? Of course now its the holidays and it will be so hard to figure out. Hope I still have some hair by new years! I have an appt with the dermatologist, but it is 2 weeks out. I just left a message with my doc about my iron levels, because years ago my hemoglobin was fine but my stores were very low. Just another sign that I had something wrong - been anemic all my life and no one could ever tell me why. 

I will start paying more attention at the hairdressers. I haven't had a problem with topical gluten so far, I just make sure she doesn't use any gluten sprays. At home I use gluten-free hair products so they don't run in my mouth or get on my hands. 

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