New Here...hair Loss And Gluten Intolerant

[smiley1nyc]

i was just told that i had gluten intolerance!!! i also have thyroid anti bodies, but my free T3 and T4 are ok and so is my tsh. for the last 1 1/2yrs. i i have been looseing hair i have probally lost 70% and it had turned considerbly grey, dry brittle, and texture change. MY hair use to be very long tight curls and thick now it looks dead!!!! I want this to stop!!! i was diagnosed by a dr. who tested me by a saliva test. when this all started i first developed mouth ulcers very painful all in the sides of my cheeks. the last time i had these was 8 months ago. i was very sick stomach problems i lost alot of weight due to a diet an d diet pills i was on. i also have severe adrenal stress. i'm not sure how to treat all this. my dr. days by the diet and does not want to give me thyroid meds or hc for the adrenals. ANy advice. How long before your hair stops to fall, and grow back once on the diet? thanks for your help.

[Felidae]

I had mouth ulcers and greying hair that was falling out. These things stopped when I went off gluten. The mouth ulcers stopped immediately. Hair regrowth takes some time, but mine is much thicker than it used to be. Also, I am not turning grey anymore. It really was unbelievable because I thought that being gluten-free would just help my gi issues, but it gave me so many other wonderful and unexpected results.

I think that thyroid issues also relate to hair loss and condition. I know there are some thyroid experts here that should post. But, going gluten-free would be of great benefit to you.

[SunnyDyRain]

I am in the same boat as you, used to long thick hair, now it's thin and thinning. thank god it's not greying (i'm only 26!). I've been gluten free for 3 weeks today, and in the past week i've noticed less hair in the drain. nothing more with re growth, but just less actively loosing. I also have thin and brittle nails. I expect my nails to take 6 mo, and hoping for myhair to be at least somwhat improved by then.

My doctor also says i have a "touch of hypothyroisism" meaning my levels are low in normal range and for my age they should be higher. Maybe gluten-free will help that also.

[smiley1nyc]

thanks everyone for responding this is all new. Ineed to start this diet and go shopping question can i have sugar? Dairy? equal? coffee? i undertand the gluten part, but wasn't clear about the sugar or dairy..and is ezekial (hope spelled right)bread gluten free? all the advice i can get would help...also i was diagnosed through a saliva test is this accurate?

thanks aso much..

I am in the same boat as you, used to long thick hair, now it's thin and thinning. thank god it's not greying (i'm only 26!). I've been gluten free for 3 weeks today, and in the past week i've noticed less hair in the drain. nothing more with re growth, but just less actively loosing. I also have thin and brittle nails. I expect my nails to take 6 mo, and hoping for myhair to be at least somwhat improved by then.

My doctor also says i have a "touch of hypothyroisism" meaning my levels are low in normal range and for my age they should be higher. Maybe gluten-free will help that also.

[smiley1nyc]

About the mouth ulcers i'm not sure if this relates but almost everytime i did get them it was after i drank alcohole(wine). most the time i'm not much of a hard alcohole drinker inless it's a mixed drink. are you allowed to have wine?

I had mouth ulcers and greying hair that was falling out. These things stopped when I went off gluten. The mouth ulcers stopped immediately. Hair regrowth takes some time, but mine is much thicker than it used to be. Also, I am not turning grey anymore. It really was unbelievable because I thought that being gluten-free would just help my gi issues, but it gave me so many other wonderful and unexpected results.

I think that thyroid issues also relate to hair loss and condition. I know there are some thyroid experts here that should post. But, going gluten-free would be of great benefit to you.

[ravenwoodglass]

thanks everyone for responding this is all new. Ineed to start this diet and go shopping question can i have sugar? Dairy? equal? coffee? i undertand the gluten part, but wasn't clear about the sugar or dairy..and is ezekial (hope spelled right)bread gluten free? all the advice i can get would help...also i was diagnosed through a saliva test is this accurate?

thanks aso much..

Hi and welcome. Sugar, coffee and equal are all fine. I don't believe the bread you refer to is though. Remember wheat free is not always gluten free. You need to avoid wheat, rye, barley and oats. Ener-G and Kinnickinnick are a couple good ones. The best way to heal at first is to try and eat as much naturally gluten free food as you can. Fruit, veggies, beans, potatoes, rice, eggs, unprocessed meats, fish and chicken. Do as much reading here as you can.

I had lost a great deal of hair prediagnosis and was also going grey even in my teens. Once I got all gluten out of my food and non food items, especially shampoos and such I started to see regrowth within a couple of months. Even a bit of cc will cause my hair to fall again but it will stop after a week or so.

Hang in there and become as familiar as you can with CC an non food gluten sources.

[SunnyDyRain]

thanks everyone for responding this is all new. Ineed to start this diet and go shopping question can i have sugar? Dairy? equal? coffee? i undertand the gluten part, but wasn't clear about the sugar or dairy..and is ezekial (hope spelled right)bread gluten free? all the advice i can get would help...also i was diagnosed through a saliva test is this accurate?

thanks aso much..

I don't know much about the saliva test, sorry.

"Gluten Free" means no wheat, no barley, no oats, no monosodium glutimate (msg), and some other lesser known grains.

Many people with Celiac, also have other food sensitivites, and many fade as intestines heal. They can be, dairy or casien, corn, soy, artfical sweeteners, caffine, raw veggies or eggs. Some people find other things also.. these are just the ones I know off hand. I personally cannot handle artfical sweeteners, unprocessed corn and raw veggies.

I'd suggest going gluten free, keep it basic... if you get symtoms, evaluate what you ate, if you find you had dairy... see if next time you have dairy your sick again.

As far as mouth sores, I had them, never really associated with celiac however, more associated with acidic foods - tomatoes, OJ, vinegar. It may be Dermatitis Herpetiformis occuring in the mouth, but wine is a safe food, so that seems unlikely.

Good Luck, I'm on Day 21 and I'm feeling better allready! (except for the past 2 days... I was glutened on sunday! )

[SunnyDyRain]

I had lost a great deal of hair prediagnosis and was also going grey even in my teens. Once I got all gluten out of my food and non food items, especially shampoos and such I started to see regrowth within a couple of months. Even a bit of cc will cause my hair to fall again but it will stop after a week or so.

The bit about the shampoo bothers me, I've continued to use the same shampoo, even though it has "wheat protiens" in it.... it's really expenive and does a pretty good job of thickening my hair!

I wondering if it is hurting me... I use it every other day and am careful to not get my hair in my mouth.

[Kyalesyin]

My wife's hair pretty much stopped growning and was falling out in places. Eight months on its now longer and thicker than mine, which is saying something...

Take your vitamins, because a lack of vitamins can slow up hair growth and make it a poorer quality.

[smiley1nyc]

Do i really have to change my shampoo and conditioner? Since all this i have developed dandruff, and my hair is so dry very few things seem to work. How about the hair gels and styleing products. i only wash my hair twice a week fear of going bald... does the gluten intolerance cause the thyroid antibodies, and the adrenal stress, they also found moderat levels of parasites in me i can't remember the name i have it at home maaybe this contributed to the GI? So dairy is OK!!! and sugar? My dr. said no sugar why? She said i should so a atkins type of diet is she right or should i follow gluten free diet? could anyone reccomend a good book to follow.c

Thanks everyone i'm sure i will have so many more questions, i appreciate everyones help...

Hi and welcome. Sugar, coffee and equal are all fine. I don't believe the bread you refer to is though. Remember wheat free is not always gluten free. You need to avoid wheat, rye, barley and oats. Ener-G and Kinnickinnick are a couple good ones. The best way to heal at first is to try and eat as much naturally gluten free food as you can. Fruit, veggies, beans, potatoes, rice, eggs, unprocessed meats, fish and chicken. Do as much reading here as you can.

I had lost a great deal of hair prediagnosis and was also going grey even in my teens. Once I got all gluten out of my food and non food items, especially shampoos and such I started to see regrowth within a couple of months. Even a bit of cc will cause my hair to fall again but it will stop after a week or so.

Hang in there and become as familiar as you can with CC an non food gluten sources.

[smiley1nyc]

My hairloss is a difussed hairloss, i have been told that it was TE, female hairloss, stress and put on all sorts of vit. and meds for female hairloss. Since i'm adopted i dont know my back round, but i'm greek and did have a ton of hair. does it matter if the hairloss is difussed or patchy?

My wife's hair pretty much stopped growning and was falling out in places. Eight months on its now longer and thicker than mine, which is saying something...

Take your vitamins, because a lack of vitamins can slow up hair growth and make it a poorer quality.

[ravenwoodglass]

The hair loss can be either diffuse or patchy. Some lose it from all over. That was me most was in the front, at the temples and I had a bald spot at the back of my head. My DH had his come out in circular patches, alopecia.

With gluten intolerance you are having an autoimmune response. Where that response does the most damage can be different for different people. It can attack the joints, skin, brain, pancreas, pretty much any system. That is one reason it can be so hard to diagnose, the symptoms are so varied.

Yes you really do need to get rid of the gluten in those hair products, unless of course you want to continue having it fall out and break. You also need to eliminate it in all of your cosmetics and bath products. You even have to avoid kissing a significant other after they have just consumed either gluten food or drink. I know it sounds extreme but even a small amount can keep the antibody reaction going or reactivate it.

Be sure to check out the products section of the board. Many products are safe and if you have doubt there is usually a number you can call on the product itself to ask if it contains wheat germ oil or Vitamin E derived from wheat germ oil or oats.

A couple for sure gluten-free treatments for your hair are warm olive oil or coconut oil. Apply then take a hot bath and shampoo as usual. I also use a light amount of coconut oil on my dry hair if needed to control the frizzies.

[smiley1nyc]

i read that the gluten intolerance is only if taken internal? i feel like i have to live in a bubble. how can i go away and stay in a hotel not knowing the laundry detergent they use or hug someone? this seems a bit much i never recall feeling sick or anything from kissing, or hugging someone? And on make up and hair products what ingriedient am i looking for? just wheat? is there a list that they have listing products that are gluten free? this is a lot to digest i don't know if i can live like this? i'm a nanny i take care of an infant i have to bath her and change her and feed her? i need my job...this is alot..thanks for the information and you help..

The hair loss can be either diffuse or patchy. Some lose it from all over. That was me most was in the front, at the temples and I had a bald spot at the back of my head. My DH had his come out in circular patches, alopecia.

With gluten intolerance you are having an autoimmune response. Where that response does the most damage can be different for different people. It can attack the joints, skin, brain, pancreas, pretty much any system. That is one reason it can be so hard to diagnose, the symptoms are so varied.

Yes you really do need to get rid of the gluten in those hair products, unless of course you want to continue having it fall out and break. You also need to eliminate it in all of your cosmetics and bath products. You even have to avoid kissing a significant other after they have just consumed either gluten food or drink. I know it sounds extreme but even a small amount can keep the antibody reaction going or reactivate it.

Be sure to check out the products section of the board. Many products are safe and if you have doubt there is usually a number you can call on the product itself to ask if it contains wheat germ oil or Vitamin E derived from wheat germ oil or oats.

A couple for sure gluten-free treatments for your hair are warm olive oil or coconut oil. Apply then take a hot bath and shampoo as usual. I also use a light amount of coconut oil on my dry hair if needed to control the frizzies.

[ravenwoodglass]

i read that the gluten intolerance is only if taken internal? i feel like i have to live in a bubble. how can i go away and stay in a hotel not knowing the laundry detergent they use or hug someone? this seems a bit much i never recall feeling sick or anything from kissing, or hugging someone? And on make up and hair products what ingriedient am i looking for? just wheat? is there a list that they have listing products that are gluten free? this is a lot to digest i don't know if i can live like this? i'm a nanny i take care of an infant i have to bath her and change her and feed her? i need my job...this is alot..thanks for the information and you help..

It is also absorbed through the mucous membranes as well. Some countries test for intolerance by suppository and biopsy of the cheek or rectum for this reason. You will gluten yourself if you have a gluten lotion on or are using a gluten shampoos.

I didn't know this at first and I continued not only to have frequesnt GI problems but my hair never stopped falling out and the skin lesions I had didn't heal until I found out over 6 months after diagnosis that I needed to look at not just food. Within a short time of following this advice my hair began to grow back, and brown not white, and my skin problems finally went away. I was 45 at the time and had endured ugly oozing sores since childhood. If I use a non gluten-free shampoo the hair will start to fall out within a couple of days and I will look like I rolled in poison ivy.

Don't worry about hugs, the issue with kisses is that if the other person still has some eh 'residue' from the food or drink you would be injesting it.

the ingredients you need to look for in cosmetics and in shampoos etc are the aforementioned 'wheat germ oil, vitamin E and oats.

As far as traveling and restaurants go it can be done by most. Those of us who can't are usually the folks who went undiagnosed into for many, many years.

Most folks feel very overwhelmed at first, but it is very doable. I am fortunate to live in an area that has aWegmans, they label all gluten-free food with a little circle G. If the store is near you they are the best. Walmart is also getting on the band wagon also and labels any of their gluten-free products.

If you are using things on the baby that are not safe and don't want or can't change them simply wear gloves when bathing her. That is what I do when I work with the gluten glues I have to use with my stained glass work.

Hang in there, you have the knowledge now of what is causing your problems. You also have the power to deal with the changes that you will have to make to live a long, thick haired, healthy life. There is a bit of a grieving process that goes with it, in part because the neurotoxicity of the gluten causes a form of withdrawl. It does pass.

[Felidae]

About the mouth ulcers i'm not sure if this relates but almost everytime i did get them it was after i drank alcohole(wine). most the time i'm not much of a hard alcohole drinker inless it's a mixed drink. are you allowed to have wine?

You can absolutely drink wine.

[Felidae]

"Gluten Free" means no wheat, no barley, no oats, no monosodium glutimate (msg), and some other lesser known grains.

Okay, someone correct me if I'm wrong. MSG is gluten-free, so you can eat it if you want. There are other reasons not to though, but that's for a whole other discussion.

[smiley1nyc]

thanks for all your information...i'm not sure if we have a wegmans i live in nyc...It's going to be hard going on vacation...why is my Dr. saying that i can't ear dairy and sugar i'm very confussed? Should i go off that also

so in the products any type of wheat?protain ect...any type of vit. E? my hair products contain wheat protien so i guess thats out..i have already called all the make up companies and they are emailing me info...i have never had any skin problems though do i still need to avoid the creams and stuff? Mostly with the baby? i use aquaphor,cetaphil and A$d ointment on her and thats really it..thanks for all your help

It is also absorbed through the mucous membranes as well. Some countries test for intolerance by suppository and biopsy of the cheek or rectum for this reason. You will gluten yourself if you have a gluten lotion on or are using a gluten shampoos.

I didn't know this at first and I continued not only to have frequesnt GI problems but my hair never stopped falling out and the skin lesions I had didn't heal until I found out over 6 months after diagnosis that I needed to look at not just food. Within a short time of following this advice my hair began to grow back, and brown not white, and my skin problems finally went away. I was 45 at the time and had endured ugly oozing sores since childhood. If I use a non gluten-free shampoo the hair will start to fall out within a couple of days and I will look like I rolled in poison ivy.

Don't worry about hugs, the issue with kisses is that if the other person still has some eh 'residue' from the food or drink you would be injesting it.

the ingredients you need to look for in cosmetics and in shampoos etc are the aforementioned 'wheat germ oil, vitamin E and oats.

As far as traveling and restaurants go it can be done by most. Those of us who can't are usually the folks who went undiagnosed into for many, many years.

Most folks feel very overwhelmed at first, but it is very doable. I am fortunate to live in an area that has aWegmans, they label all gluten-free food with a little circle G. If the store is near you they are the best. Walmart is also getting on the band wagon also and labels any of their gluten-free products.

If you are using things on the baby that are not safe and don't want or can't change them simply wear gloves when bathing her. That is what I do when I work with the gluten glues I have to use with my stained glass work.

Hang in there, you have the knowledge now of what is causing your problems. You also have the power to deal with the changes that you will have to make to live a long, thick haired, healthy life. There is a bit of a grieving process that goes with it, in part because the neurotoxicity of the gluten causes a form of withdrawl. It does pass.

[ravenwoodglass]

thanks for all your information...i'm not sure if we have a wegmans i live in nyc...It's going to be hard going on vacation...why is my Dr. saying that i can't ear dairy and sugar i'm very confussed? Should i go off that also

so in the products any type of wheat?protain ect...any type of vit. E? my hair products contain wheat protien so i guess thats out..i have already called all the make up companies and they are emailing me info...i have never had any skin problems though do i still need to avoid the creams and stuff? Mostly with the baby? i use aquaphor,cetaphil and A$d ointment on her and thats really it..thanks for all your help

Your doctor is right about the dairy issue. The part of your small intestine that is damaged by gluten produces the enzeme you need to digest dairy. You may, as many have found, that after a couple of months you are able to tolerate it again. Just start at first with hard cheeses and yogurt.

With the sugar issue, your doctor may have found that you are what they call prediabetic. This is quite common with people with celiac disease. I was diagnosed diabetic last year and from what my doctor said, (cause I sure don't fit the profile of one), was that the autoimmune reaction from the celiac had damaged my pancreas. I followed a diabetic diet very strictly, with none of their nasty meds for about 6 months and now have blood sugar in the normal ranges and can tolerate a bit of sugar with no spike in blood sugar.

On the shampoo and lotion issue, many brands are quite good about labeling. You did the right thing by calling about your makeup, that can be tricky at first. A couple of good brands that will absolutely label wheat or wheat derived Vit E or oats are Suave, they make a lot of products we can use, (I love their new scented lotions and shampoos), Dove is another good company. There are others of course.

Check out the section on traveling or feel free to post 'traveling specific' questions. I still have quite a bit of neuro damage that keeps me close to home but my son, daughter and husband travel fairly freqently and it is quite doable.

[smiley1nyc]

i'm becoming very confussed because everyone here says they get very sick!!!! nausea, skin irritation, i don't seem to get this..Myskin is fine it's my hair! but wouldn't the hair on the rest of my body fall out also? this is all very bizzare..all of a sudden!!And dairy i never had any symptoms with dairy or sugar!!!the dr.'s reason for not taking dairy or sugar was that it's not good for you, she said i need to follow a atkins diet, but thats not gluten free...And most of the products at the whole food in nyc claim they are glutten free, but may have coss contamination?so what do i but? i'm so confussed..i was looking forward to my vacation in AUG. now it's gonna suck!! i probally won't eat, i don't know how i'm going to..Can you reccomend a good book on food list's anfd reciepies, i'd really appreciate it..

Your doctor is right about the dairy issue. The part of your small intestine that is damaged by gluten produces the enzeme you need to digest dairy. You may, as many have found, that after a couple of months you are able to tolerate it again. Just start at first with hard cheeses and yogurt.

With the sugar issue, your doctor may have found that you are what they call prediabetic. This is quite common with people with celiac disease. I was diagnosed diabetic last year and from what my doctor said, (cause I sure don't fit the profile of one), was that the autoimmune reaction from the celiac had damaged my pancreas. I followed a diabetic diet very strictly, with none of their nasty meds for about 6 months and now have blood sugar in the normal ranges and can tolerate a bit of sugar with no spike in blood sugar.

On the shampoo and lotion issue, many brands are quite good about labeling. You did the right thing by calling about your makeup, that can be tricky at first. A couple of good brands that will absolutely label wheat or wheat derived Vit E or oats are Suave, they make a lot of products we can use, (I love their new scented lotions and shampoos), Dove is another good company. There are others of course.

Check out the section on traveling or feel free to post 'traveling specific' questions. I still have quite a bit of neuro damage that keeps me close to home but my son, daughter and husband travel fairly freqently and it is quite doable.