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newgirl88

Are These Normal Symptoms For Anyone Else?

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I have been on the gluten-free diet since August 07'. When I consume the smallest amount of gluten, I can barely walk due to insane amounts of joint pain and burning. It takes about 24 hours and lasts about 24-48 hours. Before I was diagnosed I was only having it in my knees, very bad. But after I went on the gluten-free diet, I started getting pain in my hips and upper extremities now. Starting about a 2 months ago when I accidentally consume it my skin is extremely sensitive and feels bruised when anything touches it, even a finger. It really sucks. My doctor says that it is pinched nerves from the gluten, but it sometimes happens even when I don't consume gluten. He says that it is getting worse because I am still healing, as it has not even been a year on the diet. But does it make sense for it to keep spreading throughout my body even though I am on the diet? It makes me think something else is wrong, too. Also, at the exact same time my celiac was triggered, I started losing significant amounts of hair. The doctors I have seen for it says it is falling too rapidly to be hereditary, and it is not a dermatological issue. I have been losing it now for 1 year and 3 months and my hair is getting extremely thin. My hair still grows, but I don't have any new growth replacing what has fallen out, and it will not stop. I have been to so many doctors and had SO many tests done and no one can find out why it is falling out. I am so scared that I will eventually lose it all. Could it be that my body still needs healing before my hair will stop falling out? Will it ever come back? I am so afraid. I have never heard of hair loss as a side effect of celiac. Is this normal or unheard of?, since all these specialists I pay a million dollars to don't know. Thank you for your help!

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I have been on the gluten-free diet since August 07'. When I consume the smallest amount of gluten, I can barely walk due to insane amounts of joint pain and burning. It takes about 24 hours and lasts about 24-48 hours. Before I was diagnosed I was only having it in my knees, very bad. But after I went on the gluten-free diet, I started getting pain in my hips and upper extremities now. Starting about a 2 months ago when I accidentally consume it my skin is extremely sensitive and feels bruised when anything touches it, even a finger. It really sucks. My doctor says that it is pinched nerves from the gluten, but it sometimes happens even when I don't consume gluten. He says that it is getting worse because I am still healing, as it has not even been a year on the diet. But does it make sense for it to keep spreading throughout my body even though I am on the diet? It makes me think something else is wrong, too. Also, at the exact same time my celiac was triggered, I started losing significant amounts of hair. The doctors I have seen for it says it is falling too rapidly to be hereditary, and it is not a dermatological issue. I have been losing it now for 1 year and 3 months and my hair is getting extremely thin. My hair still grows, but I don't have any new growth replacing what has fallen out, and it will not stop. I have been to so many doctors and had SO many tests done and no one can find out why it is falling out. I am so scared that I will eventually lose it all. Could it be that my body still needs healing before my hair will stop falling out? Will it ever come back? I am so afraid. I have never heard of hair loss as a side effect of celiac. Is this normal or unheard of?, since all these specialists I pay a million dollars to don't know. Thank you for your help! quote

Yes, is NORMal for you to lose you hair with celiac disease...when your intestines are healed it will come back...the healing process is not the same for any two people...somewhat depends on how long you were sick before going gluten-free. Same can go for the joint and skin pain but has your Dr. considered fibromylagia? Many celiacs have that too, many say that not eating foods from the nightshade family is helpful for ridding fibro pain. Glad you found this forum...a lot of helpful people here...just keep up the questions and you will get help. 'Good health to you' :rolleyes: evie

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Hi,

Wow, you really are going through it. It sounds like you are having major malabsorption problems. Are you taking vitamin D or cod liver oil, a good calcium (I use E-zorb since nothing else works for me--I have read about it nowhere but on the net. However my mother who reads scientific american all the time remembers there was this big investigation in China to find something to cure calcium malabsorption in their country and finally found a cure so I think this is it. In any case it works for me!), liquid sea minerals, kelp powder caps, primrose oil, probiotics, and for me so essential: co-enzyme B vitamins (I like Country Life since they don't have the sometimes debatable sorbitol).

This last helped me to detox better as well as be less achey especially in my legs and feet. My myelin sheeth was deteriorating (down to 50%!!--despite being on an anti gluten diet except for some hidden glutens) and taking these much more absorbable co-enzyme B's stopped it. As well of course continuing on being very nittly with avoiding all traces of gluten in everything. I can now detox better and vigorously exercise and even use the sauna--all impossible before. All this recent nittiness in avoiding all trace gluten has made a huge difference in getting rid of my previously achey joints.

I have noticed major differences in my hair and nails as a result of being on diet. I used to be able to peel my fingernails. My hair didn't fall out though I used to get a lot more that would come out in my comb and hair brush than these days when I come to think about it. It was thin and straight and now I actually have some body and a natural wave. My teeth finally hardened which was amazing in itself. Again the anti gluten diet and now, years later, the co-enzyme b's and the e-zorb etc. etc. and the recent avoiding all traces of gluten all have made a huge difference.

Strongly consider using enzymes for digestion and also away from meals to help heal the lining of your intestines. Bromelain/papain and pancreatin with food; and bromelain/papain plus nattokinase away from food to heal the lining of the gut.

Also consider taking the standard western detox herbs that many of our ancestors relied on: dandelion root, yellow dock, burdock root, licorice root, oregon grape root, etc. etc. I have listed these in other posts for further info. You can also read books and find them on the net.

Other things to consider are herbs that heal and soothe the lining of the gut--marshmallow root and slippery elm. They are champs! Do consider using them.

Also consider reading the Dangerous Grains by James Braly, MD and Ron Hoggan, MA for more understanding about this condition in general.

Hope this helps. Please let me know if it does or not.

Yolo

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In addition to the great advice you already gotten, has your doctor told you to eliminate gluten in your toiletries, lotions and cosmetics? Have you checked every script you are on and every OTC med? Do you think you may be getting cc'd at restaurants or do you have messy gluten eaters at home? Do you do a lot of crafting or are you remodeling your home? Many of the products used are not safe for us and we need to use precautions when using. Do you have pets that eat gltuen containing food? Licks and petting are a source of CC even when being careful feeding.

It does take some time to heal and as we heal we often become more sensitive to small amounts of gluten. This seems bad but it really isn't, your body as it gets rid of the massive amounts of the offending substance will react to tiny amounts to try and protect you. Many times it is gluten sneaking in where we least expect it or through items that are 'gluten free by ingredient but not by processing'. You may want to consider going with naturally gluten free unprocessed foods for a bit to give your body the chance to heal with not accidental gluten sneaking in.

I also have had a lot of problems with hair loss, and after getting the gluten out of everything I added a 'hair and skin' vitamin by country life called Maxi Hair and I also use Royal Jelly and digestive enzymes. 4 months ago when I added the Royal Jelly and digestive enzymes I had a great deal of hair loss with large thin spots on the sides and the front. I got real good at combovers. My regrowth has been such that I actually cut my hair real, real short last week. Not only have the thin spots filled in but a place in the back of my head that I scarred in a fall years ago is now not even noticeable. Don't know if it was due to the Royal Jelly or the digestive enzymes, I added both at the same time but I do know with the digestive enzymes I can eat meat again and seem to be finally gaining back the weight I lost last spring after a bout with pancreatitis.

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Guest Cari5393

You should look into having your thyroid ckecked. I have hypothyroidism and the first sign that is to out of wack is my hair falls out. I know that Celiac and hypo/hyper thyroidism are both autoimmune things, and when you have one you are more likely to have another. For me the thyroid problems were diagnosed before the Celiac, but both Dr.s say they can go hand in hand. Other signs of thyroid problems are joint pain, weight loss/gain, headaches pretty much the same as Celiac symptoms. :rolleyes: Just a thought.

Good luck figuring it out, and hang in there.

Cari

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You should look into having your thyroid ckecked. I have hypothyroidism and the first sign that is to out of wack is my hair falls out. I know that Celiac and hypo/hyper thyroidism are both autoimmune things, and when you have one you are more likely to have another. For me the thyroid problems were diagnosed before the Celiac, but both Dr.s say they can go hand in hand. Other signs of thyroid problems are joint pain, weight loss/gain, headaches pretty much the same as Celiac symptoms. :rolleyes: Just a thought.

Good luck figuring it out, and hang in there.

Cari

I agree with Cari, though for many the thyroid problems go away if on an anti celiac diet long enough and be sure to take a little extra iodine--I do with the kelp caps plus add seaweed to my diet. I say this since it did affect me and my ex. For both of us the low thyroid went away--and there were for both of us real added problems with taking thyroxine. There is this whole T-3 and T4 business you should look into if you are going to go the thyroxin route. I suggest you look at the Wilson's Thyroid Symdrome site for advice on this.

I think one of the reasons this may happen (i.e., thyroid problems) is that the malabsorption and leaky gut problems are way stressing out the system and so the adrenals go and then the thyroid. Herbs can help here too. The Wilson's Thryoid Syndorme site has a tincture my ex found very useful. Has Guggul and some other good stuff in it. Just make sure it has no gluten in the alcohol!

Yolo

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I agree with Cari, though for many the thyroid problems go away if on an anti celiac diet long enough and be sure to take a little extra iodine--I do with the kelp caps plus add seaweed to my diet. I say this since it did affect me and my ex. For both of us the low thyroid went away--and there were for both of us real added problems with taking thyroxine. There is this whole T-3 and T4 business you should look into if you are going to go the thyroxin route. I suggest you look at the Wilson's Thyroid Symdrome site for advice on this.

I think one of the reasons this may happen (i.e., thyroid problems) is that the malabsorption and leaky gut problems are way stressing out the system and so the adrenals go and then the thyroid. Herbs can help here too. The Wilson's Thryoid Syndorme site has a tincture my ex found very useful. Has Guggul and some other good stuff in it. Just make sure it has no gluten in the alcohol!

Yolo

Good advice but one caution about iodine, if you have DH it will keep it active or can cause new lesions. If you notice any skin problems after upping your iodine intake make sure it isn't DH rearing it's head.

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Hi,

I may be way off base here, but you never know. I'm not sure, but i think it's pretty rare to have your parathyroid checked. At least in my case it was. I had so many symptoms that pointed to celiac disease, that are also symptoms of parathyroid disease (bone pain). Unfortunately, I now have both. My parathyroid gland shut down because I wasn't absorbing any calcium for so long.

I know that I also have hair loss, but I have alopecia. Anemia can also cause your hair loss problem, as I'm sure you know.

But, I guess what I'm suggesting is that you make sure that out of the many tests you've had done, that you had your PTH levels checked. If not, maybe it wouldn't hurt. That way, you'd know if you were absorbing calcium or not and if this may be some of your problem.

As others have suggested, it could be a thyroid problem.

Just to let you know, I have been gluten free (I'm trying anyway) for a little over a year. My hair was just starting to feel a little thick again. It was very exciting! If I hadn't been accidently glutened so much in January, maybe it wouldn't have started to fall out again! My hair was so thick before that people that didn't really know me before I got so sick could not understand. I'd say my hair was falling out and they'd say, "but it's so thick" and I'd say "this is nothing, you have no idea". One sign of knowing that I've definately been glutened is the amount of hair on my office chair, my coat, and in my car. It's pretty bad. So I know how you feel. I hope you find some answers and begin to feel better.

Here's a link about parathyroid disease. As you can see, many of them overlap with celiac diease....

http://www.parathyroid.com/parathyroid-symptoms.htm

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I have been on the gluten-free diet since August 07'. When I consume the smallest amount of gluten, I can barely walk due to insane amounts of joint pain and burning. It takes about 24 hours and lasts about 24-48 hours. Before I was diagnosed I was only having it in my knees, very bad. But after I went on the gluten-free diet, I started getting pain in my hips and upper extremities now. Starting about a 2 months ago when I accidentally consume it my skin is extremely sensitive and feels bruised when anything touches it, even a finger. It really sucks. My doctor says that it is pinched nerves from the gluten, but it sometimes happens even when I don't consume gluten. He says that it is getting worse because I am still healing, as it has not even been a year on the diet. But does it make sense for it to keep spreading throughout my body even though I am on the diet? It makes me think something else is wrong, too. Also, at the exact same time my celiac was triggered, I started losing significant amounts of hair. The doctors I have seen for it says it is falling too rapidly to be hereditary, and it is not a dermatological issue. I have been losing it now for 1 year and 3 months and my hair is getting extremely thin. My hair still grows, but I don't have any new growth replacing what has fallen out, and it will not stop. I have been to so many doctors and had SO many tests done and no one can find out why it is falling out. I am so scared that I will eventually lose it all. Could it be that my body still needs healing before my hair will stop falling out? Will it ever come back? I am so afraid. I have never heard of hair loss as a side effect of celiac. Is this normal or unheard of?, since all these specialists I pay a million dollars to don't know. Thank you for your help!

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Because you body is beginning to sort itself out, it is likely that there is more demand being placed on your liver. Thinning hair and nails can often be an indication that the liver is struggling.

Before I realised I was Celiac, my hair had been falling out for some time. I took some Milk Thistle for a few weeks which is a good liver tonic along with a good boost of Vitamins, minerals and elements and good herb teas like Chamomile. Within 2 or 3 weeks my hair has stopped falling out and is much stronger and healthier (and so, undoubtedly is my liver!).

Years of Gluten, Carb and sugar abuse (albeit unknowingly) takes its toll on the body. Although most Celiacs obviously see the need to avoid Gluten, I am desperately trying to get the message out for them to avoid sugar as well. I know we love those yummy treats but they are killing us. We are taking in far more sugar than our bodies can process.

This is a message I have just posted on another thread and I will keep posting it because I keep seeing people who are Gluten-free but still sick and I want to help them!

~~~~~~

You know, what the great majority are completely oblivious of is the fact that EVERYONE is affected by gluten.

Those who ridicule you and make fun or try to thwart your efforts are also themselves affected by Gluten. They would never even consider that their Rheumatoid Arthritis, or their Fibromyalgia, or their IBS, or their headaches and Migraines, or their general debility is due to Gluten.

Hybridisation over the centuries has changed the Wheat particularly, from a simple protein structure into the more complex protein (Gluten) grain that the body is unable to process properly. Becoming Celiac is just one 'dis-ease' caused by this problem, which usually doesn

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In addition to the great advice you already gotten, has your doctor told you to eliminate gluten in your toiletries, lotions and cosmetics? Have you checked every script you are on and every OTC med? Do you think you may be getting cc'd at restaurants or do you have messy gluten eaters at home? Do you do a lot of crafting or are you remodeling your home? Many of the products used are not safe for us and we need to use precautions when using. Do you have pets that eat gltuen containing food? Licks and petting are a source of CC even when being careful feeding.

It does take some time to heal and as we heal we often become more sensitive to small amounts of gluten. This seems bad but it really isn't, your body as it gets rid of the massive amounts of the offending substance will react to tiny amounts to try and protect you. Many times it is gluten sneaking in where we least expect it or through items that are 'gluten free by ingredient but not by processing'. You may want to consider going with naturally gluten free unprocessed foods for a bit to give your body the chance to heal with not accidental gluten sneaking in.

I also have had a lot of problems with hair loss, and after getting the gluten out of everything I added a 'hair and skin' vitamin by country life called Maxi Hair and I also use Royal Jelly and digestive enzymes. 4 months ago when I added the Royal Jelly and digestive enzymes I had a great deal of hair loss with large thin spots on the sides and the front. I got real good at combovers. My regrowth has been such that I actually cut my hair real, real short last week. Not only have the thin spots filled in but a place in the back of my head that I scarred in a fall years ago is now not even noticeable. Don't know if it was due to the Royal Jelly or the digestive enzymes, I added both at the same time but I do know with the digestive enzymes I can eat meat again and seem to be finally gaining back the weight I lost last spring after a bout with pancreatitis.

Where do you get these vitamins? Can you give me the name brands, doses and the number to call? LOL

Seriously I need these. my hair has been falling out for 8 years now, I've been gluten-free for almost 11 monthes and have seen almost no improvment. I do take prenatal vitamins, but not too often as they can make me constipated.

I have three very noticeable bald spots, I've been told i should start shopping for a wig :(

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Hairloss and bone pain were actually my two biggest symptoms and helped me on my path to celiac diagnosis. I was putting up with the fatigue, but when my hair started falling out, I went to the doctor. My primary care physician checked hormone and thyroid levels (which were normal), said there was nothing she could do, and sent me to a dermatologist. The derm told me to use Rogaine--not something I wanted to do. So, I made an appointment with this hairloss specialist in NYC. I live in the midwest, so the doctor ordered extensive blood tests to be done before I saw him. My primary care doc did the blood work and figured out I was anemic. She then started checking out reasons why I was anemic. Turns out it was celiac.

I live near one of the best gastro-research hospitals in the country and they have been wonderful. I was put on an extensive vitamin regimen: iron, calcium, Vit D, and a multivitamin. What I've learned is that low-iron levels can acause hairloss. I've been gluten free for 10 months now. Before I was off the gluten and before I was taking the iron, I would lose a handful of hair every time I showered. Now, I don't lose any hair in the shower--lose just a normal amount when I come my hair, and I believe that the thin spots are starting to fill in.

The hospital also gave me a bone density test. My bone density was low--even though I'm premenopausal. My doctor explained that I do not have osteoporosis. I have osteomalacia. In children it is called rickets. Osteomalacia is caused when you are still growing new bone, but because of the absorption problems, the bone doesn't have enough mineral content and the bones are soft. You don't feel osteoporosis until something breaks, but osteomalacia is painful. I had pain in my back, neck, knees, feet, hips, and ribs. The good thing with osteomalacia is that you can recover from it. As the bone continues to regrow and as your absorption of calcium and vitamin D improves when you're off the gluten, your pain lessons. My doctor plans to give me a 2nd bone density test in another year. He said it should improve. I have noticed a huge improvement in the pain. I am able to shovel snow and mow the yard, and a year ago, all i could do was sit in the recliner with a cold pack on my back.

There is hope.

Keep asking questions.

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In addition to the great advice you already gotten, has your doctor told you to eliminate gluten in your toiletries, lotions and cosmetics? Have you checked every script you are on and every OTC med? Do you think you may be getting cc'd at restaurants or do you have messy gluten eaters at home? Do you do a lot of crafting or are you remodeling your home? Many of the products used are not safe for us and we need to use precautions when using. Do you have pets that eat gltuen containing food? Licks and petting are a source of CC even when being careful feeding.

It does take some time to heal and as we heal we often become more sensitive to small amounts of gluten. This seems bad but it really isn't, your body as it gets rid of the massive amounts of the offending substance will react to tiny amounts to try and protect you. Many times it is gluten sneaking in where we least expect it or through items that are 'gluten free by ingredient but not by processing'. You may want to consider going with naturally gluten free unprocessed foods for a bit to give your body the chance to heal with not accidental gluten sneaking in.

I also have had a lot of problems with hair loss, and after getting the gluten out of everything I added a 'hair and skin' vitamin by country life called Maxi Hair and I also use Royal Jelly and digestive enzymes. 4 months ago when I added the Royal Jelly and digestive enzymes I had a great deal of hair loss with large thin spots on the sides and the front. I got real good at combovers. My regrowth has been such that I actually cut my hair real, real short last week. Not only have the thin spots filled in but a place in the back of my head that I scarred in a fall years ago is now not even noticeable. Don't know if it was due to the Royal Jelly or the digestive enzymes, I added both at the same time but I do know with the digestive enzymes I can eat meat again and seem to be finally gaining back the weight I lost last spring after a bout with pancreatitis.

Wow, I can't wait for my hair to come back! It almost seems like it will never happen! I am very strict with gluten. I don't use gluten in any toiletries. I am extremely sensitive. Can you tell me more about this Royal Jelly and what kind of "digestive enzymes"? I don't know anything about these. thanks!

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You should look into having your thyroid ckecked. I have hypothyroidism and the first sign that is to out of wack is my hair falls out. I know that Celiac and hypo/hyper thyroidism are both autoimmune things, and when you have one you are more likely to have another. For me the thyroid problems were diagnosed before the Celiac, but both Dr.s say they can go hand in hand. Other signs of thyroid problems are joint pain, weight loss/gain, headaches pretty much the same as Celiac symptoms. :rolleyes: Just a thought.

Good luck figuring it out, and hang in there.

Cari

Thank you for the advice! I've been having it checked since January 07' and watch thyroid antibodies get higher and higher, which means I am at risk for developing thyroid disease, but have not yet. At one point I was hoping that's what it was, but I guess I will just have to be patient. :)

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Hi,

I may be way off base here, but you never know. I'm not sure, but i think it's pretty rare to have your parathyroid checked. At least in my case it was. I had so many symptoms that pointed to celiac disease, that are also symptoms of parathyroid disease (bone pain). Unfortunately, I now have both. My parathyroid gland shut down because I wasn't absorbing any calcium for so long.

I know that I also have hair loss, but I have alopecia. Anemia can also cause your hair loss problem, as I'm sure you know.

But, I guess what I'm suggesting is that you make sure that out of the many tests you've had done, that you had your PTH levels checked. If not, maybe it wouldn't hurt. That way, you'd know if you were absorbing calcium or not and if this may be some of your problem.

As others have suggested, it could be a thyroid problem.

Just to let you know, I have been gluten free (I'm trying anyway) for a little over a year. My hair was just starting to feel a little thick again. It was very exciting! If I hadn't been accidently glutened so much in January, maybe it wouldn't have started to fall out again! My hair was so thick before that people that didn't really know me before I got so sick could not understand. I'd say my hair was falling out and they'd say, "but it's so thick" and I'd say "this is nothing, you have no idea". One sign of knowing that I've definately been glutened is the amount of hair on my office chair, my coat, and in my car. It's pretty bad. So I know how you feel. I hope you find some answers and begin to feel better.

Here's a link about parathyroid disease. As you can see, many of them overlap with celiac diease....

http://www.parathyroid.com/parathyroid-symptoms.htm

I am so happy that someone knows how I feel about losing hair! I mean, not happy that it is happening to you, but it is definitely one of the loneliest thing in my life right now. Other people just don't understand it sometimes. But, my hair falls out a lot, all the time. Not just when I consume gluten. But I am sure my intestines still have a lot of healing to do! Thank you!

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Because you body is beginning to sort itself out, it is likely that there is more demand being placed on your liver. Thinning hair and nails can often be an indication that the liver is struggling.

Before I realised I was Celiac, my hair had been falling out for some time. I took some Milk Thistle for a few weeks which is a good liver tonic along with a good boost of Vitamins, minerals and elements and good herb teas like Chamomile. Within 2 or 3 weeks my hair has stopped falling out and is much stronger and healthier (and so, undoubtedly is my liver!).

Years of Gluten, Carb and sugar abuse (albeit unknowingly) takes its toll on the body. Although most Celiacs obviously see the need to avoid Gluten, I am desperately trying to get the message out for them to avoid sugar as well. I know we love those yummy treats but they are killing us. We are taking in far more sugar than our bodies can process.

This is a message I have just posted on another thread and I will keep posting it because I keep seeing people who are Gluten-free but still sick and I want to help them!

~~~~~~

You know, what the great majority are completely oblivious of is the fact that EVERYONE is affected by gluten.

Those who ridicule you and make fun or try to thwart your efforts are also themselves affected by Gluten. They would never even consider that their Rheumatoid Arthritis, or their Fibromyalgia, or their IBS, or their headaches and Migraines, or their general debility is due to Gluten.

Hybridisation over the centuries has changed the Wheat particularly, from a simple protein structure into the more complex protein (Gluten) grain that the body is unable to process properly. Becoming Celiac is just one 'dis-ease' caused by this problem, which usually doesn

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Hairloss and bone pain were actually my two biggest symptoms and helped me on my path to celiac diagnosis. I was putting up with the fatigue, but when my hair started falling out, I went to the doctor. My primary care physician checked hormone and thyroid levels (which were normal), said there was nothing she could do, and sent me to a dermatologist. The derm told me to use Rogaine--not something I wanted to do. So, I made an appointment with this hairloss specialist in NYC. I live in the midwest, so the doctor ordered extensive blood tests to be done before I saw him. My primary care doc did the blood work and figured out I was anemic. She then started checking out reasons why I was anemic. Turns out it was celiac.

I live near one of the best gastro-research hospitals in the country and they have been wonderful. I was put on an extensive vitamin regimen: iron, calcium, Vit D, and a multivitamin. What I've learned is that low-iron levels can acause hairloss. I've been gluten free for 10 months now. Before I was off the gluten and before I was taking the iron, I would lose a handful of hair every time I showered. Now, I don't lose any hair in the shower--lose just a normal amount when I come my hair, and I believe that the thin spots are starting to fill in.

The hospital also gave me a bone density test. My bone density was low--even though I'm premenopausal. My doctor explained that I do not have osteoporosis. I have osteomalacia. In children it is called rickets. Osteomalacia is caused when you are still growing new bone, but because of the absorption problems, the bone doesn't have enough mineral content and the bones are soft. You don't feel osteoporosis until something breaks, but osteomalacia is painful. I had pain in my back, neck, knees, feet, hips, and ribs. The good thing with osteomalacia is that you can recover from it. As the bone continues to regrow and as your absorption of calcium and vitamin D improves when you're off the gluten, your pain lessons. My doctor plans to give me a 2nd bone density test in another year. He said it should improve. I have noticed a huge improvement in the pain. I am able to shovel snow and mow the yard, and a year ago, all i could do was sit in the recliner with a cold pack on my back.

There is hope.

Keep asking questions.

I think my anemia is what helped my doctor too! I was anemic for months, and a few months ago I am not anymore. I am taking nature made for women multivitamin with calcium and iron. Only for about the past month though. I am glad to hear there is hope for getting back my long beautiful thick hair back! Now I keep cutting it because leaving a trail of short hair lying around is less noticeable than long hair. Thank you so much!

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I tried to respond to everyone individually as you have taken the time to respond to my questions. I wish I had more time but I have limited internet access. I just want to say thank you so much to every single person for all of your help and advice. You are really saving my life right now! -Grethe

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Thank you for the advice! I've been having it checked since January 07' and watch thyroid antibodies get higher and higher, which means I am at risk for developing thyroid disease, but have not yet. At one point I was hoping that's what it was, but I guess I will just have to be patient. :)

Hi NewGirl,

That makes sense. Many of us with celiac have low thyroid but not enough low to take any medications for it. Thus as I suggested try taking kelp to help balance yourself.

About the DH--well maybe taking kelp could bring it on--especially if you took too much, I don't know. I used to have DH and get it back if I eat gluten. I don't get it from taking 2 caps of kelp a day. Maybe if I was taking straight iodine I would--but that's not really very safe for anyone.

Just think about it, for us the gluten stresses out our systems so much that our adrenals and thryoid often gets stressed too. This takes a while to heal but it will. Meanwhile exercise I have found is the best medicine for this, assuming you are able, and however you are able.

Guggul and those other Wilson's thyroid remedies also help.

For me it also whacked my nervous system so that the myelin sheath was down to 50%. I believe that is way improving now that I am being more nitty with my non gluten diet plus taking the co-enzyme B vitamins from Country LIfe. My heart no longer has weird palpitations and my legs and feet tend to not ache at night anymore...

I also only rarely get the crud anymore whereas it used to be constant.

And my hair looks great!

Yolo

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Where do you get these vitamins? Can you give me the name brands, doses and the number to call? LOL

Seriously I need these. my hair has been falling out for 8 years now, I've been gluten-free for almost 11 monthes and have seen almost no improvment. I do take prenatal vitamins, but not too often as they can make me constipated.

I have three very noticeable bald spots, I've been told i should start shopping for a wig :(

Hi, I didn't check back on this post for a bit. Sorry it took so long.

I get the Maxi-hair vitamins and the Royal Jelly at my local health food store.

The Country Life vitamin is the Maxi Hair, it does contain Iodine and I have severe DH. I wasn't able to take it at first but after all my lesions were totally cleared it seemed okay and I have taken it now for a number of years.

I added the Royal Jelly and the digestive enzymes after lots of fall out due to a severe GI illnes. The Royal Jelly is just that a jelly, it is kept cold and is made by Y.S. Organic Bee Farms. It is full of lots of vitamins, including B12. I started it mainly because it is recommended for blood in the urine and alopecia in oriental medicine. It worked for the bleeding quite well, I don't know how but for the last month my pee has been clear and not foamy. Sorry TMI :D My hair and skin showed a notable difference in just a couple of weeks.

The digestive enzymes took a lot for me to take them, not real trusting of pills here, but they have worked wonders. No more clearly identifiable ingredients passing through any more and am gaining weight again, slowly but gaining. For me a needed thing. I take Super Enzymes made by NOW, They are free of any sugar, starch, yeast, wheat, gluten, soy, corn, milk, egg or preseratives.

Hope this helps and sorry it took so long for me to answer.

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Hi, I didn't check back on this post for a bit. Sorry it took so long.

I get the Maxi-hair vitamins and the Royal Jelly at my local health food store.

The Country Life vitamin is the Maxi Hair, it does contain Iodine and I have severe DH. I wasn't able to take it at first but after all my lesions were totally cleared it seemed okay and I have taken it now for a number of years.

I added the Royal Jelly and the digestive enzymes after lots of fall out due to a severe GI illnes. The Royal Jelly is just that a jelly, it is kept cold and is made by Y.S. Organic Bee Farms. It is full of lots of vitamins, including B12. I started it mainly because it is recommended for blood in the urine and alopecia in oriental medicine. It worked for the bleeding quite well, I don't know how but for the last month my pee has been clear and not foamy. Sorry TMI :D My hair and skin showed a notable difference in just a couple of weeks.

The digestive enzymes took a lot for me to take them, not real trusting of pills here, but they have worked wonders. No more clearly identifiable ingredients passing through any more and am gaining weight again, slowly but gaining. For me a needed thing. I take Super Enzymes made by NOW, They are free of any sugar, starch, yeast, wheat, gluten, soy, corn, milk, egg or preseratives.

Hope this helps and sorry it took so long for me to answer.

Thank you! I do not need to gain weight... but I hope once my body starts to digest things again (lots of identifiable things here too!) I will be able to finally loose some.

I want to get my hair back and get my skin improved... i LOOK sickly! I only get a few pimple like DH spots around my mouth.. but i have Very dry skin and what i call "chicken skin".

I will keep you posted on how I do!

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Thank you so much! I have a lot of new vitamins and things to try. :D

Just add them one at a time please. You want to know what does not agree with you if something doesn't. :)

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Thank you! I do not need to gain weight... but I hope once my body starts to digest things again (lots of identifiable things here too!) I will be able to finally loose some.

I want to get my hair back and get my skin improved... i LOOK sickly! I only get a few pimple like DH spots around my mouth.. but i have Very dry skin and what i call "chicken skin".

I will keep you posted on how I do!

Hi Sunny, I should have mentioned that I am also eating 1,000 calories over my reccommended amount. I have been aiming at 3,000 calories a day. I don't think I would worry about them causing a weight gain if your eating 'normal' number of calories for your needs. If you have been having issues with constant hunger and having trouble keeping your calorie intake down because of that the increase in absorption of nutrients may alleviate your constant hunger. Your brain may be triggering a hunger reflex in order to make up for nutrients you are not absorbing.

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Hi Sunny, I should have mentioned that I am also eating 1,000 calories over my reccommended amount. I have been aiming at 3,000 calories a day. I don't think I would worry about them causing a weight gain if your eating 'normal' number of calories for your needs. If you have been having issues with constant hunger and having trouble keeping your calorie intake down because of that the increase in absorption of nutrients may alleviate your constant hunger. Your brain may be triggering a hunger reflex in order to make up for nutrients you are not absorbing.

I have always been large.. Right before I was diagnosed I was able to loose 20 lbs, I have gained that back going gluten-free, but have not gained any additional since going gluten-free, and that is surprising being that I eat chocolate and potato chips like they are going out of style. I have huge issues with actually cooking and most often I turn to convience foods for meals rather than cooking... so lunches tend to be a chocolate bar and coffee. Dinner I usally get some nutrition... I still feel I have absorption issues because of i did not.... i should be huge.

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Kareng, I am a bit concerned by your statement here.  I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups.  And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet.  I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have tot
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