18 replies to this topic

[pamelaD]

Hi Jill,

My hair was falling out just as you describe.
I was diagnosed after gall bladder probs/removal and therefore was not eating well at all for about 2 or 3 months (lost 20 lbs!). I think, as you say, it is a symptom of vitamin deficiency.
I have been gluten-free for about 4 months now (and am feeling great). Over these four months my hairloss has been slowing down. It is still coming out, but not as much as at first. I have just gotten back on multivitamins and am hoping that will help, too.
Eat healthy, take a multivitamin, and try to relax! Don't worry, there is more hair on your head than you think!!

Be Healthy,
Pam

[Niteyx13]

My hair has been falling out for at least 6 years. I think it has gotten slightly better since my gluten-free diet started a month and a half ago. After all this falling out, it has never started getting bald...even though I feared it would. I had also found that dying it made it happen more. Keeping it has healthy as possible (pre-natal vitamins are great for your hair even when you are not pregnant), and I think going gluten-free has helped tons. So, hang in there, it will get better!

Deanna

[Sherquilts]

Hi there! My hair has been falling out a lot too and it was fine to begin with. I think it's because our bodys are not absorbing the nutrients that they should. My Doctor said it could take as long as a year for my intestines to heal. Been gluten-free for 6 weeks. Hang in there and try to eat a lot of protien as that is what hair is, all protien.

Sheryl

[Canadian Karen]

Also, make sure you get your thyroid checked. Hair loss is a symptom of hypothyroidism. And hypothyroidism is a common thing with celiac disease.

Don't worry, though.... Mine falls out in clumps when I am untangling it in the shower. What I have learned to do is rinse the shampoo out but not worry about the tangly part. I then put a Got2B conditioner in, and when I rinse out the conditioner, that's when I get the tangles out, when the hair is more smooth, and it doesn't pull as much.....

Have a great day!
Karen

[ravenwoodglass]

My hair fell out also, it got to the point where I estimate I lost about half of it before diagnosis. It is now almost two years and it has grown back, and the best part is the hair that has grown back is brown not grey. ( I started going grey at 16) The result is I now not only feel 20 years younger I look it too! Also many hair products contain gluten, everything from shampoos and conditioners to hair dye. I now read those labels very carefully. We had to throw out countless cosmetic products and I even researched and gave my son's girlfreind gluten free lipsticks as a gift. (I could tell when he was with her as his lips would look chapped and he would form small blisters!) Good luck read those labels and call manufacturers for everything, even toothpaste and soap.

[Carriefaith]

I had the same problem for awhile. I used to have lots of hair come out (More than normal) I thought I may have bald spots if it kept up.
Once I went gluten-free it stpped falling out so much. Thankfully!
-Carrie

[Kim]

Karen is right -- it could be nothing, but to be on the safe side, I would suggest you have your thyroid checked.

Kim, Atlanta, GA

[gf4life]

red345 accidently put this in a report to the moderator and it should have been the next reply:

Keep an eye on your hairloss and see if you end up having little circles of baldness. If so, you have, or are at least on your way to having a condition called Alopeecia Areata.

It is a condition that correlates with hypothyroidism. However, I believe it is more to do with the adrenal or thymus gland not working properly.

Your hair loss is not a direct result of celiac sprue. Rather, it is nothing more than a symptom of the autoimmune process as a whole at work.

Doctors may tell you it's related to hypothyroidism. I, rather, tend to believe it's a polyglandular symptom. For, if your thyroid gland is not functioning properly, your adrenal gland isn't going to be working efficiently, either.

The treatment for alopeecia areata is prednizone, or that of  Kennalog injections directly into the scalp. Both, coincidentally, happen to be synthetic hormones which attempt to mimic natural hormones that are produced by the Adrenal Gland. Once again, if your thyroid is off, most likely your adrenal gland will be, as well.

As for nutritional deficiencies, the two vitamins that are most interelated with hair loss/nail health are Biotin and Pantathenic Acid (B5). Biotin is a pretty harmless vitamin (B2). Whether you have a toxicity or deficiency of Biotin, it's not going to affect you too much, in my judgment.

B5 is the great mystery in all of this. It is well known that Pantothenic Acid is the key precursor for Coenzyme A, which happens to have a major role in the formation of most, if not all hormones. It works along with DHEA to regulate hormones, but the relationship is not well understood at this point. So I would, as a starting point, find yourself a nutritional service that tests for Pantothenic Acid, if that is your theory. That would be the nutritional deficiency most responsible for inflammation (Which is causing your hairloss).

Personally, I tend to believe that your hair loss may be due more in part to that of Adrenal malfunction. Stress, be it physical or emotional, is going to take its toll on the adrenal glands. That is why I believe you should be checked for cortisol (24 hr urine), adrenaline, DHEA, IGA secratory, and testosterone. That, along with your female hormone panel, measuring estrogen and pregesterone, at the minimum, would unlock some of these mysteries.

[gf4life]

I have a circular bald spot on the right side of my scalp. I have had it since I was 13 and my hair was falling out a lot (it was also a very stressful time in my life).

I have never had ANY treatment for it, and it isn't really noticable. Should I be having some sort of treatment for it? Would the hair grow back after 20 years?? I don't have anymore spots, even though I do have quite a bit of hair loss. It seems to be pretty evenly distributed and I lost just about half the volume of my hair since I started getting really sick a few years ago. Some of the hair is growing back, except for the one bald spot that is a little bit larger than a quarter.

I've had my thyroid checked a few times and it always is in normal limits. But I did have one doctor tell me that what is conscidered normal might not be normal for everyone, so it is hard to really know for sure if you have thyroid problems until they are very severe.

God bless,
Mariann

[red345]

If you have more than 50% of total hairloss on your scalp, injections would do you no good. If, however, your hairloss is restricted to one "Pocket" on the scalp (Try putting one of your hands on your scalp, and if your hairloss is confined to that area you're ok), a simple series of Kennalol injections directly into the scalp by a Dermatologist would most likely grow your hair back. You may need to visit your Dermatologist two or three times, but the prognosis would be excellent for you if your hairloss is confined to 33% or less hairloss.

Another possibility for you to try is that of a raw glandular thyroid formulation. I consider to them be safe, and highly effective. However, these over the counter treatments do use the actual glandular of animals, so one must understand that there is always the risk of contracting Mad Cow Disease when using any raw glandular. If you purchase one from a reputable company, however, and it is gluten free, I would see no harm in trying it out for a period not surpassing 30 days.

If you know that your thyroid function is off, there's the thought process there that by fixing that problem, you will calm down the adrenal gland, which in turn may do a lot for you in terms of stress, and its effect on inflammation with the body (Hair loss, some of the pain, etc).

The alternative treatment for Hypothyroidism is that of synthetic hormones (Synthroid). While this medication is not nearly as dangerous as synthetic estrogens, I just don't like them, personally. They are not natural for the body, meaning they could always open up the door for further autoimmune reaction.

As I explained in a different post, another theory in all of this is that of your amino acid profiles. There are tests on directlabs.com, gsdl.com, greatplainslaboratory.com, and (Company Name Removed - They Spammed This Forum and are Banned).com that measure your amino acids.

I'm a believer that because Celiac patients have a difficult time breaking down proteins, they are bound to have deficiencies in certain amino acids, given the fact that amino acids are what the body uses from the breakdown of protein (Protein becomes various amino acids, in other words). Unlike the vitamin profile, once one of your amino acids are off base, they all have the potential to go out of whack.

In other words, if my body cannot break down protein into l-glutamine, that means I will be deficient in l-glutathione, which is the body's own major detoxifier. From there, the l-glutathione level that is off will throw off my l-lysine, which may or may or may not affect my l-carnitine levels.

Carnitine is a major player in circulatory and cardio function. Glutamine protects the GI tract, while glutathione is the natural detoxifier. Tyrosine, along with Co-A and natural DHEA, regulates the endocrine (hormone) system.

It would seem to me, based on what is known about the amino acids, that they may play one hell of a major role in all of this. Why? Once again, if you have one of them off base in your system, it's like a bumper cars-they all get bumped, and they all go out of whack. Amino acids ARE life-Each of them are "Chief Captains" for one aspect of health, in one sense or the other.

Given the fact that Celiacs have trouble converting proteins in the first place, and given the fact that we see so many Celiacs suffering with so many different ailments which encompass so many different aspects of health, I can't understand why we don't pay more attention to amino acid levels.

But you must be cautious-Unlike many of the vitamins, the system cannot detoxify itself properly with many of the amino acids. In other words, you don't want to be deficient, and you certainly don't want to have too much of any one of the amino acids in your system. Either scenario may throw off your system into even greater commotion.

So what you want to shoot for is normal range levels of all of your amino acids. In my opinion, the only way to do that is to have a thourough blood panel performed on all of them (The 43 amino acid panel paints the major picture). From there, it's just a matter of correcting your levels.

In closing, if you want to correct your hairloss problem, visit a Dermatologist, or speak with an Endocrinologist concerning the the possible use of a raw glandular thyroid formula ($8 or less-the one I used was on www.swansonhealthproducts.com). You could try that for a month or less, and if you don't see results thereafter (Give it another month), I would visit with a Dermatologist to see what could be done for you.

But if you, or any fellow sufferers truly want to get to the bottom of this disease, I still swear by the power behind balancing any and all of your amino acid levels. It's a theory behind a lot of this that just makes too much sense for me.

[Racheleona]

My hair has gotten significantly thinner since I was 15 years old and started greying at 15 too Ravenwoodglass. I just started going gluten-free last week so all of your guys posts saying your hair grew back and ravenwoodglass saying it grey back COLOR is great! How exciting, I'm 19 and this whole grey hair business for the past 4 years has been a pain.

[joyce]

My hair had fallen out also during the time that I was very sick. Freaked me out!!!
It was mainly on the sides by my temple that I noticed it the most and it would come out like others have said in clumps in the shower. I went to a Dermatoligist because it was also kinda scaly too. This was before I was diagnosed. I"m positive now it was just the whole nutrient defeciency thing that did it . I have been gluten free since Nov 03 and my hair has filled back in . I also take a multiple vitamin everyday and had been taking a hair vitamin from GNC. Nice to know others have had or are having the same thing.
I guess it's just part of the healing process and we have to be patient.
Lord Bless

[CoolCat1]

My hair hasn't fallen out but is very dry and strawlike. I was diagnosed in July. What shampoos are gluten-free? I use Amplify and Sebastian from the salon.