Hair Loss--

[mellowyellowmushroom]

I've just gotten a probable-celiac diagnoses (waiting on blood results and how I do off ofgluten...); but how many other people have had their hair fall out? And long before they got all or more serious symptoms?

I had my hair start falling out FOUR years ago, and it's been downhill health from there. (On top of that, I was in "great" health. I could run miles. I fence competitively. I can do jumping jacks for two hours straight. But my gut started to kill me; and metabolism went haywire--gain/loss weight. I weigh 96 lbs as of now at 5'7 My doctor told me I was "just depressed".)

Anyhow. Hair loss? Anyone else who was told they were "just depressed" as well?

[Takala]

Mine thinned out quite a bit over time, so the forehead bangs area never grew out much below my ears and below shoulder length it was really thin- as a child I had pretty thick, wavy, curly hair and it was nearly middle of my back- waist length as a young adult. It started to look piteously ratty at shoulder length, the older I got, and I finally gave up and cut it shorter right around the time I went gluten free, around 2003.

It has slowly over time gotten a lot thicker again, something I did not expect to happen. I have it about chin length now, cut in layers, a bit longer in back, and since it's humid today I'm trying not to laugh at it because it's much curlier and unruly and sticking out quite a bit. I would have loved to have this doing this back when this style was popular, back in the mid eighties. But it's hotter'n all get out here in CA in the summer, and I'm going to cut it shorter soon. If anyone would have said my hair would have been thicker in my 50s than my 40s I would have said, no way.

I was told so many different things I've lost count. I was at least fortunate my other condition, arthritis in my spine, which is a side effect of the gluten intolerance, was diagnosed accurately early, I know for a fact that I would not get that diagnosis today, because the neurologists and rheumatologists I've seen in the last decade, just trying to get a confirmation so if I have side effects that need to be dealt with quickly, have been clueless and have tried to tell me it's "fibro," "extra sensitivity" or implied I was a head case- I carry test results AND xrays with me at this point, as most won't acknowledge that spondylitics can have the disease and not fuse for decades. I have a lot of blown discs, stenosis, high pain tolerance, and a lot of disgust with the medical profession. My dentist and optician at least can see it in my jaw and eyes. I am also going to permanently test out negative for enough of the gluten antibodies, it seems.

I'm self diagnosed based on what happened when I finally got some other test results from a neurologist, who was hiding them (seriously, I ought to write that story up some time about this fruitcake nasty neuro who moved her office and didn't tell her patients) and refusing to acknowledge that there was a reason for my (at that time) neurological problems. The brain lesions shown in the MRI scan matched all my other symptoms, it was just process of elimination and I had been on almost grain free diet, the SCD or Specific Carb Diet, for about 2 years at that point, eating maybe one or 2 servings of rice a week. Of course, she told me "diet has nothing to do with your symptoms."

Gluten makes people groggy and lethargic and fuzzy brained. It exacerbates inflammation. It doesn't mean we're depressed, it's means.... we're groggy and lethargic. Our immune systems are on red alert. We're malnourished, too, until we heal up and get on those B vitamins and calcium/mag minerals. Don't use that "F" word around me, it's nerve damage.

If and when you go off of gluten you may have to cut down on replacing gluten grain carbohydrates with non gluten grain substitutes until you figure out how much of the alternate grains you can handle. Some of the pre made gluten free stuff is pretty high glycemic index and some people cannot (like me) cannot handle too well eating a lot of the commercial stuff with a lot of rice and tapioca in it. I can digest it okay if I don't go crazy, (talk about baking talent being not being put to full use....) but I don't convert it well to energy. I do okay on almond meal so a lot of the stuff I bake has that as at least part of the flour mix. Some people also have to avoid lactose or all dairy for a while. Others find out that cutting down or getting rid of soy helps. Soy depresses thyroid function. Eating simply, meat, fruits, veggies, nuts, oils (you need fat) really helps, for example, an apple and a handfull of nuts makes a fine quick breakfast with tea and a big slug of coconut milk and chai spice. Beans and potatoes are filling carbs. Eggs and refried beans or fried potatoes for breakfast is yummy. Think outside the cereal box.

Rice cakes and corn tortillas are the 2 easiest bread subs. For milk, there are lots of nut milks, rice milks, and even hemp milks. Unfortunately I am having a hit and miss reaction to one of the 2 brands of hemp milk right now, I just spent the last two weeks sleuthing that one out, but the one without the rice syrup and with sugar or unsweetened is okay, and the other was giving me a migraine and flares. I don't know what is up with that, unless it's their rice syrup has changed.

Just remember to read all the labels and shop around the edges of the grocery store, and you'll be fine.

[YoloGx]

Yes to both. My hair looked full and wavy as a small child but then started falling out and was straight by age 7. I was put back on glutenous grains when I was four after failing to thrive *(i.e., I stopped growing)as an infant due to sprue (celiac) almost immediately after being introduced to grains.

Through trial and error after losing 1/2 my right kidney as a young adult, I went off most of the glutenous grains. However I still was getting gluten regularly in my vitamins etc. plus often had a monster cookie once a week. It wasn't until a year and a half a go I went off all trace gluten. Now finally my hair is thick and wavy again and no longer falls out. I need to put up a new picture since the one I have here is from before I went off all gluten cross contamination...

My health too has greatly improved plus anxiety, anger, confusion has fled. I now have a relatively pacific personality. Unless glutened of course!

Did I mention that I sometimes saw and heard people who weren't there? All that has disappeared. That plus migraines etc.

I do still seem to need to take calcium, magnesium and zinc plus trace minerals and co-enzyme B vitamins however. Probably due to a life time of malabsorption. I am now almost 60.

And yes my nerves were affected majorly. Four years ago the myelin sheat was down to 50%!! Its no wonder I had so much nerve pain and insomnia.

Like Takala, I too have found it best to go off all grains. I eat squash and roots for my carbs. I avoid carrots and potatoes due to allergies. I now find I can eat some fruit whereas before even with gluten free grains I couldn't without it causing a rash, swelling and candida like itchies.

Unfortunately I seem to be allergic to eggs and all nuts, even coconut. Oh well! However I find sunflower seeds are a good substitute. They even make sunflower butter, one of the few premixed things I buy.

Eating unprepared basic food all the time makes this diet very inexpensive. Even though I do eat meat quite a lot I eat more vegetables etc. I eat no-fat organic yogurt both as a treat and digestive aid. I sweeten it with stevia. Am trying to find a source of carob that doesn't have tree nut residue...since unlike many here I don't tolerate chocolate.

With all this I have had to learn to be a detective to make sure I don't get glutened. Even building materials are suspect--something I deal with quite a lot since I help renovate old cottages. I am always washing my hands these days to make sure I don't get cross contaminated due to something I may have touched! It may seem neurotic but believe me it is the opposite!

Bea

PS--don't even get me started on doctors!!

[mellowyellowmushroom]

Wow. Thank you both so much--just your personal stories are encouraging.

I've been eating less and less for a year since it seemed like everything made me ill and I never knew what it was. I just started TRYING to eat and, ironies of ironies, my mom bakes really brilliant "Trail Mix" cookies that have lots of complex carbs, good protein and fats from nuts and such...and a bloody lot of gluten in them. My body utterly flipped out, which lead to the celiac diagnoses from friends of the family and such.

Again, thank you! I hope my hair will come back eventually. But if I can eat at all without falling apart...that will be wonderful.

Yolo -- I know what you mean about the personality and mood. I thought I was just going insane.

Takala -- On the "head-case" point...yes, my doctor have mostly told me I'm "depressed", "anorexic", or whiny.

[clarkje20]

Yes to both. My hair looked full and wavy as a small child but then started falling out and was straight by age 7. I was put back on glutenous grains when I was four after failing to thrive *(i.e., I stopped growing)as an infant due to sprue (celiac) almost immediately after being introduced to grains.

Through trial and error after losing 1/2 my right kidney as a young adult, I went off most of the glutenous grains. However I still was getting gluten regularly in my vitamins etc. plus often had a monster cookie once a week. It wasn't until a year and a half a go I went off all trace gluten. Now finally my hair is thick and wavy again and no longer falls out. I need to put up a new picture since the one I have here is from before I went off all gluten cross contamination...

My health too has greatly improved plus anxiety, anger, confusion has fled. I now have a relatively pacific personality. Unless glutened of course!

Did I mention that I sometimes saw and heard people who weren't there? All that has disappeared. That plus migraines etc.

I do still seem to need to take calcium, magnesium and zinc plus trace minerals and co-enzyme B vitamins however. Probably due to a life time of malabsorption. I am now almost 60.

And yes my nerves were affected majorly. Four years ago the myelin sheat was down to 50%!! Its no wonder I had so much nerve pain and insomnia.

Like Takala, I too have found it best to go off all grains. I eat squash and roots for my carbs. I avoid carrots and potatoes due to allergies. I now find I can eat some fruit whereas before even with gluten free grains I couldn't without it causing a rash, swelling and candida like itchies.

Unfortunately I seem to be allergic to eggs and all nuts, even coconut. Oh well! However I find sunflower seeds are a good substitute. They even make sunflower butter, one of the few premixed things I buy.

Eating unprepared basic food all the time makes this diet very inexpensive. Even though I do eat meat quite a lot I eat more vegetables etc. I eat no-fat organic yogurt both as a treat and digestive aid. I sweeten it with stevia. Am trying to find a source of carob that doesn't have tree nut residue...since unlike many here I don't tolerate chocolate.

With all this I have had to learn to be a detective to make sure I don't get glutened. Even building materials are suspect--something I deal with quite a lot since I help renovate old cottages. I am always washing my hands these days to make sure I don't get cross contaminated due to something I may have touched! It may seem neurotic but believe me it is the opposite!

Bea

PS--don't even get me started on doctors!!

Hi I was wondering how long did it take you to start seeing your hair grow back after taking all the vitamins you listed? I just bought all the vitamins you recommended. Please let me know what else your doing such as your diet, shampoo's, etc... I am totally gluten free. However, I still get the bumps on arms and my face,eyes is losing so much fat that I am looking sunken, sick.... I have been gluten free for 6 mos and I cant tell the difference. Thank you for your help

Jill

[jenngolightly]

I went gluten-free 2 years ago and my hair stopped falling out. I've noticed it growing back in.

[Sandy K.]

I have recently started a gluten free/low grain diet and found lots of benefits already - I found that is is helping stabilize my moods, improvement in my skin (less redness), less food cravings, what seems like less hair shedding, less gastrointestinal distress (cramping/constipation/diarrhea), and fewer hang nails (!?). If this is all a result of going gluten free, I will stay on this 'diet' for life, although I prefer not to call it a diet, more like a lifestyle or a choice for better health. :-) I am awaiting confirmation of blood work for celiac/gluten intolerance, so we shall see for sure, but is is almost a given if I am experiencing so many benefits? I have struggled with hair loss for years and will be so happy - beyond happy, I should say *overjoyed* if going gluten free will help the cause. I have also not been drinking beer which is for the best! (I wasn't a big drinker or beer drinker to begin with, but it's good to know it's an 'avoid'). Thanks so much for everyone's post and I will report back!

[Bobbijo6681]

Welcome Sandy!! You have come to the right place for answers about this process. It is not a guarantee that just because you feel better that your blood test will show positive results. Many people are diagnosed simply by positive changes after changing their diet. This may be the case with you. I was one of the lucky ones that did test positive for Celiac both in the blood work and the endoscopy.

Keep up the diet no matter what the tests say, if you feel better then trust that. Forget about some silly test.

Good Luck and come back with any questions!!

[Reba32]

Have you been tested for any thyroid disease along with the Celiac tests?

As Celiac can cause malnutrition, and malnutrition can cause your hair to fall out and get thinner, it is highly likely a cause and effect thing. However, thyroid disease can also cause hair loss, and there are 2 autoimmune disease that can go hand-in-hand with Celiac. There is Hashimoto's (which causes hypo-thyroid) and Grave's disease (which causes hyper-thyroid).

[Black Sheep]

I always thought my hair loss was due to my hypothyroidism, but I'm hoping it's due to gluten, since I've been off the stuff for a couple of weeks now and never want to ingest another gluten molecule as long as I live! Haha good luck there, right? Anyway my hair, even as a child, was always fine and therefore pretty "fly-away" on some days, but I had lots of it, so it was still pretty thick. And wavy, too, with a few little ringlets here and there. It's still a tiny bit wavy, but so much has fallen out that I wasn't even able to get enough off the back for a mineral analysis. And it's become so baby-fine that, seriously, if I pick one strand off my clothes (and the only way I know one's fallen out is if for instance, it lands on my sleeve and tickles my arm or hand) and hold it up, I can barely see it. It's literally nearly invisible.

Now as for the hypothyroidism itself, I've read various things about how thyroid problems are usually caused by gluten intol./celiac disease. In fact in one dr.'s comments that I read recently, he claims that gluten in sensitive people causes virtually all auto-immune diseases! Does anyone know anything about this?

[bluebonnet]

my hair has thinned a lot and it still hasn't come in ... its been 3 months for me. i have had a few recent accidental glutenings so i know that set me back to start. i am reallllly hoping it grows back in thicker as time goes on and i heal. my friend/hair dresser has been on a mission to find a great gluten free brand for me (its called SURFACE and you can get it in salons only i believe). i just started using it so we will see. i have hypothyroid and always thought that is what made me lose my hair. with everything else out of whack and messed up i think the hair AND thyroid is due to celiac. i keep it short now no longer than to my shoulders and i guess that helps it behave a little better but its no fun stylin' the do if you know what i mean!

[mushroom]

Have faith. It took mine a good 18 months to properly grow back in

[Black Sheep]

my hair has thinned a lot and it still hasn't come in ... its been 3 months for me. i have had a few recent accidental glutenings so i know that set me back to start. i am reallllly hoping it grows back in thicker as time goes on and i heal. my friend/hair dresser has been on a mission to find a great gluten free brand for me (its called SURFACE and you can get it in salons only i believe). i just started using it so we will see. i have hypothyroid and always thought that is what made me lose my hair. with everything else out of whack and messed up i think the hair AND thyroid is due to celiac. i keep it short now no longer than to my shoulders and i guess that helps it behave a little better but its no fun stylin' the do if you know what i mean!

Your hair looks really cute! I'd have never known you had a problem with it just by the picture. I've found I have to keep mine no more than shoulder-length, too. I was bummed-out to find that my deep conditioner, which I was using once a week, has wheat protein in it. But at least my daily stuff doesn't. I used to buy all these expensive organic things, because....well....they were organic. lol Then a few months ago my daughter to me on to inexpensive Sun Silk. I buy the volumnizing one, and I love it. It works better than all the organic stuff, go figure! And there's no wheat protein. So that reminds me....that's another way I realize now I've been glutened since trying to cut it out--twice since I've started this, I've used that darned wheat-protein conditioner! I didn't even think to check that until I saw a post on here about it yesterday. So there's that and the Mickey D's fries I thought I was safe to eat a couple of weeks ago...at least 3 other "oops" occasions in restaurants....and using non-cert. oat flour to make my "g.f." bread. Oh yeah, and eating 2 no-bake oatmeal cookies at church that very first night, thinking the oatmeal was just fine....*sigh* It's really a wonder I've had any improvement at, esp. after only 19 days! Will I ever learn?

Mushroom, you are an encouragement!