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Hair Loss


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#1 naiiad

 
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Posted 01 August 2010 - 03:36 PM

A year ago (and for the 19 years of my life before that) I had very long, very thick healthy hair. Around this time last summer it started falling out - in chunks. It was really dry and brittle and my roots where thin and white. Within a few months more then half had fallen out and I had to wear hats and different hair styles to cover the thinning patch at the top. I switched to washing my hair with 1 part baby shampoo and 1 part sage tea. After 6 months my hair stopped falling out and it grew back, but not to its original thickness and health.

Anyway, it was at this time that other symptoms started popping up, and doctors had no idea what was going on, but I eventually discovered celiacs. (*Note that I haven't been tested... cant see a specialist for 6 months, I'm also not sure that the hair loss is wheat-related, even though it seems highly likely).

Recently I've been noticing that my hair is thinning again. My roots are dry and brittle and I'm loosing way more hairs then I should be. I first noticed this when I switched to a Revlon shampoo for two weeks and my hair was falling out excessively. When I realized that wheat was a listed ingredient, I immediately threw out the bottle and started using baby shampoo. My hair seemed to improve a little bit, but since then it's been getting progressively worse. I'm so terrified, I don't want to go through the anxiety of losing my hair again.

I'm aware that I've been sneaking small amounts of wheat into my diet - a handful of non-gluten-free rice crackers here, a few potato chips there - foods that I know give me a small reaction but don't contain significant amounts of wheat gluten. Currently ive stopped "cheating" on my wheat-free diet. I hope that helps.

Does anyone have any experience with celiac related hair loss? Any suggestions as to what else I should be doing to preserve my hair?
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#2 ravenwoodglass

 
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Posted 02 August 2010 - 03:42 AM

If your hairloss is related to the autoimmune reaction from celiac you simply can't cheat on the diet. Even small amounts will cause the loss to restart. I do have celiac related hairloss and when even small amounts sneak in I go through at least a couple weeks of fall out.
Something that helps me is I take Country Life 'Hair and Nails' vitamins and an additonal one that is straight Biotin. I also am really careful with shampoos and such, I get the hairloss from soy as well as wheat, and I use either the Shikai line, read the ingredients cause not all are safe, and the Garnier Nutritieste, again read the ingredients as wheat will be clearly listed if it is there.
One thing you do need to know is that if you are gluten free all your testing will be a false negative. If you want the specialist to diagnose you will need to go back on gluten for 2 to 3 months before the appointment. That means at least 4 slices of bread a day. If you have been gluten free you can expect that challenge to make you quite ill. It is your choice whether you want an 'official' diagnosis or whether you can remain strict to the diet by just listening to your body.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 bluebonnet

 
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Posted 02 August 2010 - 04:02 AM

i was diagnosed with celiac and have been gluten free since jan of this year (with the exception of some accidental cc's and a few weeks of a gluten challenge). i am being told my hair is looking thicker. i personally feel like there is not much improvement up there yet. i did notice in may when i did the challenge that i was losing gobs of hair and after i stopped eating gluten my hair loss reduced significantly. i've been using a line called "surface" which promises to be gluten free. its salon only but they have a website. i know because i was pretty bad off when i finally got diagnosed that it will take longer for me to see overall improvement. but like ravenwoodglass said the accidental cc's seem to impact the hair and maybe that could be impacting my progress. over the summer i've had a few cc's unfortunately and its been rough because you feel like you take a giant step backwards. just gotta do everything you can to make sure you are completely staying away from gluten. it does get easier.
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#4 WheatChef

 
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Posted 02 August 2010 - 09:27 PM

If gluten can cause your body to attack it's own cells in places like your intestine, your lungs or your skin then your hair is certainly not safe from attack. Considering the oddly high concentration of immune cells on the scalp it's really easy for any sort of immune problem to end up compromising your hair's health.

I know whenever I end up getting some gluten sneaking in to my diet my scalp gets itchier and if I don't catch the offending food item soon enough then my hair thins out a bit.

Certainly stop cheating on your treatment, additionally however keep a tube of hydrocortisone handy to spread on to reduce the itch (and inflammation) that's resulting in the hair loss during flare ups and also try eating a diet low in inflammation (high on veggies and fish based omega-3s).
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#5 naiiad

 
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Posted 02 August 2010 - 10:54 PM

@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.

@Bluebonnet Thanks!! I'm so scared every time I use a shampoo/conditioner. I'll definitely check out surface! Do you know of any wheat-free soaps and lotions?

@Wheatchef I have the exact same problem. When my hair falls out, my scalp is so itchy, dry and inflamed. A dermatologist I visited a while ago noticed the inflammation and gave me a special hair conditioner. It was a little bit soothing, but didn't really solve the issue. I take omega-3 supplements and condition my hair with olive oil every few nights. That seems to help ^^
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#6 bluebonnet

 
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Posted 03 August 2010 - 05:02 AM

@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.

@Bluebonnet Thanks!! I'm so scared every time I use a shampoo/conditioner. I'll definitely check out surface! Do you know of any wheat-free soaps and lotions?

@Wheatchef I have the exact same problem. When my hair falls out, my scalp is so itchy, dry and inflamed. A dermatologist I visited a while ago noticed the inflammation and gave me a special hair conditioner. It was a little bit soothing, but didn't really solve the issue. I take omega-3 supplements and condition my hair with olive oil every few nights. That seems to help ^^


i have been using dove for my soap and for lotion i have been using burt's bees baby lotion. bare escentuals is pricey but they have gluten free makeup and skin care. for less expensive i have heard that garnier (not sure if that is spelled right) products have a lot of gluten free but check labels of course. and i will check into those after i have depleted my other stuff. losing hair being young and a woman is devastating but so is losing control of your health no matter who you are. if you are fine not getting the "official clinical diagnosis"than i would stay far away from gluten from now on ... especially if you see improvement! there's your diagnosis!!! :)
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#7 naiiad

 
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Posted 11 August 2010 - 12:41 PM

Thanks, I'll definitely look into Garnier.

As for my hair loss... its been getting worse. My scalp always feels inflamed and my hair keeps on falling out. I'm readjusting my diet, yet again, and resorting to making my own shampoo instead of using store bought products.

I really hope it gets better...
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#8 ravenwoodglass

 
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Posted 11 August 2010 - 01:39 PM

@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.


You are saying a wheat free diet, you should also be avoiding barley, rye and oats to be gluten free. I hope things improve soon for you but if they don't soon and you haven't seen a dermatologist they might be helpful.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 ToriMartin

 
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Posted 11 August 2010 - 09:42 PM

I used to have really thick hair also... It's been falling out since I started having problems just before my 19th Birthday... It's been 12 years... Anyhow, I have been treated for Hypothyroidism since 2003. Getting my thyroid "normal" helps allot with hair loss, weight, ect. However, I think the Thyroid is because of the Gluten... Ugh... Anyhow, I know how frustrating it can be...
I haven't been "diagnosed" but have been allergic to Wheat Gluten & Starch all of my life. I thought that was it... Until recently I found out about Gluten Intolerance. I had thought about Celiac many times over the years but since I could eat bleached wheat & not get a stomach ache I figured it wasn't Celiac... I'm still trying to figure out which one it is I have... Anyhow, I'm perfectly fine without a diagnosis, although they are nice... It's just not worth being misrable. But then, Dr's are idiots in my book & they have never helped me so... My point, is it worth eating wheat for the diagnosis?
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#10 naiiad

 
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Posted 05 September 2010 - 10:06 AM

@ToriMartin : sorry to hear that you've been having hair problems too. Hope you figure things out!

I finally went to an allergy specialist who recommended that I keep on a wheat-free diet. He also told me that my hair loss was probably related to the wheat/gluten intolerence, and that I need to "clean up my diet." I've stopped cheating, I've switched from store bought shampoos to pure glycerine, but my hair is still falling out.

The last few time I "cheated" was over a week ago when I had a handful of cheese flavored potato chips that gave me very small mouth sores, D, cramps, overall sick feeling... but it was a very mild reaction. A few days after that I made a toast in my family toaster (which was kind of dirty and filled with crumbs >.<), guess I got crumbs on my wheat-free bread, and I feel like poop all day, mouth sores, bloating, weakness... but again, this wasn't a very severe reaction.

I also used a baby shampoo two days ago, I don't think there's anything in that that could have given me a reaction...

My diet has been clean since then and I haven't had symptoms for the past few days, but my scalp is red and itchy and my hair continues to fall out... its getting worse and I'm so scared. I'm starting to suspect that maybe my hair loss isn't wheat-related... but then again small amounts of wheat keep on sneaking into my diet on a consistent basis... I don't want to go back to my family doctor for the 100th time with the same problem.... I just don't know what to do.. I have the money saved up for a good wig, so at least I'll have that as a last resort.
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#11 ravenwoodglass

 
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Posted 05 September 2010 - 11:38 AM

The last few time I "cheated" was over a week ago when I had a handful of cheese flavored potato chips that gave me very small mouth sores, D, cramps, overall sick feeling... but it was a very mild reaction. A few days after that I made a toast in my family toaster (which was kind of dirty and filled with crumbs >.<), guess I got crumbs on my wheat-free bread, and I feel like poop all day, mouth sores, bloating, weakness... but again, this wasn't a very severe reaction.


You have to get serious about the diet for your hair to grow back and to stop falling out. Even if you don't feel a reaction is 'severe' and I do consider mouth sores, D, cramps and feeling sick more than a 'mild' reaction by the way, you are keeping those antibodies active.
You need to get a dedicated toaster for you gluten free bread. You cannot use the family toaster, period. You can get a toaster for about 10 bucks at a discount store.
I do hope you get a bit stricter with the diet. I know it is hard but it is the only way your body is going to heal. Until those antibodies are gone you will likely continue to have issues with your hair and you risk developing other more serious issues.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 naiiad

 
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Posted 05 September 2010 - 03:13 PM

Thank you Ravenwoodglass, that's exactly what I needed to hear. I'm still getting used to understanding what affects me and what doesn't. I assume that a few potato chips are harmless, but I pay for it afterwards.

I also just figured out that a new brand of "wheat-free" bread I've been trying that my dad got me (from an independent company... one that also bakes wheat-products) must be contaminated. For the past week I've only been having one slice a day. I was a bit suspicious about it because I felt like I might have been having mild symptoms... but today I had a total of four pieces and I really don't feel well. The bread, in combination with my cheating a few days ago, might explain my swollen scalp and hair problems.

I'm cleaning up my diet for good now, and I'm being extra careful about cross-contamination (for example, having my own peanut butter jar), and no more eating out or buying products that I don't know for sure are safe. This is a lot harder then I thought it would be ...
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#13 ravenwoodglass

 
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Posted 06 September 2010 - 03:20 AM

I'm cleaning up my diet for good now, and I'm being extra careful about cross-contamination (for example, having my own peanut butter jar), and no more eating out or buying products that I don't know for sure are safe. This is a lot harder then I thought it would be ...


It is hard at first because there is so much to look out for. It will get easier with time. Do be aware that wheat free is not always gluten free and many items that say wheat free are not safe for us. They can have CC issues or barley or other ingredients that are a no for us.
I hope your feeling better soon.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 Superfudge

 
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Posted 06 September 2010 - 07:11 AM

All great advice here, but I thought I'd mention this in case the hair loss isn't gluten related (although it sounds like you should stay gluten-free for the rest of your health either way). My husband had large patches of his hair fall out last year. It was not gluten related the guy can eat anything! but it got very bad. He had to shave his head for a while (guys are lucky that way). He finally went to see a dermatologist and they did some injections in his scalp. Hair started growing in again, initially baby-fine and white, but eventually more like his normal hair. Now it is completely back to normal, and you'd never know it ever happened. The doctors never did figure out what caused it, but stress is the most likely culprit.

I tell you this not to make you think it isn't gluten, but to encourage you to see a dermatologist since on a gluten-free diet it isn't improving yet. Hair loss is such a stressful thing to deal with, and ironically if it's caused by stress, it just creates more! I sincerely hope a gluten-free diet will help you, but if not, it is worth seeing a dermatologist as well. Good luck, we all feel for you!
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Diagnosed by biopsy and blood test August 11, 2010.
GI quote: profound atrophy of the villous.
Scared me to death. Still very new at this.

#15 Dixiebell

 
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Posted 06 September 2010 - 07:19 AM

I thought this was interesting. http://www.medicinen...ata/article.htm
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.




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