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Hairloss & Gluten


Glutenmeggie

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Glutenmeggie Newbie

Hello,

I am Megan . I am 42  years old. I have Celiac . I have been diagnoised now for 2 1/2 years. I have tried very hard to keep everything under control. I have IBS & GERD as well. If I eat any gluten I vomit. In the past  month I do recall being " gluetened" at a resturant. Since then my hair has been falling out all over. My scalp at times is itchy and burning. My scalp is not red unless I am itching it. I have had blood work done and everything is normal. I am always under a lot of stress as a single mom.  I have been to two Dermatologists who have been rude and heartless. This is such and emotional thing to go through . I feel alone in this entire thing. Anyone out there ?


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NoWhammies Newbie

Hi Megan:

 

I have not had hair loss associated with the celiac and gluten, but I have had it associated with the Hashimoto's thyroiditis. Have you had your thyroid checked? As you probably know, there is an association between gluten/celiac and thyroid disease.

 

When I was losing a lot of hair, I used Nioxin shampoo, which really seemed to help. I know it is frustrating. Hang in there.

Glutenmeggie Newbie

Hi NoWhammies,

I am using that shampoo right now. I have not looked into that Disease but I will now ;) Thank you !

Hi Megan:
 
I have not had hair loss associated with the celiac and gluten, but I have had it associated with the Hashimoto's thyroiditis. Have you had your thyroid checked? As you probably know, there is an association between gluten/celiac and thyroid disease.
 
When I was losing a lot of hair, I used Nioxin shampoo, which really seemed to help. I know it is frustrating. Hang in there.

MJ-S Contributor

I lose much more hair than normal when I have a gluten reaction. It gets better after a week or so.

Glutenmeggie Newbie

I lose much more hair than normal when I have a gluten reaction. It gets better after a week or so.

h i MJ_S

 

I accidentally had gluten a week before all this hair started fallling out. I also was bloated constipated head aches and moody. Do y ou  get any other symptoms ?

LauraTX Rising Star

h i MJ_S

 

I accidentally had gluten a week before all this hair started fallling out. I also was bloated constipated head aches and moody. Do y ou  get any other symptoms ?

As suggested by nowhammies, a doctors visit to check on your thyroid may be in order.  These are also symptoms of an under-active thyroid, so it would be a good idea to go get that checked out to make sure there isn't more than one thing going on that can be fixed.  Hopefully it is just from the gluten reaction, but best to be safe and check out with the doctor, too.

cristiana Veteran

Joanna Rowsell is a really inspirational young British Olympian who has suffered hair loss from a young age and it is really good to read how she has dealt with it.  I have always had fine hair but it  got really thin around the time of my diagnosis which I think may have been to do with being anemic.  I do feel for you as I know exactly how heartless and thoughtless people's comments can be.  It used to really hurt but I find that being open with people really helps and people have been very kind and supportive when it got to me.  BTW has iron been one of the checks you have had?

 

I have read a lot around the subject and there can be a link with celiac although I am not sure the experts know why.  But we need to keep off the gluten.   I think my hair is looking a bit better now, but I think I have to accept I will never have brilliantly thick hair!   Definitely have that thyroid check, though.

 

Hugs xx   


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  • 4 months later...
sdaniel95 Newbie

I went bald by the time I was 30.  I wasn't diagnosed for another 20 years.  I thought it was genetics, but looking back, Gluten may have accelerated my problem. 

FYI:  Being bald is a big deal when your 30, but lots of guys my age now (68) are bald...  No big deal now.  :)

greenbeanie Enthusiast

My hair fell out in the shower every day during my gluten challenge a couple years ago - enough to cover my hands when I shampooed and to clog up the drain, even though my hair is short. It was quite alarming. I am a woman in my 30's and was suddenly afraid of going bald! And I always had a rashy and blistering scalp too. If I remeber correctly, I think it stopped falling out after about six weeks gluten free...thank goodness! It took a good year for the rash to go away completely and stay gone. Of course, I was eating gluten every day for a month during the challenge, so it's not surprising that my hair kept falling out for so long afterward. Now, on the few occasions when I'm pretty sure I had minor cc, the blistering itchy scalp came right back, but only lasted a couple weeks. I don't have a clear celiac diagnosis and never saw a dermatologist (way too long of a wait for an appointment, and I wasn't willing to stay on gluten until I could get in), but I strongly suspect that the rash was dh. I had it lots of other places too, but the scalp was extra miserable (and very embarrassing when I had to go to the hairdresser).

I sympathize and hope your head gets better quickly! Hang in there!

w8in4dave Community Regular

I am also suffering from Hair loss and toe nail falling off, my finger nail started getting weird ridges in them , Dr. send me to a dermatoligest, he looked at my toenails said it looked like Lichen Planus, looked at my hair said it looked like female pattern baldness, EEeeeennnnnnnnnnntttttttt!! Wrong answer I was also complaining of no energy. Finally I went to the Dr. Just for the no energy thing and he did some vitamin levels, I was low on Folic Acid, hmmm that causes hair loss , nail problems and low energy. Go figure! Hope I get my hair back! 

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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