Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hairloss & Gluten

Glutenmeggie

By Glutenmeggie
in Super Sensitive People

Recommended Posts

Glutenmeggie Newbie
Glutenmeggie
Posted

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 ?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoWhammies Newbie
NoWhammies
Posted

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
Glutenmeggie
Posted
  • Author

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
MJ-S
Posted

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

Glutenmeggie Newbie
Glutenmeggie
Posted
  • Author

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
LauraTX
Posted

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
cristiana
Posted

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   

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 4 months later...
sdaniel95 Newbie
sdaniel95
Posted

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
greenbeanie
Posted

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
w8in4dave
Posted

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! 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.