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. 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...
    2. 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...
    3. Scott Adams
      - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      1

      Am I nuts?

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune...
    4. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
    5. Russ H
      - Russ H replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much...
  • 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

    • 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.):    
    • Scott Adams
      Am I nuts?

      By Scott Adams · Posted

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      My journey is it gluten or fiber?

      By Scott Adams · Posted

      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
    • Russ H
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Russ H · Posted

      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
×
×
  • 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.