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

Celiac Hair Loss

jamie111

By jamie111
in Related Issues & Disorders

Recommended Posts

jamie111 Newbie
jamie111
Posted

I was diagnosed with Celiac in Sept 2016. I have been gluten-free for 7 months. 

Pre-diagnosis: hair thinning, dry skin, head aches, awful bloating, etc. Symptoms have steadily improve with bloating here and there. Now, the past month, my hair has taken a dramatic turn for the worse with loss and thinning of hair again - but worse!! Why is this? I need help!

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

Celiac.com Sponsor (A8-M):


PinkyGurl Explorer
PinkyGurl
Posted
43 minutes ago, jamie111 said:

I was diagnosed with Celiac in Sept 2016. I have been gluten-free for 7 months. 

Pre-diagnosis: hair thinning, dry skin, head aches, awful bloating, etc. Symptoms have steadily improve with bloating here and there. Now, the past month, my hair has taken a dramatic turn for the worse with loss and thinning of hair again - but worse!! Why is this? I need help!

Hi jamie111. I had the SAME thing!  Turned out I also had hashimotos which is often seen with celiac.  I would have your thyroid antibodies and thyroid levels checked.  My antibodies were up but my thyroid labs were "within normal". I saw my endocrine and told her of all my thyroid symptoms and she was amazing and started me on meds (very low dose) and wow what a difference!

icelandgirl Proficient
icelandgirl
Posted

Hi Jamie!

I completely agree with Pinky.  Have your thyroid fully investigated.  A lot of Dr's will only test TSH and it just doesn't tell the whole story.  You also need Free T3, Free T4, TPOAb andTgAb.  The last 2 are antibody tests.  Your TSH should be close to 1 and both Free's should be within 50-75% of the range to be optimal.  When your thyroid isn't operating optimally you can have a variety of issues, including hair loss.

Another thing to have checked is your ferritin, stored iron.  If that's low it can cause hair loss as well.

Good luck...I hope you get this figured out!

janpell Apprentice
janpell
Posted

I noticed a huge improvement once I started my iron supplements. It still grows very, very slow though but no hair loss anymore.

cristiana Veteran
cristiana
Posted
17 hours ago, janpell said:

I noticed a huge improvement once I started my iron supplements. It still grows very, very slow though but no hair loss anymore.

I think there has been a direct correlation with my anemia and hair thinning.  Unfortunately I have to limit my iron intake as I have a suspected blood disorder but I'm a rare case - under normal circumstances I'd be supplementing much more as I feel it makes quite a difference.   If I were you I'd get your iron tested and then supplement if on the low side - but make sure your levels are monitored as too much iron is a bad thing.

Some other tips I've picked up from my nutritionalist: eat sufficient protein (eggs, chicken, oily fish), fresh fruit and veg.  And from surfing the net:  make sure you are getting enough exercise; also, some people don't use hair products that contain gluten - this seems a bit controversial, but I've changed mine and I think it has helped.    

Also - are you sure your food isn't being cross contaminated as I have heard some people shed hair if they are glutened?

On that tack - something I'd love to know from other celiacs who have problems with oats (most celiacs don't) is if they feel that oats have ever caused hair loss, in the way that gluten has caused it?

Anyway, do let us know if you find any answers!

 

  • 6 months later...
Feesa Apprentice
Feesa
Posted

OMG I think you have been talking to me, I have found in the last 2 months my hair is falling out like crazy!! I am afraid of the brush now because all it does is make me cry, After reading everyone else's comments I am going to make a Dr apt and get the TSH  tests done, Sorry to hear you are going threw this. But I will say it helps people understand that they are not alone.. Thank you so much for sharing your story.   :)

vonpop626 Newbie
vonpop626
Posted

has anyone heard about this ...Low-Dose Naltrexone (LDN) and that it can help with celiac?

 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted
2 hours ago, vonpop626 said:

has anyone heard about this ...Low-Dose Naltrexone (LDN) and that it can help with celiac?

 

I've read that some people with Crohn's Disease use it and think it can help them.  But I've never read about it being used for celiac disease.

cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, vonpop626 said:

has anyone heard about this ...Low-Dose Naltrexone (LDN) and that it can help with celiac?

 

Not for celiac disease.  There are some alternative sites promoting it for autoimmune issues, but no studies have been made to my limited knowledge (I am not a doctor).  Besides the side effects are GI issues!  Not great if you already have a damaged gut. 

I assume you are concerned about hair loss?  How long have you been gluten free?  Have other I issues ruled out?  

vonpop626 Newbie
vonpop626
Posted

one year!

cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, vonpop626 said:

one year!

Okay, a year of being gluten free.  When was your last celiac antibodies test taken?  It should be done annually or more often if you are having issues.  It can help determine if you are actually diet compliant.

Open Original Shared Link

Ruling out celiac disease as the culprit would be helpful as your hair loss might be related to another autoimmune issue or illness.  

Autoimmune thyroid is commonly linked to celiac disease and if you are hypothyroid that can contribute to hair loss too.  

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. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
    2. knitty kitty
      0

      Vitamins I Take

    3. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

      @hjayne19, So glad you found the information helpful. I know how difficult my struggle with anxiety has been. I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR...
    4. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Welcome to the celiac.com community @pothosqueen! Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run...
    5. pothosqueen
      - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,993
    • Most Online (within 30 mins)
      7,748
    Tchudi
    Newest Member
    Tchudi
    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

    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      Mallorca Guide

      By hjayne19 · Posted

      This is great thank you very much @Scott Adams
×
×
  • 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.