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

Hair Still Falling Out!

DingoGirl

By DingoGirl
in Coping with Celiac Disease

Recommended Posts

DingoGirl Enthusiast
DingoGirl
Posted

Hi all - - I've been gluten-free for nearly three months and my hair is STIll falling out significantly. Am wondering if any of you saw diminishment of this and how long it took. I'm quite concerned. BTW I am 44, so changes will naturally occur, but no signs of menopause yet. I'm no longer anemic, as far as I know....

Help! :o

Susan

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi Susan--Gosh. I understand your concern. I had hair loss to the point where I had patches that were thin enough to see my scalp. For me, I began to stop losing after 3-4 months on the gluten-free diet and vitamins. At that point, I had my hair cut so the spots would blend in better. :( It's been 10 months now, and my hair has grown back in pretty well. It's not as thick all over as it once was, but at least there are no more thin areas. Are you feeling better overall at this point? Also, do you take any vitamins--a multi is a good idea. Hopefully, your hair will respond to the positive changes you have made soon. :)

Matilda Enthusiast
Matilda
Posted

..

DingoGirl Enthusiast
DingoGirl
Posted
  • Author

Good news, girls, thanks for replying. Patti, I do take a multi (Centrum), B supplement, and iron. Got blood results back, my iron is now NORMAL for the first time in years!! So, I can only hope the hair loss will end soon......'twould be one less thing to deal with! :)

Thanks!

Susan

sspitzer5 Apprentice
sspitzer5
Posted
Hi all - - I've been gluten-free for nearly three months and my hair is STIll falling out significantly. Am wondering if any of you saw diminishment of this and how long it took. I'm quite concerned. BTW I am 44, so changes will naturally occur, but no signs of menopause yet. I'm no longer anemic, as far as I know....

Help! :o

Susan

Hi Susan,

I'd get your thyroid checked. Low thyroid can cause hair loss and is very common with Celiac.

S

breadlover Newbie
breadlover
Posted

Hi everyone! My hair fell out when I was first diagnosed too. CHECK YOUR SHAMPOO!!! My doctor is very very smart and said to check the ingrediants of my shampoo and conditionor sure enough, Wheat gluten, hydrogolized wheat protion, wheat oil whatever you name it there were like five wheat ingrediants and if your a sensitive celiac is can externally effect you!! I stopped that shampoo got some gluten free stuff from whole foods and now my hair is back thick and gorgous. Good luck!

DingoGirl Enthusiast
DingoGirl
Posted
  • Author

AAAaaaagh!! didn't think of that....I've actually been using Nioxxin shampoo, expensive stuff to keep from LOSING hair - didn't even check ingredients! :ph34r:

did get my thyroid checked two weeks ago and everything looks okay, S, thank you for that as that had occurred to me as well.

One day, this will all make sense.......

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

Celiac.com Sponsor (A8-M):


aaascr Apprentice
aaascr
Posted

It took 6-7 months for my hair to stop

falling out - I also took biotin to help

the new growth.

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

DingoGirl -- STOP SOY!

SOY is poison. It is what caused me my thyroid problem and will cause hair loss.

Have your thyroid checked and remove SOY from your diet. Really give it a try you'll get better. I am not kidding I promise!

I just noticed your last post. What were your thyroid blood levels, if you don't mind me asking??? Because everyones body is different. What is normal for you, might not be normal from me. I went to my doc a few weeks ago. I was bouncing off the walls in the hyper thyroid mode. The doc said "You are in the NORMAL range" it was a few number away from being a huge problem. I knew by listening to my body I was getting too much meduication in my system. She said "...your okay!" I wasn't -- I went to another doc and he changed my medication and I feel so much better.

And P.S. my hair stopped falling out. For me SOY and thyroid hyper or hypo causes hair loss for me.

DingoGirl Enthusiast
DingoGirl
Posted
  • Author

Ms. Sillyak - - I have been concerned about soy, so hardly eating any at this point, but that just started. I think you were the one that posted some info earlier on soy and I had been following that...who knew!!!

And you know what, I think my doctor is kind of sick of me, so I may switch to another - not really liking her too much any more. :angry: She just brushed off my thyroid question and said, everything's fine. My "physical" yesterday, with pap smear? A whole THREE MINUTES. Anyway she wouldn't show me the thyroid numbers. So, I'll get a copy of my bloodwork and consult the experts!

Thanks for that information, hoping to be feeling better soon and stop the hair loss - - -

Susan

Rusla Enthusiast
Rusla
Posted

I agree on having your thyroid check. Make sure they check antibodies and have an ultrasound too. That is because the TSH can read normal when your thyroid isn't. I would lose handfuls due to anemia, thyroid and this. Now I don't lose so much hair but then, I have just eliminated over a foot of hair.

flagbabyds Collaborator
flagbabyds
Posted

For sure check your shampoo/conditioner because that can cause major problems. When I was diagnosed (as a baby) lost all my hair and took at least a year to have it kind of grow back, still took like 2-3 years to have normal hair again, but that was me being a baby.

breadlover Newbie
breadlover
Posted

Dinogirl always get your blood test results and start keeping a file! I have a celiac file and I bust that thing out all the time. Good job on switching doctors if they dont want to listen to our problems and help find someone who does. They dont know whats it like being celiac. Good luck! P.S i went thru the whole tyroid thing. My tests were elavated thyroid levels and then they re-tested and they were fine my bodys crazy i guess who knows.

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. Dr. Gunn
      - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual.
    2. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population...
    3. Dr. Gunn
      - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life.
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      1

      How Social Media Algorithms Are Fueling Gluten Anxiety: TikTok, Reddit, and Instagram Trends

      Good, balanced analysis. I liked the comparison of the different platforms in this context. Fwiw, the same essay largely would work if you substitute any of many contemporary topics. As a moderator of this site, have you stepped back and considered how this site fits into this essay? Personally, I don't think I have enough visibility into the comments...
    5. Scott Adams
      - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also h...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,659
    • Most Online (within 30 mins)
      7,748
    Dr. Gunn
    Newest Member
    Dr. Gunn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
×
×
  • 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.