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 Loss?


Sheltie Girl

Recommended Posts

Sheltie Girl Newbie

My daughter is 17 years old and was diaganosed with gluten sensitivity after dealing with 2 years of heartburn, throwing up after eating, diarrea up to 7 times a day, bloating, anxiety, what was thought to be OCD (loss of eyebrows, eyelashes, which we never seen her pull out, so we thought she was doing in her sleep). The list goes on and on. Our family doctor is the one who ran the initial blood test, showed positive. Went gluten free (entire house). Started feeling better, throwing up stopped. Still had loose stools, anxiety got better. Our doctor wanted her to go to GI doc. Got into one 2 1/2 months later. They did a blood test and scheduled her for bioposy within a week and half. Told her to eat gluten once a day until then. She instantly was throwing up right after a gluten meal. Within the first night she lost all her color, all her energy, etc. Anytime she ate gluten, she threw up within 15 min. The biopsy came back negative, along with their blood test. So they basically dismissed her. We have since had her gall bladder removed and she has been gluten free since August, 2010.

She has since grown back her eyebrows and eyelashes! But, she has noticed that after she does eat something with gluten, within a day or two, the skin under her eyelashes, eyebrows, pubic area gets bubbly and then wads of hair fall out. Her hair is thinning. Which is something she has really noticed. Is this from the gluten or is this from a lack of nutrients? or both?

Thank you for any input.

Patty


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hello, and welcome to the forum.

I am so sorry your daughter has been having all these problems. And the GI docs are not helping things either. If I had my way, every GI would be sent to the blackboard to write 1,000 times:

Patients who have been gluten free will most likely test negative on celiac blood tests and biopsy.

A week and a half on gluten once a day is not sufficient to ensure a meaningful result on either test. Fortunately (and unfortunately) healing starts to take place as soon as gluten is withdrawn. For someone who has been gluten free for 2-1/2 months, she would need to eat the equivalent of four slices of bread every day for 2-3 months to render a meaningful test result. That is how long it would take for the antibodies to build up in the blood stream and for damage to occur in the small intestine which could be seen on biopsy. This makes me so angry, that they would put your daughter through this for what was virtually guaranteed to be a negative result.

I would trust the original blood work done by your family doctor and return her to strict gluten free immediately., no cheating! Gluten intolerance definitely can cause thinning hair - I thought I was going to end up with male pattern baldness (and I am female :o ). Your daughter's reaction to gluten has proved to any sensible person that she is gluten intolerant and she should strictly avoid it. And I like your idea of taking the whole house gluten free -- it makes things so much easier. Definitely have her family doctor check her nutrient levels - D, B12, folate, A, E and K, potassium, magnesium, calcium and zinc as she could be deficient in any of these.

Good luck to you all and I hope she continues to improve (and I am sure her hair will grow back if she totally avoids gluten) :) .

Takala Enthusiast

The hair will grow back. But she needs to stick to the gluten free diet, faithfully. (maybe ditch the soy, also.)

I hate to sound like a cosmetics ad, but she can have all sorts of nice thick hair again, but No Gluten. Haircoats that are thick, soft, and shiny in pets and animals is one of the first ways we assess their health - same with humans.

Since teenagers are prone to food cravings anyway, don't hesitate to stock up on safe gluten free treats she can eat, if temptation strikes, at least let there be enough gluten free food around to do some serious snacking.

Also, a gluten free B complex, multivitamin, calcium magnesium and Vit D is a good idea. Plus, avocados and coconut oil and olive oil, all good fats, help with skin and hair.

SGWhiskers Collaborator

Since she sees a direct connection with gluten consumption, I would tend to simply blame the gluten and keep avoiding it. Other possibilities are vitamin deficiencies, hypothyroid, and alopecia areata (Open Original Shared Link).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.