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

A Positive I Noticed!

Metoo

By Metoo
in Coping with Celiac Disease

Recommended Posts

Metoo Enthusiast
Metoo
Posted

It dawned on me today I am no longer losing CHUNKS of hair everyday like I have for the past 10 years! I also shedded hair like crazy, where my friends always noted how much hair I had on my clothes!

Where I used to pull lose hairs after combing I would get like a 1/2" chunk now I am less than 1/16"!!

Its a huge difference, I may notice a stray hair or two on my shirt during the day...instead of having to go and take off my sweater in the bathroom and de-hair the back of it because there was so much!

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

Celiac.com Sponsor (A8-M):


Diane-in-FL Explorer
Diane-in-FL
Posted

Mine is improving too. Not as much in the brush and it seems healthier. Small victories. :)

IrishHeart Veteran
IrishHeart
Posted

I am so happy for you! :) and you too, Diane!

I am slowly getting some hair to grow back in. I suffered major hair loss and it was very upsetting for me. (my hair was never thick anyway, but this shedding became ridiculous--I was going bald.)

It is always good to hear when a fellow celiac tells me "it comes back!", so thank you so much for posting! Your news is encouraging!!!

Cheers, IH

AVR1962 Collaborator
AVR1962
Posted

Diane and MeeToo, what do you think was the answer for your hair loss?

IrishHeart Veteran
IrishHeart
Posted

Diane and MeeToo, what do you think was the answer for your hair loss?

Hi A!! (IH is waving at you!)

I suspect they will tell us "time and healing" :) and better absorption of nutrients/vitamins-- but let's see if there is any other magic we are missing. I have covered all my bases (testing wise and vit def. wise) and so I know it's nothing else.

BabsV Enthusiast
BabsV
Posted

Congrats! I didn't have hair loss as a symptom but I did notice just this morning that my fingernails are no longer flaking and tearing like they used to, they are much much stronger than they used to be and they are growing much faster. So cool!

Metoo Enthusiast
Metoo
Posted
  • Author

Diane and MeeToo, what do you think was the answer for your hair loss?

I don't know...I am guessing just gluten-free. I am at about 9 weeks gluten free. Maybe being gluten-free has helped me raise my vitamin D levels further. I know up until going gluten free I was still having crushing fatigue problems (my low vit D symptom)...which have slowly resolved.

Previously last April I was diagnosed with severe Vit D defiecency and I noticed a difference in increasing my level to a 'normal' level...but I just had less major loss of hair, but I was still losing it just at a slower rate.

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

Celiac.com Sponsor (A8-M):


Metoo Enthusiast
Metoo
Posted
  • Author

I don't know...I am guessing just gluten-free. I am at about 9 weeks gluten free. Maybe being gluten-free has helped me raise my vitamin D levels further. I know up until going gluten free I was still having crushing fatigue problems (my low vit D symptom)...which have slowly resolved.

Previously last April I was diagnosed with severe Vit D defiecency and I noticed a difference in increasing my level to a 'normal' level...but I just had less major loss of hair, but I was still losing it just at a slower rate.

I am still taking 6000 units of vitamin D per day if you were curious. Its supposed to be my maintenance dose since I was so low, and was back up to normal in July.

Diane-in-FL Explorer
Diane-in-FL
Posted

Diane and MeeToo, what do you think was the answer for your hair loss?

I think it is because I am finally absorbing vitamins and nutrients.

granolagal Apprentice
granolagal
Posted

CONGRATS!!! That's so amazing! I really really hope I can post that same thing one day. I've got about 1/4 of my hair left. It's really bad. I'm keeping the faith that it will come back. I've just got to give it time (I'm only 3 weeks gluten-free).

Anyway, like others have said, I just wanted to say CONGRATS and thanks for helping give me hope!!!

ciamarie Rookie
ciamarie
Posted

Great news! I noticed last weekend that an area on the top of my head (the crown area, near the back) which has been pretty thin for ages, and which I didn't attribute to Celiac or gluten at all, has started to fill in. I've been gluten-free for about 10 weeks or so, and have sporadically taken some probiotics and vitamins and try to eat some veggies on a regular basis, etc. I also avoid soy.

bumblebee-carnival Newbie
bumblebee-carnival
Posted

I'm still losing about the same amount, BUT in the last week I noticed all these little hairs growing in around my hairline. They are between 1/8-1/2" long! I've been gluten free since the end of October.

On another thread, someone mentioned Biosil and zinc tablets for hair loss and I started taking those about 6 weeks ago. I think that those supplements combined with going gluten free has really helped my hair start to fill in.

looking for info Rookie
looking for info
Posted

I'm still losing about the same amount, BUT in the last week I noticed all these little hairs growing in around my hairline. They are between 1/8-1/2" long! I've been gluten free since the end of October.

On another thread, someone mentioned Biosil and zinc tablets for hair loss and I started taking those about 6 weeks ago. I think that those supplements combined with going gluten free has really helped my hair start to fill in.

I'm soo happy for you...It's wonderful and give me hope that the hair loss will stop and heal...I've been worried for some time that the hair loss was permanent :(...I had really thick long hair and now (like others) it seems to be thinning and falling out...Congrats...its always nice to hear the possitives :)...thank you for sharing

Takala Enthusiast
Takala
Posted

My hair came back in thick and curly, and I can grow fingernails now that I have to cut short instead of having them break off. :)

jeanzdyn Apprentice
jeanzdyn
Posted

oh wow! thanks for this info! I am happy to learn that my hair may become healthier again!! And that my lifelong fingernail problems may end, or at least maybe on a gluten-free diet my fingernails and hair may get healthier! There is good news to be found in all of this!

I was diagnosed just a couple of months ago, and am still struggling to get gluten completely out of my diet.

lucky28 Explorer
lucky28
Posted

Hi, I just wanted to say that I too have noticed that I have MUCH less hair in the bottom of the tub after I shower! I also noticed, just this morning that i have new hair growing in around my temple area! It's about 1/2 inch long! Good to see some positive results!

bumblebee-carnival Newbie
bumblebee-carnival
Posted

I'm soo happy for you...It's wonderful and give me hope that the hair loss will stop and heal...I've been worried for some time that the hair loss was permanent :(...I had really thick long hair and now (like others) it seems to be thinning and falling out...Congrats...its always nice to hear the possitives :)...thank you for sharing

Thank you! Seriously, try the Biosil and zinc. Completely without exaggeration, after FIVE days my eye lashes were noticeably longer. Really it was that fast! The head hair has a longer growth cycle so it's taken longer to see results on my scalp. But it's starting to visibly fill now. I didn't even realize my eyebrows had thinned and they have even thickened up. I keep my nails short (to just the tops of my fingers) and they are growing like crazy, too.

((((hugs))) cause I know how it sucks to see all that hair in the drain. But I have faith that yours will come back too! :-)

IrishHeart Veteran
IrishHeart
Posted

Thank you! Seriously, try the Biosil and zinc.

This must be why the online sources of BioSil are sold out.

Seriously, try finding it! Word of mouth from satisfied customers has made it nearly impossible to find.

The celiacs are all buying up the bottles. :lol:

looking for info Rookie
looking for info
Posted

Thank you! Seriously, try the Biosil and zinc. Completely without exaggeration, after FIVE days my eye lashes were noticeably longer. Really it was that fast! The head hair has a longer growth cycle so it's taken longer to see results on my scalp. But it's starting to visibly fill now. I didn't even realize my eyebrows had thinned and they have even thickened up. I keep my nails short (to just the tops of my fingers) and they are growing like crazy, too.

((((hugs))) cause I know how it sucks to see all that hair in the drain. But I have faith that yours will come back too! :-)

aww...thank you...ill be trying to find some Biosil this weekend.. :) Hugs.... :)

Avalon451 Apprentice
Avalon451
Posted

That is great news! My 3 daughters and I were just diagnosed, and we start our gluten-free diet soon. I was mystified by hair loss in my younger two. My middle daughter, especially, had handfuls come out every time I combed, a few years ago, but that symptom came and went. The 9-year-old has almost waist-length hair, but whenever I comb it after a bath, I end up with a whole handful to throw away. I hope it grows back for them, and for me (perpetually super-thin hair!) I had no idea this was a symptom till all my recent research.

love2travel Mentor
love2travel
Posted

Although this did not happen to me, I would like to add my congratulations. What an awesome result! I rejoice with you and can feel your happiness. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748
    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.