Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 falling out - AGAIN!


lastevns

Recommended Posts

lastevns Rookie

My Celiac disease went undiagnosed for years due to a lack of GI issues. In fact, for years and years the only symptom that showed from my disease was missed by doctors -- that of my hair falling out.

It was after a particularly stressful time with my job and a home invasion robbery that actual GI issues showed up. But my doctor believed they were side effects of a drug I was taking for stress. So, I got sicker. I lost 50 pounds in 2 months, lost all my hair, the ability to walk or even hold my head up and ended up in the hospital at 69 pounds. I died and was revived twice. The doctors didn't believe they would save me. But, I got better with a PICC line and TPN.

I've had a little over two years of good health on a gluten-free diet. But, just recently, though still gluten-free, my hair is falling out again (and in great amounts). The one and only good thing that came of my illness and diagnosis was that my hair grew back thick and strong. Now I'm losing it again and I'm just distraught. I know I shouldn't get stressed but I can't help it. I am so tired of looking awful.

I have an appointment scheduled with my PP on Tuesday and, even when she approves a visit to my specialist, it will take probably a month or more to get in to see him. So, please, if anyone knows of information on how to defeat this hair loss in the meantime, I would be so grateful if you'd share it. Just FYI: I've started using minoxidil again. I've quit all alcohol. I'm also taking vitamins and supplements including:

Multi

Calcium with D

B Complex

Iron

Magnesium

Fish Oil

Probiotics

Digestive Enzymes

 

L.

PS -- While in the hospital I was checked for everything under the sun. At the time I didn't have any thyroid issues or other side illnesses that would contribute to the hair loss (at least not then). I suspect the recent loss is due to increased stress and irregular self-care habits (I get super busy with work and forget to take pills, etc). Correcting that now but would also like to know if there is anything else I can do to stop loss quickly. Thanks!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You might want to go with a stress B & C combo which will have higher levels than a B complex. How long ago were you using the Minoxidil?  I could be wrong but I think I read that once you start to use that if it helps you have to keep using it. If you stop the hair loss will return.

Is the specialist a dermatologist? If not an appointment with one might be a good idea. Perhaps an endocrinoligist consult might also be a helpful.

Sorry you have been going through this. I know from personal experience how awful it is.

lastevns Rookie
Just now, ravenwoodglass said:

You might want to go with a stress B & C combo which will have higher levels than a B complex. How long ago were you using the Minoxidil?  I could be wrong but I think I read that once you start to use that if it helps you have to keep using it. If you stop the hair loss will return.

Is the specialist a dermatologist? If not an appointment with one might be a good idea. Perhaps an endocrinoligist consult might also be a helpful.

Sorry you have been going through this. I know from personal experience how awful it is.

Thank you for your response. I will look for a specific "stress" B & C combo. I'm really willing to do anything. I used minoxidil for years and years. It kept just enough hair in my head to do the job but it wasn't great. I stopped using it when my hair grew back so full. I haven't used it for two years and it's been okay, until now. But, yes, they do say use it for life. So I guess I will.

My specialist will be my GI specialist. He is the one that finally diagnosed me and saved my life but he is a grumpy old b*st*rd from India who tells me that Americans are too vain. He had no interest in helping me figure out how to grow my hair back or how to lose weight when I gained too much from the 2200 calorie a day feeding tube (I'm just 5' so 2200 calories a day saved my life but left me, well, fat). When I asked about a diet he said I should just be glad to be alive. Granted, I am. But I am also female. Of course this is a man who has only three teeth in his head and who works ungodly hours helping people. So I am grateful to him. But he doesn't get being vain in any way. So, yeah, I may ask my PP for a second referral to someone who might help with the hair loss. That is a good suggestion. Thank you! I'm just not good at thinking well when I am this stressed out.

ravenwoodglass Mentor

A couple more things I just thought has your GP rerun a celiac panel to make sure that gluten isn't somehow creeping in? That should be done to make sure the hairloss isn't gluten related. Can you think of any new food, shampoo etc that you began using before the loss started? For example if I use a shampoo with soy protein that will cause me to lose hair as will eating it. Of course that may not apply for you but just throwing some thoughts out there.

Ennis-TX Grand Master

Liquid Health, had a stress & Energy Supplement and a neurological support one I swear by using 1tbsp each 3 times a day. OH I found taking a collagen and biotin supplement works wonders for hair especially with nutrient issues. Neocell has several I like the pure collagen one or Neocell Beauty Infusion . >.< I love my long hair. Shampoo wise I found a nice EO shampoo with keratin in it that keeps my hair strong and smooth and is gluten-free. PS best thing about the neocell and liquid health options is they dissolve or mix int a beverage so you can get them in your system SOO much easier.

Eating nuts, seeds, avocado, and raw cocoa nibs does wonders for your hair and skin. I found Hemp, pumpkin, and cocoa nibs are INSANELY good for stress. I also take Magnesium in insane amounts.....I have some crazy and really evil s$#& going on in my life, and I just roll with it. Since I started binging on cocoa nibs, life has really started looking up lol. I keep a CBD oil vape pen for those really high stress moments. >.< am ketogenic so I pretty much just burn fat for energy and do not eat carbs myself. Works great for your body as it does not store fat....but constantly burns it instead carbs. So much energy, no bloat, and the high fat diet does wonders for your skin and hair.

knitty kitty Grand Master

Here's an interesting article about vitamin deficiencies and hair loss.  

Open Original Shared Link

Ennis is right, you may need to take vitamins and minerals in liquid form for better absorption.  And you may need to take more than just the RDA if you're deficient. 

My hair falls out when my vitamins gets low. B12, selenium, and vitamin A supplements help a great deal for me.

lastevns Rookie
4 minutes ago, Ennis_TX said:

Liquid Health, had a stress & Energy Supplement and a neurological support one I swear by using 1tbsp each 3 times a day. OH I found taking a collagen and biotin supplement works wonders for hair especially with nutrient issues. Neocell has several I like the pure collagen one or Neocell Beauty Infusion . >.< I love my long hair. Shampoo wise I found a nice EO shampoo with keratin in it that keeps my hair strong and smooth and is gluten-free. PS best thing about the neocell and liquid health options is they dissolve or mix int a beverage so you can get them in your system SOO much easier.

Eating nuts, seeds, avocado, and raw cocoa nibs does wonders for your hair and skin. I found Hemp, pumpkin, and cocoa nibs are INSANELY good for stress. I also take Magnesium in insane amounts.....I have some crazy and really evil s$#& going on in my life, and I just roll with it. Since I started binging on cocoa nibs, life has really started looking up lol. I keep a CBD oil vape pen for those really high stress moments. >.< am ketogenic so I pretty much just burn fat for energy and do not eat carbs myself. Works great for your body as it does not store fat....but constantly burns it instead carbs. So much energy, no bloat, and the high fat diet does wonders for your skin and hair.

Interesting response. Thank you. I had thought about this but... I just changed my diet for the first time since getting sick. I am on a ketogenic diet now (70% fat, 20% protein and 10% carbs). I just finished a month on it. I assumed it would help with any Celiac issues but I wonder if, combined with stress, It's not providing enough to nourish the hair? I wouldn't think it would bother my hair but I will try to read up on it. It all gets so overwhelming try to balance everything.

The supplements and products I will definitely look up now. And I might look into the CBD. I know I have some left from when I was really in sick and suffering from horrible nerve pain. Not sure if its efficacy now... but I might try it. I wonder: is there any negative side effect to large amounts of magnesium? Will also add the seeds and avocado. Thanks, again!

L.

 

PS - Trying the EO shampoo, too. Do you use their conditioner?


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



Celiac.com Sponsor (A8-M):



lastevns Rookie
3 hours ago, knitty kitty said:

Here's an interesting article about vitamin deficiencies and hair loss.  

Open Original Shared Link

Ennis is right, you may need to take vitamins and minerals in liquid form for better absorption.  And you may need to take more than just the RDA if you're deficient. 

My hair falls out when my vitamins gets low. B12, selenium, and vitamin A supplements help a great deal for me.

Thanks for the article. I am going to do some more research based on what I read there.

Ennis-TX Grand Master
3 hours ago, lastevns said:

Interesting response. Thank you. I had thought about this but... I just changed my diet for the first time since getting sick. I am on a ketogenic diet now (70% fat, 20% protein and 10% carbs). I just finished a month on it. I assumed it would help with any Celiac issues but I wonder if, combined with stress, It's not providing enough to nourish the hair? I wouldn't think it would bother my hair but I will try to read up on it. It all gets so overwhelming try to balance everything.

The supplements and products I will definitely look up now. And I might look into the CBD. I know I have some left from when I was really in sick and suffering from horrible nerve pain. Not sure if its efficacy now... but I might try it. I wonder: is there any negative side effect to large amounts of magnesium? Will also add the seeds and avocado. Thanks, again!

L.

 

PS - Trying the EO shampoo, too. Do you use their conditioner?

Yes the EO one coconut with keratin, makes my hair so silky and easy to brush.

Magnesium everyone has their levels...I have EXTREME bad constipation and take about 3 times the recommended dose spaced out during the day. My issues is I pace, workout, and stress alot running a business. This leads to my body using more magnesium, coupled with celiac and issues asorbing it. If i stop for a day not only does the constipation come back, but the skin crawling, achy joints, and cramping muscles. So I know I have a issues with it.  Please do not use this as your base line...lol if anyone took this amount they would never leave the bathroom.

Yeah try mixing up your fats on ketogenic, mine is more protein ratio wise but I am trying to body build. I rotate my fat sources often. I notice skin changes on certain fats. Seems my skin loves avocado, walnuts, macadamia nuts. but those get too expensive to eat on a regular basis. Also important to get plenty of greens, can be a bit hard on a keto diet but I found focusing on spinach and kale works better due to the nutrient dense nature. I also use tomato powder, or make my own keto tomato based sauces using watering down method and thickening it back up with a tiny bit of konjac. This way I can get lyposene in my diet also.  >.< funny how I make my own bread,s pastries, deserts all keto using nut bases benefits of a baker I guess. ....on the cocoa nibs...I binge them like 1/4 cup or more a meal. it is true I swear you can get endorphin release from cocoa SO addictive and its not even sweet,

cyclinglady Grand Master

Sorry that you are going through this!  Maybe it is your current diet.  Just switching could have caused physical stress.  Consider adding back in a little more carbs in the form of veggies (sweet potatoes, squashes, etc.) to insure you are getting nutrients that can impact your hair growth.      I am diabetic/celiac and I maintain a low carb diet, but I try to focus on lots of veggies -- no limits.  The only veggies that increases my glucose are white potatoes.  So, I eat everything but those (except for occasional treats) and monitor my glucose using my meter.  

Ask for a celiac antibodies check as others have suggested.  At least rule that out as a culprit.  

 

 

Awol cast iron stomach Experienced

My hair rate / fall out rate increases when I get glutened. (I shed -meow) The years I was self imposed gluten-free I had less hair fall out, so personally I see a correlation. For I then did a gluten challenge and spent many months hoping I'd get it under control again. Time/Patience for recovery is essential and I second the nutrients as support for the body. Nutrients from food and supplementation if possible. Biotin, B vitamins, vitamin D, and omega 3's are all helpful to me getting my hair issues back under control.

Not only does it fall out at an increased rate for me, but also the texture changes to dry and the rate of split ends/over all hair health declines if I'm on a gluten diet or CC. We know on a family basis this increases beyond seeing it in the brush, the shower, I shed all over (meow) . I fear if i don't  remain strictly gluten-free and avoid CC my children will likely shave me bald or make me wear an unattractive hair net so I don't add my hair as accoutrements to their cuisine.

All humor aside-

You do sound like you have had a great health challenge, I am glad you made it through the gravely serious time, and have joined us. I hope we have given you some helpful info to get you on your way. I hope to hear you are one day able to rival the commercial hair model.

Best Wishes.

Alexacourtney01 Rookie

I can understand that struggle,  when I was eating gluten and had to for my scope my hair died, I was so sick I wasn't getting anything to my hair so it just basically shrivelled up and dried out completely.   It's only now. A year and a bit later, and having to cut it all off is growing back healthish ...  it's still dry and I can never seem to get it to not feel completely blah,  work in progress. It's almost at my ears now,  I am waiting in hope it gets longer soon! I only use natural products and a natural hair masks now. And oils and leave ins to hope to help! And only wash it about 1 a week or 2 times depending on the grossness but it seems to help!   

 

wish you all the best on your hair !!! 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Help with tests

    2. - trents replied to Pxidis's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Grain fed cow milk vs 100% Grass fed cow milk

    3. - Scott Adams replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Modified Food Starch

    4. - Scott Adams commented on dixonpete's blog entry in Pete Dixon
      1

      A video with researcher William Parker about Helminthic Therapy

    5. - Scott Adams replied to Julie Max's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Safe and Forbidden lists


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,741
    • Most Online (within 30 mins)
      7,748

    Stephen069
    Newest Member
    Stephen069
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • nanny marley
      Hi thanks Scott I had a phone call from the docters they gave referred me to gastroenterology as a urgent appointment because of the inflammation the kidney test went from stage 2 to stage 3a within 11 month I had one in February too so it's quite a concern at the minute so that is being looked at too the celiac test came back negative but I have been gluten free for over a year so that needs redoing this has been going on a long time for me but I'm finally getting them to listen so hopefully will have some answers soon 🙏
    • trents
      @gfreenc, there is no gluten in milk, whether human or bovine. Gluten is a protein in certain grains but it is broken down into various amino acids during digestion before it gets into the bloodstream and thus it will not wind up in milk. 
    • Scott Adams
      It is definitely possible for you to be sensitive to maltodextrin, even it if is gluten-free. In the United States, maltodextrin is occasionally made from wheat, but it is still considered gluten-free by FDA standards. Here’s why: Why Maltodextrin is Gluten-Free: Highly Processed: Maltodextrin, regardless of its source (corn, rice, potato, or wheat), undergoes an extensive processing method that removes proteins, including gluten. The final product is essentially pure carbohydrate. FDA Standards: For a product to be labeled gluten-free in the U.S., it must contain less than 20 parts per million (ppm) of gluten. Maltodextrin derived from wheat is processed to meet this threshold, making it safe for individuals with celiac disease or gluten sensitivity. Source Labeling: In the U.S., food labeling regulations under the Food Allergen Labeling and Consumer Protection Act (FALCPA) require wheat to be listed as an allergen if used in the product. This helps individuals avoid wheat-derived maltodextrin if they are allergic to wheat (a separate condition from celiac disease). Bottom Line for People with Celiac Disease: Maltodextrin is considered safe for people with celiac disease or gluten sensitivity, even if derived from wheat. If the product is labeled gluten-free, you can trust it adheres to strict FDA standards. However, if you’re still concerned or sensitive to trace amounts, you can opt for products where maltodextrin is explicitly labeled as being derived from non-wheat sources, such as corn or rice.
    • Scott Adams
      Miso can be gluten-free, but it depends on the ingredients and how it's made. Miso is a fermented paste made primarily from soybeans, salt, and koji (a mold used for fermentation). Some varieties also include grains such as rice, barley, or wheat. Rice-based miso is typically gluten-free. Barley or wheat-based miso contains gluten and is not safe for those with celiac disease or gluten sensitivity. Even if miso doesn’t list gluten-containing grains, cross-contamination is possible during processing. Look for a certified gluten-free label to ensure safety. Check the ingredient list and packaging for terms like: "Barley" or "wheat" (contains gluten) or "Certified gluten-free" (safe for celiacs). Brands like Miso Master Organic offer certified gluten-free miso varieties, making it easier to find a safe option. If you’re unsure, opt for miso labeled as gluten-free and confirm with the manufacturer if needed. Always double-check ingredients to avoid any accidental gluten exposure. We have it on our forbidden list because in many cases it can be difficult to know for sure whether it's gluten-free. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.      
    • Scott Adams
      It sounds like you’re navigating a lot of testing and trying to make sense of your results. While I’m not a medical professional, I can share some insights that might help. A calprotectin level of 2500 is quite high and typically indicates significant inflammation in the gastrointestinal tract. This could be due to a variety of conditions, including celiac disease, inflammatory bowel disease (like Crohn’s or ulcerative colitis), or other causes of gut inflammation. The celiac testing results will be important to help rule in or out celiac disease as a cause. Your kidney-related results (stage 3a CKD and GFR readings) are worth discussing further with your doctor. While these levels indicate reduced kidney function, they don’t necessarily mean immediate issues, but they should be monitored closely, especially if there’s ongoing inflammation or another underlying condition contributing to it. As for the milk allergy testing, it’s good to have that information, as dairy can sometimes contribute to symptoms in people with celiac or other gut issues. While waiting for the celiac test results, it might be helpful to keep track of any symptoms you’re experiencing, especially related to diet, and share those with your healthcare team. It’s also worth asking your doctor about follow-ups for the kidney results to ensure you're addressing any potential contributors to inflammation or kidney function. I hope you get clarity soon from your test results. It’s great that you’re being proactive about your health, and you’re definitely not alone in this journey. Take care and keep us posted on how things go!
×
×
  • Create New...