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

Hairloss - New symptoms after diagnosis and gluten-free diet


Juca

Recommended Posts

Juca Contributor

I am new to the forum and I was wondering of anyone can help me.

I have been diagnosed with celiac disease 6 months ago. In the past 2 months I have been experienced many random NEW symptoms. They are mostly classic celiac disease symptoms, but it is strange that I am experiencing them for the first time after going gluten free. 

I have had nausea and abdominal pain after eating, little blisters all over my hands, etc. Most of these I was able to control by restricting my fodmap intake.

However, since a month now, I have been losing a LOT of hair. It is at least down to half I used to have and I have no idea what is causing it. 

The only other symptom that appeared more or less at the same time and has not gone away concerns my skin. The skin on my chest became rough and now it even has little pimples. I initially thought it might be related to summer sun or me going off the birth control pill, but now I wonder if there is a common reason behind the hairloss and skin issues. 

When diagnosed I had rock bottom iron, b12 and folic acid, low vit D and normal vit A. I had iron IV and still having b12 injections. Iron and folic are back to normal, b12 almost normalized. I take vit D, folic acid, vit C and cod liver oil supplements, occasionally primrose oil as well. I stopped birth control pill shortly after diagnosis and do not wish to go back on.

I am really worried about the hairloss, any ideas? 


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



Celiac.com Sponsor (A8-M):



Gluten-free-01 Enthusiast

I had been on birth control for many years and then the side effects of going off it were scary. I lost a lot of hair, my hair was greasy, I had acne, my periods were irregular, I had panic attacks, heart palpitations and tachycardia. My endocrinologist told me the withdrawal effects can last for a year or even more.

I also met a paramedic at the time and we were talking about it and he said that honestly birth control is **** and everyone should avoid it. He had seen many women or young girls with complications caused by the pill – specifically pulmonary embolism and thrombosis.

So, I think your issues may be caused by stopping the pill.   

ravenwoodglass Mentor

Have you talked to your OB/GYN?  I experienced hair loss after stopping the pill. I don't think that is unusual. I also lost hair after the birth of each child. If the loss is patchy you should see a derm but if it is a diffuse thinning this may be normal for stopping the hormones.  It wouldn't hurt to maybe take a stress B for a bit.

Juca Contributor
8 hours ago, Gluten_free_01 said:

I had been on birth control for many years and then the side effects of going off it were scary. I lost a lot of hair, (...). My endocrinologist told me the withdrawal effects can last for a year or even more. (...)   

1 year?! Did the hairloss start immediately? Because for me it only started a few months later.

Did your endocrinologist recommend any steps to facilitate the process? 

7 hours ago, ravenwoodglass said:

Have you talked to your OB/GYN?  I experienced hair loss after stopping the pill. I don't think that is unusual. I also lost hair after the birth of each child. If the loss is patchy you should see a derm but if it is a diffuse thinning this may be normal for stopping the hormones.  It wouldn't hurt to maybe take a stress B for a bit.

Not patchy thank God! 

I'll ask my nutritionist what she thinks. She was going more towards copper deficiency, which didn't seem to fit the timing of events. I'll ask if there is a risk of getting to much B12, since I am still taking injections. 

Just met with my OB/GYN, she didn't seem to see a connection, so I'll ask. If I wasn't a pain in the *** with the doctors, I would still be without a celiac disease diagnosis. 

Thank you both for your help, now I have clues to follow up on. I am so tired of not understanding my body sometimes..

ravenwoodglass Mentor
13 minutes ago, Juca said:

1 year?! Did the hairloss start immediately? Because for me it only started a few months later.

Did your endocrinologist recommend any steps to facilitate the process? 

Not patchy thank God! 

I'll ask my nutritionist what she thinks. She was going more towards copper deficiency, which didn't seem to fit the timing of events. I'll ask if there is a risk of getting to much B12, since I am still taking injections. 

Just met with my OB/GYN, she didn't seem to see a connection, so I'll ask. If I wasn't a pain in the *** with the doctors, I would still be without a celiac disease diagnosis. 

Thank you both for your help, now I have clues to follow up on. I am so tired of not understanding my body sometimes..

If you are still getting B12 injections don't add in a sublingual b12. 

Gluten-free-01 Enthusiast
50 minutes ago, Juca said:

1 year?! Did the hairloss start immediately? Because for me it only started a few months later.

Did your endocrinologist recommend any steps to facilitate the process?

In my case the hair loss started about a month after I went off the pill and lasted for about half a year. But I also had a lot of stress at the time so maybe this could be another reason for the hair loss. In general, the withdrawal effects can really last for a year or so.. e.g. irregular periods.

I wouldn’t say that the process can be facilitated.. the body was kind of ‘addicted’ to the drug and it takes time for your body to find its balance again.

The good thing is that it will be ok, in the end.. your body will adjust.. don’t worry too much about it :) If you’re like me the hair will grow back and the other withdrawal effects will also disappear.

I’d also suggest that you get your thyroid checked – hair loss can be a symptom of hypothyroidism, for instance.       

knitty kitty Grand Master

Open Original Shared Link

Here's an article that looks at hair loss due to nutritional deficiencies.  

Celiac Disease causes malabsorption which results in malnutrition.  The B vitamins all work together.  You might benefit from taking a B-Complex vitamin like ravenwoodglass suggested.  My hair thins out if I don't get enough Niacin and Zinc.  

 

 


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



Celiac.com Sponsor (A8-M):



Feesa Apprentice

Hello,

I have the same issue with the hair loss a few months after going gluten free, I have been getting the b12 shot and was also told to take Vit D and Calcium, Also told it was because my guts are still not happy after all i put them thru, It's very upsetting losing the amount of hair I have, my right side of my head is about 65% thinner then the left...Was told it see a Diet person right away. 

mcbphd1 Explorer

When you went gluten free did you switch to a lot of rice and rice products?  I have had hair loss twice over the past several years.  Once was due to low thyroid.  The second time was possibly due to over exposure to arsenic in brown rice and rice products - I also had skin issues and severe anxiety and brain fog.  After lots of testing, my doctor and I concluded I was slowly poisoning myself from eating 1 - 1.5 cups of brown rice a day.  I am now grain free except for corn and the hair loss stopped after a few weeks, brain fog cleared in a couple of months

.

  • 4 weeks later...
Juca Contributor
On 9/26/2017 at 3:15 PM, mcbphd1 said:

When you went gluten free did you switch to a lot of rice and rice products? 

No, not really. I had done my homework, so I reduced all grains substancially to give my guts a chance to heal. I increased all vegetables substancially and am basically going high fat, low carb. 

That is why I had a few hicups along the way, my diet was too high in FODMAPs (nuts, fruit, avocados) but I made the necessary adjustments. 

I think my hairloss is finally slowing down, but my skin is getting worse, pimply on chest and neck. :(

cyclinglady Grand Master

Have you ruled out the common Keratosis Pilaris (KP) also know as chicken skin?  

Open Original Shared Link

Juca Contributor
3 hours ago, cyclinglady said:

Have you ruled out the common Keratosis Pilaris (KP) (...) ?

Good point. Because it doesn't feel like acne. It is very very similar to Keratosis. Though in a different area and it appeared in the summer. I wonder if Keratosis can also be hormone triggered?...

I am treating with chemical and mild physical peeling, and tretinoin. Little improvement only. Hoping it disappears with a little patience. 

 

Thank you for the tip!

poroporo Newbie

Before celiac diagnosis, I was suffering from hairloss, I had a very obvious empty spot of no hair in middle my head and hairline was withdrawing. After going gluten free, hair came back, hairline got better and the bald spot was a hair spot again. Then 5-6 months later hairloss started occuring again. Iron is normal, b12 most likely normal. There's no balding neither on my moms or dads respective family history.  

Archived

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

  • 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 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    2. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    4. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,098
    • Most Online (within 30 mins)
      7,748

    BothySmithy
    Newest Member
    BothySmithy
    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
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.