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I was diagnosed with Celiac in Sept 2016. I have been gluten-free for 7 months. 

Pre-diagnosis: hair thinning, dry skin, head aches, awful bloating, etc. Symptoms have steadily improve with bloating here and there. Now, the past month, my hair has taken a dramatic turn for the worse with loss and thinning of hair again - but worse!! Why is this? I need help!

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43 minutes ago, jamie111 said:

I was diagnosed with Celiac in Sept 2016. I have been gluten-free for 7 months. 

Pre-diagnosis: hair thinning, dry skin, head aches, awful bloating, etc. Symptoms have steadily improve with bloating here and there. Now, the past month, my hair has taken a dramatic turn for the worse with loss and thinning of hair again - but worse!! Why is this? I need help!

Hi jamie111. I had the SAME thing!  Turned out I also had hashimotos which is often seen with celiac.  I would have your thyroid antibodies and thyroid levels checked.  My antibodies were up but my thyroid labs were "within normal". I saw my endocrine and told her of all my thyroid symptoms and she was amazing and started me on meds (very low dose) and wow what a difference!

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Hi Jamie!

I completely agree with Pinky.  Have your thyroid fully investigated.  A lot of Dr's will only test TSH and it just doesn't tell the whole story.  You also need Free T3, Free T4, TPOAb andTgAb.  The last 2 are antibody tests.  Your TSH should be close to 1 and both Free's should be within 50-75% of the range to be optimal.  When your thyroid isn't operating optimally you can have a variety of issues, including hair loss.

Another thing to have checked is your ferritin, stored iron.  If that's low it can cause hair loss as well.

Good luck...I hope you get this figured out!

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17 hours ago, janpell said:

I noticed a huge improvement once I started my iron supplements. It still grows very, very slow though but no hair loss anymore.

I think there has been a direct correlation with my anemia and hair thinning.  Unfortunately I have to limit my iron intake as I have a suspected blood disorder but I'm a rare case - under normal circumstances I'd be supplementing much more as I feel it makes quite a difference.   If I were you I'd get your iron tested and then supplement if on the low side - but make sure your levels are monitored as too much iron is a bad thing.

Some other tips I've picked up from my nutritionalist: eat sufficient protein (eggs, chicken, oily fish), fresh fruit and veg.  And from surfing the net:  make sure you are getting enough exercise; also, some people don't use hair products that contain gluten - this seems a bit controversial, but I've changed mine and I think it has helped.    

Also - are you sure your food isn't being cross contaminated as I have heard some people shed hair if they are glutened?

On that tack - something I'd love to know from other celiacs who have problems with oats (most celiacs don't) is if they feel that oats have ever caused hair loss, in the way that gluten has caused it?

Anyway, do let us know if you find any answers!

 

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OMG I think you have been talking to me, I have found in the last 2 months my hair is falling out like crazy!! I am afraid of the brush now because all it does is make me cry, After reading everyone else's comments I am going to make a Dr apt and get the TSH  tests done, Sorry to hear you are going threw this. But I will say it helps people understand that they are not alone.. Thank you so much for sharing your story.   :)

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2 hours ago, vonpop626 said:

has anyone heard about this ...Low-Dose Naltrexone (LDN) and that it can help with celiac?

 

I've read that some people with Crohn's Disease use it and think it can help them.  But I've never read about it being used for celiac disease.

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5 hours ago, vonpop626 said:

has anyone heard about this ...Low-Dose Naltrexone (LDN) and that it can help with celiac?

 

Not for celiac disease.  There are some alternative sites promoting it for autoimmune issues, but no studies have been made to my limited knowledge (I am not a doctor).  Besides the side effects are GI issues!  Not great if you already have a damaged gut. 

I assume you are concerned about hair loss?  How long have you been gluten free?  Have other I issues ruled out?  

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5 hours ago, vonpop626 said:

one year!

Okay, a year of being gluten free.  When was your last celiac antibodies test taken?  It should be done annually or more often if you are having issues.  It can help determine if you are actually diet compliant.

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Ruling out celiac disease as the culprit would be helpful as your hair loss might be related to another autoimmune issue or illness.  

Autoimmune thyroid is commonly linked to celiac disease and if you are hypothyroid that can contribute to hair loss too.  

Edited by cyclinglady

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