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Hey everyone,

I've been diagnosed with possible celiac.  I have not had the blood test but have had an endoscopy. GI doc said he saw flattening of the villi,

but the biopsy was normal.  I had been gluten free for about 8 months before the endoscopy though, and doc said this could make biopsies be normal.

I am NOT willing to do gluten challenge--have extreme reaction to gluten!  My stomach problems and other issues will be terrible for 2 months if I eat a stinkin piece of bread!

(which I def don't do anymore :0)

 

My question is about hair loss.  My hair started falling out about about 3 months before going gluten free and before I ever knew I might have celiac. 

I have had a pretty extreme case of what seems like dandruff (intense burning, flaking, itching) for many years but never had hair loss with it until now.  I have lost half my hair

in last 10-11 months.  After doing a biopsy on my scalp recently, it just showed inflammation.  I've been on a steroid solution for scalp for a few months but only helps a bit

with burning, flaking---not hair loss.  I didn't know if this could be related to celiac, or not.  I also have mild to intense burning skin sometimes with occasional itchy rash

usually on chest or stomach.  From what I've read about DH rash, it doesn't really sound like that (I don't have any blisters).

The rest of my history is constant muscle pain, nerve pain, extreme fatigue for the last 25 years. (Diagnosed with Fibro years ago), plus many other annoying things!

Just wanted to get your opinions as most docs are clueless!

Thanks!

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12 hours ago, Jen1104 said:

Hey everyone,

I've been diagnosed with possible celiac.  I have not had the blood test but have had an endoscopy. GI doc said he saw flattening of the villi,

but the biopsy was normal.  I had been gluten free for about 8 months before the endoscopy though, and doc said this could make biopsies be normal.

I am NOT willing to do gluten challenge--have extreme reaction to gluten!  My stomach problems and other issues will be terrible for 2 months if I eat a stinkin piece of bread!

(which I def don't do anymore :0)

 

My question is about hair loss.  My hair started falling out about about 3 months before going gluten free and before I ever knew I might have celiac. 

I have had a pretty extreme case of what seems like dandruff (intense burning, flaking, itching) for many years but never had hair loss with it until now.  I have lost half my hair

in last 10-11 months.  After doing a biopsy on my scalp recently, it just showed inflammation.  I've been on a steroid solution for scalp for a few months but only helps a bit

with burning, flaking---not hair loss.  I didn't know if this could be related to celiac, or not.  I also have mild to intense burning skin sometimes with occasional itchy rash

usually on chest or stomach.  From what I've read about DH rash, it doesn't really sound like that (I don't have any blisters).

The rest of my history is constant muscle pain, nerve pain, extreme fatigue for the last 25 years. (Diagnosed with Fibro years ago), plus many other annoying things!

Just wanted to get your opinions as most docs are clueless!

Thanks!

Have you had your thyroid thoroughly checked?

have you had a sleep study?

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Thanks for reply.  I have had my thyroid and some of my vitamins checked. 

I just had my TSH and T3 checked, which was normal.  I need to check for Hashimotos but haven't

done it yet.  My B12 was a bit low so taking supplement for that.

I have not had sleep study done but need to, I guess :-)

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52 minutes ago, Jen1104 said:

Thanks for reply.  I have had my thyroid and some of my vitamins checked. 

I just had my TSH and T3 checked, which was normal.  I need to check for Hashimotos but haven't

done it yet.  My B12 was a bit low so taking supplement for that.

I have not had sleep study done but need to, I guess :-)

My severe sleep apnea made it so I was exhausted no matter how much sleep I got. I would even almost fall asleep at red lights. It's very easily dx and a sleep study should cost the same as a doctor visit. It was actually kind of fun to do. 

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Celiac Disease causes malabsorption which results in malnutrition.  Many newly diagnosed Celiacs have nutritional deficiencies.  

Here are a couple of articles that I hope will help.

https://www.livestrong.com/article/460603-vitamin-deficiency-thinning-hair-in-women/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315033/

 

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Thanks everybody!

I did have my iron levels checked as well as Vit D, magnesium, B6 and B12.  All were normal except B12 which was 188 with optimal level being between 200-500.  The doc told me I didn't need a B12 injection though, just supplement.  I've also been taking multi-vitamin for last month or so.  So far not helping.  I really feel like the scalp issues are making hair fall out but don't know what to do about it.  All docs do is have me try yet another steroid on scalp.

What do you guys think about the burning, itchy skin??  It's over a lot of my body today, no rash with it now, but really uncomfortable, UGH!

 

 

 

 

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 I’m so sorry your going through that with your hair. It’s hard and frustrating to watch your locks just fall out daily. I’m having the exact same issues. I had my thyroid checked and my levels were “subclinial hypothyroid”doc doesn’t want to retry me on hormone replacement because I had major side effects. For now just watching my numbers every few months. I have a large amount of dandruff that has not gone away and don’t know if it’s the cause in my case as well. Doc said highly unlikely the thyroid is bad enough at my levels to be losing hair. Did you see a dermatologist for the diagnosis with inflammation to your scalp? My doctor gave me a dandruff shampoo (prescription) I think it starts with a k Ketoconizole (that’s definitely not how you spell it) and it helped with the dandruff and itching but the hair just keeps falling out. I’m giving the shampoo a break just incase it’s making it worse. Really wonder what could help our hair grow back. I’ve been on biotin for like 9 months and no improvements. Let me know if you find relief. 

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11 hours ago, Jherm21 said:

 I’m so sorry your going through that with your hair. It’s hard and frustrating to watch your locks just fall out daily. I’m having the exact same issues. I had my thyroid checked and my levels were “subclinial hypothyroid”doc doesn’t want to retry me on hormone replacement because I had major side effects. For now just watching my numbers every few months. I have a large amount of dandruff that has not gone away and don’t know if it’s the cause in my case as well. Doc said highly unlikely the thyroid is bad enough at my levels to be losing hair. Did you see a dermatologist for the diagnosis with inflammation to your scalp? My doctor gave me a dandruff shampoo (prescription) I think it starts with a k Ketoconizole (that’s definitely not how you spell it) and it helped with the dandruff and itching but the hair just keeps falling out. I’m giving the shampoo a break just incase it’s making it worse. Really wonder what could help our hair grow back. I’ve been on biotin for like 9 months and no improvements. Let me know if you find relief. 

 

Hey Jherm21,

Thanks for sharing your story and I'm sorry you're having this problem too.  It's getting to the point where I don't want to leave the house!  I did see a derm and have also been on the ketoconazole shampoo for several months and it helps slightly with itching and burning scalp, but not with hair loss.  I was told to use a good conditioner after using this shampoo as it can really dry your hair out and make it brittle. 

I'm in my early 40's and derm said it may be hormones or female pattern baldness!  That's not something a woman wants to hear!  My hair is growing back though--it's about 1-2 inches long in spots, but other hair is still falling out.  I wouldn't think it would be female baldness if it's growing back.  I really feel like it is the inflammation on my scalp, but don't know what to do about it.

Very frustrating!

 

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I'm so sorry you are going through this. I did, too. My dermatologist said that sometimes after an illness, or during, the shedding phase of hair growth and fall out gets all topsy turvy and the hair just keeps on shedding. Usually with time and better health, this re-balances and slowly but surely the pattern returns to normal. She counseled me, as others have encouraged you, to get a check up looking at total health including thyroid, vit. D, etc, which you've done. She also said that some people have an autoimmune disease where the scalp feels burning and hair loss occurs. This sounded like what was happening to me. Burning, intense soreness and hair loss. I read that this can be Lichen Planopilaris. I was not diagnosed with this, it's just something I wondered about as the description fit what my dermatologist had described. What helped me is getting a very short haircut and washing my hair daily or every other day with a shampoo that contained zinc pyrithione. I also quit dairy as I felt that was inflammatory for me. I don't know if I'll continue to get periodic flare ups of this, but I wanted to send you encouragement and empathy. Best wishes, it's hard to go through!

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hello. I had similar issues with hair falling out, tested low for T3 although TSH was in the bottom edge of the OK range. I tried liothyronyn synthetic thyroid supplementation, and that did help with the hair, but it caused other issues and I lost my sense of smell, which has been one of my ongoing signs when there is inflammation going on somewhere, so decided that was not good for me overall. 

I also tried various "natural" thyroid supplements involving bovine thyroid, but that caused my hair to fall out even more!!!  

Then seborrheic dermatitis developed on my scalp and I was really a mess.  Went to a dermatologist and they prescribed this nasty shampoo that did reduce the dermatitis but was really harse on the hair and did not help the falling out problem.  After all those fun times, I finally tried apple cider vinegar after seeing this youtube...i started with a 50% solution and gradually went up to 75% and it is now totally gone (as I started trying out the ACV  I did use Nizarol shampoo, over the counter with the same drug as the prescription shampoo but not as strong, a few times, letting it sit on the scalp for 15 minutes, but now I don't use it as it is completely gone):

 

 

 

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2 hours ago, Beverage said:

hello. I had similar issues with hair falling out, tested low for T3 although TSH was in the bottom edge of the OK range. I tried liothyronyn synthetic thyroid supplementation, and that did help with the hair, but it caused other issues and I lost my sense of smell, which has been one of my ongoing signs when there is inflammation going on somewhere, so decided that was not good for me overall. 

I also tried various "natural" thyroid supplements involving bovine thyroid, but that caused my hair to fall out even more!!!  

Then seborrheic dermatitis developed on my scalp and I was really a mess.  Went to a dermatologist and they prescribed this nasty shampoo that did reduce the dermatitis but was really harse on the hair and did not help the falling out problem.  After all those fun times, I finally tried apple cider vinegar after seeing this youtube...i started with a 50% solution and gradually went up to 75% and it is now totally gone (as I started trying out the ACV  I did use Nizarol shampoo, over the counter with the same drug as the prescription shampoo but not as strong, a few times, letting it sit on the scalp for 15 minutes, but now I don't use it as it is completely gone):

 

 

 

Thanks super much! Going to try soon.

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Caspi-Ann, thanks for your reply.  I'll look into what you suggested.  I have given up dairy for the most part so I don't think that could be a problem.  I just ordered gluten-free shampoo and gel just to see if maybe it would make a difference.

Victoria, thanks for the info and video!  I will definitely try the apple cider vinegar soon!

 

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