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Juca

Hairloss - New symptoms after diagnosis and gluten-free diet

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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? 

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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.   

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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..

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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. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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.       

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315033/#!po=62.2807

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.  

 

 

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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. 

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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

.

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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. :(

Edited by Juca

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

https://www.aad.org/public/diseases/bumps-and-growths/keratosis-pilaris


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Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

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Allergies and Food Intolerances

Diabetes -- January 2014

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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!

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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.  

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