Odd hair texture changes - please help!

[chocoholic]

Hi everyone, maybe some of you have the same problem and we can together narrow down the possible reasons.

I was diagnosed with celiac disease August 2019 at age 41, by antibody test and biopsy. I immediately started the gluten-free diet and I'm very diligent, no eating out. In March 2020, my antibodies were still way above the upper normal limit.

I'm caucasian, and as a child, I used to have straight, thick hair. It got a slight wave in my teens but still had what I would call excellent hair.

17 years ago (at 25), I looked at my hair closely and noticed that many had a very odd texture. The terms I'd use to describe it: curly, kinky, coarse, rough, jagged, corkscrew, "frizzy" - both visually and upon running them between my fingers. A few were alternating white and dark (zebra). No apparent hair loss, but I do also have some extremely fine hairs that can be pulled out without any pain or effort. I never pull out the kinked hairs but I've developed a habit of cutting them off. I also have some hairs left that are straight as a ruler. Overall my head is very "frizzy" and heterogenous. They have not been died nor chemically or mechanically treated.

Within those 17 years, I brought it up to various doctors, incl. endocrinologists, but none of them even understood or saw that anything was unusual. They recommended a change of shampoo (!). I repeatedly had various types of hormones tested, incl. sex and thyroid hormones, all with "normal" results. I've considered other factors like fungus (dandruff - I have a extremely dry scalp).

When nutritional values were checked (only a few each time), they were typically low, despite heavy supplementation: zinc, vitamin D, iron - hence my suspicion at some point that absorption may be hindered. 

That said, my mother also has such hair (other than that she looks way younger than her age), but she got it much later in life than I have. She has been tested negative for celiac (blood & endoscopy). She has rheumatoid arthritis, also an immune disease.

I last considered that antibodies may be affecting hair follicles, but while nutrient values may still be low, it's impossible to pinpoint.

I often see such hair on strangers, male & female, young & old, even children.

QUESTIONS: Have any of you experienced this? Have you encountered a change in hair texture after going gluten free? Have you noticed improvement with normalized antibodies or nutrient blood values? I would greatly appreciate your input. For reference, I will attach a photo of some of the hairs I've collected.

 

[trents]

What is your gender?

Though you state you no longer ate out after being diagnosed with celiac disease, it is still very possible to get gluten exposure from grocery store purchased items that, though they don't contain gluten as an intentional ingredient, have experienced cross contamination during harvesting and processing. And other covert sources of gluten are often overlooked, things like supplements and meds. Numerous studies recently have demonstrated that most Celiacs who claim to be living gluten free are actually living low gluten.

Have you had follow-up endoscopy since being diagnosed to check the condition of your villi? You state that blood work still shows nutrient deficiencies so it could very well be that your gut has not experienced healing.

You state your supplement zinc, vitamin D and iron heavily but what about t he B vitamins?

Finally, since your mom has similar hair, I would entertain the notion that it is simply an inherited genetic trait. 

I would really encourage you to get an endoscopy done.

[Awol cast iron stomach]

4 minutes ago, trents said:

gluten exposure from grocery store purchased items that, though they don't contain gluten as an intentional ingredient, have experienced cross contamination during harvesting and processing. 

Yes. This happened with one fish purchase last year. I regularly eat/consume from trusted store. During our state stay at home order this year in April my Brussel sprouts got me from the produce section another trusted store. I had DH lasted 7 weeks. 

I experience hair issues with cc. It appears dy,  rough, more frayed texture to it. I have fine straight long hair so it does not kink the same as your. I experience increased shedding and simple movements etc can cause it to shed for typically 2-3 months.

I believe it's due to inflammation, loss of sufficient of vitamin absorption particularly b's, and dietary  fats. 

 

 

 

[chocoholic]

Hi Trents, thanks for replying.

I'm female. My endoscopy was only 10 months ago, so I won't have another one for another year and 2 months, and that's only because a polyp was removed from my colon the first time. Normally, it's 3 years later. How often do you get an endoscopy?

My bloodwork from March only tested for antibodies and liver values (one of which is also high). No nutrients checked. I think I will have to pay out of my own pocket for a more thorough test. You asked about B vitamins: only had B12 checked occasionally in the past, which strangely tended to be high, even when not supplementing.

I'm very aware of ingredients, labels, and cross contamination. I have a degree in nutrition, I might add. Not related directly, but I'm very detail-oriented and the background helps.

I was guessing that someone would suggest genetics. I pointed out that my mom got kinked hair in her 60s, me in my 20s. She also used to have straight hair. She has a twin sister who still has straight hair like a ruler. Given all the health issues between her and me, I think that genetics is no explanation, besides, there still is a mechanism behind the follicular changes, and that is not genetics.

 

[trents]

Wait. You mention a polyp was removed from your colon. That would be found in a colonoscopy, not an endoscopy.

[chocoholic]

I had both an endoscopy and a colonoscopy in the same session.

[trents]

Thanks for the clarification. 

But you did not answer the main issue. What were the results of the endoscopy? Did it show healing of the villi?

I have had three endoscopies since my celiac disease diagnosis about 18 years ago. The first one was done maybe after one year, the second one done at about year three I think and the last one about two years ago. I was very discourage that the first two did not show healing of the villi. But I was very encouraged that the third one showed full recovery. I think the difference maker was retirement from the work place that allowed me to have more total control over what I was eating.

[chocoholic]

You only asked about follow-up...My biopsy was supposedly Marsh 3a. I can't help questioning it because at first, the doctor mixed up footage of the procedure with that of another patient, and then it took a long time for me to receive the results. Also, my level of tTG-antibodies (668 RE/ml) was 30 times the upper normal limit, and combined with some symptoms that are still lingering, and the fact that the ABs still haven't returned to normal makes me wonder if the villi were more damaged than 3a. My first bloodtest was done via GP in a different lab than the gastro-clinic had theirs tested, so there's no question that the blood results were correct.

Very interesting that your villi only healed after years on the diet. Are you saying that you were diagnosed about 1 year prior to having your first endoscopy? So during that time, you ate gluten-free but a year+ into the diet the damage showed anyway? What stage on the Marsh scale were you? Did you find that your antibodies correlated with the villi healing, through the years?

[trents]

No, I wasn't counting the very first endoscopy that was part of the diagnosis. So counting that one, there have been four I think. It is not uncommon to take years to heal the villi, especially when you're getting inadvertently glutened on a semi-regular basis. In my working years I did my best to avoid gluten when eating in the company cafeteria, meetings, department celebrations, etc. but you can only do so much.

Given the confusion and mishandling of your last endoscopy results, I think I would push for a redo.

[cyclinglady]

I had a repeat endoscopy five years after my diagnosis, which revealed a completely healed small intestine.  Unfortunately, it found autoimmune gastritis which was not there when I was diagnosed and was the root cause of my current symptoms  and not active celiac disease.  Here is the kicker, at the time I had the repeat endoscopy, my DGP IgA was not normalized.  In fact it was higher than I was diagnosed.  The DGP IgA was the only positive I had ever on many repeated complete celiac blood tests.  Never a positive on the TTG or EMA and I had a Marsh Stage IIIB.  

The antibody blood tests were designed to help diagnose celiac disease, but endoscopy confirms it.  The blood tests were never meant to monitor dietary compliance or active celiac disease.  Doctors use them because they are the only non-evasive tool-in-the tool-box.  Helpful but not perfect to indicate healing.  
 

I am not an expert on antibodies testing, but I can also share that my thyroid antibodies were over 2,000 (>35 was positive) when I was diagnosed with Hashimoto’s.  My only symptom was a slightly enlarged thyroid and experienced no hypothyroid symptoms.  Over the past 20 years, the tests have been repeated.  They are always very  elevated.  My doctors have told me that repeating antibodies testing is not useful when it comes to thyroid.  Maybe the same thing applies to celiac disease.  

 

 

Edited July 8, 2020 by cyclinglady

[knitty kitty]

chocoholic,

I found this article that says that copper deficiency can cause changes in hair like you have described and shown in your photo. 

https://www.buoyhealth.com/diagnoses-a-z/copper-deficiency/

Here's a general overview of copper deficiency...

https://draxe.com/nutrition/copper-deficiency/

 

Copper is needed in red blood cell production.  Your B12 might be elevated because your body doesn't have enough copper to utilize B12 in blood production.  

Copper deficiency also figures in arthritis and osteoporosis. 

You might be wise to pursue testing for vitamin and mineral deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Deficiency testing is part of follow up care for Celiacs.

Hope this helps!

Knitty Kitty

Eat more Liver!  It's a great source of copper!

 

9 hours ago, chocoholic said:

Hi Trents, thanks for replying.

I'm female. My endoscopy was only 10 months ago, so I won't have another one for another year and 2 months, and that's only because a polyp was removed from my colon the first time. Normally, it's 3 years later. How often do you get an endoscopy?

My bloodwork from March only tested for antibodies and liver values (one of which is also high). No nutrients checked. I think I will have to pay out of my own pocket for a more thorough test. You asked about B vitamins: only had B12 checked occasionally in the past, which strangely tended to be high, even when not supplementing.

I'm very aware of ingredients, labels, and cross contamination. I have a degree in nutrition, I might add. Not related directly, but I'm very detail-oriented and the background helps.

I was guessing that someone would suggest genetics. I pointed out that my mom got kinked hair in her 60s, me in my 20s. She also used to have straight hair. She has a twin sister who still has straight hair like a ruler. Given all the health issues between her and me, I think that genetics is no explanation, besides, there still is a mechanism behind the follicular changes, and that is not genetics.

 

 

 

[chocoholic]

Cyclinglady, thank you for sharing. From what I recall, thyroid antibodies were never tested on me. I have all results in writing and I'll have a look. Is your thyroid ok now when your antibodies are still high? Have you noticed any hair changes throughout your life?

Knitty Kitty: Thanks for taking the time to search out that info. I will have a look into elevated B12 & low copper. I considered copper deficiency years ago, but being a vegan then made it seem very unlikely; I got a lot more copper in my diet than zinc, which makes the body retain it even more. If anything, I concluded I was zinc deficient (which a test later confirmed - despite supplementation btw - , but it didn't test for copper). When researching studies and anecdotes, I found various other factors connected to hair texture: e.g. vitamin A, vitamin C, iron, chemotherapy, liver disease, thyroid disorders, PCOS & rheumatoid arthritis (both also autoimmune). I wonder though if there could still be a common denominator for it, with nutrient deficiencies playing only a contributing role in a larger physical process. So far it seems that a common thing is auto-immune diseases.

[chocoholic]

I've found this discussion by rheumatoid arthritis sufferers: several mention a change of hair texture from straight to curly on RA-medication, and liver values. For anyone reading here and also curious.

https://carlascorner.wordpress.com/2015/03/26/be-careful-for-what-you-wish/

[cyclinglady]

Ask any hair dresser/stylist.  Hair texture can change throughout your life.   It is common.  Most common reason is fluctuating hormones (e.g. pregnancy, puberty, menopause).  I would worry about hair loss over texture.  My hair has changed.  Wavy (kid) to curly (teen, wore an Afro, no permanent  in the 70’s).  Hair shedding after pregnancy.  Menopause, hair back to wavy.  Lost most of my curl and all my frizz.  Things like chemo for cancer treatment or stress,  can change your hair.  
 

Guess what, my feet grew a half size when I hit my 30’s.  Another change that is common.  
 

Life.  Sometimes it is better to accept change.  It snowballs when you hit menopause. 
 

oh, forgot your question.  Thyroid.  Nodules and enlargement gone after going gluten free, but antibodies are still elevated and I take thyroid replacement since my thyroid never came back.  If you have celiac disease, your thyroid should be screened.  

Edited July 8, 2020 by cyclinglady

[chocoholic]

Cyclinglady, yes, it is common, I know.

I could be wrong, but I doubt that generally hair dressers, most of whom use well-known toxic subtances, would be knowledgeable or even interested enough to research this issue, especially since the common assumption is "it's just hormones". Wouldn't dermatologists and endocrinologists know more than hair dressers?

It doesn't explain why not everyone's hair gets kinked, even at high age. Nor does it explain my case, as I repeatedly had sex hormones, thyroid & its hormones and insulin tested in normal ranges, and I got this hair well after puberty and well before menopause (I don't seem to be perimenopausal). Is there a source you could point me to that references hormones as "the most common reason"? Not being snarky here, truly curious.

If I accepted it as "life", then I wouldn't have received the diagnosis celiac disease, which I also had to actively pursue. I'm glad that some people try to get to the bottom of things; that's the essence of science.

[cyclinglady]

I am sorry that I did not communicate clearly.  It was not my intent to offend you.  There is very little scientific evidence for change in hair texture.  Hairdressers and doctors theorize that it may be due to many things like hormones,  chemo, malnutrition or HIV.  But no one knows for sure.  Not the best link, but nothing I quickly found in reliable site like PUB MED:
 

https://www.livescience.com/33654-hair-older.html

You were just diagnosed in August of 2019.  It can take a year or longer to heal.  Chances are you have been ill from celiac disease for many years.  That is a lot of time to damage your body and we know celiac disease is systemic.  We also know that you can go on to develop other autoimmune disorders.  
 

You may need more time to heal.  Address any dietary deficiencies you may have.  Correct any hormonal issues.  Forty is not too young for perimenopause.  I had my kid at 40 and then months later struggled with perimenopause with symptoms that lasted a decade.  
 

I am probably going to develop a 4th AI.  I am doing my best to eliminate or slow down that process.  My doctors know that I am against taking prescriptions drugs as those side effects can be horrible for anyone, but medications trigger allergy responses for me.  I have to weigh the risks versus the benefits.  I also know that quality of life is important, so I might be changing my mind later down the road.   

I understand your frustration about your delayed diagnosis.  Most of us have had the same experience.  😢
 

 

 

[knitty kitty]

chocoholic,

What an interesting rabbit hole!  I've briefly come up for air.....

The texture changes of the hair remind me of kwashiorkor...and niacin/tryptophan conversion problems with pyridoxine deficiency....and omega six deficiency.....all have hair production impacts...

The high copper levels imply impaired copper ...and vitamin C deficiency....six types of scurvy???!!! with hair texture changes....

zinc deficiency despite supplementation???....

Leflunomide is a pyrimidine inhibitor.....riboflavin and thiamine affected....and niacin is a pyrimidine, too....and that goes back to the kwashiorkor...

And liver involvement and vitamin A...

Very interesting rabbit hole, indeed!  Where's my carrots?  Must get back down there!  Love research and learning new things!

Kitty

8 hours ago, chocoholic said:

 

Knitty Kitty: Thanks for taking the time to search out that info. I will have a look into elevated B12 & low copper. I considered copper deficiency years ago, but being a vegan then made it seem very unlikely; I got a lot more copper in my diet than zinc, which makes the body retain it even more. If anything, I concluded I was zinc deficient (which a test later confirmed - despite supplementation btw - , but it didn't test for copper). When researching studies and anecdotes, I found various other factors connected to hair texture: e.g. vitamin A, vitamin C, iron, chemotherapy, liver disease, thyroid disorders, PCOS & rheumatoid arthritis (both also autoimmune). I wonder though if there could still be a common denominator for it, with nutrient deficiencies playing only a contributing role in a larger physical process. So far it seems that a common thing is auto-immune diseases.

 

 

 

 

 

[chocoholic]

Knitty Kitty, those are a lot of good associations you've made, in such a short time? Wow! Yes, I've come across these over time as well. It can be hard to see the forest for the trees. So I was hoping that if a lot of people with this type of hair share details of what they know they're dealing with (deficiencies, disorders..), then we might be able to narrow things down.

Cyclinglady, thank you for the kind words. I tend to forget the fact that celiac and associated issues have been going on inside me for an unknown length of time (by the feel of it, a long time). I've internalized the belief that since a gluten-free diet is the only way to manage the disease, healing should start the day I went gluten-free. Perhaps it did, but I can't feel it. Articles on celiac disease don't tell you that it can take years to heal and for antibodies to normalize - only celiacs will tell you in forums (my experience). That part I find harder to accept than eating gluten-free for the rest of my life. It's made to sound almost easy to only 'leave out gluten' compared to doing so yet still feeling ill for a long time - that is the mean part.

I'm so sorry you're dealing with possibly a 4th AI disease. Perhaps you can take comfort in knowing you do so much to educate yourself. I've been silently reading in this forum since before joining and noticed you give a lot of good advice.

[Posterboy]

1 hour ago, chocoholic said:

So I was hoping that if a lot of people with this type of hair share details of what they know they're dealing with (deficiencies, disorders..), then we might be able to narrow things down.

chocoholic,

Knitty Kitty has given you some nice ideas/good suggestions......as she always does...

this is a two part response 1) about nutrients that might help you and 2) about many of the micronutrients still low in Celiac's that doctors often overlook today.....or worse yet don't even (know to) look for today....at least the Mayo Clinic is/has raised the "Red Flag" on these issue's recently....

the Corkscrew hair (if that was your question) is a classic example of Scurvy.

Here is a couple links about it....

https://www.healthline.com/nutrition/vitamin-c-deficiency-symptoms#section2

see symptom two in the heathline link and this research about a Vitamin C deficiency and Corkscrew hair...

entitled "Follicular Hyperkeratosis, Hemorrhage, and Corkscrew Hair"

https://jamanetwork.com/journals/jamadermatology/article-abstract/405107#more-multimedia-tab

as for lessons learned from others on nutrient deficiencies in Celiac's I wrote a Posterboy blog that might help you about that question entitled "Micronutrient Deficiencies Are (Still) Common in Contemporary Celiac Disease Despite Lack of Overt Malabsorption Symptom"

You might do you good to read the comments....

Good luck on your continued journey.....and hopefully it will help you to know you are not alone in your journey.

I hope this is helpful but it is not medical advise.

Posterboy,