From Total Hair Loss to a Mohawk...and Growing...

[You can read an April 2015 update of Rachel’s progress here and see photos from April 2016 of her new head of curls here.] 

This post weaves two stories:

  1. One of my absolute proudest and most rewarding experiences as a nutrition coach
  2. My personal, 30-year struggle with hair loss – alopecia areata to be exact

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If you’ve suffered from hair loss (even if you don’t have a history of bald spots), grab a cup of tea – I didn’t edit this post down to the recommended 500-700 words. :)

In early June, a worried mother from Tennessee wrote to me explaining her daughter’s situation.

She said, “My 14 year old daughter started losing hair in the 3rd grade. She’s now completely bald. She has MTHFR gene mutation, Hashimoto’s, and alopecia. Prescription meds are mostly what has been thrown at us. Supplements and vitamins have not changed a thing for her. She’s gluten-free for the most part. She’s depressed, unmotivated, and extremely tired – she will often sleep until mid-afternoon. She also has extreme acne. It’s overwhelming and disappointing because no one has been as to help her so far. We’re lacking a good plan of care and someone with complete knowledge in the field to guide us. Please put her on your waiting list.”

Given my history of alopecia – starting around the age of 12 (I’m now 45) – her plea for help struck a deep chord with me. I immediately wrote back telling her that I wanted to speak with both of them.

Let’s call this young woman Rachel and her mother, Michelle. When I shared with Michelle that I’d like to write about Rachel’s story, she said, “Yes, I hope her story inspires and motivates someone else to take the same approach to their health.”

To begin, Michelle said that they’d worked with a pediatrician, dermatologist, endocrinologist, chiropractor, nutritionist, and other doctors and nurse practitioners and that they’d tried electrodermal screening. They’d also tried elimination diets – more than once. Nothing had worked.

Rachel’s thyroid antibodies (indicators of Hashimoto’s) have been high – in the four digits for at least two years, with the highest being a whopping 9800. They’re now 600, which is incredible improvement. I’m just tickled to death. She’s over the hump and it’s all downhill (in a good way) from here. (Remission = antibodies less than 30.)

But I’ve gotten ahead of myself…

This poor girl had been hit with a double whammy: hair loss is a hallmark symptom of low thyroid function and she had the additional autoimmune condition, alopecia, stacked on top of the hypothyroidism.

Really, she had a triple whammy: she’s also in puberty.

I had serious concerns that with two autoimmune conditions at such a young age – and extremely high antibodies - if something wasn’t done to tame her hypervigilant immune system, Rachel would surely be set up to develop at least one other manifestation of autoimmunity – soon-like. (This is true for anyone, no matter what age.)

I explained that given that 70-80% of the immune system is in the gut, another Elimination/Provocation diet was in order, which I know wasn’t too appealing to a teenager who: 1. Was skeptical that anyone could help her; 2. Wanted to eat what her friends were eating; 3. Had already been through a few iterations of this diet with no improvement.

I shared that when it comes to healing systemically, hair loss and regrowth can be one of the last things to improve. Because we don’t need hair and nails for survival, the body may prioritize other life-dependent systems like brain, vascular, neurological, and digestive function. I explained that they might see no hair regrowth during our time together, but that it would likely come in the months ahead.

Rachel agreed to give things another go and the three of us began working together mid-July. The trust that they put in me was very humbling, to say the least. I was bound and determined to get Rachel results.

Michelle agreed to walk through the healing program with her daughter, which thrilled me. This woman is the true definition of a wonderful mother - she’s got the eye of the tiger when it comes to Rachel’s health, but she isn’t overbearing and controlling. She wants Rachel to have independence and her own voice through this journey.

In our first session, I explained my approach to the Elimination/Provocation diet* and the accompanying gut healing that was missing from their prior attempts: probiotics, glutamine, and bone broth. Our program also included a hydrochloric acid challenge, as low stomach acid can be a major culprit in hair loss. They were ready.

[* If you’ve been with us a while, you know that the Paleo diet isn’t our starting place. We don’t have anything against it (or AIP – autoimmune Paleo) and agree that these diets can be helpful for some. And as you can see, even with Rachel’s high antibodies and extreme situation, she’s healing without being grain- or legume-free. It can be done. Every situation is unique.] 

During this conversation, I was struck by how downtrodden Rachel was. She was almost inaudible – I had to ask her to repeat herself a few times. Her words were mumbled and muffled. The sense of defeat was palpable – it was heartbreaking.

After our first session, Michelle wrote:

“Rachel has stuck to the diet completely. She seems to be happier and comes out of her room more often. She does seem better to me. Her acne is clearing up, which seems to have given her hope.”

I was over the moon.

One month into our program, Michelle wrote:

“Today, Rachel said, ‘Feel my skin.’ She had shaven her legs. Usually, when she would shave she wouldn’t have stubble for several days because the hair was so slow-growing. Her legs felt stubbly this afternoon after shaving this morning. We are thrilled. She also has a few hairs, like two or three, on her head. The rest is peach fuzz. We’re making progress.”

I’d now like to take a break from Rachel’s story to share what was going on for me simultaneous to her journey. I have a long history with alopecia areata and was losing hair like crazy and today, have two of the biggest bald spots I’ve ever had.

About a year ago, I was getting more spots – small ones, about the size of a quarter. In past years, my regrowth had been pretty quick. But these were lingering, smooth as silk for weeks on end.

I went to my functional medicine doctor who tested my thyroid antibodies and my ANA (antinuclear antibody - an umbrella marker for autoimmunity). The thyroid antibodies labs indicated continued remission and my ANA was negative. My doctor said that my hair loss was clearly not autoimmune-related.

I did another hydrochloric acid challenge. The warming sensation in my gut started almost immediately, so low stomach acid wasn’t the issue.

All good news, but…shit. What was going on?

I went to a highly-recommended intuitive doctor who works on an energetic level. (The stories of what this guy has done for others is astounding.) He stated bluntly, “Egg sensitivity. Stop eating eggs.”

An elimination diet a few years ago revealed an egg sensitivity, so I removed them from my diet, supported my gut function, and resumed eating just a few eggs. Then, they crept back to being a relatively regular part of my diet. But given his feedback, I gave them up…again.

Early in my program with Rachel and Michelle, I went on a week-long vacation. It was at a location not chosen by me - it was a trip planned by a family member. The “all inclusive” nature of the resort freaked me out. Being gluten-free and eating minimal dairy, I worried there would be nothing for me to eat.

The food ended up being pretty darned good, surprisingly. But I ate a veggie omelette every.single.day for breakfast. I didn’t have a lot of choices.

And I paid the price. I now have a spot on the back of my head nearly the size of a deck of cards and one above my ear that’s about half that size. That doctor was right.

So, no eggs. (And I love eggs!) More broth, glutamine, and probiotics for healing. And fortunately, the deck of cards is now filling in nicely.

Back to Rachel.

Six weeks into our program, she sounded like a different girl. It was remarkable - her voice was clear and I could hear her. She sounded happy and positive. She laughed.

I shared my excitement with Michelle, who wrote:

“Yes! You’re right. Rachel’s voice is different. She has been much more engaged. Because of your help, she’s seeing changes. You’re the first person who has really helped her. She trusts you. Her mood is changing. She’s super chatty at home now and doesn’t hide in her room. It’s great to watch.”

Nearly two months in, Michelle and Rachel shared in a session that Rachel was growing a mohawk. I can’t even type this without getting emotional.

Soon thereafter, Michelle wrote:

“The mohawk line of her hair is getting longer. Slowly, but growing. And the strip of hair is getting wider. She has tufts of hair or groupings of hair in several places. There are still many places with no growth whatsoever. I’m hoping all the follicles will be stimulated over time.”

The photo here shows Rachel’s progress. Given that she had not a strand when we started in July, this is incredible improvement. (This photo may not do her progress justice; Michelle said that all of Rachel’s blond hairs are a little difficult to see.)

(Go here to see Part 2 of this post, where I share photos of Rachel’s growth six months into our journey together.)

At the same time her hair has been regenerating, Rachel’s cystic acne healed. Another huge win. Now, she’s simply got some dark spots and scarring. Both are fading. 

Rachel’s journey hasn’t been without its ups and downs – it hasn’t been a straight-line trajectory of improvement. Her skin healing and hair growth have stalled at times, but she hasn’t regressed. Her food provocation phase has been rocky – she’s had a lot of reactions, which hasn’t surprised me, given the severity of her situation.

But like her mom, Rachel also has the eye of the tiger. She’s sharp, intuitive, asks great questions, and, bless her heart, she has elongated and drawn out her food provocation phase to give her body the best chance at healing.

She’s feeling some fear – she’s afraid to reintroduce some foods. I understand how she must feel, but I’ve explained that fear can up the ante on antibodies. I told her that, at this point, it’s okay to try some things, see if there is a reaction, and if there is, keep that food out for a while longer while she continues to heal.

As for me, I will likely always have a propensity for occasional spots. But hopefully not as big as the one I have now. This photo shows what I’ve got going on. My curls are covering some of it, but you get the idea.

But having had alopecia for over 30 years, the fear that I’ll lose it all is long gone. Once I got a handle on my Hashimoto’s and got a clear understanding of immune modulation a few years ago, I’d had fewer and fewer spots, until my recent episode.

Hair loss is a devastating and visible manifestation of systemic imbalances. It’s upsetting, to say the least. Fortunately, I have naturally thick and curly hair, but some aren’t so lucky. My spots have gone mostly unnoticed, although I’m sure plenty have seen the recent clearcut on the back of my head. Oh, well.

There is no one perfect answer in slowing hair loss and stimulating regrowth, but an elimination diet along with gut healing (the diet alone isn’t enough) and a hydrochloric acid challenge are the two places to start.

Finally, I had the pleasure of meeting Michelle two weeks ago. She was in town for a conference and invited me to St. Paul to an event. It was so great to see her - we sat on a couch and yakked away. She shared with me that she had been the target of much of Rachel’s anger and frustration in recent years. She wasn’t complaining or playing the victim and completely understood why. Rachel is a teenager, after all.

But she said that lately, Rachel has been sitting in the kitchen and engaging in conversation while Michelle prepares dinner. Recently, Rachel said, “Mom, thank you for preparing all these special foods for me. I really appreciate all you’re doing to help me. I’m lucky to have a mom like you.”

I’m ecstatic that Rachel is getting her hair back, that her cystic acne has healed, and that this young woman is seemingly getting a new lease on life.

As they say, “When diet changes, everything changes.”

Comments

Thank you for sharing your story and Rachel's story. The hashimoto's and hair loss stores always get me misty-eyed, as I can relate. Can I ask - who is the intuitive doctor you mentioned? 

Which probiotic do you recommend? i also have alopecia and allergies to foods im trying to eliminate inflammatory foods as of now.. only 4 days in =/

I've lost a good deal of hair over the past year - have written it off to stress. My thyroid is monitored regularly - BUT - I've begun eating eggs each day consistently for the past year as well. I eat completely organic and gluten-free. I was tested for egg allergy. Your post makes me wonder. Like you - I love eggs and they're in everything. That said, I'd rather have hair than eggs!

This story hit home, I cried. I was diagnosed with  alopecia areata at age 4, at puberty it  spread and I was involved in experimental medicine to try regrowth. By age 18 I was told by so many from the medical community there was nothing more they do to help and my Areata became Universalis. I was diagnosed with Hypothroidism 6 months after my first child was born.  I am now in my 40s and have never had regrowth. This give me hope.

Jill Grunewald's picture

The ability to reply to comments (directly under the comment) is giving us trouble right now. Sorry, but I have to add a new comment to address the above…

Jill Grunewald's picture

Jessica, it’s Dr. Michael Isaacson at South Lake Chiropractic in Excelsior, MN.

Jill Grunewald's picture

Kim, yes. Ha – I’d rather have hair than eggs too. But know that each person’s dietary sensitivities are different. For you, it could be eggs, but it may be something else. The only real way to know is by doing the Elimination/Provocation diet linked to above. That’s the gold standard for sleuthing out sensitivities. And…there’s a difference between a food sensitivity and food allergy.

Jill Grunewald's picture

Hi Chloe, yes, there is hope. Follow the links within this post – it’s your starting place. My sister has universalis and when I got my spots at 12, I thought, “This is it. I’m going to lose it all.” Experimental “medicine” does nothing for hair loss. Or autoimmunity. Both my sister and I (mostly my sister) have been on our fair share of shots, hormones, etc. Two rounds was all I needed to know that it was doing more harm than good. This was when I was about 15. I said, “Never again. I’d rather go bald.”

Hi Jill, this post is very timely for me. I have just been to the dermatologist and endocronologist to get to the bottom of why I'm losing so much hair for the last 8 yrs. and other things. I may have mentioned it when we worked together. (?) Anyways, I appreciate the info including the Dr. you went to. My question to all of you who have areata is do you think ketoconazole shampoo or Hairmax LaserComb are helpful in creating regrowth combined with the Elim diet (again). ? 

Jill Grunewald's picture

Hi Natalie, it’s been a while since we worked together and I may not have known the importance of an HCl challenge at that time. Do this challenge (linked to above). It’s easy and can be transformative. As for the Lasercomb, there’s a researcher here at the Univ. of MN who has been getting remarkable results with it in his studies. I’ve read good things about it and recommended it to Rachel. It’s been shown to stimulate the follicle, which is great and can help grow hair, but if the underlying problem remains (autoimmunity, food sensitivities, low HCl, etc.), then you could continue to have issues. It might be a two steps forward, two steps back situation. But it’s worth the investment, in my opinion.

Thank you.  My 16 year old son has had Alopecia Areata since he was four, but it went mostly unnoticed from six to 14 only affecting his arms and legs.  This year he lost so much of his hair we had to shave the bottom half of his head.  He was also diagnosed with low functioning adreanals, and low iron. We did monthly steroid shots for six months and had success, but I would much rather allow his body to heal itself and feel that is treating a symptom, not the cause. For the past three months we've been on the Autoimmune protocol.  His energy is coming back, but his hair is falling out again. This is helpful information, he's had bone broth daily since I first found your article, and the glutamine is to arrive today. 

Jill Grunewald's picture

Hi Keri, I’m really sorry to hear about your son’s experience. It’s tough enough to have this happen, but to experience it during puberty/teen years is even more difficult. And you’re right, steroid shots don’t treat the root cause. In addition to the broth and glutamine, have him to an HCl challenge (linked to in the post).

i am losing hair around the frame of my face. I have celiac and hashimoto hypothyroidism. Can a diet bring this hair back? I am totally gluten free.

Jill Grunewald's picture

Hi Lorrie, this sounds like frontal alopecia, especially given the other autoimmunity. Diet is important, yes, but it’s only one component of regrowing hair.

Hi my name is Louise.   I found my first bold spot back in October. Since then my whole back of my head is almost bald plus at the top i have three quater sized bold spots. I do have an autoimmune disorder. I have celiac disease. So I've been on a celiac diet for 3 years.  My hair loss has almost been a year now.   I'm scared lost for words and domy know what to do.  I am thinking of doing the AIP paleo diet.?   Don't know what else to do. I rub oils on my head nothimg Worls. Although one spot has regrow bit not Other areas  please need some support.  i don't have an hormonal stiff going on as I did get blood work to rule that all out 

thank you Louise 

Jill Grunewald's picture

Hi Louise, if you haven’t already, you can sign up for my alopecia-specific newsletter. Look at the top of this post and on the left. I’m going to be offering some group/online classes on reversing alopecia.

Hi my name is Jessica. I have been dealing with hairloss in the same exact spot for many years. It first started in college and was just a nickel to quarter sized bald spot, which grew back on its own in a few months. It happened in that way every few years about two to three inches behind my left ear and always the same spot. Since that time I became a vegetarian and then a vegan. Over the last 3 or so years that little spot became a much bigger area and started to get really painful and tingly when hair falling. Currently the whole area is very very thin almost like a bald spot with finer hair all over it, but it just refuses to grow. It has actually grown some enough to cover the spot, but then falls back out and is clearly inflamed at times.

I am desperate for answers. I have been to a few Dermatologist, who haven't been able to really help. The last one I went to actually used steroid injections for a little while, but I cant say it was much help. She was the first Dermatologist to say it was Alopeica Areata, however did not do a biopsy. Before going vegetarian I was always slightly anemic growing up. All along the general blood tests that my doctor ran came back with mostly normal results with Vitamin D being a little low. However I recently asked him to check my ferritin levels and realized they were very very low and so I recently started iron with Vitamin C and L lysine. 

In all my research I have read about the relationship between gluten sensitivity and alopecia. I've always known when I eat certain foods I get bloated and feel sluggish, but I never realized it could be impacting my hair. It mostly happens with rice, bread and those kinds of foods. 

With the exception of my hair I havent had any issues really that I have noticed. My skin and nails are pretty good and much better since being vegan. I dont have any aches or pains and feel healthy in general. I do have a tendency to be stressed and sometimes cannot focus, which I thought is because I think too much. However,  this hairloss really effects me and is on my mind constantly. I basically cut my hair very low and wear a scarf on it, which is an issue in itself. I am very optimistic that my hair will regrow and would love any advice you could give. In general the doctors I have seen have not been very helpful in digging for the cause. 

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