Apr 28, 2014

Vitiligo and Gluten Free: Our New Normal

Everyone warned me that parenting was the hardest job you'll ever have and that nothing can prepare you for it. I believed them, but I didn't understand just how difficult it could get. I didn't know that there would be days that made me drop to my knees and ask God to make the pain stop. I didn't know that there would be days when I felt emotionally drained and ready to quit even though I knew that wasn't an option.

Now I know these truths for parenthood. It's a tough job and as much as we want to take our kids' pain away, we can't. Instead we have to face their obstacles head on and do everything that we can to help them.

Last week we took Mark to a dermatologist for some white spots that he has on his body. The pediatrician warned me that he thought it was vitiligo. For the second time I sat in a doctor's office while my son was tentatively being diagnosed with something that I was clueless about. I did what any mom would do while I waited for the dermatologist appointment; I looked online for information. The pictures I saw looked identical to what Mark had so I lost all hope that his pediatrician was wrong.


Vitiligo is a condition that makes the skin lose it's pigment. Doctors don't know why it happens and there is no cure. There are limited treatment options for adults, even less for kids and some kids just don't respond to treatment. My research was a little depressing. I wasn't looking forward to our visit.

We were seen by a resident first who took a look and then said she would be back with the attending. When three doctors walked in instead of two, I knew he had vitiligo. It's never a good sign when an extra doctor is there.

I was prepared for it so it didn't come as a shock. I wasn't prepared for Molly getting diagnosed as well. That took my breath away. I knew she had some white spots but they're on her knees which are constantly skinned. I assumed it was some scarring. Nope, both of my kids have a condition that is pretty much unknown with no cure. I left the appointment feeling frustrated, defeated, but with my head held high and my tears in check so the kids would be scared.

I love this age!

The good news is that vitiligo isn't an illness and they aren't in any danger health wise. The bad news is that kids are cruel and now my twins are going to look different. Let's face it, adults are cruel too and I know if their vitiligo spreads rapidly they will be stared at. Mark already has two spots on his face that are fairly noticeable. Right now knowing that it could be worse isn't making me feel any better. I know one day I'll get some perspective but I'm not there yet.

I am very happy I'm a Coppertone Water Mom who applies sunscreen to the kids everyday regardless of the season. Their doctor explained how important it is for me to protect their skin. Not only does their skin need extra protection, but when their skin gets darker the spots will be more noticeable. Their doctor commented that she rarely sees kids without tan lines. I really do apply Coppertone on my kids everyday, it's not just something I blog about. At least one part of their treatment is something I already do everyday.  I also have to apply a cream twice a day to the spots in a effort to get the skin to repigment. Time will tell if it works, typically it takes 3-6 months to see results.



One thing that we are doing that is optional is going gluten free. Well correction the twins are going gluten free, the rest of us will be low gluten. GF bread and tortillas are far too expensive for me to buy them for the whole family. The research on GF diets is almost nonexistent but as I've talked to people with vitiligo online they swear by it. I figure anything is worth trying to repigment their skin.

Right now I'm feeling very overwhelmed both with the diagnosis and trying to make my home mostly gluten free. Gluten is in everything and the replacement products cost a fortune! I'm going to have to redo my budget once I get a handle on things.

I would love some advice from anyone who's gone gluten free or even given up carbs. How do you feed your kids? What are the good brands to try? Will it always feel this overwhelming? (If the answer to the last question is yes please know that I want you to tell me what I want to hear instead of the truth.)

4 comments:

  1. I had vitiligo for 8 years now and I had tried different treatments (PUVA, topical steroid, meladinine cream/solution with exposure to sunlight/PUVA, oral meladinine, oil of bergamot). The vitiligo covered my neck, and one-fourth of my face. I looked for another dermatologist because i lost hope with my past dermatologists. Then somebody recommended me a good natural treatment and it worked very well. Now i'm 90% cured. With only 1 1/2 month of treatment. Watch this review, it helped me a lot: naturalvitiligotreatmentsystems.com

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  2. My daughter got vitiligo this year at 4.5 years of age. The Protopic cream has worked on her face (started to work in about 8 weeks) but there's a little bit more to go. She's got tiny spots on her toes and back, but her elbow and knees, which got spots from scars, seems to have healed. The scary part is the unknown - how bad will it get? How will she cope? Will she get better? I've got her on b12 and Ginkgo Biloba. In a way, I'm glad it's something she got when she's young so it becomes a part of her identity. It would be harder as a teen pre-marriage. Dairy upsets her stomach and she often has green poops. She'll get periodic diarrhea where she has a really disgusting poo (runny, mucousy - the wrong colours). I'm hoping her stomach heals and her vitiligo improves. I'm gluten free (I had Graves for 18 months after my first daughter was born but it went into remission - I'm totally off meds for 5 years now). However, while I once lived on cereal and pasta, I cannot eat it at all now. Just confirmed it's not celiacs but it creates debilitating gas in my intestines, so I'm totally gluten-free.

    Good luck to you and your fam!

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    Replies
    1. Thanks, and good luck to you and your family too. The unknown is hard for me too. My son is rapidly filling in while my daughter is spreading like wildfire. It's hard.

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  3. Hi there! I sent a message a private message on instagram and hoping we can chat after reading your blog.

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