I'm creating a new series where you can hear from other people with SNAS who have learned to manage this complicated allergy. Check out Esther's story!
"I remember two years ago I thought this was going to be impossible. I thought, oh my god, I am not going to be able to manage this allergy. It's difficult to manage, but now I am doing okay, sometimes I even forget." - Esther
Systemic Nickel Allergy Syndrome Success Story - Episode 1 - Transcript
Kristina - Good morning. Thank you for being here. As you know I’m creating a success story series to help inform and inspire people with systemic nickel allergy syndrome. As you know having this allergy can be very isolating. It’s hard to come across any information and even harder to come across any individuals with this allergy sharing their experience. So I remember, Esther, first meeting you on Instagram when I started blogging about nickel and cobalt allergies. Thank you so much for being my first guest. Tell me a little bit about when you develop this allergy. How long ago was it? What were the symptoms? What were you dealing with?
Esther - Everything started two years ago, more or less. When we were locked in due to the pandemic situation, at least in my country. I live in Spain so we couldn’t go out and suddenly, out of the blue, my scalp was red, burning. I didn’t know what was going on. I wasn’t really scared but I thought I need to go to the dermatologist. So once we could do it because of the pandemic situation, I contacted my dermatologist and I went to see him. I told him about my scalp and everything. He even looked with a microscope and he said don’t worry it’s seborrheic dermatitis and he prescribed me a special shampoo but it was even worse with that shampoo. Everything was getting worse and worse. So, I contacted him again and he said okay it’s probably an allergy. I am going to send you to a colleague of mine. She’s an allergist. So that is why I went to this allergist and she told me she thought it was an allergy so I had a patch test and two contact allergies appeared. One was nickel and the other was to another contact allergy but to a preservative. She told me I was highly allergic to nickel. You know there is, at least in my country, there are 4 levels. The first is irritation then you have 3 levels. So, with nickel, I had the maximum. The other one is less. That is why I knew.
Kristina - So you were officially diagnosed with patch testing. Did the doctor know anything about nickel in food, did he say anything about that?
Esther - I have to say I was really really lucky because the allergist, she knew about nickel in food. She knew but the list she gave me of foods, I think it’s not very accurate but at least she told me, you have the highest level, probably foods are affecting you so you need to be careful. But I remember she told me things like salmon are really high in nickel but now, for instance, I can eat salmon. I remember being really really worried because I have celiac disease. I was diagnosed with celiac disease 4 years ago so I was already with that restriction diet because of gluten and I remember I was overwhelmed when I saw that huge list of food I couldn’t eat. I was really desperate.
Kristina - Yeah - I can eat salmon too. I love salmon. Okay and how did you finally gain control over this allergy? How long did it take? What worked well for you? What didn’t work well?
Esther - I have to say since then I’ve visited a lot of doctors, you cannot imagine. Another allergist, they told me no no no nickel is a contact allergy nothing to do with food - you’re mistaken. I remember I went to see another very important allergist in my country, I think the best allergist in Europe, he won an award. He said no, you don’t need to worry, you can take chocolate and everything from cans. Then I did and it was a nightmare. It was even worse but what helped me, I think, was you. Because after seeing many specialists, microbiome specialists, I was getting worse and worse. I was lost. I mean, somehow I had a lot of inflammation in my head I read a lot of articles, research articles but somehow I was lost so I think you helped me to understand that this allergy should be treated with and integral approach so it’s not only food, it’s also avoiding contact being careful with some supplements, taking probiotics, I mean everything. So it was true, I was trying everything but I was trying first to avoid contact, later I tried the low nickel diet but I was not avoiding contact so I was lost.
Kristina - About how long did it take to see improvements after you started the lifestyle?
Esther - I cannot say accurately because I was doing many many many different things but at the end it has taken me almost 2 years. Almost 2 years that my immune system has calmed down, I think, yeah, nearly 2 years.
Kristina - When did you start noticing, I am on the right track? Was there a period where you knew, okay this is working, I just have to stick with it?
Esther - I think, after contacting you, 6 months later. Suddenly, I remember one day saying, oh I’m okay. I remember my reactions, because in my case it was skin reactions, it’s burning, red burn and suddenly I was like hmm, it’s been like a week or so that I am okay. So it was little by little. I mean I am doing everything, so I am avoiding contact, I am careful with food, I am taking probiotics, everything I use is nickel-tested. You know, it was suddenly.
Kristina - Great!
Esther - But I think probably my immune system has calmed down.
Kristina - Yes, that does take time.
Esther - Yes
Kristina - So you are one of the few people I know that has worked with the Italian doctors who are the specialists in systemic nickel allergy syndrome. Can you tell us about that and the hyposensitization method that they recommended for you?
Esther - So yeah, I went to the Italian clinic they specialize in many different allergies but also the nickel allergy. They helped me to understand that for some people this allergy is in the middle between a food allergy and a contact allergy. You know, somewhere in the middle. You could have both reactions, you know. So, I mean when I talked to them and asked for the hyposensitization method, they told me that, they don’t know why but it works for some people but it doesn’t work for other people. They don’t know the reason. So they told me, because of this, they don’t know if it’s going to work for you or not. Their first approach is always diet. So they have, well they have an approach with a rotation diet. So just two days per week you start with a little little bit of high nickel foods. It’s a rotation diet, so the other days you need to be on a low nickel diet and two days per week you can have a small amount of high nickel foods. Also, taking supplements. Also, I’m eating healthy, of course but I have to say at the end of it, I’m not doing it for personal reasons. I was able to with the rotation diet and be careful. So at the end, I think with your recommendations, I was doing great. So I thought I am doing great as I am doing right now. Have to say, right now, I almost can eat everything again, so yeah, in the end I don’t need to go back to Italy.
Kristina - So how are the reintroductions going, so you’re saying you can eat almost everything now. Have you had any success with reintroducing high nickel foods, are there foods that you will just stay away from?
Esther - Yes, so I think, at the beginning I started to reintroduce legumes, a little bit. I was doing great so little by little I began to eat almost everything. For example tomato and chocolate, if I eat them a lot I began to have reactions again. So for me it’s okay because I can eat the rest of them legumes, even nut but I need to be careful with chocolate and tomato. I don’t know why but I can eat them from time to time. At the end what is working for me, I have been following all your recommendations, being careful especially with contact, using probiotics, nickel test products, the low nickel diet at the beginning until your immune system calms down and that’s it!
Kristina - Great! So how often do you eat legumes and nuts, are you able to eat them every day?
Esther - I’m always careful, I think I’m taking legumes maybe twice per week, even three per week. I try not to eat them every single day but 2-3 days is what I consider okay. So for the moment I can take them.
Kristina - That’s great! How is your life today? How are you doing with managing this allergy long term, how do you feel about it?
Esther - At the beginning, as I’ve mentioned before, at the beginning I was really really scared. Because, you know I was overwhelmed because with the allergy and my celiac disease. I remember I was even avoiding dairy but at the end you recommended you can eat it little by little and I have no problem with dairy because now I can eat dairy again. I remember I thought this was going to be impossible because I wasn’t getting results. I thought oh my god I am not going to be able to manage this allergy. I have 3 allergies, I have three but the others are okay, they are quite simple for me. I mean I don’t have any problems at all. I mean metal allergies as the Italian doctors told me, they are in the middle of a food allergy and contact allergy so it's in the middle. It's difficult to manage but now I am doing okay. Sometimes I even forget.
Kristina - Yeah! That’s the best!
Esther - I am doing great! I’ve very careful about avoiding contact, as much as I can. I have here, serum nickel- tested. Creams, cleaning oil even solar protection. Everything I have is nickel tested even everything I wear, I’m good with that. Taking probiotics, in the beginning the low nickel diet but now I am doing great. But at the end I think we can manage this allergy quite well but you have a lot of information, that’s also true.
Kristina - Amazing! Thank you so much for sharing your success story. It’s been such a pleasure to work with you and I love that we keep in touch and stay connected. That is my favorite, so thank you!!