SoCo: What were the first signs that your son’s acne was out of the ordinary?
C.K.: He got progressively worse in a short time period. He went from, what I think of as, typical teenage acne to severe acne, almost like welts and cysts along his face, neck, and back. That’s when we started getting concerned and started seeing a dermatologist regularly. They began injecting the cysts with a steroid, but they were treating the symptom and not getting to the root cause—hindsight now being 20/20.
SoCo: How old was he when this escalation started?
C.K.: The acne itself probably started around fourteen or fifteen, and that was just a very manageable kind of thing. At sixteen, it really progressed into severe acne. And then in the summer when he was sixteen to the summer of seventeen, it just got face-disfiguring bad.
SoCo: How did you make the decision that this was serious enough to take him to a hospital?
C.K.: He went on vacation with a friend in the summer and within days of returning from being away from us and my home cooking (which is a key element I’ll explain latter), his face, around his eyes, and around the jawline of his neck started to swell so severely that it actually started affecting his vision, his breathing, and swallowing. When he woke up one morning having trouble breathing, we rushed him to the hospital.
SoCo: Did you go to the E.R. (Emergency Room)?
C.K.: Yes and he was evaluated immediately because of the breathing issues. And because he wasn’t quite eighteen yet—he was six feet tall and the size of a man but yet the age of a child—he was put in the pediatric ward.
SoCo: When they were trying to figure out what was wrong, what kind of tests did the doctors run? What were their theories?
C.K.: It was incredibly complicated. When he went on vacation with his friend, he left the country. Even though he only went to Canada, that added another very complicated element to it because it just raised a new layer of concern.
In Canada, he’d been in a lake and he’d been waterskiing a ton. So they were running through many different blood tests, stool specimens, internal biopsies, and trying to get to the bottom of what could cause this inflammation. His body was clearly fighting something, whether it was an infectious disease from a parasite or something else, they couldn’t figure it out. And they were trying to keep him stable at the same time giving him massive doses of antibiotics as well as sedatives because he would wake up gasping for air and they didn’t want him to have a panic attack to make it worse.
SoCo: Unfortunately, his trip and activity in the lake lead you down the wrong track.
C.K.: Yes, but it did eliminate a lot, which was comforting. On the other hand, it was also concerning because everything they were testing for was coming back negative.
Then we became very uncomfortable at the first hospital because we felt that we weren’t really making any progress. So we left and we admitted him into a second hospital where I knew many doctors because I delivered my four boys there. There, they brought in doctors from just about every conceivable department to try to figure out what was going on.
And so he would sleep for a day or two and then wake up feeling a little bit better. The swelling would be down just a little bit, and then—and this is the key point—they would bring in a tray of food. I’d leave every night between midnight and 1:00 a.m. and go home and sleep for a couple of hours and be back in by 8:00 in the morning and he would look just absolutely horrible. And it took days for us to figure out this cycle, but we realized it was the food that was doing this to him.
SoCo: That’s incredible. Do you feel like you kind of figured it out watching the exacerbation happen over and over again?
C.K.: You know, it really wasn’t me. At this second hospital, Dr. Evans was the dermatologist who was brought in as a special favor to me and my G.P. to take a look at him because we both knew her personally and we both knew that she was the kind of doctor who was going to figure this out. She also knows my other children. And we kind of pieced this all together, that he was having some kind of reaction to the food they were giving him, but she left no stone unturned. She cut open his neck and took out some of the infection and did a tremendous amount of testing on that. She did a ton of blood work and discovered his inflammation was so high, which showed that there was something going on internally as well. She tested for everything from head to toe and came to the conclusion that it was food-based and gluten-specific. And that’s where the turnaround took place. He went from being incapacitated to just a new human being afterwards. As soon as he went completely gluten-free, his acne was completely gone.
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SoCo: Some people think that if you take gluten out that just means not eating bread, but it really means gluten ZERO and that means that you have to check every label. Did you have some trouble with that initially, going gluten–zero?
C.K.: I was a person who was very aware of gluten prior to this as far as gastro issues were concerned, but I was astounded by what I learned. Gluten is in things you could never ever even imagine like vinegar and ice cream. It’s a cheap filler that’s put into food more and more. Certain people are more sensitive to it than others and some may not be sensitive to it at all, but it’s amazing the way it affects people differently.
Everybody assumes gluten means gastro-intestinal issues and clearly for my son, we learned that wasn’t the case. He really didn’t have terrible gastro issues. It was really through his skin that caused the biggest tip-over for him.
SoCo: Because people react so differently, it kind of threw you off. You have four children and one of your other sons had gluten intolerance, and that was manifesting purely as gastro intestinal so it didn’t occur to you, right?
C.K.: Right, it never even occurred to me. My son (with the acne) was fifteen/sixteen at the time when this all started. He certainly wasn’t going to share details of his private matters with me when it came to the gastro issues. It wasn’t even really enough for him to mention it. The way his body broke down, the gluten leaked out of his gut and his bloodstream was pushing it out of his skin. My other son eliminated through the gastro.
SoCo: There can be a silver lining in some ways once you ferret out this kind of information. Now, you’ve had all of your other children tested. How did that all play out?
C.K.: The tests indicated that out of the six of us, five had intolerance issues to one degree or another. My tests came back negative for gluten problems, but I made the decision to go gluten free too. And the biggest turnaround, besides my hospitalized son, was me!
I couldn’t have imagined that two weeks after I went gluten-free, my energy level went through the roof. Before, I was perpetually tired and I just rationalized that because I have four kids and was so busy and like every mom you’re just tired, but I didn’t realize how tired and how mentally and physically exhausted I was. That brain fog that I’d just learned to live with disappeared. I was sharp as a tack.
SoCo: So in a way, your son’s unfortunate journey alerted you to problems with other members of your family. I think that’s one of the critical things about Dr. Evans. She acknowledges the gluten issue, she explores it, and she knows how much it can impact people.
C.K.: She, unlike a lot of doctors, realizes too, gluten affects everybody totally differently. In me it was the energy and the clarity of my brain. In one of my children it was gastro—and these are all my children with the same two parents—one had an anaphylactic reaction, and for the other one, it was the severe acne. Dr. Evans was one of the first people who brought it to our attention that not everybody reacts the same. She just nailed it!
And on top of it, every single day at that hospital, including Sundays and sometimes even two or three times a day, she would show up, which to me, to see her walk in the door after sitting there for six hours with my son sleeping, it’s just priceless. She never gave up on trying to figure out what was wrong with him and she, I guess as a mother, understood that even if she came in just to say, “Hi how’s he doing?” that meant the world to me.
SoCo: It’s rare for a doctor to take the time to really connect in that way. To see each person as an individual is so important. I feel like it was fortunate for you to switch to the second hospital. They knew you, they were invested in you and your outcome, and didn’t dismiss what was going on.
C.K.: As a mother, you want to be the one in the bed not your kid. Ya know, as time went on and on, Dr. Evans just never gave up and that was the part that was just so refreshing because we did have a number of doctors who walked away and said, “We can’t help you, we don’t know anything else we can test him for, we’ve run out of ideas.” Dr. Evans never ran out of ideas.
SoCo: I’m glad. And now your son is healthy and doing well?
C.K.: Healthy and great and his skin, other than some scarring, which, to be honest, is minor. I actually thought it would be far worse. Now, he’s the food guy in the family and he cooks most of his own food.
SoCo: How is the rest of the family?
C.K.: There’s always a silver lining, as you said earlier, and now all four of my children are healthy, vegetable eating, fruit eating, gluten-free, and, in some cases, dairy-free too. For years, we used to have lots of colds and flues. Your body is so broken down from the gluten that when you’re presented with some kind of other disease or ailment or infection, there’s not much left to fight. We don’t have that anymore.
SoCo: If you’re already stressed, if your body is stretched managing the gluten situation, any cold or flu that comes along zip, it’s right in. There’s no defense. Do you have any advice you’d like to share with other parents?
C.K.: Prior to this happening to my family, I kind of felt like it was a fad. I’d hear people talk about gluten and I would think, “Here we go again.” I’m not going to do that anymore when it comes to certain health things.
It may not be acne for your child, but if you have a child who is presenting some kind of symptom, a child who can’t stay focused on work or has gastro, skin, or any of these things, try going gluten free for a week or two. It’s so easy now. The products that are made are so easily available in grocery stores. If gluten is the reason, you’ll know in a week or two of going gluten free and it’ll make an enormous difference in your life.
At SoCo, Dr. Evans and her team are committed to getting to the root cause of your skin issue. If you suspect that you have a food sensitivity or intolerance, click to read about the comprehensive testing we do here at our office. If you'd like to know more about acne, click here.
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