This interview is the fourth in my series on kids with chronic illness. This time I interviewed M’s 9-year-old daughter R who has celiac disease and suffers from congenital hypothyoidism because she was born without a thyroid. M explains that her daughter is “very smart and extremely knowledgeable about her conditions and can express herself easily (many people say she speaks like an adult). She knows how it feels bad when her thyroid levels are ‘off’ and dealing with eating gluten-free when the rest of your classmates aren’t”. When I exclaimed how tough this must be for both of them, M responded: “Yes, it’s tough, but we don’t feel bad for her. All the doctor appointments and testing she’s gone through have made her a much stronger person. She’s learning how to be independent by calling up manufacturers to ask if their products are gluten-free and is responsible about taking her medication. Is it something we’d have wished for? No. But out of all the things that could go wrong, we are happy that both can be managed easily with a gluten-free diet and medication”. R’s mom M has Hashimoto’s thyroiditis and a gluten sensitivity, so she is already well acquainted with similar health issues of her own. I talked to her at length about her thoughts on R’s illness and how she deals with it and helps R to deal with it. I followed this with an interview with daughter R.
M describes how she sometimes feels lost and hurt because there are many hurdles to overcome, but she has come to realize that it’s not the end of the world because her daughter can still live a very happy and full life. She goes on to say that R has a very positive outlook to life and doesn’t let anything get her down. M also came to realize that one of the best tactics is to show no fear: “It has to be that way when you have a child with an illness. You can’t show them you are scared and frustrated. I teach her as much as possible and do my best to stay positive and keep her educated about her condition. Ultimately, the better she is informed, the better her life will be.
M talks about how she has run into several people who have kids with celiac and there are some who have not taught their kids anything so that they are completely reliant on their parents or don’t really pay attention to what they are eating: “For example, at my daughter’s school, they were trying to introduce a gluten-free lunch and one kid at her school has a hotdog everyday without a bun even though he has celiac. I had to explain to them about the risk of cross-contamination due to the hotdog tongs touching the bun! You don’t know the damage it is doing on the inside”. Apparently, the kid isn’t well informed and the parents don’t care either. M gives another example of a child whose mom feeds them cereal everyday because the mother is afraid to try anything new: “I don’t let anything stop me. I adapt my favorite recipes, make gluten-free matzah balls for Jewish holidays, as well as meals like tuna casserole. You can’t be so scared that you end up locking yourself in a room. The worst thing is when I’m out of the house and she is hungry because I can’t just stop at McDonald’s. I always have to be prepared, pack everything ahead of time and plan meals”.
M goes on to talk about the celiac message boards where she has seen other parents talk about how their kids are sneaking gluten snacks at school: “I guess everyone raises their kid differently. My daughter would never even think of that – why would I eat gluten if it makes me sick? I understand that some kids don’t have symptoms and can eat gluten and not get sick, but it still causes internal damage. I just feel like those who have kids who are sneaking gluten haven’t taught their kids properly. They have to learn to think of gluten as poison. You wouldn’t have your kid drink Lysol or a cleaning solution, so why would you let them have gluten?” She feels that most parents are informed, but not as well as they should be. “I’m one of those crazy moms. I dove in headfirst. When we went gluten-free with my daughter, after six months her numbers came back perfect and the doctor said he had never seen anything like this. I am a little nutty and I overdid it. A lot of parents take their kids out to eat and don’t worry about cross-contamination. They need to know about these little things too”.
M explains that her daughter has a pretty rare condition of being born without a thyroid (this is estimated to affect about 1 in 14,000 people). Apparently, this is treated the same way as hypothyroidism because as her daughter grows she needs more, but sometimes she gets too much and needs less. “Because I have Hashi’s myself, I know what to look for and so does she – she’ll say she’s tired and finding it hard to stay awake, which indicates that her levels are off. It’s hard for a kid as they have so much going on. However, she’ll know her body better as she gets older and hopefully won’t have to deal with the stuff that I have to. It’s a rollercoaster ride and my hubby even jokes that I should get mine removed so that I don’t have to deal with the ups and downs”.
M feels that celiac shouldn’t be a label about who you are. She’s concerned that when R gets older things will become tougher as her friends will be going out for pizza. But, she explains that right now it’s easier to control what she eats. M is about 90% gluten-free and feels better that way, although she doesn’t have celiac: “We make all our dinners gluten-free as it’s easier to make just one thing for everyone. Gluten causes me to get a little bloated, but I don’t suffer from joint pain or moodiness. I actually prefer some gluten-free versions of foods such as pasta. We have gluten-free holidays and I make stuff and I will bring stuff. Some of my friends will make a gluten-free meal and go out of their way to accommodate us, but our own family members won’t always do that. I have to fight tooth and nail to get them to. They were grilling one time and I asked them to put hotdogs and hamburgers on tin foil to avoid cross-contamination, but they said they had burned the gluten off the grill! I’ve also seen people eat cookies while preparing food for my daughter. I’ve also had to explain to people that she’d need fresh butter to put on her corn on the cob as an open tub of butter is probably already contaminated as most people will have used it on bread and even if you can’t see the crumbs, they can still be there. I’m very stubborn and basically have to tell my family members: ‘either you do it my way or we won’t be in your life’. It becomes a burden having to take care of everything, but you do what you have to do to protect your child”.
M firmly believes that a lot of it depends on your outlook. She explains that she’s seen people bitch about the diet and would like to show them how it can be done differently: “People don’t always understand and often end up eating at the same restaurants all the time. I want to tell them to read and research by using applications such as Glutenfreely.com. All of a sudden, people feel that they can’t eat anything and I understand that that is how you feel at the beginning, but it doesn’t have to be that way”.
M found the “Cecilia’s Marketplace Gluten-Free Grocery Shopping Guide” to be a real lifesaver: “It allows me to buy foods that aren’t necessarily labeled gluten-free and to pay e.g. $1 a jar as opposed to $5. People are so scared to venture outside of that little box. I use my husband’s SmartPhone to find gluten-free restaurants”. She explains that whilst her daughter has never eaten gluten, if she accidentally gets “glutened”, an hour after eating she will be sick for a couple of hours and then sleep for 12 hours straight. Once she gets it out of her system, she’s sluggish for the next day or two, but I give her yogurt (natural probiotics) and vitamins”. She mentions how it took her almost a year after her daughter’s diagnosis to pluck up the courage to go out to eat: “And then we only went to restaurants that have gluten-free menus. If they understand it, that’s great and if they are ‘What?’ we say, ‘Thank you. Goodbye’”. Another useful tip M has to offer is this: “For celiac kids, there are ROCK groups around (Raising Our Celiac Kids) that often have events that get the kids together”. Thank you M for your useful and interesting insights! Now, on to the interview with M’s daughter R …
Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
M: I have celiac disease and I also have no thyroid. With celiac disease I can’t eat any gluten or else I’ll get really sick. So I can’t eat any wheat, barley, rye, oats or malt. With my thyroid disease, because I was born without one I have to have medicine every single day for the rest of my life. I’m on Synthroid 75 mcg. If I forget a day, which I haven’t so far, then I’ll just get a little tired and if I don’t have it for a couple of days, then I can wind up in the hospital with a coma, which is what my mom told me. If I do miss a couple of days, I can get really sick and wind up almost dying. Mom knows everything I need to do as she has Hashimoto’s thyroiditis.
Sarah: How has this changed your life?
M: When I found out at the end of kindergarten that I had celiac and couldn’t eat any gluten, it completely changed my life because I didn’t know what I could eat and I was so nervous that I wasn’t eating anything because I thought there was nothing I could eat until I found certain gluten-free brands of foods and realized that I had so many more options that I initially thought. And now I don’t even notice any problem. I was nervous about contamination issues and was scared to death that I was not going to manage, even though it’s not so bad. But now I’m fine with it and when people say “I feel so bad that you can’t have this”, I tell them, “I can have whatever you are eating, just without the gluten”. If I get a contamination issue, in the first hour I get a stomach ache or feel nauseous. One time, on my birthday, I ate some contaminated chips and in the next hour I didn’t feel well and threw up. Another time, I ate a shrimp and someone else touched the plate with my gluten and I got really sick. If I get sick, I usually wind up having diarrhea, throwing up or having really bad stomach aches. Celiac was very rare back then (four years ago). I’d never heard about it and I was just so scared that there was nothing available for me [Sarah: No doubt many others with gluten issues can relate to this initial reaction! I know that I felt like my gluten intolerance diagnosis was the end of the world! ].
My thyroid really didn’t change my life that much because I was born with it. I can’t have some soy products such as ice cream or milk. I don’t think it’s too rare, but a little bit rare. I don’t think a lot of people are born without a thyroid.
Sarah: How have your friends and family reacted to your illness/es?
M: When I told most of my friends I had celiac, they didn’t know what the heck I was talking about and my mom had to explain to them and their parents what I couldn’t eat and that they couldn’t touch me with gluten. Then they understood. Sometimes they are having so much fun that they forget and then they ask me if I want to eat something and then they apologize because they have forgotten. One of my friends has lactose intolerance. She is mostly gluten-free and she understands and tells people not to touch her hands or foods with gluten due to the cross-contamination. My mom is part of a Facebook celiac support group and when people freak out, mom uses what we have learned to help others. My parents were very shocked about the diagnosis. Mom was shocked that I had it. She knew what it was, but dad didn’t know at all and he freaked out initially, but we were just shocked and worried. Well, mostly my mom was worried to see what I was going to eat. But now they’re fine.
My thyroid isn’t a huge problem because I just have to take my medicine. My friends understand because one of my friends can’t have soy or milk products, so she really knows about it and my other friends just know about it and are fine with it. It’s not a big problem.
Sarah: How has this affected things at school?
M: There is one girl who was in my class. She just didn’t get it. She contaminated my food twice that year. No one even cared about her because she was mean and didn’t care about anyone else but herself. My classmates told her “don’t touch it” and she just didn’t understand. I’m in an Expand school for smart people (part of a regular school, but for high achievers). At the end of the year, there’s a big celebration and you have to do a project on any topic, so I chose celiac disease and I got an award for it. I teach my friends about it and they know about it. Sometimes I just want to look stuff up to see if it’s gluten-free because I want to learn more about celiac disease. And sometimes I call or email companies to see whether things are gluten-free. Where we go shopping, they have two gluten-free aisles and sometimes they label their stuff gluten-free.
Sarah: Has anything positive come out of this?
M: I think everything is just fine for me. There’s nothing that can stop me from being gluten-free. There’s nothing hard in my life. My mom has taught me so much and I’ve learned so much about it. Nothing can be too hard for me. My life is more pluses than negatives! Sometimes I get a little bump in the road and then it goes to the negative, but then it goes back to the positive.
Sarah: What has this experience taught you?
M: I think it’s taught me to always think straight. If I don’t think straight about my illnesses, I won’t be fine. So I always have to think about my illnesses and how everyone’s dealing with my illnesses to anticipate whether something’s going to happen, e.g. someone’s going to touch my food.
Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
M: I would probably teach everyone about it and that way they would all learn and be careful what they touch and for the people who have what I have I would teach them about it. That way they wouldn’t freak out because I was freaking out at the beginning too. That way people would know and be aware of people who have it and what is wrong with them.
Sarah: Would you be interested in being put in touch with others in your situation?
M: I would love to.
Sarah: Thank you very much for your participation and for helping to raise awareness for others in your situation.