Surviving Lymphoma cancer with the gluten free and dairy free diet

2021 was my toughest year. Going through a near death experience, being diagnosed with Lymphoma cancer and getting Covid 19. I tried to keep to the gluten free and dairy free diet but we were struggling financially. It felt like everything was tumbling down. But what could I do? I was in bed for almost 7 months in need of physical, emotional, mental, and spiritual support. It was miserable and tough, but it was a journey that got me to realise the importance of family and health.  

“I desperately needed to make some changes, but I just didn’t know where to start.”

I love food. I love to eat and I love to go to functions for food and laughter. I used to weigh more than 130kg. And because I was big and people knew I could eat, they would encourage me even more to join in wherever there were occasions. I would eat, no exercise and barely had energy to do anything extra. I didn’t even know how to exercise at all. Even walking I couldn’t do long distance walk and I just didn’t want to walk, you know, because I was big! I just thought, I look funny already, so just take a cab. Often I would think, I was overweight and it was hopeless to exercise. I still remember weighing that much and walking a distance from my house to the main road to catch the bus. And this cab goes pass and offers me a lift, only to hop in to hear him say, “Isa, I saw you big lady and feel sorry for you walking so slow to the main road”.

My family used to joke and call me “Turtle” because I was slow. Slow mentally and slow to do things around the house. And because I was big and slow, walking was like giving birth. I could not do much walking around because of my size. I could’t afford or fit into some training clothes, and it would have been embarrassing to workout and I never really liked exercising. I desperately needed to make some changes, but I just didn’t know where to start.

“Now when I think about it, when I stopped eating foods containing gluten and dairy, I stopped having constipation. ”

Just by changing my diet I noticed the increase in my energy level. I was running up and down on our driveway in the mornings. I never had the energy to do that before. I used to feel sleepy and lazy all the time and I couldn’t wake up early. But now even if I stay up late at night, I still wake up early and I can still focus at work. I also noticed the improvement with my bowel movement because I used to have really bad constipation. When I get constipated, I used to have painful reactions, which is normal to everyone going through constipation. It was as if I had a boil on my bum. I couldn’t sit or even walk properly, so I drank lots of water and took panadol for the pain. Sometimes it would last the whole week and I used to be scared to go to the toilet. Often I’d be limping around and I’d tell people I have a boil on my bum but really I was constipated. Now that I think about it, when I stopped eating foods containing gluten and dairy, I stopped having constipation.

But you know, a lot of the gluten free stuff is very expensive, so eating root crops was much cheaper for me. In the beginning I changed my breakfast. We’d go on Saturdays and buy a heap of cassava or bundle of dalo. My family eats more rice than root crops, so a heap of cassava or a bundle of dalo lasts the whole week and sometimes 2 weeks for my breakfast. I was having root crops in the morning and because it was a heavy breakfast I was full until lunch. I’m based in Tappoos so at lunch, I’d just cross over to the market and get lettuce, cucumber and stuff.

After months of being on this diet, I could see changes and it was very encouraging. I also read some articles online about the gluten free diet. It said that if you are on a gluten free diet and you are still eating a lot, you will still put on weight. So, I thought ok, I still need to reduce my food portions. I was doing a lot of exercise but I wasn’t eating properly. 

“I lost weight. And so I just thought about just going back to eating anything and everything.”

From 130kg my weight dropped to 100kg. And so I just thought about just going back to eating anything and everything. I had gone through with my diet and exercise and had lost weight. I thought now that I got what I needed, that is, the size and the weight I can just eat. That was my mentality at the time. Then I started eating a little bit of bread, taking in milk and when I started doing that, I started feeling weak when I was exercising. I was losing weight and I was exercising but I wasn’t eating the right food. Not long, I started feeling the symptoms that I used to have before removing gluten and dairy from my diet. I started feeling fatigue, bloating, low energy, migraines, constipation and back pain again. I noticed that when I eat anything that contains dairy, I get diarrhea immediately. When I eat anything with gluten, my stomach gets really bloated, gassy and I’d get constipated. And I feel like I’m having cramps and I just can’t sleep!  So you can imagine when I eat both. 

Some days, I would exercise on an empty stomach and sometimes I would blackout. At one point my blackouts were quite frequent. I remember, at work I was losing focus a lot of times. We also had some family problems at the time and it was like I couldn’t handle everything. Then all of a sudden I started losing my sense of taste and so my appetite dropped. I was losing more and more weight but in an unhealthy way. I went down to 95kg. Then I got sick. 

I developed a growth on my neck and towards the end of 2020, I was diagnosed with Lymphoma cancer. My iron levels were very low at this point so I needed to eat foods rich in iron. I was eating rourou, bele, chicken liver and all. But it got to a point I lost my sense of taste and I couldn’t eat at all. I was throwing up most of the time and because of low blood count, I was always sleepy and tired. I kinda lost hope and I was wishing I’d go back to when my diet was good and I was feeling great. I had to go through chemotherapy and altogether I had six chemotherapy treatments in 2021.

“But when I survived chemo and covid19, my doctor asked me again what diet I was on. And when I told her it’s the gluten and dairy free diet, she didn’t prescribe a diet plan because she thought I was good to go!”

After I was diagnosed and throughout my chemotherapy, my doctor – an Oncology consultant at CWM, advised me to avoid sugary stuff like cakes and stuff. So, I stopped eating sugar and sugary pastries and I went back to my gluten and dairy free diet again. I went back to my root crops with eggs or chicken for breakfast. I tried to be strict with my diet. But it was hard. My husband would say, “keep to your diet, don’t eat this” or when he goes to work he’d tell the kids “make sure mommy doesn’t eat this”. And you know the kids won’t lie, so when he’d come back they’d tell him “she ate a little bit of that”. And then we start arguing. It made me sad because my family, especially the kids, were trying their very best because they wanted me to live but I was throwing it everywhere. I found it really hard to control myself and my desire to eat. The hard part is sitting down and watching everybody eat what they can eat and I can’t eat it. But I tried. I tried to maintain my diet throughout the period I went through chemo and it went really well. You know, I wanted to live and have more years with my kids and my family!

When you go through chemo, they provide lunch. And so I started telling them I don’t eat this and this and if you don’t have any options for me, it’s ok I’ll just go home. Because you know sometimes, they make a stew and they put flour in it and so I just say “no it’s ok, I can just go and eat at home”.

While I was going through my chemo treatment, my husband got covid19 during the second outbreak. At the time, he was partially vaccinated and because I was still on my chemo treatment, I couldn’t be vaccinated. We were quite worried so I called and told my doctor that I may get covid19. My doctor informed me that it’s really dangerous because I’m going through chemo and my immune system is currently down. Being realistic with me, she gave me examples of other cases that had covid and other NCDs and told me that we just have to hope for the best. Eventually, I got covid19 but my symptoms were mild compared to my husband and surprisingly I recovered quickly! 

At the end of chemotherapy, the doctors usually give patients a dietary plan or a list of foods to eat. So when I completed my chemo and survived covid, my doctor asked what diet I was on. And when I told her it’s the gluten and dairy free diet, she started telling me the benefits that she knows about it. In the end she thought she didn’t need to give me a diet plan and just said “you are good to go!” 

“And so now in the family, everybody is trying to look out. Like they will say, “if mommy stays away from this stuff, she will live longer.”

But, it’s been hard, you know. When you go to functions, you gotta eat something and then end up picking a little bit of this and that. And when you come back home it’s your family that has to deal with your sickness. And I just keep that in my head, that I don’t want my family to go through the same thing because of the mistakes I made before.

Initially, I didn’t really get the support I needed at work. Sometimes, they’ll say, just eat one or just taste it and drink water and flush everything out. This is why I have a heavy breakfast at home, so when I come to work I’m not hungry or tempted to eat. Sometimes I don’t eat with them only because I don’t want to be offered food I can’t eat. And I feel like I can’t be a team player if I don’t join them for tea or lunch. But now, my colleagues know I won’t eat any bread, cheese, butter or drink milk and stuff. And now one of my colleagues understands and tells me when there is food that doesn’t have gluten or dairy. So, I’ll join and like they’ll invite me for lunch and tell me “here, we’ve got something else for you”. 

Sometimes I don’t want to go to restaurants and ask that they don’t put flour. I find some people are so judgemental and they look at you like you’re so picky with your food. I mean they have a set menu and you ask them not to put this and add this, the look they give you, is like seriously if you don’t want it don’t come here. My sister recently found out she has a gluten problem and we are both on a gluten free diet so I feel like I have more support. When we go out, we always enquire about the food. But the only place I go to is just family and work. It’s just that I can’t take it anymore because I don’t want to get sick and go through all of that again. 

I’ve also had experiences where I go to places and they offer tea or coffee. And they’ve already made it with milk or milk powder inside and I’m sitting there not wanting to drink it but also not wanting to be rude and refuse it. One time my husband and I went to this place and they offered coffee with powdered milk in it. I was just sitting there and I didn’t touch it. And the lady was like “there, have your coffee”. And being friendly and all my husband goes “I’ll have it!” so he drank his cup of coffee and mine. But now, my husband is more confident to tell people that I don’t eat this or that. But I just avoid going to places and functions because of this. I’d only hang around my family. If I go to my mom’s house, she knows it very well. If everyone is having pies and purini and all, she will make curry and rice for me. And to others they may think I’m special, but no it’s just how it is.

Now I have a more balanced diet and my weight has remained constant at 100kg since my last chemo. I try to maintain my diet because there are little people in the house that tell me to stay away from gluten and dairy. Even when they’re having breakfast and I just look at the bread, they will go “you can’t have it”. And even sometimes when I want to steal it, they will go “daddy you know what? she wanted to eat the bread that day”. They will even read the food labels and tell me “oh you can’t eat this”. My kids know that I don’t take sugar and sometimes they’ll come and taste my tea first just to check. And they keep saying, “yeah we were telling you to stick to your diet but you never listen”. And we’ve had moments where we argue and never talk for 2-3 days just because I never listen. They tell me that we’ve been through the hard part and if I’m gonna go back to my old lifestyle it will affect us again.

I’m learning to resist the temptation of eating things that aren’t good for me. And if I do eat it, I’m actually lying to my family and myself. And now it’s encouraged me to stick to my words, like if I say stick to my diet to stick to it. And now in the family, everybody is trying to look out. Like they will say, “if mommy stays away from this stuff, she will live longer”. They make sure that when we cook our food, we cook it separately. But they also try to have the same thing I’m having. And eventhough I have better control over my desire for food now, I still need my family to police me and also encourage me. 

I’ve made mistakes before and I feel like God breaks you up into pieces so you can realise who and what’s really important in your life. You only have one life and you need to guard it well. So now to control, I only go to places that I know will respect what I want. I’ve also learned a lot. Like now, if I get sick of eating cassava and dalo, I’ll find ways to be creative with what we have. We’ve started buying cassava flour from the Wainibau women’s group and they deliver it. So, we use it if we have stew or something, we use it for the entire family meal. We stopped buying wheat flour at home and now I had to come up with making our own pastries like banana cake that tastes like biscuits haha. But it’s been an amazing journey. For the kids now, we are more careful. My son likes rourou (taro leaves) and my daughter likes bele, so we make sure they have this as a side. And for their lunch, if we don’t have fruits, I’ll cut up carrots and they actually eat it at school. And I kinda like it, because I’ve never done this before. Before I didn’t take it seriously until I got sick. Now, when my relatives feel sick they want to find out if they are intolerant to anything. They think there’s magic there but really it’s just eating healthy. 

“My diet has not only given me more energy to cope with everything, it has also given me my life back and a lot of confidence.”

Before I didn’t have the time and energy to do anything. My diet has not only given me more energy to cope with everything, it has also given me my life back and a lot of confidence. It’s like I feel like I can conquer anything in life now. I never really thought that I could go back to school. But now I have this freshness and energy just by sticking to my diet. I’m happy. I am able to work, study part time and juggle my responsibilities as a mother. It’s like I’m eager to learn, to do housework and to just LIVE! I have this energy and I’m just like BRING IT ON! I can do it!

Disclaimer: Please note that I am only sharing my experiences and it should not be taken as medical advice or me trying to promote a medical procedure. For any medical advice, consult a doctor.