Meet Jackie Love, who has been diagnosed with a hundred percent fructose and sorbitol intolerance.
Do you also feel as unique as the guest on this week’s episode? Have you visited too many doctors and specialists, but you are still unable to find the solution for your health problems?
In this episode, you’ll learn:
- What are the symptoms that Jacqueline suffers from?
- How did she get diagnosed?
- What are some of the foods that trigger her symptoms?
- What makes Jacqueline unique
- How did she end up on the low FODMAP diet?
- What is her biggest struggle apart fro IBS?
- How have her intolerances affected her day to day life?
LISTEN OR DOWNLOAD THE LOW FODMAP DIET & IBS PODCAST EPISODE 17 HERE
Can’t listen to this episode right now? Read the transcript below!
LARAH: Hi and welcome to the Low FODMAP diet and IBS Podcast. Today my guest is Jackie Love. Jackie suffers from a hundred percent intolerance of food containing fructose and sorbitol. This means that she cannot have any food at all that contains fructose and sorbitol. Fructose is a monosaccharide found in many fruits and vegetables and honey, and sorbitol is a sugar alcohol that can be naturally found in fruits like apples, pears, peaches and this is just to mention a few. It is also used as a sweetener in a lot of packaged food and drinks and also other things like sugar-free gums and mints. I met Jackie a few months ago while I was in Melbourne to film my documentary and I found her story very interesting and, of course, very unique. For this reason, I asked Jackie if she would be willing to come on my podcast and tell the listeners her interesting story… and here she is. It is with a great pleasure that I introduce to you my guest, Jackie Love.
LARAH: Hi, Jackie.
JACKIE: Hi, Larah.
LARAH: How are you doing? How you are feeling?
JACKIE: Well, thank you. How are you?
LARAH: I am very good as well. Thank you so much. Let’s start with the first question. Would you be able to tell the listeners your story from the beginning and also include the symptoms you were experiencing before being diagnosed with the intolerances of fructose and sorbitol? And how did you get diagnosed as well?
JACKIE: Sure. Well, for a while I wasn’t feeling a hundred percent. I would be bent over doubled in pain and rushing to the loo and vomiting and having awful diarrhea, but for me, Larah, the strangest thing was my weight gain. So why did I put on fourteen kilograms in three years? I was going to the gym and eating what I considered healthy food like a beautiful salad with rocket, mushrooms, avocado, red onion, marinated feta cheese which was, of course, full of garlic, also legumes, chickpeas, kidney beans or meat and three veg, butternut pumpkin, wholemeal pasta or even a slice of grainy bread. I thought that it could be really healthy, but no, it was not to be. Well, the turning point for me was one Sunday morning I woke up really early and was watching the Thunderbirds on television. My partner, Peter, was away that weekend and I was just sitting on the couch, and suddenly, I felt this excruciating pain down one arm and I had read about that and thought, “Oh my goodness. I think that’s a stroke or a heart attack or something coming on,” and I was really scared, Larah. It was horrible. So at eight o’clock in the morning, I was the first person in line at my local doctors and nearly died when I was told that I would be seeing a locum, someone who I had never met before. But when I told this doctor what my symptoms were, he gave me a check up and asked me questions about my symptoms and straight away he told me that he was going to send me for food intolerance tests. And honestly, Larah, I thought he was crazy. I really did. And I burst into tears which is so unlike me, I was just in disbelief and I was really frustrated and I thought what on earth is going on? But anyway, I didn’t think that there would be any way that my relatively healthy diet would be causing all of this. So off I went to do a breath test, the lactulose, fructose and the lactose. I felt a little bit sick having fructose syrup and about twenty minutes later I felt really quite off and I told the person running the tests and she said, ”Oh, yes. You’re actually nearly already off the scale for fructose. I think you’re intolerant to that.” So I did the three tests and after I finished them I jokingly said to the woman, because I’d been sitting there for nine hours at this stage…
JACKIE: …“Are there any more tests that I could do?” And she said, “Well, you could do sorbitol and glucose if you’d like.” So I thought I may as well so I booked in for those, and low and behold, to my great surprise, I was diagnosed with a hundred percent intolerance to both fructose and sorbitol. And, of course, I’ve since been back to that doctor, who was lovely, and I’ve apologised to him for thinking that he was crazy and told him he was wonderful, and if it wasn’t for him I could have very well been going on forever with these terrible symptoms, being undiagnosed.
LARAH: It’s just incredible, Jackie, because it is true, when you have symptoms like a heart attack, which I had very similar symptoms as well, you would never think that is something that you eat that is causing you that, isn’t it?
LARAH: So at the end, was it your acid reflux that was causing those symptoms?
JACKIE: Perhaps, yes. But obviously, it was the intolerance to these foods.
LARAH: Yeah, because for me it was almost the same, but instead of having pain in my right arm, I had really strong pain in my chest. When I Googled all the symptoms, as we do, well it came up that I could have possibly had unstable angina.
JACKIE: Yes, my goodness.
LARAH: So because I didn’t know about IBS yet and never suspected and had never even heard about it, my doctor sent me to do everything. I did an angiogram; I did all the other tests where they scan your heart and everything else. And at the end they said it’s acid reflux and I felt like stupid, you know? Like you are telling me I have done all that stuff and it was acid reflux? Why didn’t it feel like heartburn, though? If it felt like heartburn, I would have recognised it was indigestion heartburn, but it didn’t feel anything like that.
JACKIE: Exactly. Yes, you do, you feel silly, too, but it was just luck that I didn’t see another GP, perhaps who I’d never met before, who could have sent me for the same tests as you. It just happened to be this wonderful doctor who said that it was a food intolerance.
JACKIE: And you do… You do think they’re nuts.
LARAH: Yes, yes. Yeah I was the same when, at the end, I was diagnosed with IBS. I still didn’t know what it was and he said, “You need to see a dietitian,” and I was thinking, I didn’t say it, but I was thinking, what does a dietitian have to do with anything? I just had no clue.
JACKIE: Well, I understand how you feel.
LARAH: Ah, that’s good. So you got your diagnosis. Well it’s not good that you got it, but at least knowing that you have it. That’s incredible, and you’ve done all the breath testing, which I’ve done them separately, and yes, it takes like four or five hours for each one of them.
JACKIE: Yes, you have to do them separately, but you get to know the room.
LARAH: Yes, yeah I remember reading lots of magazines. Okay, so the fact that you have a hundred percent intolerance to both fructose and sorbitol makes you, therefore, pretty unique. And I was reading that even in a healthy individual, fructose is only properly absorbed there in quite small doses. Usually they say up to fifty grams at a time, and people with malabsorption usually are able to absorb less than twenty-five grams per meal or per sitting, but in your case, it’s nothing at all. You can’t have any at all. So what does your health specialist think about it?
JACKIE: Well, you’re quite right. The joy of being unique. I have been told I’m Australia’s most intolerant. So you’re quite right. It took me two years before I could eat a slice of normal bread. The first thing I did was I went to see Sue Shepherd and I went to her lecture to learn exactly what was wrong with me and the correct foods I could eat. Obviously, being in my situation, I had to be super, super vigilant and stick to her low FODMAP diet. I got straight onto it and kept a comprehensive food diary along with my symptoms so I knew what would set me off, if anything would set me off. To be honest with you, Larah, what worried me the most was the weight gain, the fourteen-kilogram weight gain that I had. So I booked into one of her dietitians because I wanted to know how I could lose these fourteen kilograms, that I’d put on over three or four years.
JACKIE: And she was very, very nice, but at the end of the day, she told me what I could eat, which I already knew because I’d been to Sue Shepherd’s lecture. So she really couldn’t help me and I don’t overeat so, it wasn’t really me overeating. And then this dreadful ride on the merry-go-round began…seeing all these specialists. So then I wasted my money and went to a horrible endocrinologist who basically told me that I must be eating too much and I should go and see her dietitian. And then I went to her dietitian who said I wasn’t eating too much at all, but she admitted that she didn’t know how to deal with intolerances and wondered why I had been sent to her in the first place. And then I went to another dietitian who told me to have a gene test to see if I had a particular gene whose dispositions are inclusive anyway. Sue Shepherd herself saw me, even though she doesn’t see new clients anymore. She saw me herself in between all of this, but even after following her advice, there was no difference in my weight. I think I went to get another dietitian who threw up her arms with yet another, “I have no idea… A hundred percent intolerant? Well you are a first and you poor thing.” I get that all the time. But then, Larah, I felt like I was a character in a freak show. I really thought that. It was awful. and I went to see a consultant at Clinical Nutrition. She was really nice, but obviously, had no idea. She wanted to put me on the Optifast diet which, of course. was full of fructose.
LARAH: Oh, dear.
JACKIE: So that wasn’t the answer. She ended up putting me on antidepressants for about a year I think it was, and it wasn’t because I was mentally depressed, but because my body was physically stressed and depressed.
LARAH: Okay, okay, interesting. Yeah, it’s interesting.
JACKIE: Yeah, it’s interesting. And that worked for a few months, but when my dosage increased, I couldn’t function. So I was living on about three to four cans of those energy drinks…
LARAH: Oh, dear…
JACKIE: … to get me through the day. And I’m a teacher and I couldn’t sleep in class, so I’d sit there with the Red Bull getting me through the class. And just to see the specialist in Frankston, I’d have to have a can before I got in the car to drive to her and then a can before I got in the car to drive home. And it was just this vicious circle and I just went back to my wonderful GP. She’s fantastic. She got me off the energy drinks and then I had to go back to the specialist and tell her in a lovely way that I wasn’t coming back, and then she wanted me to go on the medication for diabetes.
LARAH: What? What has that got to do….?
JACKIE: I don’t know.
JACKIE: Well, I thanked her very much for trying, but I told her that I was a lost cause, but please don’t worry, that it wasn’t her fault. And I guess, Larah, the joy of being unique, you know. But the problem is, I know more about my condition than the specialists and dietitians. And what really, I guess, upsets me is paying top dollar to go and see these people who react with the ‘oohs’ and the ‘ahhs’ and “I’ve never met anybody like you before.” And then it’s, “Let’s try this is and that…” and I end up interviewing them, because I’m the one that is a hundred percent intolerant and nobody else sees. Actually, I lie. There is one person out there: my mother.
LARAH: Oh, wow.
JACKIE: Funnily enough, two weeks before her 80th birthday she was diagnosed with a hundred percent fructose and a hundred percent sorbitol intolerance as well as fifty percent lactose intolerance.
LARAH: So how did she deal with that all her life?
JACKIE: Well, she hasn’t, you see. We both haven’t been intolerant all our lives. It’s just a recent thing. It’s just for me, probably, I would say, six years or five years before I had been diagnosed. With my mother, a couple of years. It’s just a recent thing for her that it came on in her seventies. Mine came on in my thirties.
JACKIE: So I used to be able to eat anything.
LARAH: Yes, so it could be anything that has triggered that?
JACKIE: That’s the thing, it’s just comes on.
LARAH: Hmmm… It’s really strange, isn’t it?
JACKIE: It’s really strange.
LARAH: So no one that you’ve seen, none of the specialists could help you because you and your mum are effectively the only people that they’d ever come across, having a hundred percent intolerance, and therefore, where did you get your information from?
JACKIE: I guess I’ve just being following the low FODMAP diet.
JACKIE: And it’s trial and error to be honest. Sometimes I can eat something, and then the next time I go to eat the same thing and I’ll have a reaction.
JACKIE: So it’s trial and error, really, and luck.
LARAH: It’s just incredible the number of people you had to see for not coming any closer to a conclusion…to just have an idea of what was going on with you and how could that help you with your weight loss. So it almost makes me think that there are a lot of people in our condition because I had, as well, a problem with my weight. I think in the past couple of years, I put on ten kilos, or even, probably, twelve or thirteen kilos just in two years. And that’s, again, the same as you. I wasn’t having a dreadful diet; I wasn’t having a chocolate mud cake every day. Not even maybe once a month, maybe I would have a treat and I wasn’t even having huge portions. I would just eat, as you said, seemingly healthy food. It’s really puzzling.
JACKIE: I understand how you feel.
LARAH: Okay, so considering that you are intolerant from fructose and sorbitol, are there any other FODMAPs that you’re intolerant too like, for instance, other sugar alcohols like mannitol or just struggle to absorb anything else like lactose, fructans or galacto-olisaccharides?
JACKIE: You know what, Larah, I honestly don’t know because I just stick to what I can eat.
JACKIE: And when I was younger and I wasn’t intolerant, I used to be really adventurous and
try to eat anything. I’m just not as adventurous as I used to be, because I just don’t want to get sick anymore. I can tell you that I’m eight percent lactose intolerant, so at least I can still enjoy my dairy products in moderation, but I’m too scared to try anything because I don’t want to end up vomiting. It’s just that I’m in pain. It’s just that awful merry-go-round that I was on.
LARAH: Ah, so for you it was a vomiting when you had things like fructose and sorbitol?
LARAH: Yes, and what else? Did you have diarrhea, constipation, cramps…?
JACKIE: Never constipation, but incredible cramps.
JACKIE: So much that I couldn’t even move. I was sort of bent over double and thinking that I was dying. You really think that something dreadful is happening to you and you don’t understand what. I thought I just had internal gastro.
JACKIE: You know, I just thought, “Oh gosh,” you know, but I never thought it was something like I just thought I had a gastro bug.
JACKIE: But I did have diarrhea, but the main thing for me was vomiting. And sometimes both. I didn’t know.
LARAH: Yeah. Did that happen soon after you ate?
JACKIE: It could happen any time from an hour up to twelve hours.
JACKIE: Sometimes the next day.
LARAH: Yeah, that makes sense. And sometimes it takes that long.
JACKIE: And it’s awful. The vomiting mainly, but diarrhoea was just hideous, and embarrassing, too, because you just need to get to a toilet and get to it now.
LARAH: Yeah, absolutely and that’s like me. I had the same. What about bloating? Did you have lots of bloating?
JACKIE: Yes, lots of bloating, I would have people ask me when I was due, when my baby was due.
JACKIE: I would be terribly upset about that.
LARAH: Yeah, I can imagine. At least we can understand each other. We speak the same language.
JACKIE: We can. Life was very grim, but it’s good now. We’re really lucky we have this low FODMAP diet.
LARAH: Yeah, I agree.
JACKIE: Because honestly, everything would be trial and error.
JACKIE: We wouldn’t know. Who would think that rocket, the lettuce, is full of sorbitol?
JACKIE: That’s when I get the sickest; when I eat rocket.
LARAH: Okay, because for me, I don’t have massive quantity, but I can have both rocket and lettuce and in fact, let me have a look just quickly at the Monash app. Yeah, well rocket, it says one cup is okay.
JACKIE: And that’s for people who are not a hundred percent intolerant.
LARAH: Yeah, that’s right, because it has sorbitol.
JACKIE: You might be able to have one cup, or I might not be able to have any cups at all; not even one little strand of it.
LARAH: So is it any lettuce at all or is it just some specific lettuce?
JACKIE: The good old iceberg. I can eat boring iceberg and I can eat spinach leaves.
LARAH: Okay, so…
JACKIE: You know what, Larah?
JACKIE: I don’t want to try any other lettuce. I would be okay with it, but why bother when I know I can eat iceberg and spinach leaves. There’s no point in trying another lettuce leaf and then ending up on the toilet for another three hours.
JACKIE: … just because I’ve had a piece of lettuce.
LARAH: Yup, no.
JACKIE: And that’s exactly what I did with rockets and I don’t want to go down that path again. And, I guess, in that way my diet is really limited.
LARAH: Yeah, I understand. What about kale? Can you have kale?
JACKIE: I’ve never tried it to be honest.
LARAH: You never tried it?
JACKIE: I’ve never tried it. I’d love to try it, but I keep thinking of the pain I’ll be in, if I do react to it.
LARAH: Yeah, it’s interesting because when you are looking at the app, some of the food on the Monash University app, it will tell you that you can have it up to a certain quantity, and obviously this is if you don’t have a hundred percent intolerance. And then it says above this quantity, it is high in this or that FODMAP, but for none of these, like the rocket or the lettuce or the kale it tells you that. So it’s hard to say, you know, what there is inside for you, if you wanted to say, one day, okay, I’m going to try kale and see if that’s okay, but unless you can be a hundred percent sure, it’s a bit difficult to risk it.
JACKIE: That’s exactly right. When I was diagnosed, the only thing that I was brave enough to eat was potato crisps. So I spent the first three weeks eating potato crisps and nothing more.
JACKIE: Because I wouldn’t react, and my cholesterol level went down and my doctor was amazed.
LARAH: So, you mean packets of chips?
JACKIE: Packets of chips, and I didn’t put on one kilogram. I put on no weight.
LARAH: That’s amazing.
JACKIE: All I ate for three weeks was potato crisps.
LARAH: Not that we would recommend to anyone to eat just potato crisps. But that’s quite incredible if you think you know something pretty unhealthy like potato chips, you’re okay. And then…
JACKIE: I think for three weeks. And considering I had been so, so sick for a while and all of a sudden I wasn’t because I was eating potato chips.
JACKIE: Okay, because there’s no fructose or sorbitol in them. So I was too scared to try anything else. I’m much more adventurous now I must admit.
LARAH: Potato chips, the miracle food. That’s funny.
JACKIE: It is.
LARAH: Obviously, all this is very difficult for you. I can understand. Like, for me, I can have almost anything in moderation and in small quantities. I think now, after three years, the diet is a breeze, apart from when I go out or I’m invited to places which is still a bit challenging. But, really, when I’m at home cooking my food, I have no issues. I know what I can eat; I know the quantities. But for you, knowing that you cannot have even a tiny amount of fructose and sorbitol, that is probably making your life much, much harder. So, if you can tell me, how have these intolerances impacted your day-to-day life? The preparation of food, eating out and anything else? Any other adjustments that you’ve had to make in your life to be able to work around these issues?
JACKIE: Well there have a few things in my life, definitely. If I cook, I have to cook FODMAP friendly food for Peter, my partner, and me. And when I serve it, he’ll add onion and garlic to his — as much as he can, once it’s served. Sometimes I cook a special sauce for him in a separate pan with onion and garlic in it, like a Bolognese or something like that. He is half Indian so if I go out, he’ll sneak an Indian curry laced with onion and garlic, so he’s in his element then. But when I go out for meals it can be really horrible because it just gets embarrassing, and so much so that Peter has said on numerous occasions that he would never go out and eat with me again because they always seem to muck up my meal when I’m with him. And this causes me great angst, as you can imagine, because most of the time he’s finished his meal and mine has not even arrived because I sent the first one back because there was something in it that wasn’t written on the menu, you know…that’s sprinkled on the top or the chef’s has put something on the top of it and there had been no mention over in the menu.
LARAH: Yeah, I got you. Yeah.
JACKIE: My friends are much more tolerant, though. I used to phone ahead to the restaurants because I was so paranoid about making a scene. It got to the stage where I didn’t even really want to go out because I’d be so upset about it, but now I just suffer in silence or I speak very quietly to the waiter or go up to the cashier if it’s at a pub and just quietly talk to them and pull out things from the menu.
JACKIE: I will tell you about the worst experience in my life. Would you like to hear about it?
LARAH: Oh yeah, sure.
JACKIE: It was my mother’s 80th birthday. We booked this venue in March for her 80th birthday.
LARAH: So this year?
JACKIE: This year.
JACKIE: Funnily enough, two weeks before the event she was diagnosed with a hundred percent fructose and a hundred percent sorbitol and a fifty percent lactose intolerance which I had mentioned to you before, and we were told that they could caterer for us, hundred percent guarantee that they had in house chefs and there wouldn’t be a problem. And it was a private room for sixteen people and three of us were intolerant. The dessert menu was okay, but we didn’t receive the savoury menu until the night before the event.
JACKIE: And for ninety dollars a pop, which was the same as everybody else, we were offered cucumber, dill and goat’s curd sandwiches.
LARAH: What? Cucumber, dill and goat cheese…
JACKIE: Oh, not goat cheese, goat’s curd…
LARAH: What is it?
JACKIE: Well, that’s basically when two people are lactose intolerant, it’s made from goat and it’s basically dairy, so…
JACKIE: And the other option was all absolutely delicious: red pepper and olive sandwiches and pumpkin sandwiches. The best one was the zucchini and goat’s cheese salad. So my poor mother, I had to cater the occasion by myself. I got some fructose friendly sausage rolls and savoury slices. I was up at at seven o’clock in the morning on the day of her birthday making egg, chicken, ham and mustard and salmon sandwiches, and in the end, they gave us a couple of slivers of chicken and salmon sandwiches in gluten free bread because I’d reacted as I did.
JACKIE: But there was no way I was going to spoil my mother’s 80th birthday. I didn’t want her to go hungry.
JACKIE: And as I said to the event coordinator the night before when she finally revealed that revolting menu, I said thank God it isn’t a wedding with over a hundred people. Imagine a bride not knowing what she or her bridal party or guests were going to be eating until the night before the event. And you know Larah, we’d been told up front in March, six months before the event, that they could cater for us.
JACKIE: And if they had said that they couldn’t, we would never have booked it and we had to pay for everything five days before the event. And the menu had been promised to us weeks before that, and even when I was paying, we were told we’d be getting a special menu within two days, but the night before… And it was just awful, awful.
LARAH: That is so bad.
LARAH: It’s just they can’t be bothered, really, that’s what it is. For them, it’s just too difficult, but then they should say it upfront, you know, “It sounds a bit complicated; we may not be able to do it.”
JACKIE: They said it was very, very common and their chefs could cater to it with no problem.
LARAH: Yeah, obviously, that’s not the case.
JACKIE: That’s right.
LARAH: Yeah, poor you.
JACKIE: My poor mother.
LARAH: Your mother, she is the same as you? So fructose, sorbitol and lactose?
JACKIE: She’s lactose as well. So…
LARAH: Yeah, so she’s got lactose more than you.
LARAH: But is she okay with some of the hard cheeses or she’s not at all?
JACKIE: Look, she has only just been diagnosed. Her birthday was only a couple of weeks ago and she was only diagnosed two weeks before that so she’s just working it out herself now.
JACKIE: So I’m not really sure and I don’t think she is really sure. I know she’s eating lactose free cheese at the moment, and milk.
JACKIE: I guess she might well be more adventurous later on down the track.
LARAH: Yeah, yeah, and can experiment a bit.
LARAH: Let’s talk about the low FODMAP diet again. So we have already mentioned that it has helped you, but did you go through like a proper elimination diet, because you found out you had a fructose and sorbitol intolerance already. So did you anyway go through the elimination diet, or did you just cut off those and cut off all the other FODMAPs? How did you do it and how has that helped you?
JACKIE: Well, would you believe everybody I saw never mentioned the word elimination diet?
JACKIE: So I never did the elimination diet, I guess, because I am a hundred percent intolerant to fructose and sorbitol. I had to totally eliminate them because it was a fact that that’s what was causing it. So I think I was probably a little bit easier than everybody else just eliminating certain things. But no, I just stuck to this low FODMAP diet, but obviously, I can eat lactose to a certain extent. So as I said, I’m 8% lactose intolerance so I could eat a little bit of lactose.
LARAH: Okay, that’s good. So all the symptoms are pretty much gone now?
JACKIE: Yes, pretty much, as long as I don’t eat the wrong foods.
LARAH: Yes, and do you feel like your energy has come back and you’re feeling okay? No need to resort to energy drinks or anything like that? Do you feel okay?
JACKIE: Since I’ve been off the antidepressants, I haven’t had any energy drinks at all and I’ve been off them for over a year.
LARAH: Yeah, that’s good.
JACKIE: So I’m back to my normal energy level.
LARAH: So what’s the main struggle you find with following the low FODMAP diet?
JACKIE: I think for me; the main struggle is when I’m not at home cooking for myself because then I don’t have control over what actually goes into the meals. So I used to travel an awful lot; especially overseas. Since being diagnosed, I’ve only been overseas once and that was for work to New Zealand. I’d love to go elsewhere, but I’d be living on French fries and potato crisps again. You know, as much as I love America, everything’s made from high fructose corn syrup and if you’re traveling, it’s really hard to cook for yourself when you’re on the go. You know my family is French for example, living in New Caledonia and I’m going there next year, but I’m already panicking about what I can eat over there because, of course, their food is different to what we have here. I guess I’ll just be eating fries or potato crisps for every meal.
LARAH: Hopefully you don’t have to resort to that, Jackie.
JACKIE: Well, I’m hoping so too, Larah, but you know I can’t be in the middle of a tour and start vomiting just because I’ve had a croissant for breakfast…
JACKIE: … because they haven’t got anything else and I don’t even know if they have gluten free bread. You can’t get a gluten free baguette.
LARAH: Is there any way that you can bring something like some staple food that you can have? You can have rice and quinoa. Can you have those?
JACKIE: Yes, I can.
LARAH: You can have those.
JACKIE: I can bring certain foods in there, yes.
LARAH: Okay, you’ll find rice for sure. I’m not sure if you’ll find quinoa. I have no idea. You’re okay with meats?
JACKIE: Yes, but you don’t know what they’ve been marinated in.
JACKIE: This is the reason why, for me, coming back to your question: What is the main struggle with the low FODMAP diet? It is when you can’t follow the FODMAP diet.
LARAH: Yes, when you’re not in control of what the food that you eat has got inside.
JACKIE: You’re actually in an environment where it is impossible for you to follow it, you
know. You’re sitting at a table and there is nothing on the menu that you can have. Even if you ask for steak or something, you might even get a steak that has been marinating in something or even the fries are beer battered. You just don’t know.
JACKIE: So you just have to be really, really careful. So I guess I’m going to have to survive on Imodium tablets for a couple of weeks.
LARAH: Oh, dear. It is just so hard, really. Yeah, and it’ll be good to find out, if you do any of the tours, if there is any way that they can help you out at all. You may have to just have a boring meal like plain, grilled, or whatever chicken.
LARAH: …and just some rice. And maybe you can bring your own sauce or something to sprinkle on top.
LARAH: …maybe some herbs, spices… something that you can have.
JACKIE: We’re just really lucky in Australia that it’s an Australian diet because everything is available here.
LARAH: Yeah. If you cook yourself, yes. But still, when you go out, like for me it’s pretty basic what I can eat when I go out. For you, it’s still really hard, but yes, in other countries as you said, you have no chance.
LARAH: What is one of the foods that you really miss that you cannot have any more?
JACKIE: I think that yummy, crusty beautiful bread. Proper bread. You know the gluten free stuff for me, it tastes like cardboard. It really does.
JACKIE: I think as far as sorbitol goes, those beautiful stone fruits including avocado and mushrooms or fructose. I’d do anything to eat a mango. You know, Sue Shepherd, in her lecture she mentions supplementing glucose tablets or having a bite of a mango and then having some glucose tablets, but I tried that. Unfortunately, I still vomited.
JACKIE: So it didn’t work for me because, of course, I’m a hundred percent intolerance. Nothing works.
LARAH: Yeah, yeah. Okay, yeah that’s another thing I was wondering if that would help you to have that extra glucose, but it doesn’t in your case.
JACKIE: Not in my case. It might in other people’s and it probably does, but certainly not for me.
LARAH: Hmmm…What about apart from the low FODMAP diet? Is there anything else that you do to manage your symptoms? Do you do any special exercise or meditation or is it just the diet?
JACKIE: Well, I cuddle my therapy dog, who is Patrick. He is beautiful. He is sitting here with me now and I’m giving him a big cuddle.
LARAH: He’s very cute.
JACKIE: I also love taking him for long walks and he actually loves to catch a good Pokémon. So we’ve walked a hundred sixty-four kilometres since we began looking for them together, but I haven’t lost one kilogram, of course. But I do feel fit inside myself.
LARAH: That is so funny. You must know a lot about Pokémon. What did you say? A hundred and sixty-five kilometres?
JACKIE: Hundred and sixty-four kilometres we’ve walked.
LARAH: Wow… and that’ll be like in six weeks because you only came out six weeks ago or eight weeks ago.
JACKIE: Exactly, exactly. It was the ninth of July we started. He’s getting really fit; so am I, but I’m not losing one kilogram, but at least it’s managing my symptoms. I’m supposed to be around sixty kilograms…
JACKIE: … and I’m about seventy-eight, so I put on about eighteen kilos.
LARAH: Yeah, I’ve just lost seventeen kilos and I’ve got another five or seven to go.
LARAH: Yeah, it has been extremely hard. We know that it’s rare to be a hundred percent fructose and sorbitol intolerant, but nevertheless, for anyone out there who is also suffering from those, do you have any tips at all because you may be quite unique in Australia, but maybe somewhere else in the world there is another poor soul like you?
JACKIE: I pity my soulmate. I have been thinking about this and, you know, we can be thankful that we’re ‘only’ fructose and sorbitol intolerant and not allergic, so at least we don’t need to inject ourselves with an Epi Pen if we have something we’re not supposed to eat. So when we have an intolerance attack, as I call them, and once it’s out of our body we can move on. It is not life threatening; it is just annoying. And I’ve noticed that intolerant people around me are either skinny or fat. I’ve yet to see somebody in between. And we can’t judge people. It’s not your fault and it’s not the end of the world and it’s taken me a really long time to come to this conclusion, Larah, that it’s not my fault.
LARAH: Uh-huh. Yeah, to accept yourself because it is not something that you want, but it’s something that you’ve got to deal with. What do you do? You probably wouldn’t lose anything even if you were starving yourself, there is probably another reason why and let’s put it out there, okay? For anyone listening that can address weight issue, when there is an intolerance going on. If anyone has an idea, please let me know.
JACKIE: Oh, please, can I have the answer, too?
LARAH: Okay, well my last question for you, Jackie, is if people want to get in touch with you, where can they find you?
JACKIE: You can email me. My address is: Jacqueline at LOTEAustralia dot com.
LARAH: Thank you so much Jackie. This has been very useful and I think there are lots of people that have fructose and sorbitol intolerance and that would have been very useful for them and for anyone that is as extreme as you are with their intolerance, at least they know that they’re not alone and there are other people that have the same issues. So thank you so much for being on the podcast and answering all the questions. You’ve been very kind.
JACKIE: Oh, you’re most welcome, Larah. Any time.
LARAH: Thank you, Jackie, and take care.
JACKIE: You too.
LARAH: Thank you so much for listening to this interview with my lovely guest, Jackie Love. I hope you’ve found our discussion on fructose and sorbitol intolerance very useful and that together with last week’s episode with the accredited dietitian Chloe McLeod, you’ve been able to understand a lot more about these types of intolerance. It’s now time to say goodbye and I wish you a great week. Keep healthy and happy as much as you can. Goodbye.
Links and resources mentioned in this episode: