I’ve read a few blog posts and media website articles lately that I find concerning – both as a person dealing with a digestive issue and a normal human being. My fructose malabsorption (FM) is definitely not as extensive as many people with whom I have spoken over online forums, or as dangerous as an anaphylactic reaction but it is there and it has impacted my life, for better and worse, over the last 8 years since I was diagnosed.
- The first article I read was a little tongue in cheek, and complained about those with “fake” gluten allergies making a joke of it, so that wait staff/chefs don’t take real allergies quite as seriously as they should, or would, if this were not the case. That’s fine, I get it. So many people are eating gluten free now, and not all for the right reasons.* It’s understandable that those who go gluten free because it’s the latest fad might slightly tick off those who have no choice in the matter – a Coeliac friend of mine ends up in the hospital on antiemetics if she is exposed to gluten and has told me that she doesn’t understand those who chose the lifestyle over a more accessible diet without a decent reason.
- The second article was downright depressing to read from the stand point of “one of those” customers with a food intolerance. I already feel guilty enough going to eat out at restaurants, knowing I’ll have to ask extra questions and take a little longer to decide what to order, without someone with no expertise deciding if my issues are worthy of their attention. The amount of times I get looks that tell me I’m crazy for not eating an apparently random assortment of foods keeps growing and is a large reason why Ev and I have found a couple of restaurants that suit us and we’re sticking with them.
- The article that frustrated me the most, however, was this charmer by Mia Freedman. I understand that she was trying to make light of all the recent health related diet fads but she did so in a way that belittled those of us who deal with dietary restrictions that we would more than happily give up.
What is really depressing about most of what I read is that both the articles and the comments sections demonstrated such a lack of understanding of those with both diagnosed and un- or self-diagnosed issues. I suppose I should expect no less from the second article, but an article written by (I assume) a Coeliac would, you would think, have a little more empathy for those who are also dealing with intolerances and possibly garner an audience of like-minded people. Personally, I can tolerate gluten – which means that rye and spelt have opened up as options to me, if my FM can tolerate the fructans (it can, in reasonable amounts). However, I still cannot eat wheat, due to the amount and type of fructans present – yes, FM is a complicated beast.
I would think that most people, like myself, had a long-ish road to diagnosis, after which it took another couple of months before I was really “getting” the fructose friendly diet. It took my parents and I about six months of looking, after a couple of years of an increasingly irritable bowel that one day just got worse than my tolerance level for it. Other stories I have heard have spanned about ten years or more of inexplicable symptoms before a diagnosis was reached! The more exotic your intolerance – or the more inept your doctor – the longer the road is, generally speaking. From this I would assume that we might exercise a little more tolerance of those who are just starting out and maybe don’t quite understand their particular diet just yet. Maybe they don’t have a particular diet (FODMAPs, GAPS etc) that they are following but they have realised that certain foods don’t sit well with them. Intolerances come in all shapes and sizes; if these lucky people only need to cut out a few things in order to feel well again then great, good for them. I’m jealous but I’m not going to call them out for drinking a beer when it has gluten in it, if they are only “trying to watch their gluten” and have decided that this beer fits in with their tolerance level.
I believe in proper diagnosis but this is not always possible. A variety of factors play into this situation:
- Availability of testing procedures
- The knowledge base of your health professional
- The test might aggravate your symptoms past a level you are comfortable with
If somebody told you that they felt better after cutting out wheat or gluten, yet could not have the test due to one of the above reasons, does that make their report of their symptom improvement any less valid than a Coeliac reporting on the benefits of cutting out gluten? No, it does not. We all know our own bodies and we have the ability to judge just what we are happy dealing with and what we will change if possible. Changing symptoms through diet is one of the easiest ways to go about it. It might take a little getting used to but it is more often than not preferable to taking medications that can have unwanted side effects. What I’m trying to say is that if we don’t know the details, who are we to judge? And even if we did, we still can’t know or understand how much the individual is affected by the food; we’re not sitting with them in the toilet, or suffering through their cramps with them at work or home – for those who are lucky enough to have dodged this bullet, it’s not just the cramps or the “runs” that we have to deal with, the initial symptoms also lead to fatigue, frustration, nutritional deficiencies and more.
The second article, for all its short comings, does raise a good point that was discussed at length in the comments section – if you are intolerant of something, and you decide that you do want to eat out (which you have every right to), set yourself up for success. If you have Coeliacs, an Italian restaurant might not be the best idea. Anaphylactic to shellfish? I’d probably steer clear of a seafood restaurant. It is of course up to you to decide what level of risk you are happy with but I can understand a waiter at an Italian restaurant might be a tad miffed if you start having a go at him regarding their lack of gluten free options. They don’t have to cater for us, though I’m certainly glad that most of them try to. But by making a choice like this and harassing a waiter, you will only give everyone with a food intolerance a bad name. If you graciously explain your situation and keep everything civil, it will all work out for you in the end – even if you have to go elsewhere – and for food intolerant people everywhere who would like to eat out. If we are easy going to deal with as a whole, hopefully the stigma surrounding us will cease to exist.
As someone with a relatively unknown intolerance (over here in the USA, anyway – FM is gaining a good knowledge base in Australia), I experience a lot of disdain from waiters when I try to explain that it’s not gluten, it’s something else in wheat that upsets my gut. Whenever I ask about wheat in a restaurant, the response is, “gluten free?” To which I always feel obliged to say, “No, I’m not a Coeliac but I can’t have another substance in wheat called ‘fructans.'” Why do I feel as though I have to explain the intricacies of FM to everyone? It would be easier to just answer a simple, “yes” to that question but there is an underlying feeling of guilt at lying. But why? My reason for avoiding wheat is just as valid as the next. I have even heard of other fruct mals being told that nobody is allergic to onion, so they must be faking it. Believe me, I’m not going to go into a restaurant and be difficult on purpose. Why would I avoid one of the most widely used flavours (and for good reason, onion is delicious) without cause?
Because of this, I rarely eat out, except for at a couple of trusted restaurants. It’s too difficult. I don’t like to cause trouble for my gut or my fellow diners. It’s easier to have dinner parties at our home, even with our tiny kitchen added into the equation. Sometimes, however, I do take risks – and sometimes they pay off. But not always. When this happens, lack of education is normally to blame, rather than malice – the beauty of this is that the education/knowledge problem can be solved. I was at a chocolate festival in Seattle earlier this year and I was religiously checking the ingredients in what I was tasting. One seller talked about her “all natural chocolate.” Of course I asked what sugars were added to sweeten it, apparently none? Great, I’ll try some. After I’d finished my bite she went on to talk about the organic agave syrup that she used! I let her know – as gently as I could after a frustrated outburst – that agave is a sugar, as is honey or maple syrup or any other natural syrup (as well as the processed varieties. The point being, in case you don’t have FM and don’t know, agave is incredibly high in fructose, with very little glucose – a terrible sweetener for a fruct mal to use. Cue the looks of disbelief from the chocolatier.
The fact that I continually need to justify why I’m avoiding agave, wheat or pears – such a wide range of foods that it seems I’m making it up – frustrates me. I wish FM was as well known and consistent as a lactose or gluten intolerance, then the name would be enough. We are often written off as just being difficult due to the extreme range of foods high in fructose and fructans. Add into the equation the rest of the FODMAPs that many others cannot tolerate and eating out can seem virtually impossible. It’s not just wait-staff either, friends and family (I’m very lucky with mine but not everyone else is) want to know exactly why you can’t eat certain foods and what will happen. My friends will know I’m not shy when it comes to talking about bodily functions (a health degree will do that to you) but it’s easy to tell when someone is truly interested or if they’re deciding for themselves whether they think my intolerance is real – or as other people have experienced – if their reactions aren’t so severe that they can sneak an unsafe food into the meal. I’m very lucky to have only experienced genuine fructose related mishaps when others have cooked for me – and it doesn’t bother me at all, because at least they tried.
It really is a basic act of respect to accept that someone cannot eat a food, for their own reasons. Vegetarians don’t – or shouldn’t – get harassed for eating salads at a BBQ. Why should we be harassed for being picky eaters? As Mia Freedman so delightfully put it, we “bang on about it.” I’m sorry (actually, I’m not) but you just asked me why I’m not eating/can’t eat such and such. For some intolerances, there is no simple answer. While I make every attempt not to bore people, I do feel like I am doing a good thing in restaurants by giving my little FM spiel to the wait staff. FM is so unrecognised in the US that it needs all the publicity help it can get. If someone is just newly diagnosed, they might be so excited that they finally know why they’ve been so ill that they can’t help telling their friends; they might also be so frustrated and depressed with the seemingly restrictive new diet that they’ve been put on that they need to vent. Either reason is acceptable and part of friendship is listening when it’s needed. On the other hand, I can completely understand that those who are overly zealous and trying to convert people who don’t need it to their chosen diet or lifestyle may be considered annoying. If someone asks for help in loosing weight/IBS/fatigue etc, by all means suggest what has worked for you. If you see someone scoffing a slice of Pavlova, don’t start telling them how bad sugar is for them; they might have just been at the gym.
Empathy and understanding are required by all to handle situations, such as those in restaurants, which might and sometimes do blow out of proportion. The same goes for people with different types of allergies or intolerances. As I said, my FM is generally easy for me to manage. And I’m certainly glad that I’m not so sensitive that I can’t be in the room with an apple, as some with peanut allergies cannot be near an open jar of peanut butter. I will not puff up, my airways do not swell closed and I don’t need to carry an epipen with me at all times. However, while I am lucky that my reaction to fructans aren’t too bad, my reaction to excess free fructose can be extreme. The last three times I consumed apple, the cramps were so bad that I fainted twice – luckily in the computer lab at uni and at home – and almost fainted once – in the middle of NYC, luckily with a couple of very understanding friends. While abdominal cramps due to carbohydrate fermentation in my gut isn’t life threatening, if I fainted while driving or alone in the street? What then? It could definitely get dangerous.
I have never understood why we have to be competitive with our allergies. Is this a contest that we really want to win? Because it’s not really winning at all. This occurs mainly on websites, where users can hide behind their computer screens, which I suppose removes the human element to our online interactions but I like to think that I would talk to someone in the same way that I type to someone, much as I do on here. This allergy superiority needs to stop, we need to support each other and be glad when one group/condition reaches heightened awareness, as it can only mean good things for all the rest. Should the Coeliacs out there be so mad at those with a gluten intolerance, or who are “watching” their gluten? I don’t think so, because without the vocal minority, the awareness about gluten wouldn’t be as widespread as it is now; they have actually done them a favour. Those who don’t believe in intolerances and allergies have and will always exist and whether you choose a diet for medical or “other” reasons will not change that.
Next time someone orders a beer after eating gluten free finger foods, just smile and sip on your wine. It tastes better, anyway.
* In my humble opinion, the wrong reason for going gluten free is that you’re doing it because a magazine article told you to, without looking into it any further. GF diets can and do help many people but if they’re not done properly (i.e. you rely on packaged, processed GF foods) then they can do more harm than good.