Since I’ve been eating an allergen-free diet, I have encountered a whole host of ignorant and simply erroneous comments. I know that this is all too common among those of us with food intolerances/allergies and that is why I am writing this article because I know that many of you will be able to relate. Some comments are amusing and well meant, others are tactless and others are just downright ignorant and cruel. It seems that people get particularly fired up when it comes to the topic of gluten intolerance. This is partly because thyroid disease and gluten intolerance/celiac disease often go hand in hand and many people have reported an improvement in their symptoms and sometimes even a lowering of their dosage and of their antibodies when they switched to a gluten-free diet. This article is not my bid to convince you that gluten-free is healthier or even better. It is simply my attempt to spread awareness and help those of you who are not dealing with food intolerances to better understand what it is like for those of us who are.
I
“The gluten-free diet is a fad unless you are on it for medically necessary reasons”
This was said to me by a gal who was complaining about the gluten-free diet being forced on her in various thyroid forums. Whilst I have indeed seen this happen and have even experienced it myself before I was gluten-free, I have to say that this is not something that I do – I am happy to educate people about what going gluten-free means and also, if they have symptoms that sound like food intolerances, I will tell them so (as I know from my own experience how horrible it can be to suffer this way), but it’s up to each and every one of us to make our own nutritional decisions. And forcing something on someone is never “digested” well anyway – pardon the pun!
What bugs me most about this comment is not only is it downright rude; it’s also hurtful to those of us who are on this diet – whatever our reasons. In my personal opinion, nobody has the right to judge another person’s motives for following a particular diet. For some the gluten-free diet is a lifestyle choice, but if that is what they choose to do, surely it’s their prerogative. What’s more, calling it a “fad” even if you are only applying this to certain people, is doing a disservice to all of us who are on this diet because most people don’t care what your motives are for following a special diet and will happily listen to such misinformed statements. As it is, many gluten-free gals and guys really have to struggle to be taken seriously and, moreover, not to get constantly “glutened” because food companies so often fail to do their due diligence.
My philosophy is: live and let live! People like this lady are expecting those who are gluten-free to respect her choice not to go down that route. In turn, she needs to realise that it’s a two-way street and she should start showing more respect to those of us who are gluten-free for whatever the reason.
II
“Well, at least you can have alcohol!”
This was said jokingly to me shortly after my diagnosis with multiple food intolerances. Unsurprisingly, I did not find it as amusing as the person who said it meant it to be. As I am trying to heal my gut and basically maintain my health, I keep alcohol to a minimum, but as it is I can’t even have all alcohol because of my damn dairy intolerance! Looking back though, I have to smile at that comment.
III
The trouble with definitions … You say you’re gluten-free and here in Germany some people start talking about Glutamat, which is actually German for monosodium glutamate (aka MSG). Heide, my sister-in-law, has had people tell her she can’t have rice because some rice packets list rice as “glutinous rice”. On other occasions, she’s had waitresses tell her: “It’s okay, honey, we’ve got white bread!” That is why whatever language I am talking in I try to be very clear and very specific about what I can and can’t have. My years of cooking experience stand me in good stead here because I am often able to anticipate whether certain dishes may contain allergens that will cause my body to rebel. Other bloopers have included people asking me whether I can have coconut milk (when I mention I am “dairy-free”). And one that is rather specific to the German language: when I told the waiter at our favourite Turkish restaurant that I couldn’t have egg, he got confused and told me that I couldn’t have meat because it contains Eiweiß (the German word for both protein and egg white!). Well, I certainly have to give him credit for thinking it through, even if he ended up overthinking it!
IV
Recently, at a German Christmas market, I was hungry and there wasn’t much I could have other than the ubiquitous fried mushrooms. However, these are usually served with some sort of dairy-based sauce and a slice of bread, so I told the vendor: “Mushrooms without sauce and bread, please”. Of course, he, thinking he was being a clever dick, retorted: “Are you sure you even want the mushrooms?”
V
This brings me to my next point – one of my pet hates when I mention I am gluten-free is the pity-filled exclamation: “Oh you poor thing, what have you got left to eat!” Well, plenty actually. Being gluten-free, dairy-free and egg-free just means that we have to make more conscious choices, which isn’t actually a bad thing as we learn much more about what goes into our food and a lot of the stuff is crap anyway, so you end up avoiding it and having a healthier diet overall, particularly as the best food for someone with intolerances and allergies tends to be food that is cooked from scratch – I find this is something in which certain cuisines tend to excel and have written more about this in my previous article on being gluten-free in Germany. We do find ourselves cooking a lot more at home, which can be time-consuming, but if done right needn’t be as daunting as one might think (e.g. make soup in batches and it’ll be a meal for a good few days)
VI
Before I went on the gluten-free diet, I was very reluctant to go gluten-free as I mistakenly tended to think of it as cutting out an entire food group. I also wondered whether it would detrimentally affect my vitamin and mineral levels, but I can’t say this has been the case. If anything, they have improved since my absorption has improved as a result of eliminating allergens. In fact, a common symptom of celiac disease is the inability to absorb nutrients, so that some sufferers have extremely low iron levels, as well as low Vitamin D (then again, as we have talked in the past, low Vitamin D tends to prevail in a whole host of health conditions).
Recently, I did hear one worried mother talking about her daughter and how going on a gluten-free and dairy-diet has made her hair fall out and her nails brittle. Without knowing exactly what is going on with her daughter, it’s hard to know exactly what is the cause here. One thing I do know is that some people make the mistake of switching to an allergen-free diet, but still eating overly processed foods and not enough nutrient-rich ones. As I supplement and also eat a large amount of fruit and vegetables, I don’t seem to have any major nutritional deficiencies. In my experience and those of my friends who are gluten-free, this is not a common result of going gluten-free and dairy-free. But whatever the cause of these distressing symptoms, I wish my friend and her daughter well and I hope that they get to the bottom of this very soon.
VII
As you may have already realised from some of the points above, lack of empathy is often something those of us with food intolerances have to deal with. On a trip to France, shortly after my diagnosis, we visited a store for special dietary requirements. The woman who worked there severely pissed me off when she expected me to buy up her whole shop – the thing was when I asked her if she had tried her products and which ones were good she told me: “I haven’t tried any of my products because I don’t have to”. How the hell is that supposed to make me feel? That is, I believe, the crux of the matter. Whilst there are companies and stores out there who sell gluten-free products, not all of them are capable of putting themselves in our shoes and realising that we don’t just want things that we can eat; we also want things that we like to eat! At times, I have bit into an allergen-free muffin, cookie or slice of bread only to spit it out and throw it away. I may be gluten-free, dairy-free and egg-free, but that doesn’t mean that I should have to sacrifice flavour and deliciousness. Thankfully, there are those food companies out there who do care and do bother to make things that we want to eat. They don’t exhibit this “take it or leave it!” mentality and they want us to be happy with what we buy – particularly as gluten-free products are sadly still often more expensive than their gluten-containing counterparts. Before anyone rails on me for mentioning cookies and muffins, even I like to have my treats every now and again, but there too you can make conscious choices by looking at the type of sugar a brand uses (e.g. agave syrup and stevia are often healthier alternatives) or selecting brands with purer, clear-cut, no bullshit ingredients.
VIII
Talking of companies who give a shit versus those who don’t: I find it really infuriating that some restaurant chains go to the effort of listing the allergens in their food, but can’t go to an equal amount of effort to at least offer a few allergen-free options. As someone with multiple intolerances, I don’t expect to be able to eat everything on the menu, but I can tell you it does piss me off when gluten is in things as simple as salad dressings! Hard Rock Café comes to mind. On our wedding trip to Copenhagen, where we got married in their beautiful registry office, we were hungry and didn’t have that many options around, so plumped for the Hard Rock Café, thinking that as an American chain they were likely to have a greater understanding of gluten-free, etc. Whilst they did have an understanding of gluten-free, practically all of their meals contained gluten and what’s more I am pretty damn sure that they were only so eager to list the allergens in their food so that they can waive liability if someone gets sick. In the end, I did find something to eat, but it was quite an ordeal. And this is an experience that has been repeated in other restaurant chains we have been to as well – for health reasons, chain restaurants are not our eatery of choice, but when you are on the road or at an airport, you don’t always have that much choice and sometimes it is either that or starve.
IX
This last comment was made by a friend of ours. He is a very nice guy, but not that knowledgeable about food intolerances since he has not had to deal with them personally. A few nights back, Corey and I commented that more restaurants should do their due diligence, know what goes into their food and take responsibility for catering to their customers. As a service provider (translator and writer), I know only too well how vital it is to know my target group’s desires, needs and concerns. But our friend countered that it is the customer’s responsibility to tell the restaurant what they can and can’t eat and that it’s up to the customer to decide where they want to eat. Well, if only it were that simple! I am all for educating restaurants, and I do so frequently for the sake of other people who come in after me, but the number of times we have been to a restaurant and they did not know or care about the ingredients in their food or even have anything on their menu I could actually eat have been too many to mention.
What I think is that it is the responsibility of restaurants to know about food intolerances, particularly because they are becoming more prevalent. I told my friend as much and he countered with: “Well, it’s probably because gluten intolerance isn’t that prevalent in Germany”. Well, for one thing gluten intolerance is actually more common among those of Northern European descent (including Germans) and for another gluten intolerance is well and truly on the rise – even Reuters news agency seems to think so:
“‘Gluten intolerance was, until recently, considered rare’, said Dr. Petersen. ‘Today, with 1 to 4% of the population being affected by celiac disease and upwards of 10 to 20% affected by gluten sensitivity, it has become extremely common’”.
Another point I made to my friend is that part of the problem is that many people have symptoms the etiology of which they fail to associate with food intolerances because frankly there is not enough public awareness about food intolerances. The only reason I suspected gluten intolerance before my diagnosis is because I have thyroid disease and so I’m pretty well informed when it comes to diet. I also know various friends and family members with gluten intolerance or celiac disease and have heard about the symptoms and problems it can cause. But raising awareness alone is sadly not enough. Another big problem is that many people will test negative on the gluten intolerance/celiac tests, but still feel sooo much better when they go off gluten. How do I know this? Because I have heard countless stories from friends of how this has been the case for them. One of these is C. After hearing about my story, she was inspired to give gluten-free a try and it had astonishing results! As someone who was originally diagnosed with PCOS because of her problems with acne and irregular periods, she had then been told she didn’t have it after all, but her symptoms continued. Well, the amazing thing is that once she tried the gluten-free diet her acne subsided and her periods resumed. C truly is a beautiful girl inside and out and I know she won’t mind me telling you her inspiring story. Recently, she posted the following on my Facebook wall:
“I got an awesome compliment today from the big boss. He said I looked really good compared to a couple of months ago. He only comes to the worksite once a month for about a week! It felt great! I’m like I owe it all to being gluten free!”
Ultimately, I wrote this article to show you what those of us with food intolerances go through on a daily basis and why it is so very vital to raise awareness about what being gluten-free or dairy-free or any other allergen-free really means. Don’t be afraid to speak out if there is a misunderstanding or educate someone if they don’t quite get it. You’ll be doing the rest of us a favour, and as awareness increases, so too do the options and understanding for those of us who follow this lifestyle – whether by choice or for medical reasons. Whether you agree or disagree with gluten-free or a gluten-containing diet, the message to take home is: live and let live!
I can’t eat hormones in meat. Rather than ask questions, I just tell people I’m a vegetarian. Somehow that’s more acceptable than saying something they’ve prepared will make you ill. It’s not personal, but folks don’t get it very often. I have just given up.
The gluten thing, I believe, respect, but don’t quite understand. It would be much simpler to be able to put anything in your mouth and have your only fear being fat.
Hey Lee,
Thanks for commenting. I’m sorry people don’t get it with the meat and hormones. I am torn between telling people I’ll get sick and possibly freaking them out or explaining it in any other way. It’s tough!
Gluten intolerance is definitely misunderstood and, as I mentioned in my article, I didn’t really truly get it until I had to deal with it myself. It certainly would be easier to put anything in your mouth and God I wish I could, but right now I just can’t. It frustrates the hell out of me at times, but I am somewhat strict with myself in order to be well. I’ve certainly learned to look at food and appreciate it in a whole new light.
Love,
Sarah
What a great article! I personally don’t eat gluten free, however, I do make most of my meals from scratch and try to eat lots of veggies and fruits. It’s unfortunate that the Restaurant Industry isn’t offering options for Gluten Free/Allergen Free items. Some have tried to offer Low Cal options – but that doesnt cover all the ‘crap’ they put in those foods-such as Sodium, processed rice or veggies, unhealthy salad dressings etc. That being said – I know several people who love the Gluten Free Lifestyle and it’s done wonders for them. Hopefully more people like you are speaking out and spreading awareness in regards to this lifestyle of eating.
Hey Cindy,
Thanks for your kind words. I’m not sure I’d have gone gluten-free if I hadn’t have developed food intolerances. It is definitely a BIG commitment, but it really is worth it for many people. I think the restaurant industry are becoming more and more aware, but awareness always takes time. You are so right – sadly, they do put so much crap in foods. I don’t care so much about the low-cal stuff – I just try to nourish my body with foods that have pure ingredients and no surplus crappy additives. Wheat is a common allergen, so I suspect many people may have an underlying intolerance, even if it is just minor.
Hope you are doing well in the run-up to Christmas! Run-up is right, eh? It feels like I am running a marathon right now!
Love,
Sarah
Sarah.. my dear friend love your articles! And no I dont mind you writing about the stuff we talk about. Anytime babe! I can totally relate to alot of these comments. My coworkers are freaking awesome.. they feel bad for me, especially aroudn this time of year with all the good treats in the office.. so they bring me gluten free cookies that are all natural and they say that I got them all looking at labels seeing if I can eat this and that. Makes me feel wonderful for them to think of me. Then theres another coworker that said she wants to try the gluten free diet to lose weight. (Ive lost over 15lbs so far and no bloating, no digestion issues, acne has cleared, period is back, no more aches and pains. ) So after I tell her I am nto doing this to lose weight but because of medical reasons. Shes like oh but you are losing weight I said yes cause I am eating better as well and I feel like my thyroid is workign again. So all that helps! People can be so ignorant. Then theres this other coworker that suspects she has celiac becaues it runs in her family and she says she watns to go gluten free but she has no will power. I told her I got to a point where i couldnt handle it anymore and was willing to try anything. As embarrasing as this is i said ive even had an accident before (yes i pooped my pants)because my intolerance was so bad. So well see if she decides to go gluten free. I have started to notice that dairy is becoming an issue. I used to be able to eat yogurt but lately its caused me tummy aches. Eggs are another issue.. they give me really bad gas. I dont eat eggs often for that reason but may look into trying soemthign different. Dairy will be hard because I love my lattes!! I did notice growing up though that I was never able to tolerate whole milk or even 2% or even 1% milk fat.. id always have water it down. Well see.. I figured Id take baby steps. Gluten free was hard at first but now its like second nature! But the best part is the compliments and feeling alive again!
xoxox
Cynthia
My darling Cynthia,
Thanks so much for your positive comments. I’m very happy for you that your coworkers are so sympathetic and supportive even if not all of them totally understand. I have to admit that the weight loss is a nice side effect of cutting out intolerances, but I think many people fail to truly understand until they get so desperate that they are willing to give it a try. It is indeed very daunting and seems like you have to cut out so much, but in reality you just have to be more inventive and think more about what you put into your mouth, which is never a bad thing. I think many people lack the willpower – I used to think that gluten intolerance/celiac must be the worst possible punishment, but it’s really not and I know there are even more yummy options in the US. After cutting out gluten for around 6 months so far, my intolerance has gone down from a 3/4 to a 1/4 (wheat is still a 2/4) – that’s pretty good going!:-)
Sadly, I also have issues with dairy, which is common in those with gluten intolerance, and I’ve had less success with lowering my intolerance to this although one of the cow’s milk tests went down from a 4/4 to a 3/4. As you may have heard, many people tolerate goat’s and sheep’s milk much better – it has something to do with the lower casein/lactose content, I believe, I originally had a 3/4 intolerance to both of these, but sheep’s milk is now a 2/4 and goat’s milk is a 1/4, so there is hope. Even if you do have to cut out dairy, I wonder if you would tolerate goat’s/sheep’s milk better – personally I love goat’s and sheep’s milk cheeses – they’re quite popular here in Europe and feta can be quite yummy! Also, as you will know, there are brands such as So Delicious and Silk that do almond and coconut milk and they are great alternatives. Beware of oat milk of course as it usually contains gluten. And soy milk isn’t the best choice for the thyroid – isn’t it a minefield??:-)
Annoyingly, my intolerance to nori (which is found in most sushi rolls) has gone up from a 3/4 to a 4/4 despite avoiding it. Sometimes, foods will pop up on those tests that you’ve never eaten. Perhaps it’s because their structure is similar to another intolerance you have. I can’t do blue algae right now either – sucks, but I will get through it because there is still a lot I can have and we’ve both become more aware about what we eat and also more appreciative about what we eat.
I think many of us can relate to the accidents you mentioned – that is so tough when it gets that bad. Like you, eggs give me godawful flatulence, but my intolerance to these has also gone down a little. I have heard that some people find they tolerate freerange eggs better, and according to my tests I tolerate goose eggs better than hen eggs. Our doctor told us this is a common intolerance. I instinctively feel that I have more problems with eggs eaten pure – e.g. fried or scrambled than eggs just added to things.
I can’t tell you how happy I am for you that you are doing so well and making so much progress – I think your story is extremely inspiring and I’m happy I could share it with others!
Love,
Sarah
I did try the coconut milk and loved it but because its a nut it makes me break out. Ive always wondered if I had some kind of intolerance to nuts because they cause me to break out (acne). One of these days Im going to have to convince my doctor to do a allergy test but for now I know what I need to avoid so Im ok with that. I cannot wait to see my endocrinologist and tell him that gluten free is my answer. Even though he told me I didnt have celiac but with my symptoms he coudl have suggested to go gluten free. Hes an ass! Anyway, you are godsend my friend.. seriously.. thank you for all your support and love! You have helped me tremendously! Looking forward to meeting you someday soon once you arrive stateside!
xoxo
Cynthia
Hey Cynthia,
I think I remember you mentioning about nuts and breakouts. Nuts are another common allergen. Some people find it helps to soak them overnight, but I admit that seems like a lot of hassle. I still have issues with certain nuts too. Of course, you can do the old-fashioned elimintation diet. It already sounds like you might need to phase out dairy – at least for a while, but I know you have to get your head around that first. It can be kind of a mourning process at times. Sadly, many conventional doctors just don’t get the importance of food and proper nourishment and the fact that our immune system is said to be in our digestive tract – it makes sense in a lot of ways when you consider how certain foods can cause immune flare-ups. It’s just unconventional, so hard for a lot of docs to “swallow”. That was one thing I loved about her last doc – her holistic approach and focus on eating right. She was always very positive, empathic and supportive. I’ll really miss her. What’s more she has several food intolerances herself, so she really gets it.
Thank you for your kind words – they mean a lot to me. I’m happy to know you, Cynthia. You’re such a wonderful, bubbly and positive person even if things haven’t always seemed positive for you:-). I too am looking forward to meeting some day:-).
Love,
Sarah
Thank you SO much Sarah, for blogging so candidly about this nasty endocrine battle. Keep speaking out so eloquently and loudly!
Lucky for me, if you can call it luck, I actually finally measured as hypothyroid a year ago and have some recognition from the endocrinologists that there’s really something “autoimmune going on” *DUH!* I could be a poster woman for hypothyroid. I lost most of my eyebrows, half my hair, froze even in the heat of summer in Arizona, gained weight on my previously slim body, developed thick tissue binding in my upper arms and legs, was anemic, developed a peanut and soy allergy (and we’re talking real allergy needing an epi pen, not just the irritable bowel that had been plaguing me along the way)…BUT I measured “within normal limits” for thyroid for so long no one was saying that was my problem. Now the battle is for traditional endocrinologists to figure out what to do with me when they only want to use synthetic thyroid supplements and apparently they’re not working for me…
Like you, I’m trying to find my own way through this maze…
Caro in Phoenix, Arizona
Thank you, Caro for your encouraging comments! I’m glad you like my blog.
Welcome to the hypothyroid club. I’m sorry to hear about all your yucky symptoms. I’m sure many of us can identify!
How are you doing now? Do you plan to try out NDT? I’m going to try and get you a doc recommendation for the area from a friend I know there.
Love,
Sarah
Thanks, Sarah! Yes, I’ve got an appointment to see an MD here in Phoenix who is keen for NDT…by chance I read his book and I could have put a check mark next to 99% of the symptoms on his list and realize I’ve had thyroid problems a long long time. Unfortunately he can’t see me until April. I want to try NDT…I mean, why not if the Synthroid isn’t helping? It isn’t just about my hair…it is that I know what else quiet hypothyroidism is doing to my heart and arteries. But I will admit hair loss is a great motivator to get to the bottom of this now 😉
Hugs for all you do!
Caro
Hi Caro,
I’m very glad that you already have an appointment. I just wish you didn’t have to wait so damn long. That’s one of the big problems with good doctors – they are often so unavailable. We just moved to the US and have found a new doctor too, but we are yet to see him. We’ve been so very busy with other stuff! I totally understand your concern about the “silent” damage hypothyroidism could be doing because hypothyroidism can potentially affect a lot of things that can only be measured with the proper blood tests and even then they might not show up – we know how dangerous it is to overly rely on blood testing. I hope the new doc will test things such as Free T3/Free T4 as well as Free T3:Reverse T3 ratio. I’ve never had the latter test done – it seems practically unknown in Germany (where I lived up until recently). I’ll let you know if I hear back from my friend.
Take care and hope you are able to enjoy the New Year! We are moving into our new place in West New York, NJ on 12 January and I can hardly wait!:-) Right now we’re still based in Hoboken, which is nice but our temporary apartment isn’t so nice.
Love,
Sarah
PS: Out of curiosity – how did you find my site?
I found you quite accidentally on youtube. My good fortune 🙂
I just had TSH, free T4, thyroid antibody profile, thyroglobulin antibodies tests, with endocrinologist, and all came up within their normal limits. Obviously not normal enough if I’m still having obvious signs like hair and brow loss. I say signs rather than symptoms because they are visible to the endocrinologist too, not just me. Arms and legs have almost zero hair and you don’t wax? yah, I’d say that’s a sign 😉
Happy moving!
Caro
Good to know that video helped:-). Endos seem to be renowned for overly basing their judgement on blood tests and for not treating by symptoms. Integrative docs and osteopaths, etc. are supposed to be a better bet. And then there are certain (important) tests such as adrenal fatigue that many insurances just won’t pay for, so patients often end up ordering them from private labs, but of course not everyone has the money. It certainly sounds like those are signs of hypothyroidism. Do you also experience the mind-numbing tiredness? I really hope that NDT helps you. It seems to have helped many and is available from various different companies. You might want to check the ingredients though as some of them may contain your allergens. I don’t know for sure, but it’s better safe than sorry. If needs be, you can always get something specially compounded. I hear the new NDT Acella is also supposed to be quite good.
Love,
Sarah
Thank Heavens I’m not having the fatigue. I don’t want to wait for it. I recall being told my adrenal was not healthy years ago and was supposed to be taking something for adrenal support from the naturopath. Likely ignoring the other warning signs landed me in this current situation.
Thank you!
Caro
The fatigue really is the worst. Most of my customers had no idea how much I suffered whilst carrying on with my freelance career. I was working from my bed for quite some time, but luckily things have dramatically improved now. You really do have to tackle so many different things though. I’ve addressed many of them in my articles and the guest blogs also provide some very valuable info.
Like you, I ignored the warning signs. Tired and overweight for years, but no idea what was causing it – just figured I wasn’t a morning person. It was great to know that there was actually something wrong and that there was something I could do to treat it.
Love,
Sarah