Salicylate sensitivity - drinks, spices, dairy replacements

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Hi - I'm new to salicylate sensitivity. I've suspected it for a few months and have slowly cut out high salicylate foods, noticing improvements along the way. Recently, I've gone all-in on a low salicylate diet for a true test, and results are generally positive. Headaches are much better, I feel more alert, much less foggy, that's all good. The bad part, my stomach and digestion has been much worse, to the point of being very problematic.

I also have celiac and a dairy intolerance, so things get more complicated. Gluten free breads generally have multiple ingredients, some of which are high salicylate. I have eaten very little of this stuff anyway, but with the stomach issues I have had since going low salicylate, I kind of need something to calm it. The other thing that helps tremendously for me is coconut milk - how safe is that on a low salicylate diet? Coconut seems to be on the low end of moderate, is it possible to keep drinking small amounts (an ounce of two) of it? That is enough to help immensely. There is one flax milk, but I can not have it as it contains carrageenan where I live, and I can't have that either. Rice milk generally has carrageenan as well, Rice Dream is not safe for many celiacs as it uses a barley enzyme and while it tests at a less than 20 ppm gluten, I react to trace amounts. 

On spices, obviously some are quite high. Some of the literature says it's not a concern because of the small amounts. What have people found in regards to that? The reason my stomach is worse, my stomach has always reacted adversely to bland food. The spicier, the better! I'm doubled over in pain at times again, not like before going celiac diagnosis and going gluten free, but I am struggling with the same foods I had no stomach issues with before when I used spice or barbecue sauce. 

Also, I know cola is moderate, but in looking at coffee, decaf coffee is much lower than regular coffee. Are non-caffinated sodas better than ones with caffeine? I haven't touched any caffeine in years anyway. I have a lot of hydration issues, and once again, if I hydrate purely with water, my stomach goes on me. I need to mix in about 1 diet 7up every fourth glass to avoid issues. 

Thanks everyone!

 

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  • Posted

    Hi 2013Celiac,

    I am salycilate sensitive, have been for 3 years (before I turned 41 I could eat absolutely anything) and hence I now live on a rather bland and unhealthy diet. How I miss my fruit and veg and spicy foods! I can get away with small amounts of foods containing salicylates every now and then, but as it is a cumulative reaction, I have to be very careful not to 'risk' it too often.

    It is more common for people to have more than one intolerance at a time, so, you are probably in the more normal range being dairy, gluten and salicylate sensitive. But... perhaps you have other sensitivities/intolerances too?

    From my experience, the only way to work out what you are intolerant to, you need to go on a strict elimination diet for several weeks. When you are 100% symptom free, you introduce ONE challenge at a time, in high doses, for several days or until you notice any symptoms - or not. It took me at least 6 months to work my way through all the likely possibilities. I was guided by a dietitian at the University of Sydney Allergy clinic. Perhaps you have a similar facility near you?

    Personally, I do best if I take a high dose of pro-biotic supplement daily. It just helps with my overall wellbeing in general.

    FYI : Coconut is a big no no for me. And grainy breads too. And herbs (except a bit of parsley is ok) and spices. If I were you I would stick to 100% pure rice cakes.

    Unfortunately, what we WANT to eat and what our bodies can tolerate aren't always the same thing. I can only survive on a technically 'unhealthy' diet (think high cholesterol 'Viking' diet!) but what is recommended for the majority of the population by nutritionalists isn't right for everyone.

    ALL of the doctors, allergy specialists, naturopaths etc etc that I saw before I worked out what was wrong with me (thanks to the Uni allergy clinic) recommended things to me, with the best of intentions, that made me soooo much worse. They all thought I needed to 'detox' ie: give up meat and dairy, gluten, eat more fruit and veg and take these herbal supplements lol!! None of them had even heard of salycilate sensitivity.

    I hope you work out what is right for you. Good luck and if you think there's anything I can do to help, just ask!

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    • Posted

      Here's a link to 'The Elimination Diet Handbook' smile

      http://allergy.net.au/wp-content/uploads/2013/01/Handbook-p1-33.pdf

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    • Posted

      Thanks for the reply! It is definitely complicated, and aggravated by the fact that I have other issues that greatly limit my diet. Unfortunately, I won't be able to do a true elimination diet - it'd be hard to know when I had no symptoms, as my symptoms with salicylates are similar to other symptoms that are always present, especially from environmental allergies. I do more to avoid allergens than anyone I know, to the point of driving some people crazy LOL but the fact remains, even if you don't leave the house, some amount of pollen gets in. I also have a high protein diet for a number of reasons - I gained 100 pounds in the year prior to celiac diagnosis, and that was with me starting 20 pounds above where I wanted to be. In 13 months, I've lost 86 pounds by eating primarily grass fed beef and bison, which are safe for salicylates. Unfortunately, without a barbecue sauce to moisten it, the dry meat isn't agreeing with me, and for the first time in a while, I'm having digestive issues - which is also a concern. So I may have to use some limited sauce and see what that does if things don't inprove. I'd been in pain for two days, two spoonfuls of coconut milk last night and my stomach was fine - so I think I'll have to keep it included in limited amounts for now. 

      I can't touch herbal supplements, they always make me sick! As far as probiotics, I was taking some for a year, but the recent study that showed many probiotics, even those claiming to be gluten free, have some amount of gluten in them. Combined with blood work showing my ttg (celiac measure) increasing when it should be decreasing, given my very strict GF diet, I had to quit taking them. In the week or so since then, I have felt quite a bit better, so unless I can test them, I need to avoid probiotics it seems. 

      The spice thing is weird. They're high in salicylates, which I seem to do much better without, but my stomach does much better when I'm eating spicier food. It is bland, unspiced food that it rejects. Again, I might be forced by my overall health into some kind of compromise there. 

      I have been working with a naturopathic doctor who also has celiac disease, and that has been very useful on diet. I was also told about a dietician who specializes in food allergies, but I'm putting that off until after the Pan-Am Games here in the Toronto area, as she is quite a ways from me and traffic is expected to be apocalyptic during the games (total gridlock is a real reality as a result of lane and road closures)!

      Most of my life, I ate very little fruits and vegetables. I never cared for vegetables at all and never felt well after eating them. I started eating a lot of fruit after celiac diagnosis a little over two years ago - oranges, raspberries, blueberries, blackberries, etc. I had worsening headaches and body aches, and finally started to tie it to the fruit. Giving up the fruit and a supplement with salicylates has made the aches go away almost entirely! Headaches aren't totally gone, but it's impossible to know how much of that is allergies, we are having a brutal pollen season this year because of a late spring. 

      Thanks - I appreciate the help!! I do have one question - do you have any advice for eating when traveling, particularly when a kitchen isn't available?

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    • Posted

      Wow it is complicated isn't it! I know what you mean about driving other people crazy but how crazy is it for us living with it! Doesn't it get boring trying to explain it to other people?

      As for eating out... I usually aim for traditional pub fare and try to avoid Asian restaurants. Plain steak, mashed potato and green beans ("please don't add any olive oil") or fish and chips are my staple eating out dishes. Yawn! Occasionally I find myself somewhere like, my old favorite, a Thai restaurant. There, I'll order plenty of steamed rice, and maybe risk some garlic prawns or something, but I always specify no onion or carrot. And I just, as discreetly as possible, pick out any other added veggies. And I always have anti-histamine and cortisone on standby, just in case.

      I actually survived a 10 day holiday to Indonesia last year. I went with a friend who is a vegan and is gluten and lactose intolerant. Basically, what she couldn't eat, I could, and vice versa. But it was tough - especially watching so many flavorsome dishes and cocktails pass me by sad

      At least I can drink plain whiskey, gin or vodka when the going gets tough! And I can usually grab a packet of plain potato chips anywhere I go. Healthy.... not!

      Good luck and hang in there!

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    • Posted

      Thanks! It's a learning experience for sure, and a lot of trial and error. Pub food would suit me very well, burgers, steaks, potato, with some pasta mixed in was what I looked for before celiac diagnosis - and still is when it works (as in, gluten free options are available). Unfortunately, I find pubs to be less versed in preparation to avoid gluten cross-contamination, while ethnic restaurants tend to be some of the best. Having said that, a lot of larger bar/grills seem pretty good. I've generally stuck to a small number of entirely gluten free restaurants and the occasional trusted regular restaurant. 

      Im jealous of the gin, vodka, and whiskey - those are all out for me! The only thing I can drink is pure agave tequila or potato based vodka, but the later is all but impossible to find in bars and restaurants. I don't know if tequila is low salicylate - I don't drink much anyway, but that would have to be what I'd order if I wanted a drink regardless. 

      The nice thing with salicylates is the ability to pick things out - there isn't a serious reaction if someone in the kitchen touched a tomato before handling the meal. That's a nice break from celiac, where the same can't be said. From that point of view, this looks simple to me! smile LOL

      Do you find antihistamines help? I do take antihistamines for allergies anyway, hopefully that helps a bit here. To be honest, hopefully it helps more than it does for my allergies! LOL

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