Eating #Gluten Out? Is It Worth the Risk?

I asked Clare (from the previous post where she ate out with no reactions) what she had eaten and if she quizzes the restaurants beforehand. Note that some you win and some you lose, as she is clearly discovering. In fact, I used to go out an awful lot and it was partly the fact that I started to be really ill after most outings that put me onto the truly gluten free issue in the first place. As I recall, some chips at the Rose & Crown in Warwick were the final straw. I wondered what the heck I could be reacting to and, after thinking about it, realised it was what else had been cooked in the same oil. Eureka, if sad and frustrating, moment!

My view on eating out is that, during the first 1-2 years, I have chosen not to take the risk as I am super-sensitive and want to give my gut and barriers the best chance of healing, but it is a choice for you. Clearly it is a right royal pain in the backside and I would be lying if I didn’t bang the table and feel sorry for myself pretty often, but I live in hope I can clear the glutens and other allergens from my system, re-heal the gut and other barriers to stop the increasing level of proteins getting through and bring any damaging inflammation down. That takes hard and consistent work and I want to give my body the best chance possible. It may not be able to do it ultimately, but I wouldn’t want to have to think after all this hard work it was because I slipped up too often. Remember, gluten research suggests that a gluten exposure only has to be tiny (the size of a 16th of your little fingernail in one study) and not very regular (once a week is enough) to cause continued Marsh 4 (serious) coeliac disease.

Of course, the last thing I want to be is a killjoy and I am not going to tell my patients not to live a full and enjoyable life. I can only advise what I think based on experience and research. Only you know whether that risk is worth taking for you and we will all be somewhere along that spectrum. For my own part, I still go out to loads of places, but always take my own food. “If I ain’t made it, it ain’t goin in my mouth” is my main motto at the moment! Luckily, most people understand and if they don’t: tough!

Here’s Clare’s reply anyway for you, thank you Clare – let’s have some more of other people’s thoughts and experiences -:

I chose from the Christmas menu and started with a goose & rabbit pate which came with a gluten free toast which I did risk and have a bit of – I tend to do this when I’m feeling well!!  I then had grass fed steak with vegetables – very good.  I rang them beforehand and my details were on the order for the party.  They asked who I was when we arrived so they knew who to serve gluten/dairy free.  For desert I had a mix of sorbets including an apple sorbet which was delicious.

I felt fine the next day.  I went out for lunch again on Friday to the Leopard in Bishops Tachbrook and had steak again (not confirmed as grass fed).  They also supplied gluten free chips with the steak so I did try them (yum!) …. however didn’t check the coating and will be phoning to find out as I was heady and ‘snotty’ the next day and just starting to feel clearer again by end of today.  [Ed: see below where she found out they were coated in cornflour…]

My reactions are definitely delayed and/or progressive in nature.  I am very interested in the allergy test results and what they’ll show & hoping they’ll help. [Ed: we are waiting for results on the Food Intolerance Test 1 which is helping us to identify other major allergens that may be causing inflammation or cross-reactions which will slow/prevent healing of the gut barriers]

Eating out clearly doesn’t always agree with me and one thing I realise I probably have to address.  I also don’t quiz the restaurant enough up front which I need to get more into the habit of doing.  I don’t eat out nearly as much as I used to – however clearly even the cut down amount I do may still be too much even though I am (moderately) careful!

A few days later, she then sent this one in, where clearly things did not go well!:

Also thought it worth letting you know my latest eating out escapade.  After last week (slipping up on chips that were ‘gluten free’ but coated with cornflour (!)) I had a curry evening organised at Five Rivers in Leamington last night.  I decided to go and eat as usually curry has been ok for me. 

However this probably goes down as the worst eating out experience to date.  I would not recommend the place for anyone with dietary requirements.  I went through several waiters in an attempt to get dietary requirements across. I asked for no dairy – they brought me a creamy dish.  They then replaced it with a dish too chilli hot to eat when I asked for medium/mild dry curry.  The onion bhaji was supposed to be made with gram flour but my head today is certainly telling me otherwise.  

I am giving serious thought to going cold turkey on eating out – hard to do but last night really brought home the need for control over food prep and content!


4 thoughts on “Eating #Gluten Out? Is It Worth the Risk?

  1. Hi Micki,
    Very readable post, as always. But if you’re GF why do you feel there are still glutens in your system?

    • Hi Alex,

      Thanks for dropping by and your nice comments. As you can see from my site, I believe that many coeliacs and gluten-freers are having problems with the glutens in grains other than wheat, rye, barley and oats. You can see from Clare’s post, for example, her reaction to corn, and I have many much more severe patients with corn reactions and quite a few with all grains (including me). It is a well-known fact that many coeliacs do not heal and I think this is the reason for some of them, despite the old chestnut about lack of diet compliance, which certainly affects some but not the severe people I see – they wouldn’t dare have gluten or they would be really ill!

      The other thing is no-one seems to know how long it takes for gluten to come out of your system and therefore is continuing to do damage. Some believe it can take at least a year or more for the gluten-caused barrier damage, auto-immunity and inflammation to start to calm down. Then again, of course, there are accidental slips (known as per Clare and unknown – annoyingly!) I think in one of my posts, Dr Osborne, for example, says gluten has a half life of 3-4 months and some lovely commenter worked out that would be 2 years to get it out of your system! Great.

  2. I am still definitely in the withdrawal phase and react severely to all grains. I wouldn’t risk eating out and take my own food with me. I normally have green tea if I’m out for a coffee – We were out for coffee/tea yesterday- my partner ordered it and was horrified becasue the lady making it took the tea bag out of a tupperware container and placed it on the counter while she filled the teapot with water. Phill explained the situation and she very kindly put the tea bag back in the box and got a fresh one out using tongs and placed it straight in the teapot I Just hope the next person to have greentea isn’t grain sensitive too! Did make me think I am safer using a sealed tea bag – extreme as it seems.

    • Not extreme at all, although I do worry about teabags generally. Not sure why. Bleached? What glues them together? Recently I have been enjoying real Darjeeling loose tea which is very subtle but tea-like, needs no sugar or milk and is meant to be drunk hot and plain. In a beautiful cup, of course. I have asked for some japanese tiny cups for Chrimbles! My local lady is obsessed with teas and does mail-order at Golden Monkey Tea Co.

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