Grieving for #Gluten

I read this really good blog post the other day from a gluten free ‘Mom’ in the states. It actually made me cry. I so recognised the feelings she describes of just how difficult it can be to give up what is essentially a food, why we are so emotionally connected to it, and why we constantly crave eating something we know makes us poorly. For ‘gluten’ here, read any food you have to give up, or read ‘many foods’. I said to someone the other day it is like a grieving process we go through. It is, isn’t it? Even though people say ‘it’s just food’ which makes me look at them in a withering sort of way. It really isn’t about the food, it’s about the complete life overhaul.

Gluten is not just a highly addictive grain that civilization has cultivated and consumed for thousands of years; it is not “just one” of many foods.  It’s not about the food, never has been, and never will be.  There are plenty of other foods to eat, that’s not the point.

Gluten is part of your soul, and every time you smell fried chicken or baked bread, every time you find yourself at an event with gluten as an ingredient in a traditional meal, every time you have to decline an invitation or move heaven and earth to participate, you are giving up part of your soul.  You are reminded that not only is the current world not designed for you, but that so much of your fondly remembered past was not designed for you either.  And then you become overwhelmed considering a future as an alien, a stranger in the world without anchor or reprieve…

…You understand why others “don’t understand,” even though in a secret place you yearn for them to finally “get it.”  Your heart becomes heavy when you have to watch your loved ones continue on in family traditions without you by their side.  You begin to feel as though your mother has chosen food over you.  You start to confuse genuine looks of sympathy and concern from other people as subtle hints that there is something wrong with you, that “how dare you burden your family with this disease”…as though you had any control over it.  And you want it all to PLEASE JUST GO AWAY!

It’s this kind of feeling that makes doing this blog important for me, and I hope you too. It makes me feel less alone and more connected with people who know instantly what I am on about; I don’t have to hide it or explain. I hope in 2013 to start some regular face to face meetings where we can meet informally and just chinwag/moan/learn etc etc – our own TGF support group, if you like. It’s so important.

I went to a ‘do’ this weekend and thought hard to come up with a short explanation of why I was bringing my own food and wine that would hopefully brook no questions. Sure enough, I think it took roughly 2 minutes for someone to start taking the ‘p’. The quick answer was:

“I have a severe form of coeliac disease which has damaged my insides so I can react very easily to lots of things. It’s safer if I bring my own food, thanks.”

If anyone goes on, my quip is: “would you laugh in the same way at a diabetic who couldn’t eat sweet things..?” I am also sometimes tempted to add: “would you like me to be sick all over you? Well don’t try and make me eat it then.” Usually shuts them up! (They don’t know I wouldn’t actually be sick but it’s fun seeing their faces – naughty girl!)

In fact, I am having my own Christmas do in December and I actually had requests from some of them there if we could have the food I took on Saturday! I win.

Anyway, have a read of this post here. It’s really about why people cheat on traditional gluten free diets but it makes a lot of emotional sense to me. Get your tissues ready…


10 thoughts on “Grieving for #Gluten

  1. The grieving process applied here is very interesting and so true! I seriously craved pizza to obsession levels 8mths into going gf/df …. very odd how that came on. Two years on it’s those social situations where the temptation is still there at times to just ‘fit in’ and not ’cause trouble’. I used to try and justify the changes I was making to my diet by trying to persuade people they’d feel better on the same diet , quoting from the latest research or book I’d read …. must have sounded a right nutter at times!! However I have learned to enjoy and embrace ‘being different’, to no longer spout lots of the science behind what I do and just ‘be’. It’s liberating! And once I toned down the ‘nutter’ conversations I am seeing something interesting …. the colleague who confides they have cut out gluten and cannot believe the positive difference it’s made to their general health (1yr after ridiculing me when I started my dietary changes!), the friend who would not admit migraines were a food related issue suddenly trying an elimination diet and the family members who have started asking my advice for meals they can cook (for themselves) that don’t contain gluten/dairy. And rather like Micki’s experience, I have found that when I take my own food to parties I now take extra as people always want to try my food and actually like it – and it’s nice to share! This whole process we go through is definitely for life so we may as well find ways to enjoy it and get it to work for us. It’s not selfish as I am finding that others are benefitting their health, or at least starting to make that link between diet and their health, by my example. Even my husband is finally making signs of coming around to it! Rome was never built in a day but focussing on a brick at a time just might get us there!

    • Ah, like the comment about hubby coming round. It’s incredible that even though someone sees what you go through, it still takes a long time to them to compute! As a nutritionist, I long ago stopped even saying what I do for a living let alone ‘spout’. I now say as little as possible although the terrific temptation to help is so strong sometimes I break that rule!. We can’t help being caring. And right 😉

  2. The worst for me -still- is the continuous struggle and trials with food, and people not understanding why one minute you can have that, and the next you don’t. Or when people get upset at you because you wont join them at family dinners, or friends just start avoiding you all together because going out is such a task.. group hug please!!!

    • Group hug on its way, Nele. I know you are feeling down currently. It’s the constant struggle isn’t it? Some days/weeks/months are definitely better than others and I’m sorry you’re going through one of the tougher times. Sometimes I would just LOVE not to have to think about it. I think the hardest for me sometimes is considering what I have to achieve/where I have to go in the next few days and planning how I am going to keep myself well enough to do it and not spoil outings/not be able to think straight for you all etc etc. I have to plan to be extremely careful and not contaminate myself. If I could just get past that hypersensitivity, I wouldn’t actually mind having no grains, dairy etc ever again. But, of course, that’s what the Barrier Plan is for, we just have to make it work!

  3. Definitely the place for group hugs here! Yes, when I moved from ‘gluten free’ to ‘corn free’ then ‘rice free’ etc it didn’t half cause a disturbance! I even had people who emphatically told me that corn is gluten free and I was talking nonsense. I also had someone ask me why I ‘restrict’ (as he saw it) my diet ‘so much’ and when I explained the differences I am finding to my health as I eliminate foods he just stopped me mid flow and said ‘I don’t want to listen to this’!! Why? Because many of my ailments were similar to his & he couldn’t bear the thought that the wheat and sweet based foods he’s addicted to had anything to do with his symptoms. Sometimes we may be putting a mirror up to people that they just don’t want to look into. Keep going histamine intolerance …. you’ll reap the biggest benefit in the end.

    • Ah, Ruth, we have all been there and it is indeed a horrid place. I think if someone doesn’t suffer it, it must be very difficult to accept and understand. I know P has only just really come round to realising that a tiny bit really matters. He says now he recognises the glutening before I do as my face colour just suddenly goes grey. But that doesn’t stop him washing a cup out in the wrong water (the newest need) or buying wheaty floury rolls and merrily sticking them on the grill pan with gay abandon. It’s just so not front of mind for them and I suppose that’s what I was saying I find most difficult. I resent having to think about it all the time and just want to ‘be’ if you know what I mean.

      I hope you are feeling better now. It does seem, doesn’t it that we can feel SO much better as long as we don’t take in any trace of grain but that comes at the cost of being hyper-sensitive to any we do come across. There is no middle ground. I so want us to be able to crack this one and it all comes down to being able to stop the blinking stuff getting into the system through the ruddy barriers. At least we have more understanding and an evolving plan now.

      More practically, I think Debbie has tried the tequila. She reckoned it was OK although she has suffered a reaction since that could be this new item. Debbie…which one was it, pls and do you think it was that yet??

      Otherwise, I find the SOLO red wine the only alcohol I can tolerate (look in search box). I used to manage champagne a while ago then started reacting to that. Could have been washing up residue or something but I haven’t tried it again since. Also, Debbie has found us some possibly TGF safe cider – have a look through the latest comments on the TGF Food page. Subscribe to comments on the site to get them all through.

      Hope that helps. Group hug x

    • Totally agree with the mirror thing. All my career in natural medicine, I have come across this time and time again. People can get quite aggressive and nasty because they know they should be doing the same thing and don’t like to think about it. A lot of other hassle comes from life partners, which always saddens me, and more than once I have had to get them in and explain to see if we can take the pressure off the ‘I want my meat and two veg/pasta,’ ‘what are you on about, you hypochondriac’ and ‘why do you believe this crap’ mentalities that are surprisingly prevalent.

  4. Great to read this stuff. Just been away on a 3 week climbing trip in Spain in a camper van with my boyfriend who eats gluten for every meal. I tried so hard not to get ‘glutened’, he’s really patient and understanding but still says things like ‘I can see you really believe in this’ (believe?!!) and ‘aren’t you going to have a bit of christmas cake at christmas just for a treat?’ and then feels offended when I tell him I’m not quite sure he really gets it. I managed to get away with only a few mild reactions, presumably due to having breadcrumbs around and washing up in small amounts of water with his cereal bowl etc until the last couple of days when i had a fullblown glutening. I got really low about the whole thing as I knew I hadn’t eaten anything dodgy so it must ‘ve been from kissing or touching gluten and llcking my fingers or something. I felt totally overwhelmed that such a trace amount could make me feel so awful, and broke down in tears of frustration at feeling so trapped. It’s great to know what’s causing the problem and to have some control but I sometimes feel like it’s impossible not to get caught out, especially when my partner consumes so much of the stuff! I think what gets me down the most is the feeling that to some extent my boyfriend is humouring me and that although he can see how much better I am since going TGF, on some level I suspect he still thinks I’m slightly bonkers and a hyperchondriac, particularly when I attribute symptoms like insomnia, brain fog and irritability to something I ate or even contaminated washing-up water! Anyway, it’s really wonderful to read these posts, it stops me feeling so alone. I’m sort of dreading the xmas season, still need to found some alcohol I can drink. I’m not too bothered about alcohol but at least people might be more likely to believe me if I take my own rather than completely abstaining! Has anyone tried 100% blue agave tequila? Or can you get safe wine in small bottles, or champagne maybe?

    P.S. just to let you know Micky, I got the ARG multivimin without copper and iron a couple of months ago but only tried them for a few days as realised i was reacting to them – guess I got a batch with corny vit C hey ho

  5. Interesting thing happened whilst I was away this week for work. My hubbie has, by default, cut down significantly on gluten based foods to pretty much just cereal and one loaf of bread a week. As I was away he bought himself a massive deep crust pizza and stuffed himself. Within an hour he said he felt awful – bloated, sweaty, palpitations etc … As he described this I just could not help the massive grin that appeared on my face! He has even booked himself a Dr appointment. Maybe, just maybe, he’ll attempt the elimination diet properly and actually experience for himself that those aches, pains, weight and other ailments he moans about are not just a result of ”getting old’!?!

    • We shouldn’t grin, should we, but…?!! He might get an inkling into why it is so important you avoid it now and it will make life easier not having so much in the house if he does give it up. He might be one of those who just tolerates a bit but gets a problem if he overdoes it maybe. Wheat intolerance rather than gluten sensitivity? Hope he feels better soon, keep us posted.

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