You Know You're GF, But Do You Have Leaky Emotions Syndrome?

[Andrea-LifeAfterBread]

When we finally figure out that we have an allergy or intolerance to gluten, the first practical step we take is to cut it out.

We know what has to be done, and whether we like it or not, we try our best to do it. Pondering our Coeliac Food & Drink Directory, researching on the net, experimenting with all kinds of weird gluten free flours to try and recreate our favourite foods.

It feels like all our time is now devoted to re-inventing our lives without gluten!

It’s easy to get caught up in the technicalities.

But what about the emotional legacy our health challenges have left us with?

With all the extra time it takes reading food labels at the supermarket and the now-obligatory trip to the health store for extra GF supplies, there’s hardly time to deal with ‘feelings’, right?

I want to make a stand for acknowledging and dealing with the emotional fatigue that goes with the territory of what is often a long battle to find out the cause of our health problems.

One of the exercises I do with my clients starts with simply writing down on an A4 page all the negative feelings that come up when they think about their experiences.

Here were some of my words:

Body image. Self-conscious. Loss of confidence – in self and abilities. Feeling anti-social. Disconnected. Different. Apart. Fragmented. Not whole. Boring. Not fun. Everything such an effort. A burden. Guilty. Angry. Weary. Fed up. Fearful. Misunderstood. Not in control. Loss. Bereaved – of my old self. Feel ugly. Unattractive. Unsexy. Unworthy. Embarrassed. Not wanting intimacy. No sex drive. No enthusiasm. Distant. Confused.

Don’t be put off, this isn’t just an exercise in digging up misery! There is great power in getting these emotions out of your mind and on to paper.

The next step is to take a look at what emotions on your list are still having negative effects in your life. For example, for me:

1. Loss of confidence in my abilities had held me back at work, even once I started to feel better. I figured that being ill for so long had dashed any hopes of advancement.

2. I still felt anger and bitterness towards people who had not been supportive, had not really believed me. “See, I told you I was sick! Who’s laughing now?!... um…”

3. Feeling constantly sick and bloated and sore had eroded my self-worth, my body image and any desire for sex! How can you say “not tonight dear, my diarrhea/constipation/UTI is playing up…”

It’s at this point that you know what emotional weak points you need to give love and attention to.

These were some of the steps I took to heal these scarred areas:

Instead of trying to tackle all of them at once, I decided to start with my body image:

* I began a strict self-care regime! This wasn’t an act of vanity, it was an act of love.

* I primped and preened and learned not to massage my legs with magnesium oil after shaving them… Ouch!

* I would massage my belly with chamomile and thank it for always communicating with me.

* I would massage my scalp and thank my hair for growing back now that it was happier.

* I treated myself to reiki sessions and literally felt the emotional blockages clearing (my therapist learned to have plenty of kleenex on hand!)

* I joined a hatha yoga class and pondered that I wouldn’t have trusted a downward dog a year ago…

* I tried my hand at meditation. At first I was terrible at it! But I kept experimenting with guided meditation audios until I found ones that worked for me. This method is now very popular with my clients to reduce stress and anxiety.

After a few months, the difference in my confidence was incredible. In fact, these acts of self-care had a knock-on effect on the other areas I need to give attention to:

I felt less angry towards people and I felt more confident at work. The work in these areas became easier as a result.

I hope this encourages you to do some work on the emotional baggage that is inevitable when you are dealing with a chronic condition. I recognised that those negative thought patterns would continue to hold me back, and even if I felt physically well, my gluten intolerance would still be affecting my life. And I wasn’t standing for that!

It would be great to hear your comments on what emotional effects your experience brought along with it. Like most poisons, better out than in!

[leslaki]

Thanks for that Andrea, thank goodness its not just me with all these negativities and emotions, plus all those things you said, anger has always been a big one for me. I have been seeing a counsellor for 10 weeks, and am beginning to get the hang of meditation, difficult one I must say. Have tried reiki, stopped, but am considering going back to it. Am going to learn Thi Chi, have the dvd, just a matter of doing it now. The hardest thing for me is ME time!

[Andrea-LifeAfterBread in reply to leslaki]

Thanks for replying, Leslaki, and you are absolutely not the only one with negative thoughts

Anger was a big one for me, the biggest emotion after the body image issues. And you are doing a great thing by seeking counselling, because these emotions are stored in our cells and can create further physical problems if left to fester.

Thai Chi is a great alternative to reiki, especially as reiki can be a very emotional and sometimes difficult experience when deep negative emotions are involved - you kinda have to go through the discomfort before you really feel the benefit. That's true of many therapies of course!

Allow yourself to feel good that you have recognised and are dealing with the less tangible aspects of healing!

Andrea x

[HiveMind]

Hi,

Interesting to hear other people's "take" on being GF.

Quite frankly, I have no time to dwell on my GF situation. And before anyone says sarcastically "Oh, good for you" , let me tell you why.

I have other major "health challenges" and my GF choice (yes, CHOICE because I've never been diagnosed - just know I feel TONS better by doing it) is way down the list of things that figure on my "irksome" radar.

I guess what I'm trying to say is, seriously folks, don't make too much out of being intolerant/ CD/GF. There are people worse off in the world.

(I don't subscribe to the "poor me" way of thinking - it's bad for the soul)

[Andrea-LifeAfterBread in reply to HiveMind]

Hi BerkshireBird,

I wanted to emphasise that doing this work is not fostering a poor me way of thinking. Quite the opposite, in fact. Being honest about the things we genuinely feel is healthy, and giving them space is healthy AS LONG as you do the work to deal with them.

I agree that simply dwelling on negative feelings is unhealthy. But if it's the start of a process leading to better emotional health, that will ultimately improve your physical wellbeing.

There are absolutely many people worse off than each one of us. But that doesn't invalidate anyone's genuine emotions about their own experience.

Andrea x

[pretender]

Having had appointments with the local Alcohol Unit my consumption is related to the stress that this condition and the others gives me also the way it has been handled,so is not really seen as an issue more a get out of hospital card as it is not that frequent and does help the stomach get rid of the nasty bits.

I am not GF I am Totally free of gluten & wheat and other things including sleep.

[Andrea-LifeAfterBread in reply to pretender]

Hi Pretender,

Thank you for sharing, your experience is a rather unhappy example of how the stress of chronic illness can lead to further health and life problems.

Andrea x

[pretender in reply to Andrea-LifeAfterBread]

The stress is human inflicted through lack of knowledge, education & training by those who are in theory supposed to care rather than financial incentives with in the Health Profession and charities who claim they work in our interest....More Vodka please! (not much else avaiable to me). Safe for Coeliac's what a statement.

[Angie22]

I am also totally free from wheat, gluten and sleep. Its not about thinking poor me, its about all the other medical problems that come with CD. Andrea knowing that I am not the only person with CD to have all these negative feeling is a great help. The big one for me is my 3 stone weight gain which makes me very embarressed over the size of my body this has effected my confidence within my job and my home life. I like the idea of a regime for self care. I am going to start with the A4 paper exercise and think of the other ways CD has effected my life. Thank you Andrea

[Andrea-LifeAfterBread in reply to Angie22]

Hi Angie22,

I am glad you got something positive from my post you're not alone! I remember when I was first diagnosed and went gluten free, I gained a lot of weight and used to joke I was going to write a GF cookbook titled 'So You Think You Can't Be Coeliac And Fat', because many people at the time assumed that the condition would only lead to weight loss, not gain!

I don't think it's a coincidence that I only lost the weight once I had done the work on healing my emotions, as well as ditching the GF substitute foods.

Let me know how you get on with the exercise, I would love to know.

Andrea x

[coeliacvegan]

Likewise, I am totally gluten free, as I have found the small levels of gluten in so-called 'gluten-free' processed foods to be too much for my system at the moment. That said, from reading through Andrea's blogs and the responses to it, I realise how extremely luck I am.

My only feelings following my diagnosis have been relief and happiness. After three months without consuming gluten, I feel better than I can ever remember having felt before in my entire life. Nearly all of my health problems have resolved themselves, and the few remaining issues are gradually improving as time goes on.

I don't miss gluten foods or my former lifestyle one little bit. I am just delighted to have this whole new lease of life, while I am still young enough to really benefit from it.

Admittedly, I was already following a vegan diet, do perhaps I was already well accustomed to eating differently to others. I also teach yoga and meditate, so that too probably stood me in good stead.

While I can see the importance of acknowledging and addressing any negative emotions, I personally feel it's far more beneficial to embrace the 'new you', and to focus on all the myriad health improvements experienced, whatever the pace of progress.

Being diagnosed with coeliac disease is not a bad thing - it's the start of the journey to good health. We are fortunate in suffering from a disease that is totally treatable. That's something to celebrate, not mourn.

[Andrea-LifeAfterBread in reply to coeliacvegan]

Hi CoeliacVegan,

I really do agree that a positive outlook is much healthier than a negative one.

The point I was trying to make is that many of us do experience a degree of negative emotions linked to illness/diagnosis process/recovery. If those negative emotions are there, it's a positive step to acknowledge them and not feel guilty about feeling the way you do, deal with them in ways that are caring to yourself, and lay them to rest so that you can step forward with a much more positive outlook.

I agree with so much of what you wrote. I was incredibly relieved when I was diagnosed and began to feel better without gluten. Going gluten free was, in hindsight, one of the best things that has happened to me and I am now healthier than I was before I first got sick 12 years ago.

But even with the relief and elation, there were still these emotional blockages. It was a really positive step for me to take control and deal with them (and self-care was much more fun than a psychotherapists couch!). And moreover, my clients have really benefited from these processes too.

Andrea x

[coeliacvegan]

Thoroughly agree with the importance of self-care, and think it's great that you are offering so many people the tools to address whatever problems they might have. It certainly can be a lot to process when you're first diagnosed...!

[Eggardon]

Great to see all these elements acknowledged. Can be so frustrating not being able to be ones old self.

At my wife's suggestion I went to see someone who delivers the following services:

Food Intolerance and Digestive Health Clinic

Allergy Testing, Allergy Therapy, Kinesiology, Naturopathy, Reflexology

They really seem to have stabilised some aspects of my condition. I would never expect anything like this to emerge from the NHS you really have to go out and seek help yourself.

One interesting outcome has been to drop ham and bacon from my diet thus avoiding sulphites.

[Hidden]

Hi Folks, I think that this side of being a coeliac the psychological side is very important and that by sharing our fears and our fear of being made ill by food and food prepared by others is part and parcel of the cure. So well done Andrea for bringing this up. It's been discussed a few times in the past on here.

So for me even tho I cope really well with my diet and I appreciate feeling well which's something most non coeliac take for granted. I fear some food and I fear food prepared by other's. But I don't dwell on my fears I'm just aware of them and they are my limitations. So by 'us' being open and honest about our fears we can help those who are struggling and feel why me etc.

I think that the secret is to look at what we can eat rather than what we have to avoid and be grateful that we have been diagnosed and then to be able to be honest about our feelings.

And I'm repeating my self here LOL...

[pretender]

"I think that the secret is to look at what we can eat rather than what we have to avoid and be grateful that we have been diagnosed and then to be able to be honest about our feelings"

"the secret is to look at what we can eat rather than what have to avoid" nearly six years after my second diagnosis it has been a long path for me as it has been the other way around "rather what we avoid" and it is the stress that the accepted treatment for coeliac's being the "Gluten-free diet" and nothing else by the gp's, consultants,professor's we see and do not understand we are not textbook and the diagnosis may mask an underlying condition which will not be investigated with out the patient being persistent.

"the foods we can eat" are what is left that we can tolerate

[Regalbirdy]

Hi Andrea,

I really appreciated your comments on the emotional aspects that many Coeliacs have to deal with. Two phrases of yours really jumped out at me when I read your post as ones I can really relate to; but maybe not in the way that you originally anticipated.

I have definitely been left with an emotional legacy and emotional fatigue. I was only officially diagnosed with coeliac disease a couple of months ago - thanks to a doctor who was on the ball.

However looking back, I strongly suspect I should have been diagnosed as coeliac as a child of around seven or eight - I am now 40. So much of what I went through back then now makes sense.

I am now only just starting to realise/assimilate the impact of being an undiagnosed coeliac has had on my life. It made things harder for me at school and significantly affected my ability to concentrate. This obviously had an impact on my schoolwork and ability to learn Many of my school reports came back saying that I wasn't trying hard enough/that I should apply myself more and stop daydreaming. This led to negative feedback from my mum, and it felt like I was being accused of being lazy - which I knew was not the case. I was trying my hardest to keep up at school in the circumstances I found myself in. Fortunately I have a fairly good intelligence level and got by.

To this day I am still dealing with the feelings of hurt and bewilderment that all those experiences have left me with - that is one of the big legacies I have. I have been lucky though. Several years ago I found my way into a tai chi class and this has allowed me the space to grow, develop and face some of the issues I have, with the help of an incredible teacher.

To Leslaki: I admire your desire to learn Tai Chi but please don't learn tai chi only from a DVD. I can only strongly recommend you find yourself a teacher as all you will ever learn from a DVD is an introduction to the shapes. DVDs cannot tell you what Tai Chi feels like, which is an integral part of it - it is an internal art after all! I recommend that you find a family style school if you can as the ethos is slightly different to the public style. Good luck!

Those folks who have written that they have found meditation helpful, I agree it is. Again I recommend you find somebody to help you with this if you can.

My journey will continue with what I now recognise is an experience similar to grieving, for all that I have lost and for all that could/should have been. However negative that sounds it is not - coming to terms with my past is a positive thing for me.

Being diagnosed as a coeliac was a relief. My health has improved already and I have accepted most aspects of my new lifestyle already (eating GF etc). Eating out has become a minefield though - it seems is okay to be a coeliac (just!) but try being a vegetarian coeliac; that has definitely cause some head scratching on the part of restauranteurs!

Cheers all!

Regalbirdy

[FionaGFG Administrator]

Hi Andrea - thanks for posting this. It's ages since we posted up about the emotional side of CD and it's an important area that is often overlooked as it effects us, our families, friends and work colleagues. Everyone responds differently to a CD diagnosis. Focusing on our feelings and how we can adapt our lifestyle for our health is the way forward. There are many disease that are worse than CD but even so it can be a challenge for many newbie and long term coeliacs alike.

[Mia1057]

Thanks Andrea, a really helpful piece of advice