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Jmg

Robinson Crusoe and the lost isle of gluten

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Note: This is a very long and given the current state of our world an almost wickedly self indulgent post. It's purpose is to set out how gluten intolerance symptoms has effected my life and the subsequent psychological impact of discovering it's existence and true extent.  In doing so, I selfishly hope to clarify my own thoughts and emotions, but I hope it proves of some interest to others if  stick through it to the end. If not tldr gluten sucks! 

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Robinson Crusoe, sits on the island, in this, the 23rd year since shipwreck. Through the years he has learned to make the best of his situation, long since despairing of rescue and thus resolved to come to terms with island life.  Although it's a tough and lonely existence, Crusoe has enjoyed some successes in taming the environment and a measure of comfort despite his isolation. He tries not to think of the outside world and all that is lost to him beyond the ocean as to do so would be too painful.

All this was to change the day a fever took hold. Roaming  the jungle in search of a certain medicinal plant, he took a wrong turn and slipped down a steep embankment which plunged him into a hidden tunnel. Imagine his wonder when he followed it to a cave backed onto the sheer inaccessible cliffs on the north side of the island.  Venturing forward he found a small but seaworthy boat had been stored here, a relic from the times when pirates roamed the seas.

Fever forgotten, Crusoe gathered provisions and set sail for the sea lanes and salvation. Within weeks he was back in civilisation, telling his story to an astonished audience. As he finished narrating the tale of his shipwreck and voyage, one listener raised his arm in question: 

'Sir, your tale is remarkable indeed, can it really be true that in all those long years of isolation your means of escape were always within such a short distance?'

Crusoe didn't answer, all his words were spent, but those closest to him swore they saw a tear forming in his eyes before he turned away and the keenest ear among them thought he'd muttered 'Sir, I'm still on that damned island even now' as he left the room...

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The hardest part of my journey over the past few years has been coping with the psychological impact of gluten. Going gluten free had a profoundly positive effect on my health, but putting together the jigsaw puzzle of symptoms also made me realise I'd been living in an advanced and damaging state of denial for many, many years.  

It's no exaggeration to state that an intolerance I was unaware of has shaped my life and the person that I am today, so much so that at times it's difficult to know where the condition ends and I begin.

I had a happy and largely illness free childhood. I didn't like milk or dairy products of any kind from as early as I can remember, but otherwise my diet and digestion was normal.  In my early teens I developed asthma and, I now understand,  the initial signs of a compromised immune system as I suffered frequent chest infections, but these seemed unimportant amidst the usual chaos of teenage years. I also had an appendectomy following stomach pains which proved superfluous. At 19 a horrible bout of shingles prompted  jokes about my having an old mans illness as well as cramping my style for the first weeks back at university.

At around that time I began to feel  'something was wrong'. I'd started to experience intense left sided chest pains. After a frightening diagnostic journey my heart was ruled as healthy. There should've been a medical follow up as to what was causing the chest pains, but it didn't happen and I was simply told to try not to worry. Given that each incidence felt like a heart attack, that wasn't easy to do. At each occurrence I thought that I might die. On one occasion I went to a hospital at 4 in the morning for an ecg, convinced I'd just experienced a heart attack.

I started to experience problems with my sight. I would see grey blotches in my vision, sometimes I could only see from a small portion of my eye, as if I was in a grey tunnel. These would last for a couple of minutes or more, I wondered as it happened if the change would be permanent this time. 

I found that I got dizzy sometimes when I stood up, one time crashing to the floor at a friends house. I would frequently experience palpitations, skipped heartbeats. I would sweat profusely, become weak and irritable. I drank water continually, colleagues wondered if I was diabetic. I did learn that I had an odd relationship with food and sugar, believing myself to be either hypoglycaemic or pre diabetic, although tests didn't show this.  I was sent home from work with blood pressure on another occasion, but nothing showed up in a subsequent visit to the doctor.

When I was 21 I ruptured a disk in my back and experienced crippling lower back pain and transferred sciatic nerve pain in my leg. I was to go on to experience this pain to a greater or lesser degree for the next 20 years.  Of course i saw physiotherapists, doctors etc, but never achieved sustained relief. I spent years in pain when I moved. 

I also began to see issues with my skin. A persistent rash on my chest and occasionally sores on my crotch. My scalp became very dry and scaly, with persistent terrible dandruff which resisted topical treatments. I would get large red sores on the back of my neck and scalp. I was prone to acne and if I looked closely at the area around my nose there was a large amount of white pus beneath the skin.  
I began to experience bloating and painful stomach cramps. It felt like someone was reaching into my stomach and twisting my gut. I had other stomach digestion issues too and I then developed joint pain in my fingers.  

At this time a more assertive person would've been banging down the door of the hospital looking for answers, but these symptoms were accompanied by the worst aspect of my intolerance, a pervasive depression, anxiety and brain fog that sapped my will and made it hard to function effectively.  It felt as if I was wearing an astronauts helmet or seeing the world through the glass screen that separates a bank teller from their customers.

Eventually desperation saw me overcome the stereotypical Western male reluctance to admit weakness, particularly in regards to mental health issues. I sought medical help and was soon prescribed the first of many anti depressants, from the mind numbing tri cyclic amitriptylene to the newer fashionable re-uptake inhibitors. I had them all, to precious little effect. There isn't much in the way of talking therapies available here on our nhs, but I did get some cognitive behavioral therapy and a short course of counselling. I would fluctuate between truly depressed and merely unhappy, but nothing ever seemed to really work.

Although I never connected each symptom I remember asking my doctor to test my blood rather than give me more anti depressants, because I was convinced there was something physically wrong with me. He did give me a blood test but I don't know what he tested for, I was simply told the results were OK.

I used to hate going to the doctors, convinced they would see me as a malingerer or hypochondriac. Perhaps they did. Certainly for someone who is comfortable with words I found it hard to articulate this constant feeling of malaise and hopelessness that permeated my existence. I considered asking for electro convulsive therapy after reading that it had some success on recurrent depression.

The combination of these symptoms was devastating. Obviously the pain and discomfort affected what I could, or wished to do. More pernicious by far was the internal impact. As my self esteem plummeted a belief took hold that I wouldn't live a long life and should therefore try to live for the day. This became a deeply held internal truth that I would rarely if ever discuss, but which shaped my actions and expectations. I avoided relationships, walked away from someone I loved dearly, became more of a loner. I couldn't pursue a family if I wouldn't be around to take care of them after all. So I never allowed anyone to get too close and moved frequently. 

I began to see myself through the physical and mental ailments as someone who had been unlucky in the life lottery and had a brain that couldn't be happy. I just had to make the best of a bad lot. Life wasn't to be enjoyed but endured. I drifted through it, unfulfilled and unhappy, but wholly ignorant of a connection between one symptom and another. 

I lived a solitary life, too exhausted physically and mentally to do much at evenings or weekends, but ostensibly healthy aside from the frequent chest infections I suffered from. I seemed to have less energy than others, less appetite for life, but I never found a way to articulate this or to seek out what if anything might be the cause.

Alcohol helped in some ways to dull the anxiety, I enjoyed a drink, but when I drank to excess as I often did, my hangovers would be savage. An awful fuzziness, vomiting, and stomach issues were commonplace. 

This was me on gluten. The funny thing is from outside no one would really have known there was much wrong. Aside from my scalp I showed few outward symptoms. I travelled the world, lived and worked overseas, worked successfully enough in exciting industries. Luckily I was bright and articulate enough to cover up the brain fog and confusion during my working day. I could pass it off as absent mindedness, when I was actually having to think through the astronauts helmet and each day fight against the pervading sense of anxiety, hopelessness and confusion. 

In my 30's I got some measure of relief. I read a book called 'potatoes not Prozac' which linked diet to mental health.  This was the first time I'd heard someone link mental health and diet. Following the suggestions within I started a food diary, changed my diet and observed my mood improving and felt better.  I decided sugar may be the culprit and took steps to eradicate as much as I could from my diet.  My other issues didn't go away, but my mood had lifted and knowing I had something positive I could do to affect it helped.  Life wasn't great but it did become more tolerable. I might not feel well but I could operate, in 5 years I only had 1 day absence through illness.

At 40 the wheels fell off the wagon. I was in a new, challenging job, working very long hours, but unable to focus and feeling worse by the day. I had a continual feeling of anxiety and constantly felt run down. Finally I came to a crisis. I left the job and found myself almost unable to move.  The brain fog was worse than ever, I had a permanent flu and I just felt so ill.  For a month or more I barely left my room.
The thought of more anti depressants filled me with despair. I returned to the diet diary which had previously helped.  By now I had read more about diet and health and realised that sugar alone couldn't account for how I felt. Given how poorly I felt I decided instead of simply following the low sugar diet I would also remove the wholewheat bread and gluten and go 'paleo'.  For days I noted my food intake and feelings, by day 3 I had the closest that I'll likely come to a revelation. I experienced a great surge of energy and my mood lifted. I left the house and walked through the park feeling almost euphoric.

In the weeks that followed my mood and energy levels improved dramatically. What I didn't account for was that things like the back pain, which I attributed to an old injury, would also clear up. Vision, breathing, digestion, all improved and I felt decades younger As I began to read more on the subject, including on this forum, I came to understand that coeliac could explain my symptoms. .

Discovering that so many different conditions I'd been living with were connected was a massive shock.  Learning that so much misery could've been avoided with a simple diet change was, and is, difficult to accept. 

Having gone gluten free I underwent a gluten challenge in pursuit of a diagnosis. In the end I was diagnosed as non celiac gluten intolerant as detailed in this thread:

https://www.celiac.com/gluten-free/topic/107134-advice-requested-now-gluten-free-but-no-diagnosis/

Today, gluten free my health is much improved. However, far from plunging headfirst into life I now find myself hanging back. I'm not working at present, have largely withdrawn from my friends and I now live a very solitary life. 

Of course in some part this is due to the diet. I can no longer be spontaneous in what I do. Meals out with friends or at parties are more something to dread than enjoy so I avoid them. I don't want to bring my own food or explain once again why I'm not eating and I don't enjoy quizzing the waitress in restaurants or scouring the ingredients labels of sauce bottles or snacks. Worrying about contamination ruins the experience. Easier not to go.

Having jettisoned gluten and then dairy to address the skin issues,  I also decided to give up alcohol, a big part of my and my peers social life, which has further distanced me from my friends. This was despite my discovering that hangovers are a comparative breeze once gluten has been eliminated!

Although I enjoyed wine and cider after going gluten free, I decided that alcohol was one more tax on an already overloaded system and that I needed to keep my wits about me. I also knew that alcohol had been an unhealthy mechanism for me to escape the sense of anxiety I lived with. I used to binge drink which was a bad habit to continue. So I'm now 18 months on the wagon and although I miss the social aspect on the whole think I'm better off there. Undoubtedly these changes have made it more difficult to socialise or to feel truly a part of mainstream society.

However, the diet or drink isn't the real reason. Like Robinson Crusoe in the story above, it's the realisation of what I've needlessly lived with for all those years which is harder to deal with than any inconvenience or food fears.  I found the realisation of my condition to be a deeply traumatic event and have struggled to deal with the after effects. I think I've been in an ongoing grieving process for the person I was before the depression and other effects took root and changed my life.

I revisit all the chances missed, opportunities forgone. Relationships which I walked away from. Decades spent trapped in a fog of anxiety, depression and pain. 'Knowing' that I was likely destined for an early grave saw me live my life simply to cause the least pain to others. To try and ensure that family and friends didn't worry too much. 

Now I find I've lived longer than I ever thought I would, but only to discover that a few simple changes to my diet would have avoided so much misery and heartache. I look around at my peers with families of their own and wish for a time machine or a chance to send just one word 'gluten' back through the lost years to my younger self!

It was the size and scale of this realisation which has left me so lost. Undergoing what I can only describe as an identity crisis.  I realised I had spent so long internalising the impact of this intolerance that I became someone quite different when I finally figured it out. 

Today I don't feel as if I'm the person I was supposed to be. All that time trying to work around my condition or ignoring it has taken its toll. Where do the coping strategies end and the person begin? I've lived with that sense of isolation and anxiety so long that I no longer relate to the person I used to be before it set in. As ill and as miserable as I was, in some ways I envy the person I was before I learned the truth. 

This is a painful truth to encounter and frankly I've not been successful in confronting this and moving on from it. Now gluten, dairy and alcohol free, I'm physically healthier than I have been in years but I still find my life is more about endurance than enjoyment. The brain fog and anxiety has lifted, but a deeper depression and hollowness remains.

Now middle aged with my prime years spent I fear it's too late to regain the path which I lost 20 or more years ago and, at least for now, real happiness is yet to come. I'm undergoing counselling which is helping, but I've yet to find my way forward. My self esteem is eroded from years of illness and denial, followed by a realisation that the answer was so simple and under my nose the entire time. How could I have been so blind? Why wasn't I more assertive in looking for an answer?  I think of those past lost years as if I was serving a sentence for a crime I didn't commit, only to find on release that I'm institutionalised beyond repair.  Objectively I know that in comparison to many I'm in a very lucky and privilege position. Like Crusoe, I finally found my boat and left intolerance island, but today I feel so changed by my time there that  I worry my escape came too late after all.

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many of us know exactly how you feel.   for twenty five years i was treated for many of the symptoms, as were you, but never presented the idea that all these things were related (and simply treated by the removal of the evil gluten) but, now, you have a new normal - do you think you are done evolving?  you mustn't treat your SURVIVAL time (hey, you did it!!) pre diagnosis as wasted or lost time.  i did that for quite a long time after my dx - i was angry, i was lost, i was singled out - why didn't these doctors do their job??!!  but, i got a boost of, idk, pride?  power?  in the realization that i worked full time, raised 4 kids, pretty much by myself (husband is otr trucker) while being killed and tormented by an unknown glutenous villian!!  YAY ME!!!!!  i'm freaking tough, you're damb skippy i am!!!  'f' crusoe's boat, i swam the ocean with a cinder block tied to my ankle and i made it!!!   a boat would've been easier...  but, hey, when did i ever do anything other than the hard way lolz.  

also, consider that you are still recovering.  i figure there was a long time things were getting damaged - it'll take some time to get everything back to good.   

i like your analogy, and it makes sense, but do not be mournful.  it seems you are a deep thinker - find some things that make you 'simply' happy and go from there.  i think once we quit gluten, certainly our brain must do some re-wiring :)  i think we just get to know ourselves a little better when we are not constantly REacting because we must for our symptoms.

lastly, i consider myself extremely lucky to be able to control my body (yayy!!) without always wondering why i feel so terrible all the time.  there are good days and bad days, still, but think of all the poor souls who may never get a diagnosis or even get a clue celiac even exists (i know *i* never heard of it until i had it - the closely kept secret of the medical profession because they can't fix it with a pill $$)  i feel sorry for those who will never give up the bread, even when they have a firm dx.  sad.  i worry about my blood relatives who feel crummy all the time, but won't even consider changing their diet.  

so, take heart!  for us:  every day's a picnic (literally.  because we hafta bring our food everywhere, lolz)  welcome to the forum   :D 

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That's some good advice. Thank you :)

It's helpful to think of continuing to recover and you are spot on in that I feel like I have to get to know myself again free of the mental cloud and constant ailments. 

I tend towards the introspective and looking at things negatively. I know I need to change my perspective, sometimes knowing and doing aren't the same thing. One of the reasons I wrote and wrote and wrote that post above was to try and put down everything so I could begin to come to terms and move on. I already feel a little better for having done so, because I can begin to see some of the circularity and negativity in my thinking.  

You are indeed tough and kudos for raising your family amidst the ravages of gluten. I walked away from the chance of a family through the depression and uncertainty that I was going through, thinking I wouldn't make a good dad. Over the years I've regretted that often, I think it was one more example of faulty decision making, partly clouded through the intolerance, but also indicative of some issues I need to sort out even after removing the gluten from my life...

Oh and I love the picnic line. I may have to steal that :P

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Hi JMG,

Your post was long but fun to read.  For me anyway.  So thanks for taking time to describe your situation!

The forum used to have a signature line  under each posters name.  Often people would list their food intolerances in their signature.  Which would be interesting to read for new people.  Myself I have quite a few IMHO.  I think soy is one of the most troublesome because I believe it leads to other intolerances.  But many forum members have developed additional food intolerances beyond gluten.  If I was you, I 'd give up soy now.  Hint - hint.

Have you been tested for vitamin/mineral levels?  My vitamin D level is still pretty low after 9 years and taking 10,000 IU a week.  Although I suspect my particular brand of vitamin D may be junk at this point.  The reason I mention it is that since I have started working on building up my vitamin D levels I have felt better mentally and had some reduction of joint pain.  So it might be good to get your levels checked.

Believe it or not you are still early in the recovery process and may still experience quite a bit more improvement, including both health-wise and emotionally.

I don't think there are very many people alive who don't have regrets over some past events in their lives.  And the ones that may exist are probably insufferably irritating! :)  I think people who go through stressful events in their lives are probably a little more rounded than people who are never sick a day in their life.  Being just like other people (normal) is not all its cracked up to be IMHO.  Yeah, that's the ticket, being normal is not normal!

I just wonder if your doctor ever tested you for (DH) dermatitis herpetiformis?  That's a skin rash associated with celiac disease.  If you have DH, you have celiac disease.

Now, where'd I leave that canoe...

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  Your post was long but fun to read.  For me anyway.  So thanks for taking time to describe your situation!

Thank you for getting through it!  I'm a little embarrassed frankly by the amount I wrote. I knew it was self indulgent, but a lot of it I'd repressed and never really discussed with anyone, so I needed to get it out all in one place for my own peace of mind. They're some of the pieces of the 'jigsaw puzzle' which I started to put together as I realised not only that food might be a factor in not one health issue but a multitude of other things.

I'm also very aware that many others here have it far tougher and have coped far better, which is a chastening thought.  

  

 

I think soy is one of the most troublesome because I believe it leads to other intolerances.  But many forum members have developed additional food intolerances beyond gluten.  If I was you, I 'd give up soy now.  Hint - hint.

I don't have much soy aside from the occasional latte at a starbucks or similar. I have a taste for coconut milk which I think is rice base

 At the moment my major vice is sugar, I have a large drawer full of non gluten chocolate, biscuits and cake. Some of them have gluten-free oats, which I seem to be ok with, because most of those symptoms listed above are either resolved or vastly improved. I also have a little gluten-free bread now and some other gluten-free processed foods which I seem to be ok with. I do find myself thinking that I should get rid off all the inflammatory foods and just eat as clean as possible, I think I'd probably feel better if I did, but its difficult to reach that level of discipline when feeling down and having already given up so much. That bar of dark chocolate sometimes feels like all I've got!

 

 

Have you been tested for vitamin/mineral levels?  My vitamin D level is still pretty low after 9 years and taking 10,000 IU a week.  Although I suspect my particular brand of vitamin D may be junk at this point.  The reason I mention it is that since I have started working on building up my vitamin D levels I have felt better mentally and had some reduction of joint pain.  So it might be good to get your levels checked.

I haven't had those checked, or at least if my doctor has done this he's not mentioned it to me. I think if I'd tested positive for coealiac I may have had more testing. I have noticed that when I stop taking vitamin supplements I can get more tired and feel run down, but you're right it would be good to know for certain and I may see if I could get those levels checked independently.   

 

 

Believe it or not you are still early in the recovery process and may still experience quite a bit more improvement, including both health-wise and emotionally.

I don't think there are very many people alive who don't have regrets over some past events in their lives.  And the ones that may exist are probably insufferably irritating! :)  I think people who go through stressful events in their lives are probably a little more rounded than people who are never sick a day in their life.  Being just like other people (normal) is not all its cracked up to be IMHO.  Yeah, that's the ticket, being normal is not normal!

It's a good thought that I have more recovering ahead of me. Physically I'm mostly ok now, very much more in tune and aware of my body than I was before. One problem I had before was that I was almost wilfully ignoring what my body was telling me, now I'm trying to listen. I think exercise may be helpful too, I've fallen out of that habit.  

Finally, you're right about everyone having regrets. Because my perspective is skewed through depression I tend to forget that. I have to be careful not to blame everything that went wrong for me in the past years on the intolerance because I'm responsible for choices I made and things I did and didn't do no matter how much the illness was affecting me. 

One thing I think this has done is teach me greater tolerance and understanding of others. I think I could be an insufferably judgmental dickhead at times in my arrogant youth. Now I have a greater perspective and empathy through my own experience and I cringe sometimes when I see others acting in the thoughtless way I once did. 

Thanks once again for your kind comments. :)

 

 

 

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JMG,

I am newly diagnosed. I can't thank you enough for taking the time to post this. I am experiencing the very same anger and sadness and loss at the DECADES I wish I had known. I have cried thinking about how different my life might have been, how different my children's lives might be. I too have no idea who I really am or who I might have been. I'm both glad to have an answer and at the same time angry to realize that the boat was there on the island with me all those years and I just didn't explore enough to find it.

Thanks so much! I'm sorry we are both on this journey but I'm glad to find that I'm really not completely alone.

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JMG,

I am newly diagnosed. I can't thank you enough for taking the time to post this. I am experiencing the very same anger and sadness and loss at the DECADES I wish I had known. I have cried thinking about how different my life might have been, how different my children's lives might be. I too have no idea who I really am or who I might have been. I'm both glad to have an answer and at the same time angry to realize that the boat was there on the island with me all those years and I just didn't explore enough to find it.

Thanks so much! I'm sorry we are both on this journey but I'm glad to find that I'm really not completely alone.

It's funny, I'd just read your post, recognised so many similar experiences and replied and I almost included a link to this one, but thought, nah! the poor girl's got enough on her plate without reading all that :P

I was and remain a little embarrassed about penning such a rant, particularly as many on these boards have it far worse. However it was helpful for me to write all this, I did feel as if putting it all down in such detail may be helpful in moving on from it, and perhaps it has.

That said, the best thing I could read is that it was helpful to someone else on a similar journey. The members here have helped me more than they can know, so any chance to put a little back is (gluten-free) manna from heaven.  

Thank you for your kind reply :)

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