Truly #Gluten Free #ME Journey

I had a lovely photo from Helen today showing her out with her son and niece sledging. Not unusual given the snow you might think. But this is a lady who was hardly standing up for long when I first met her almost a year ago. Needless to say, I had a big grin on my face when I saw it.

Fun in the snow..

Helen has worked very hard and consistently done everything I have asked of her in our bid to sort out her chronic fatigue, which stemmed mainly from adrenal and thyroid problems. I asked Helen to give us a view of her journey and her thoughts as a TGF person so others can get a bit of a view what it’s like. Here is her reply:

Before TGF, I was living life but like a car in the slow lane.

Life was hectic and with normal demands and every day  I found just enough energy to get the day over and done with.  After a few years of this though, there was a decline in health which ended up with a chronic fatigue and that’s when you know your body simply can’t take anymore.

It is hard to think straight when you are that poorly, but you do know deep inside that something is at the root of the problem.  I made the decision to find out what was happening, and with Micki’s help we determined that gluten intolerance had triggered off a chain of events, for example, malabsorption, leaky gut and thyroid issues.

There was no big decision for me, I immediately came off all grains and went TGF.  I have to be honest, I experienced withdrawal symptoms for a good few weeks which were dreadful.   Over the next few months I was able to bring my body back to a point where it could be assessed and treated.  With time, supplements and patience my body has and still is readjusting.  It is not my intention to sound defeatist here, but don’t expect an overnight miracle.

It’s been just under a year since I started this journey and along the way I have learned so much about my body and why it was struggling.  It probably took a good 25 years for my body to give up, so months or a year or even two is not a long time to restore it.  I am still work in progress but being able to do the housework, cooking and being there for my family is enough reward.  Before TGF I was a 10/10, and now I have days where it is a 3/10.

You have to learn to live again if you have been poorly for some time.  It’s important to be realistic and not ‘pressure’ yourself to recover.  Taking small steps and always listening to your body and respecting it are all vital.  Try and focus on the here and now and just appreciate what your body is trying to do for you.

A couple of hours up and down the hill and sledging with my family was just wonderful and helps you mentally on the journey back to health.   When you have a ‘down’ day think back to that last achievement and it’ll pick you up.

Wise words, indeed. We have a way to go yet, mainly, in my view, to repair Helen’s thyroid function. That will take time and has not been helped by gluten-induced inflammation, which is going to take time to lower, malabsorption – Helen’s gluten gene test showed several coeliac genes – and thyroxine containing allergens like lactose and maize (bane of my life as a practitioner as the person needs their meds but you equally know they are perpetuating the problem half the time)!

I am certain Helen will get there. She had already spent a great deal of time trying to get her adrenal and thyroid output up with other health professionals long before I met her. Identifying the gluten and malabsorption issues was the real key in her case. And note that, although her gene results showed coeliac genes, she was not progressing well enough off the traditional gluten grains and made much better progress when we removed all grains. Also, her previous coeliac traditional tests had proved negative. I say all this to remind you that it is always worth considering a gluten problem if you are not responding to treatment as you should, even if your tests are negative.

Helen makes a good point about her general score. I always say to people if you can go from mostly 10 to mostly 3, that is a huge shift and may be as far as you can go. We may not ever get perfect, but we always have a bloomin’ good try!

Thanks for sharing with us, Helen, and may you have 0 one day!

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4 thoughts on “Truly #Gluten Free #ME Journey

  1. Helen – well done. I have been suffering from an autoimmune reactive arthritis for about 9 months. Only 3 months ago I went gluten free (and dairy, legumes, nightshades, red meat, etc.) and I have already got from 9/10 to 3/10 most days. I have been getting frustrated because I seem to have stopped at a 3 – your story made me realise I need to be more patient and need to constantly remember where I have come from. Thank you and good luck on your trip to a 0/10!!!!! XXX Kate

    • Thanks for that Helen. And well done you, so glad you are 3 now then. Interestingly, I am in the middle of developing a Barrier Diet which removes pretty much any nasties as in your diet, but including all grains because some people with gluten sensitivity have so many other intolerances going on and more than the gluten has to come out at least temporarily to allow healing. My advice to help you would be to make sure you are avoiding all grains, including hidden to propel yourself forward again. Good luck. Keep in touch and let us know how you’re doing.

  2. Hi Kate,

    I think that the frustration is normal when in a recovery mode. I think the problem is the brain and body work at different speeds ! You want to do more but your body tells you no !!!! I think to get to a 3 is fantastic. Along the journey there seems to be a lot of unraveling and learning and sometimes re-addressing. Keeping positive is vital ! Micki, some positivity seminars please !!!! As if she sits twiddling her fingers all day………………………….he he x

    Helen x

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