I often think this, both of myself and all of you.
There is a real tendency to research everything to the nth degree when we have a chronic illness, trying desperately to find that underlying key to what’s going on. I certainly have spent thousands of hours poring over websites, summits, books etc trying to find clues, then pursuing them relentlessly. Totally understandable.
This has been in my mind more and more recently as I have realised that I think I have found out more than enough about the impact of grains and conditions like NCGS on us all. I don’t think there is much left to say and I am just now keeping my ears and eyes open for any new bits of research which could give us useful and practical additional information or are real game-changers, if you know what I mean?
There is a lot now being written about gluten related disorders where there was very, very little when I started. Not a lot of it adds much more to what we already know I don’t think – what was in the Gluten Summit (free review here) and the Gluten Plan – pretty much sums it up and I will, of course, add more as I find it.
It’s been actually quite hard to pull away from researching and reading everything TGF-wise; I am a real research fiend when I get the bit between my teeth ;). I simply love the detective side of my job so I’ll now start pulling together all the stuff on healing I’ve been researching for the past two years too! I’m hoping to dovetail the Gluten Plan and some form of Healing Plan together into an all-encompassing GRD (gluten related disorders) programme for us all and then deliver it in different ways.
More writing and collating than research for a bit anyway. Oh dear. What a shame…
Anyway, interestingly, I see Eileen over at Phoenix Helix has been thinking along similar lines in her blog post – asking leading health peeps what they do instead of thinking about health all the time. It makes interesting reading.
When Does Pursuit of Health Become a Health Obsession?
Personally, I read complete trash and interior design magazines, stare at the horizon and walk by the sea! What do you do?
I found out about 18 months ago that I am homozygous for the Alzheimer’s gene (ApoE4), so my risk for this disease is very high, as is my risk for cardiovascular disease, including vascular dementia. So I spend a ton of time researching prevention strategies and engaging in information sharing within a community of fellow ApoE4 folks (at http://www.apoe4.info). There is much that is unknown in this arena, so I could be forever health obsessed.
It is clear to me I need to take breaks from my health obsessions and have more fun!
Knowing I’m gluten sensitive (I’m homozygous for HLA-DQ2 but went gluten free in 2006 before getting tested for celiac disease) has already greatly informed my efforts for preventing Alzheimer’s. Being grain free (and low carb) is one of my key strategies.
Thanks for all that you do. I look forward to new bits of research you find on gluten-related disorders and to your future writings on healing.
And I look forward to sharing anything I find Alysson. Well done on your researching then, prevention is FAR better than cure. What always worries me with genetic information is when people automatically assume they either have or will get the associated disease. It can cause a huge amount of unnecessary worry. Just because you have the gene present doesn’t mean you will get the disease – it has to be triggered – and I like your approach of making sure it isn’t :). Part of that strategy must surely include relaxing and not thinking about it too much – brain-speaking: what fires together, wires together – so not thinking about too much is part of the preventative strategy and I think people forget that. I certainly have at times!
Micki, thanks for your reply. I do need to think about Alzheimer’s less. It consumes too much of my time and energy, but I do relax every evening, take walks on the beach, meditate, and exercise.
However, I must admit that I was experiencing some cognitive impairment that would probably be considered subjective (so not mild cognitive impairment), but I was having problems with word recall. By using an approach developed by neurologist Dale Bredesen, MD, I have reversed that. The approach is multi-factorial and involves tackling many risk factors at once, taking many supplements, exercising, limiting carbs (even more than they were already limited), etc. So it’s a balancing act between knowing that I was experiencing problems and not worrying about the future. The vast majority of the time, I am confidant that I will never get Alzheimer’s or CVD because of my healthy lifestyle and preventative strategies. It took some time to get to this place, though!
If I hadn’t been obsessed by my health, I think I’d be dead by now. It went downhill at age 50 and I’ve been managing it ever since. Doctors don’t have time for the details, that’s for sure. And at 75, I’m even more vigilant. Nope, if you lose your health, you’re nothing. It’s the foundation of life. Gluten problems are bad enough. Try getting chronic fatigue syndrome 25 years ago – people called it ‘yuppie flu’ and thought it was psychological. I was treated shockingly by my employer – the Health Departmen!!!!
Eek, Anna. It’s a fine balance isn’t it? Note I didn’t say don’t do some research as it is entirely necessary with our current medical system as you say, but know when to relax off. I think I forgot how!
It’s always good to see the humour in situations and I’ve been chuckling for years because at the panel who ‘judged’ me on my health, one doctor asked me in a treacly, patronising voice, ‘Do you miss your womb?’ In 1992! Oh, boy! I told him good riddance to it and he blinked in surprise and didn’t answer again.