If you have multiple health conditions, or if you have to eat little and often, or if you have digestive complaints, or if you have a condition which is little understood....well, me too.
Since I was 15 years old I have excluded foods from my diet. Now 21, the majority of these foods match the recommended exclusion foods in many diets for various reasons. Coincidence? Maybe. However, it tells me that I've been on the right track.
The beauty of a condition like this is that there are no tests to tell you what to eat or not eat. No allergy tests. No obvious, public symptoms. In fact the most obvious symptom I have is gradual regurgitation (small amounts and not sick) of meals or liquids which have been eaten poorly or don't work with me. What this means is that over the years I have discovered for myself what foods my gut can digest and what foods it can't. I'm not a nutritionist, but through all of this, I might as well be.
Now I'm trying to set up a website to reach my aims of finding a stable pain free diet, and not having to think excessively about food plans. Essentially, I want to be free.
This is what I mean when I talk about 'Freedom Eating.' The Freedom Eating site should be a place where people on any stage of the journey to health through diet -- whether they are just starting out and researching; tweaking a diet to match their personal situation; finding variety in meal plans; wanting to share successes or struggles; or looking to spend less time on their health -- can go to learn, use tools, and make personalised meal plans based not on what they're told to eat, but on what they have learnt about how their body works. They will be able to bounce off theories on how they should eat and add their food combinations, their snack numbers and timings, and their amount of ingredients in a meal.
Some of you may remember a previous post on this same topic. It's been agreed that I re-post due to misunderstandings.
I think this is exactly what we need! We need a one stop "shop" to help us on our way with all things health related, or in your case, diet. It's a mamouth task but maybe we can help....
This is superb. However, for all those poor unfortunates who have had a massive run-in with levo and put on stacks of weight - how will this plan meet their needs? I do believe that levo decreases the action of leptin (essential for maintaining fat balance) which is why there is a weight gain (or fat deposits) of any kind in the first place.
Will there be a plan for those starting out that they can follow so that weight gain does not take over their lives. This would be great.
Okay, levo-wise. I definitely plan to have health pages/sections for people who are approaching from the side of thyroid disease. There will also be useful links, and a lot of the diet theories useful to those with thyroid conditions will be found in the Forum, e.g. The Perfect Health Diet, the Thyroid Health Diet, and Chris Kresser's articles are both really useful for people in our situation. Using the tools, people will be able to select advice + theories from diets like these and then tweak them to their own situation.
I think few people have a decent, straight to the goal journey with levo. I was diagnosed late like most, with a TSH of 44 or 46, reacted really quickly to the meds for 6 months...and then went straight down. In the last four years I've only been euthyroid a couple of times. Thyroid + diet are of course interconnected, but if your diet is on the right track for supporting intake of your meds then you can only do your best while you try and find the right dose.
At the end of the day a simple Low allergen diet and self motivation and self discipline is necessary. There are NO DIETS that work....it is a LIFESTYLE We are all unique and as such we will all find many unique facets to what does and doesn't suit us!!!
I have just lost 7lbs in 2 months by cutting out foods that do not suit my body....no one was more surprised than me to find how sensitive I am..... I am clearly seeing that when I accidentally eat foods that currently do not work for me I gain weight JUST LIKE THAT!!!! Within 24 hours of clean eating the weight is GONE!!!!
Have to say I have NEVER experienced your regurgitation of food......merely lower abdominal bloating and a feeling of heaviness and dirty in my stomach and abdomen.
I do think there is a lot we can share and make a core program but still much is individual.
This is contentious BUT if people really want to get well they will find the effort and energy to take things in their own hands.....with the support of many people around them this makes the path easier.....If we have been unwell for some time waiting for someone else to 'FIX' us is going to be a VERY LONG WAIT!!!!!!
I agree with what you have posted. I am not sure if you have understood my idea or not. The purpose is to allow people who are reaching for the same aim (to be symptom and free, and also thought/planning free) to do this with relative ease. The tools, database, forum, etc, as part of the site, will allow people to individualise diets to suit their personal needs. Those of us who do have to experiment with our diets in order to find health already do take things into our own hands. The tools on the site should provide us with ways to do this. How about a database which allows you to enter the foods you can eat, along with info surrounding when, how, and with what you can eat those foods, providing you with a meal plan based on your own experiences?
Freedom Eating takes note of everything that you have said above - that there is no lone diet which works, that people want to take their health into their own hands and have control, and that it's nice to have a community doing the same thing. Freedom Eating is not a program. It's more like an ideal many of us want to seek. The theory is 'when the rules don't work for you, it's time to make up your own rules' (My head photo on the Facebook page: facebook.com/freedomeating). Call us idealistic, but we shall be called Freedom Eaters
I can understand what you are saying but this is really not as simple as somehow finding the energy. When you have been ill for a long time, 40, years, and are getting older, finding the strength is not easy. I have a long term auto immune condition with low thyroid and adrenal function and have tried to sort my health out as much as I can. I have only recently found this site and am too tired sometimes to even read the posts, never mind reply or research my condition. We should be able to get help from the medical profession. I have gone down the private route but have run out of money and am a single parent to two children with autism. Having kept away from Drs for years, a return of my eye disease, linked to my Rheumatoid arthritis, brought me back into their clutches where I was poisoned with generic chemo, statins, alendronic acid etc. They nearly killed me. One of the worst effects has been chemo brain and cognitive decline, all this on top of thyroid problems!! I am trying to stay alive at the moment, I have never felt so ill. Two years after stopping this medication I am still suffering side effects. So yes, I do want someone to help me, to just sort things out. I am fighting the most terrible depression at the moment, and can see no reason to carry on, but every day I get up and put one foot in front of the other, as I am sure other people do, but this is not a life.
With respect to you and your personal situation, I believe that the extent of an illness and how long you have been ill for is subjective. Although 40 years is a large number of years to be ill, people on this site and others feel may also say that they have been ill for far too long. 20 years for an undiagnosed thyroid condition, or 7 undiagnosed with a TSH 10x higher than it should have been (me). There are sites all over the web, organisations, charities (including Thyroid UK) which are campaigning for better care, diagnosis, and treatment of thyroid diseases and autoimmune conditions in general. On virtually every blog about autoimmune conditions the writers are saying the same thing. In our own way, we have all experienced side effects of meds, though of course to varying degrees. And the reason I'm approaching thyroid communities with the Freedom Eating idea is that almost all of us have multiple health conditions, of varying degrees of severity. I'm sorry to hear that you're struggling, and I think that most people on this site can relate to exhaustion, brain fog, etc - though not necessarily in the same way at all - but Freedom Eating is not about speaking directly to the medical profession. That's being done elsewhere.
What the site will help with though, is this:
The Forum, which will have a lot of info in it, aims to collect together info from those complex posts around the internet and put it in one place. In a simple Forum you will be able to see the theories on how we should eat, click on one, see what it's about, what the criticisms are, and what the spin-offs are. The Forum will also aim to invite people who tell us to eat those ways to explain why, and who, specifically, they think should eat those ways. Diet is one area in which (opinion here!) there doesn't seem to be a straight answer, and Freedom Eating is about making it easier to find the individual answer in less time.
My problem, and that of many others is that you end up being so exhausted, mentally, physically and emotionally by years of ill health, misdiagnosis, mistreatment and side effects of drugs etc, that it is hard to keep going and to keep trying different regimes to help your health.
I believe strongly that diet is implicated in many health conditions and this site of yours can only be good thing. We just need the energy to access and utilise the info.
Yep, this is true, and I understand, and part of the reason I'm going for the idea myself, and I've created the database, is because I've also been fed up of starting over and trying something new, or of the endless days I call 'reset days' where nothing works and I end up drawing out a new routine.
But that's what makes us all Freedom Eaters: we want to have to stop thinking about, planning, and spending excessive amounts of time and energy researching.
I hope to find simple, visual ways of conveying the info and how to use the tools when they're up. Hopefully that will help.
I truly feel for you and hear you...... Life is tough with 2 Children on the spectrum without your own illness. I have a very close friend with a 17year old on the spectrum, when diagnosed at 4 she did massive research and placed the child on a gluten, dairy, v low sugar and low salycilate (sp) diet and there may be more that was excluded. The teenager is doing very well and has done well since adopting the diet.
I wonder if diet is the key to your health also, it may be that you have the sensitivities that your children have but not so much that it was noticed.
It is so hard and I agree that our medics should help us to get well, but they DON'T unless we want all the 'Pharma' that has made you so poorly. Sadly most of us do not have the energy to play the games with them to get what we deserve and in the process it creates so much frustration, anger, despair, hopelessness and that awful feeling of abandonment. All of which are stress and emotional stress at that! Emotional stress is so debilitating for all of us with endocrine issues and especially for those of us with auto immune illness as this is not only the immune system compromised but also the nervous system.
It has taken me a very long time to grasp that information, in what ever form it is given, is absolutely useless to any of us unless we are able to take action.
We have to take the action for ourself, no one else can do it for us.....Yes they can support us, they can uplift us when the going gets tough, they can offer advce along the way....the bottom line is we want to have to change and actually make those changes.
I appreciate you are in a very difficult place and your energy is spent. However, you have found this forum now and there is a ton of knowledge, wisdom, experience, support and most of all LOVE.
I urge you to consider taking baby steps to bringing changes into your day to day life. With diet I would suggest removing dairy first as it shows results within a couple of days which is motivating......when comfortable with this take gluten and ideally wheat out of the diet.....this will make things less expensive as you will not be just buying gluten free and at the same time you will be reducing your intake of processed food.
Try and take 10 minutes for yourself every day and listen to some gentle relaxing music and focus on your breathing.....there are a few blogs I wrote early in the year about breathing should you wish to visit them. Here are the links.
Since the beginning of OctoberI have healed myself through diet, yes I was very fortunate to see a consultant in London privately, who also works mainstream, who totally 'gets' the link between thyroid and gut and in fact illness and the gut.
I found this consultant by reading every post on this site and asking questions sometimes through private messages. Had I not done my detective work I would still be going back to bed once even twice a day due to my lack of energy and overwhelming fatigue. Plus I would have continued going to my GP to be told 'well it is all so complicated' and this is no doubt how I would have ended my days.
On Wednesday I turned 59 and I feel at least 30 years younger, now that I am no longer poisoning myself......and yes now I am able to see quite quickly what doesn't work for me where as before I just felt dull and heavy all the time.
I hope with all my heart that this will help you to find that little chink of light to move very gently forward with baby steps......take one thing at a time so that you do not overwhelme your self any more than you already are. Feel free to message me anytime and post to receive the energy of the wonderful people on the site.
Thank you so much for your message, it was so lovely to hear from someone who has had similar experiences.
I have used diet since the late eighties to help my situation and that of my boys, who are now 23 and 21, and I believe that there is an absolutely fundamental link between illness and the gut. As a long term autoimmune patient I have all the signs of Crohn's and Coleiac disease and can therefore only eat a very limited diet. Anything with starch is also a no go for me which limits my options as well. I use a little dairy for my calcium intake and keep off wheat, soya, gluten etc.
The thing I have found most helpful is the use of divided doses of T3, at a much higher level than previously, and reducing my Armour thyroid, which is giving me much more energy. I have also managed to reduce my Hydrocortisone to 75mg per day.
As for emotional stress, where do I begin. No help of any type from my ex-husband, my best friend, a solicitor, stole my money on the sale of our business, fighting for special education for both sons, house fire which pumped out toxic smoke meaning that we have lost all our possessions, and I mean everything, temporary accommodation for 4 years while I fought loss adjusters and Insurance company, then having to move into new rented property with one weeks notice, selling old house, not safe to live in, buying new property just before exchange found it had flooded and could not get insurance without spending £12,000, had terminated rental contract and could not renew so had to move again to new rented property. I have now found a bungalow I'm trying to buy, but am still living amongst boxes and in chaos with our few possessions. So stress, emotional or otherwise has been unbelievable which is what brought my eye disease back. This has all been going on for the last 16 years or so!!
It is all I can do to put one foot in front of the other. Some days I am so mentally, emotionally and physically exhausted I can't even read the posts on here. But this site has been a real help. I suppose what I really want is someone to come and rescue me for a while, but as yet that has not happened, ha ha ha.
Sorry to have gone on, but unless you have some idea of what I have gone through it is impossible to understand where I am currently.
Let's hope that finding this site has been the start of a more positive phase in your life.......you have had an intensely tough time, my heart goes out to you.
I look forward to hearing that you are moving into your bungalow and that your health is improving. I award you a Gold medal for Perserverence....
Sue, thank you for your kind words, they really are much appreciated. This site is wonderful, I wish I had found it sooner but I was busy looking at ME sites, and for the last two years I have been too ill and brain fogged to look at anything at all. Thank you to everyone on here.
Perhaps, those who are starting out on the thyroid meds journey as well as those who are well into it and have been suffering for years ---should undertake an intolerance test with regard to foods etc to start with. Yes, I know, more money however, having had one myself years ago it really did help me. It not only helped by naming foods that were really not good, but also those to watch closely in case. Cutting out this and then that is very time consuming and frustration - this is one thing we none of us need at all -- and it can take a very long time . Time would be of the essence if we are trying to accomplish this freedom as quickly as we can.
PS doing intolerance tests will kick start the food list --- it could be that there are certain foods which apply across the board not good for thyroid sufferers no matter where they are in their journey. Just a thought.
Intolerance tests are definitely something which I can put as recommended on the site, or as an option. I think that some diets e.g. The Thyroid Diet, Perfect Health Diet, along with Chris Kresser's info on thyroid disease do provide a list of recommended 'exclusion' foods, along with the really necessary foods we should be eating.
For someone like me, with a stomach condition which can be diagnosed but there are only two treatments available and both have side effects, plus the only real thing known about it is this: 'it causes a lot of symptoms,' intolerance tests probably wouldn't shed that much light on things, as sometimes it's just a matter of how my gut processes certain foods and how it can't take complexity. On top of that, I started excluding foods before I was even diagnosed with thyroid disease, let alone before I had my stomach condition diagnosed. I stopped when I tried the treatments, only to find that the medical profession just doesn't know enough about this and the only way I was going to work it out was, as my endocrinologist suggested, to 'experiment'. For people in those kind of situations, where there doesn't seem to be an obvious, on-paper answer except perhaps a detail-less diagnosis, the tools which will be on the Freedom Eating site aim to get right to the point and save mucking around. But this is not to say that intolerant tests aren't useful, and I think that this is something I can add to health/help/'starting from ...' pages. When it comes to the tool for creating a 'guidebook' of diet rules, people who've had these tests can just add rules for what not to eat, just as I would really.
Yes it does make sense. What people have to remember is that one size of anything does not fit all. We are all so different. This is NOT a quick fix which, let's face it, is what we all want. In general if people eat a good healthy diet this has to be a good start to aid recovery. Unfortunately even with a healthy diet some foods are still best best avoided which makes even more frustrating especially when some of those foods are necessary for optimum health. ..........
This is the reason I've tweaked the Paleo diet to my own needs. The list of exclusion foods on Paleo, bar two or three, matched the foods I had excluded over the years, so I figured it had to be the right diet for me. It gets rid of all the modern rubbish and fills you up with foods of nutritional value. Before you even consider benefits to digestion and health conditions, that alone has to be a good thing.
I think some people might find Chris Kresser's Personal Paleo Code program interesting. You do have to pay for it but you get a lot of info and you get your money back at the end if you're not satisfied. It wasn't completely helpful to me as I was already somewhere in-between his 'reset', 'reintroduce', and 'refine' stages, plus where he recommends further excluding foods if you have condition B or C, I found this contradictory. Still, it's worth a look. The info is really useful, and his philosophy is exactly what we're talking about here: 'you were not meant to follow someone else's diet'.
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