Happy First Birthday Truly #GlutenFree!

Yes, I can’t quite believe it but the TrulyGlutenFree site is one year old today!

It’s only a weeny site so far, but then I have done hardly anything to get it out there yet. I like to think we get ‘quality’ visitors who have found the site because they really need help with gluten and grain sensitivity, rather than simple quantity! That said, I get well over 1000 visitors a week and since we started just under 30,000 unique visitors have hopefully found something they like.

I thought it might be good to look at what has happened during our first year; you can get lost in it all, can’t you, so it’s good to look back and see how far you’ve come sometimes.

When I started it, it was because I had stumbled on the fact that:

Many coeliacs are undiagnosed in my view because of the reliance on traditional tests which are not as accurate as we might like to think (including me).

I started searching for better testing and introduced full gluten gene testing to the UK rather than just DQ2 and DQ8, the traditional coeliac gene test.

Many coeliacs do not repair their villi even on a traditional coeliac diet, and consequently continue to suffer malabsorption problems, leading to chronic fatigue and all manner of nutrient-depletion related issues. Why? Could it really just be because they were still taking in gluten somehow? Of course, that will apply to some – and especially if we see that the FDA recently published a report that 1ppm gluten is enough to scupper healing in some coeliacs. I thought not in some cases, though. I was as strict as I possibly could be and was getting worse, not better. I also worried that the established links between coeliac disease and future disease risk would also remain present if the gluten did. That can’t be right.

I researched and discovered historically we treated coeliac disease with a grain free diet and broke the story in an article published by FoodsMatter that all grains contain some form of gluten, to which many non-healers could well be sensitive. I created a grain-free diet and wrote the TrulyGlutenFree ebook to give practical explanation and help to those who needed help. I started the recipe series and have written TrulyGlutenFree Breakfasts as that was the meal most people were having problems with. I have published loads of tips and recipes in the Food category.

But, how would coeliacs get their nutrient levels up?

I discovered the vast majority of supplements contained grain and other common allergens, whether labelled as containing them or not. I researched the problem, spent months and months quizzing manufacturers and produced Supplement Report 1 to explain the problem and give the first list of suitable products, then Supplement 2 to give two more lists and explain the problem of carageenan. 

Then, I realised it wasn’t just about coeliacs. What about all those people who suffer long-term chronic illnesses, many of which I discovered had a link to gluten’s ability to cause inflammation and auto-immune reactions? I noticed in-clinic a big link between gluten ingestion, gluten gene positive tests and those who suffered chronic adrenal and thyroid problems. Other problems also crop up time and again.

I have started to encourage gluten gene testing for those illnesses and will work over the next year to get that message out to sufferers of these illnesses in particular, starting with adrenal fatigue and hypothyroid. 

One of the illnesses that goes hand in hand with gluten sensitivity is multiple food and chemical sensitivity. We spend our lives avoiding more and more substances. That can’t be right either.

I have spent much time researching the processes of gluten damage in the body, tracking the barrier breakdown/zonulin link, how memory cells cause cross-reactions with similar-looking foods, looking at the two main pathogenic gluten pathways of inflammation and auto-immunity. I developed a unique treatment protocol and started using it in-clinic. It is constantly evolving and I am very close to a launching a TGF treatment protocol which will be used by multiple intolerance and gluten sensitivity sufferers in a bid to at least calm the inflammation, curb the risk of future auto-immunity and repair the body barriers. 

I have spent this first year learning, learning, learning, thinking, developing concepts and trying to piece the jigsaw together. Personally, I got significantly better – from feeling 10 most of the time down with crushing chronic fatigue I thought I had got rid of after giving up wheat and dairy years before – to an average 1-2 now, thank goodness (patients will know that scoring system!). Ok, it has come at the cost of a much more restricted diet and lifestyle when it comes to food, but so be it. I would rather be well. I have a way to go; I still can’t get in some of the supplements most of my patients take and I am hyper-sensitive to gluten which makes eating out and cross-contamination an absolute no-no. For now. I am determined to become less sensitive.

So, a great deal achieved this year, but a huge amount still to do. I have lots of plans for this coming year and am beavering away hard as usual. The biggie will be a self-help programme with everything you need to follow a trulygluten free diet, lifestyle and protocol to give you the best chance to get well. Don’t forget to to give me your help on this post here, by the way: What One Thing Would Help You Most?.

For now, enjoy the resources mentioned plus the 174 posts in 11 categories on this site.

And gimme some comments; one of my aims this year is that we start to share knowledge and experience, now we have some, and begin to support and help each other; some of you have already started to do that, which is fab, thank you.

Be part of the TrulyGlutenFree family. Here’s to Year 2….!

10 Replies to “Happy First Birthday Truly #GlutenFree!”

  1. HAPPY BIRTHDAY MICKI!!

    And congratulations on a fabulous site. I can find information here I can’t find anywhere else – more importantly it’s quality information I can trust.

    Keep up the good work. A forum where like minded people can communicate would be a huge bonus. When I was first diagnosed I would have given my right arm to be able to ‘talk’ to others who had been there and I’m sure that I’ve collected lots of information along the way which would be of benefit to others.

    Chrissie

    1. Thanks Chrissie, for your lovely comments and felicitations! I keep considering a forum but it takes such a lot of work to administer and moderate, plus people I have spoken to who have them suggest that comments are the way to go. That’s why I’m trying to encourage comments and discussion there. What do you reckon? Would that suffice, or do we really need a forum?

      1. I agree. Forums do have their problems. They need a lot of maintenance and can be a source of much mis-information that we can do without. From what I can see so far, it seems that the facility to comment is only available after you’ve posted a topic? And generally, comments are specific to that topic.

        If there was a way this facility could be expanded to include general discussion, it would be perfect. It may be that it simply needs a message from you to this effect?

  2. Happy birthday indeed – and what an amazing job you have done! Despite the billions spent on drug development and ‘medical research’ it is so often the original thinkers like you that drive knowledge froward. Keep up the good work! As though you wouldn’t…….

    1. Aw shucks. That’s very kind. And I will do. SO much more to learn and do, good job I love it! Thanks for your support, friendship and championing during this first year too; it means a lot.

  3. I know I’m a newcomer to the Grain sensitivity world. But without stumbling across your article ‘No pain No grain’ on foodsmatter.com then I would probably still be in the hands of Dr’s who thought I had IBS and depression. Finding you has given me hope for the future…………..
    Keep up the good work, the world is a better place for people like you.

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