Feeling Better on Gluten Free Diet But Are You Actually Healing?

A nice reminder arrived today in my inbox from Dr Osborne at the Gluten Free Society. He’s referencing a very old study (2009) but I recall it was one of the first studies I read that kicked off my foray into why many coeliacs don’t get better on a gluten free diet.

Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet.

You can read the whole study or just the abstract above, but essentially what they are saying is that it is pretty common for people to feel better and even get their blood markers and villi back to normal by going gluten free, but that their intestinal immune reaction is continuing. In other words, damage is still potentially being done.  Eek.

They conclude:

In summary, our study indicates that reversal to normality of small intestinal histology is rarely achieved in CD patients during prolonged and strict adherence to GFD and despite remission of symptoms.

In a majority of patients, normal villous architecture is restored, but intraepithelial lymphocytosis persists independently of a HLA gene dose-effect and of HP infection.

Studies on patients with type-1 refractory CD44 and on patients developing severe complications despite clinical improvement11 suggest a potential of persisting mucosal abnormalities for development of severe CD-related complications. 

Might it be cross-reactivity to the gliadin in other grains? I reckon it is very possible. Clearly, the immune system is still being activated by something.

Anyway, a reminder for you. Many people don’t stick to a GF diet ‘properly’ for lots of different reasons but it seems that even for those who do, it may not be enough. That’s why I started TrulyGlutenFree all that time ago!

Coeliacs Suffer Neurological and Mood Disorders Too: The Researchers Catch Up..

Ooh, we could have told them this about 6 years ago at least couldn’t we? However, it is nice to see published research backing up the fact that coeliac disease is not ‘just’ a gastrointestinal disorder; it affects us psychologically and neurologically too. And that’s to say nothing of the people who have NCGS (non coeliac gluten sensitivity). As the researchers say:

A gluten-free diet (GFD) could avoid cerebellar ataxia, epilepsy, neuropathies, migraine and mild cognitive impairment…. Common psychiatric symptoms in untreated CD adult patients include depression, apathy, anxiety, and irritability and schizophrenia is also common in untreated CD..

Have a read here of the abstract:

The progression of coeliac disease: its neurological and psychiatric implications.

One of the reasons I started this TGF stuff was the very fact that I kept seeing coeliacs on the traditional GF diet still having these kind of symptoms (including me: migraine, brain fog, restless legs etc). When you remove all sources of gluten, and not just gliadin, some get better. Simple as. When you also treat for autoimmune pathology and barrier hyper-permeability, even more do.

Just sayin’..

Source: Foodsmatter e-news.

If It’s Not Gluten Per Se, Might It Be the ATIs in Grains?

grain iconFascinating studies starting to come out about different non-gluten proteins possibly being (one of) the causes or at least exacerbators of gluten related disorders.

The latest suggests that ATIs (amylase-trypsin inhibitors) – the stuff we’ve known for yonks block effective absorption – may yet turn out to be a major cause of NCGS (non coeliac gluten sensitivity). It may not (just) be the gluten in other words.

They found the ATIs in wheat (and possibly other grains):

can lead to the development of inflammation in tissues beyond the gut, including the lymph nodes, kidneys, spleen and brain. Evidence suggests that ATIs can worsen the symptoms of rheumatoid arthritis, multiple sclerosis, asthma, lupus and non-alcoholic fatty liver disease, as well as inflammatory bowel disease….

…Further to inflaming chronic health conditions outside of the bowel, ATIs may contribute to the development on non-coeliac gluten sensitivity.

Interestingly, they also pointed out that these ATIs are present in commercial gluten products:

we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues..

Anyway, it’s good that we’ve actually got some studies going on (and being paid for!), but this is not exactly news. There have been many murmurings about ATI being the initial trigger for wheat sensitivity and coeliac disease for years. One interesting article I read was this one, written actually in 2014:

Celiac, Gluten and Trypsin Inhibitor

And this study was done in 2012:

Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4

They even end by saying:

Moreover, ATIs may fuel inflammation and immune reactions in other intestinal and nonintestinal immune disorders.

I feel the coming-on of a ‘gluten related disorders SYNDROME don’t you, where there are multiple factors and triggers causing an inflammatory and immunological reaction in the body? I would also not be surprised to find the same protein in the other grains has the same effect (it’s just that they’ve studied wheat here) and that they are cross-reactive, which could be a reason for why we need TGF (grain and dairy free) rather than traditional gluten free in NCGS sufferers and non-healing coeliacs.

The thick plottens…Have a read here of the report anyway:

New study links protein in wheat to the inflammation of chronic health conditions

Conclusion: lower/remove the inflammatory triggers, repair the barriers and support the immune system and health generally. See the Gluten Plan here.

‘Safe’ Gluten Foods In Question?

Interesting – this casts doubt on ‘safe’ samples of oats and other grains being within gluten ppm limits on testing. http://ow.ly/E2VN303ICGz.

In fact,  I remember sitting next to the owner of a major food testing lab who told me the very same thing years ago and explained how difficult the actual testing process is, so this does not surprise me at all!

Non-Coeliac Gluten Sensitives: Leaky Gut and Immune Response Confirmed

grain iconAn interesting new study just out looks at why people without the usual coeliac markers (like gliadin and transglutaminase antibodies) do in fact react to wheat and grains.

(By the way, I’m not even going to go into the fact that they are only looking for limited markers so miss most of them anyway, unlike the improved Cyrex 3 option; still not 100%, but FAR better.)

I know this doesn’t sound like news to us as we’ve been talking about the fact that non-coeliac gluten sensitivity involves a weakening of the gut barrier strength and allows systemic immune response for ages (see the Barrier Plan I wrote in 2011, for example, now the Gluten Plan!).

That said: it is always good to have a study confirm it for us – it makes it more likely to be accepted in mainstream medicine, and helps show us we are not going mad – even if docs couldn’t ‘see’ it before and told us we were imagining it. (Don’t set me off..).

Anyway, you can read the new study below. Effectively – markers for leaky gut found and systemic immune response leading to a reason why people consuming wheat and similar grains (not sure which they tested specifically) have ‘reactions’ even though they are not coeliac.

Biological explanation for wheat sensitivity found

Weakened intestinal barrier, systemic immune activation may explain symptoms in people without celiac disease

It’s all very well finding the markers and confirming the leaky gut and immune activity, but exactly what do you do about it? The Gluten Plan has my full protocol in it for you, of course. Also, see here for my leaky gut factsheet.

In fact, just this morning, I was reading another study done locally (to me) in Plymouth where they have been investigating the cause and treatment of leaky gut which is so prevalent in athletes apparently (new one on me!).

They determined that heavy exercise and increased temperature (from the exercise raising body temperature and actual heat the athletes train in) causes the barrier to become more permeable. And they found that zinc carnosine combined with colostrum is an excellent way to prevent and treat it.

Yes, of course zinc carnosine is one of the leaky gut protocol choices in the Gluten Plan, I thank you. However, I wouldn’t recommend a dairy based colostrum product for a TGF leaky gut since we know it is a very common gluten cross-reactive food. Check the plan for different choices to suit different issues.

Anyway, good research proving what we already know = progress.


Female Coeliac Clues

Female coeliacs can present with non-gastro symptoms far earlier than men. What clues come up most?

Celiac Disease Symptoms in Women

Healing Series: NAC To Lower Central Sensitivity Syndrome?

Brain iconDo you remember my massive post about CSS, Central Sensitivity Syndrome? The basic premise was that some people’s hyper-sensitivity may be related to an amplification of certain neurotransmitter pathways which then cause reactivity, pain and mood changes. I detailed what kind of pathways go wrong and the mainstream meds currently being used to dampen them.

One of the neurotransmitter pathways involves glutamate, an excitatory substance which raises sensitivity, be that to life, pain, foods, chemicals etc… So, I was interested to see this article yesterday about NAC being used in trials to lower OCD (Obsessive Compulsive Disorder).

N-Acetyl Cysteine in the Treatment of Obsessive Compulsive and Related Disorders: A Systematic Review

Now, I know we don’t suffer with OCD, but there are similarities in the hyper-vigilance issue – looking for threats that aren’t there, for example. Some of our foods are indeed physiological problems for us because of the gluten, histamines or whatever, but certainly in hyper-sensitivity cases like mine, there is something additional going on. Or, that’s how I see it currently anyway.

The researchers quite rightly say there need to be more trials but conclude:

Given what is known about NAC’s ability to modulate glutamate, it may be patients with glutamate abnormalities who are responsive to NAC. If so, the therapeutic efficacy for NAC in both of these disorders suggests that the parallels between OCD and OCRD clinical presentations may be, in some cases, the result of underlying glutamate dysregulation, as well as oxidative stress, the latter either as a causative factor or consequence of the disease process.

So, if we think we may have a CSS issue – of which OCD is just one example – and NAC in trials is showing it may be able to lower the glutamate-based heightened sensitivity, doesn’t that give us a possible mode of treatment? No idea, but I thought it was worth musing about in case.

I do know that some of you already take NAC to benefit glutathione levels and therefore lower oxidative stress and increase detoxification via the liver etc; I wonder if the dosages the researchers used (up to 3000mg per day although they reckon higher could be used for some) are much different and if the NAC could well be helping in a different way too then by lowering the glutamate and consequently dampening down the hyper-sensitivity pathways? An interesting thought.

For more on NAC and glutamate, I saw this useful article in Psychology Today:

Problems? I Have a NAC for That

And on NAC generally, see here. There are several NAC products in the TGF Master List for you. ARG do a 500mg, for example. Please use with advice from your health professional, as always. And let me know how it goes if you do. Meantime, I will keep my eyes peeled for more research on it.

Is Gluten Free A Fad?

To be honest, I really can’t be bothered to weigh in myself on this seemingly-circular debate (ie. it keeps coming round and round!), but Chris Kesser makes some interesting points in his latest piece on whether NCGS exists or not, so here it is for you.

Meantime, I will continue to talk to and help the hundreds of NCGS sufferers who contact me daily instead (ooh, sarcasm..!)

When Gluten-Free Is Not a Fad

Gluten E-Summit 2014 Review Freebie

As proGluten Summit Review 2014 3Dmised, I have now put the Gluten Summit 2014 article series into one document for easy peasy download. You can get your free 40 page review instantly by just clicking on the cover in the right hand column on the site, or here. I will also load it into Resources. I’m just too good to you.

In making this available, my hope is that newbies to TGF world can read it and understand they are not going mad, and that people with any form of gluten related disorder will use it to show their health professionals, friends and family they’re not going mad!

In practical terms, it gives tons of explanation, testing and treatment tips from the leading experts in the GRD field, and that, frankly, is invaluable.


Finally, a thank you to CoeliacsMatter.com for commissioning it and making me sit down and do it!

I hope it helps.



Gluten Summit: The Round-Up!

At last, I have come to the final part of the Gluten Summit series: the summary! What are the main conclusions? What can help us most practically in our day-to-day gluten lives? Have a read of the round-up piece here:

Gluten summit Gluten Summit Summary: What Have We Learned?

In this report, I have picked out the best nuggets from the four key areas: Overview, Causes, Diagnostics and Treatment.

To read the introduction to the Gluten Summit, see here. Catch up with the mini-series 1,234 and 5.

I really hope you found this series useful and that it will open some eyes to the real problem of gluten-related disorders and overturn some of the pervading – and frustrating – myths about gluten illness. It most definitely is NOT all about coeliac disease or gliadin, and the traditional gluten free diet approach falls woefully short for many gluten-sensitives. If we only get that key message across to more people, then I’ve done my job!

I will shortly be putting the whole series as a free download on the site and I hope people will use it as a sort-of gluten-related disorders ‘primer’ and will give it to dissenting or simply gluten-uneducated friends, family and health professionals when they need to.

Finally, thank you to CoeliacsMatter, who commissioned the series and made me do it!