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!

Does a Virus Trigger Coeliac Disease?

Interesting piece from the IFM today for you – I would have said it is pretty obvious that infection is involved somewhere, if ‘only’ in causing immune dysregulation:

Is a Virus Responsible for Celiac Disease? 

The rise in autoimmune conditions in the developed world has led to questions about whether subclinical infections could play a role in setting the stage for celiac and other autoimmune diseases. Environmental factors are implicated due to the rapidly increasing rates of autoimmune conditions, including celiac disease.1 Researchers are beginning to identity the factors that could be responsible.
 

One potential trigger is the disruption of immune function due to infection. Subclinical infections with reovirus are common, although researchers aren’t sure exactly how common. In one US study, 50% of children aged five to six showed evidence of reovirus infection.2 Reovirus usually causes few symptoms and is considered relatively harmless.3

A new study provides evidence that subclinical infections may indeed play a role in celiac pathology.4 In the first part of the experiment, mice genetically engineered to have celiac susceptibility were injected with a human reovirus. When mice were exposed to gliadin, those that had been exposed to reovirus had a much stronger immune response—two to three times more gliadin antibodies than controls. This suggests that reovirus changed the gastrointestinal immune response, creating a milieu where immune activation was more pronounced. In the second part of the experiment, humans with celiac disease were tested for the presence of reovirus antibodies. Not all of the celiac patients showed immune signatures from reovirus; however, a significantly higher proportion of diagnosed celiacs did show reovirus antibodies when compared to controls.4
 
This suggests that even seemingly harmless viral infections may alter immune response and lead to autoimmune conditions like celiac disease. One model for the development of autoimmune conditions involves a triad: genetics, intestinal permeability, and environmental factors.5 Reovirus could be one such common environmental factor. Only a few studies have examined potential viral antecedents for celiac. Small correlations have been found, for instance, between respiratory syncytial virus infection in children and celiac disease.6 The microbiome also plays a role in gastrointestinal immune response,7,8 and individuals with celiac are known to have different microbial populations than healthy controls.7,8,9
 
Reovirus infections are one potential disruptor for immune and microbial homeostasis; other triggers are likely to be implicated in celiac disease pathology in the future. Understanding these antecedents will improve our ability to not only treat these patients but to potentially reduce the prevalence of autoimmune conditions.

References

  1. Pagliari D, Urgesi R, Frosali S, et al. The interaction among microbiota, immunity, and genetic and dietary factors is the condicio sine qua non celiac disease can develop. J Immunol Res. 2015;2015:123653. doi: 10.1155/2015/123653.

  2. Tai JH, Williams JV, Edwards KM, Wright PF, Crowe JE Jr, Dermody TS. Prevalence of reovirus-specific antibodies in young children in Nashville, Tennessee. J Infect Dis. 2005;191(8):1221-24. doi: 10.1086/428911.

  3. Kapikian AZ, Shope RE. Chapter 63: Rotaviruses, reoviruses, coltiviruses, and orbiviruses. In: Baron S, ed. Medical Microbiology. 4th ed. Galveston, TX: University of Texas Medical Branch at Galveston; 1996. Available from: https://www.ncbi.nlm.nih.gov/books/NBK8558/.

  4. Bouziat R, Hinterleitner R, Brown JJ, et al. Reovirus infection triggers inflammatory responses to dietary antigens and development of celiac disease. Science. 2017;356(6333):44-50. doi: 10.1126/science.aah5298.

  5. Fasano A, Shea-Donohue T. Mechanisms of disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune diseases. Nat Clin Pract Gastroenterol Hepatol. 2005;2(9):416-22. doi: 10.1038/ncpgasthep0259.

  6. Tjernberg AR, Ludvigsson JF. Children with celiac disease are more likely to have attended hospital for prior respiratory syncytial virus infection. Dig Dis Sci. 2014;59(7):1502-08. doi: 10.1007/s10620-014-3046-1.

  7. Verdu EF, Caminero A. How infection can incite sensitivity to food. Science. 2017;356(6333):29-30. doi: 10.1126/science.aan1500.

  8. Cheng J, Kalliomäki M, Heilig HG, et al. Duodenal microbiota composition and mucosal homeostasis in pediatric celiac disease. BMC Gastroenterol. 2013;13:113. doi: 10.1186/1471-230X-13-113.

  9. Cenit MC, Olivares M, Codoñer-Franch P, Sanz Y. Intestinal microbiota and celiac disease: cause, consequence or co-evolution? Nutrients. 2015;7(8):6900-23. doi: 10.3390/nu7085314.

9 Signs You Might Have A Gluten Related Disorder

How many of these can you count, then?

I got six originally and nowadays have one – the pounding headaches/migraines. This is often one of the most difficult symptoms to get rid of, I’ve found, and others I talk to say the same. Not nice at all, I can tell you. I could actually say I have a half too – the skin thing. I am definitely more susceptible to itching, sore skin and, interestingly, this is much worse around my cycle so I am convinced there is a hormone link there too.

People are often surprised by the fact that most people don’t have gut symptoms and, in fact, many experts now believe that the presence of brain fog should trigger an investigation for a gluten illness; they think it’s the top tell-tale signal. I do see it an awful lot, and I agree. Nowadays, it’s one of the first questions I ask and  then look for other confirmatory clues as I go along.

The other is: ‘Have you come off traditional gluten for 2 weeks or more and felt better?’

Most will answer: ‘yes, but my symptoms didn’t all go so I went back on it.’

I then go through the chat and invariably people have gone on to feel even worse over the ensuing months or years, but have not made the connection that the reintroduction of gluten after a break will often make the situation worse over time, giving them new symptoms to deal with. Often those will be mood and neurological in some way I’m finding, as if it’s gone to a deeper system somehow or something.

And, they often won’t have thought that the continued ingestion of either gliadin (as in a traditional GF diet) often hidden in foods, toiletries etc and/or the ingestion of other gluten peptides, not just gliadin, may have been why not all their symptoms went on their exclusion diet in the first place.

This then makes me consider either a ‘proper’ trial of trad GF, or a TGF approach, or I’ll suggest testing, depending on if they’re still on gluten or not and whether I think we need to find something on paper for them and their doctors to see if we can.

Fascinating, isn’t it? It’s often blindingly obvious when I see it as I see it all day, every day in cases. When you point it out, people are often surprised they didn’t make the connections either. It seem simple but nothing about food ever is, is it?!

Anyway, I digress, as per! Back to the article I saw here.

9 Surprising Signs You May Have A Gluten Allergy

And, of course, I don’t agree that there is no way to test for gluten related disorders. There is. Not perfect yet, of course, but we are further on than this suggests, see the Gluten Tests page here.

Should You Test For A Leaky Gut?

test iconWell, yes and no. Let me explain. In fact, let SCD Lifestyle explain as they’ve just done a useful post on it, so it saves me time! Their post was about a webinar which has now gone, but some of the points in the post are useful anyway.  I have been asked my views on it by a few of you so thought I would share them more widely!

Is Leaky Gut Testing A Waste Of Time and Money?

In essence, they suggest you could better spend your money elsewhere and assume you have a leaky gut. I agree with that and have said it many times.

BUT, it can be very useful to test your leakyness so you can monitor progress. I went through a time when I was saying the same thing but found people wanted to test sometimes anyway, if only to see on paper if the gut or brain barrier had been affected in some way and they weren’t going mad. Also, it can really help to see that damage coming down, even when you can’t feel anything getting better yet – and that has happened quite a few times so far. I did Cyrex 20 for migraine, for example, as I wanted to see if my blood brain barrier was breached and how badly, for example. It sort of helps to see something on paper even though I suspected it.

The other thing is that the Cyrex 2 especially can give you a good idea of what might be causing the leakyness. A case in point was just last week.

I had a patient do the Cyrex testing as I have set it out in the Gluten Plan and the Gluten Testing page. In essence, the results suggested they have gut and blood-brain barrier loss of integrity, plus thyroid autoimmunity, caused most likely by bacterial infection rather than food or gluten specifically.

How can we tell it is likely bacterial rather than food, you ask?

Well, in Cyrex 2, the permeability test, we found a high LPS score which shows bacterial endotoxins most likely causing leaky gut rather than food because results from Cyrex 3 and 4 showed no food antibodies positive, Cyrex 20 showed blood brain barrier integrity loss. Ergo more likely to be infection than food. That’s not to say food might not be involved – the tests are not infallible and it may be that this person doesn’t have an antibody reaction to food. That’s when you would double-check with something like the ALCAT tests.

So, sometimes you can see it is useful to test – it certainly gives this person somewhere to focus treatment: on hunting down and dealing with bacterial infection.

That said, SCD make a good point and I agree in that I always ask: will having a test change the treatment? If not, is it worth it to know? In this case, would the person have been taking anti-bacterial treatment as part of a gut healing protocol anyway? Maybe. But would it not be more beneficial to try and discover what the bacterial problem is and target is specifically? Possibly. It’s always a judgement call, isn’t it?

I do agree that no leaky gut test yet exists that is 100% reliable but these are the best we have and can help when you use them correctly.

What about the PEG test, or lactulose/mannitol?

Basically, there are two main ways of testing leaky gut currently. You can either look at absorption of molecules, as in the PEG and L/M test OR you can now look at antibodies – immunological damage to the barrier structures and proteins – as in the Cyrex 2 permeability test. The two are completely different: apples and pears, and you cannot compare them.

Generally, I have found the PEG test very useful in people as a progress marker. The PEG test is looking to see what size molecules are getting through the gut barrier – larger ones shouldn’t be getting through, quite simply, and you should see the number coming down if you are healing.

The more well known lactulose/mannitol test is similar in that it is measuring absorption and molecules getting through really. I avoid it in TGF world, though, because it is derived from corn and dairy most of the time. PEG is an inert synthetic substance: OK, not great for you but not a food allergen at least.

The Cyrex 2 is an antibody test, looking for immunological markers and, as I have explained above, can be quite useful in our detective work.

 

The Strategy for Healing

The second part of the SCD post is also useful in that it describes the approach to so-called ‘tough cases’. In effect, diet alone will not do it. Again, I agree with that. They have even caught up now and advise an AIP diet, healing supplement protocol and working on your stress. Recognise that? It’s the Gluten Plan and strategy advised on the TGF site! Nuff said.

For more on leaky gut and the healing protocols, it’s all in the Gluten Plan – I haven’t had a chance yet to pull that section out and do a leaky gut factsheet for you. Never enough time! But it is all there for you, I promise.

Gluten Cross-Reactive Foods List

The body can easily confuse other foods that look structurally similar to gluten and give gluten sensitives and coeliacs the same gluten reaction. Here is a reminder list of the gluten cross-reactive foods for you (requested by J today so thought it might be useful to have it on here and searchable) and I have also put it on the Gluten Diet page, too.

 

The Cross-Reactive Foods

If any of these are found positive, they need to be avoided for life in the same way as gluten.

Grains:

Rye 

Barley

Spelt

Polish Wheat 

Oats 

Millet

Corn 

Rice 

Dairy:

Cow’s Milk 

Alpha-Casein & Beta-Casein 

Casomorphin 

Milk Butyrophilin 

Whey Protein 

Others:

Chocolate (Milk) only milk chocolate is cross-reactive because, obviously, it contains milk. Cocoa itself is safe.

Yeast -a combination of brewer’s and baker’s yeasts is used in tests so could be both or either

You can check for antibody reactions showing on these foods using the Cyrex Labs Cross-Reactive Foods Test on the shop here.

We must bear in mind, though, that some people do not have antibody reactions and have other processes going on in food sensitivity, but this is certainly the main type of test to go for – the ALCAT test is a good double-checker if you suspect something.  I particularly recommend this test for people who are starting a gluten free diet and want to know which other foods might slow their healing and progress down. Do it BEFORE you give up any of the foods for maximum info.

The Cyrex test also looks for common substitute food problems (these are not cross-reactive):

The Common Substitute Foods

If any of these are positive, they can be re-tested and re-introduced if negative once Array 2 shows the gut barrier has healed.

Sesame
Buckwheat
Sorghum
Hemp
Amaranth
Quinoa
Tapioca
Teff

Coffee  – instant coffee has been found to be cross-contaminated and therefore reacts but coffee beans, ground and brewed is safe
Soy
Egg
Potato – white potato is tested

 

Hope that helps remind you which are which!

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!

Could ALV Enzyme Protect Against Coeliac Injury?

Interesting study recently in Gastroenterology journal where people given gluten protease enzymes were found not to develop mucosal (villi) injury when given a small amount of daily gluten in trials.

Now, before we get all excited, you have to note that the product on test was made by the same company who sponsored the trial and two of their paid employees were involved in the study. I’m not saying it’s an issue, of course, but you have have a healthy scepticism here. We already have glutenase products which we know help break down the gluten molecules and can, in some people, help to ameliorate any reactions. But, remember, that is to gluten only and this trial is only for coeliacs. Also, I note that some people withdrew from the trial because of abdominal pains – the TGF ones, possibly?

I did wince a bit for those control people who were seen to have measureable increases in inflammatory markers (IELs) and mucosal damage. Ouch. In fact, if you look more closely at the study, it appears that almost all of the participants had at least one so-called ‘adverse event,’ most commonly gut and headaches – the symptoms we would normally see in gluten reaction (note the neurological one here). In other words, whilst no villi or IEL changes were seen in some, the symptoms were – which, for me, backs up the notion that looking at the villi and gut inflammation is not enough.

Anyway, a note of hope for future treatment maybe, but I am not holding my breath. Have a read of a story in Science Daily here:

Potential new treatment may protect celiac patients from gluten-induced injury

and here is the abstract and full text in the journal

 

Glutenase ALV003 Attenuates Gluten-Induced Mucosal Injury in Patients With Celiac Disease

Source: Foodsmatter.com enews Sep 14.

Updates: Allergy 101 and Gluten Plan

Yep, I have been a busy bee! Just to let you know I have updated the following for you:

Allergy 101

This is now a 45 page free factsheet all about allergy testing and treatment. I get asked about allergy testing every single day and always direct people to this free factsheet first. So, I had to bring it up to date to take account of new tests available, clinical experience, research etc! I have updated the allergy tests too on the shop so we now also include LRA, ALCAT, Genova and others. In it, you can learn:

  • What symptoms and conditions could be allergy or intolerance related
  • What causes allergy and intolerance
  • My whole testing protocol for finding types 1, 2, 3 and 4 sensitivities to foods, inhalants etc (that’s classical IgE allergy, delayed intolerances and inflammatory reactions to you and me)
  • What other factors could be causing problems eg. malabsorption, infections, poor immunity, leaky gut etc and how to find them
  • Two suggested treatment plans for ‘simple’ and multiple food intolerance.

You can download it here. Please pass it on for anyone who needs it too.

 

Gluten Plan

Updated Barrier Healing section and Core Protocol to take account of Permavite no longer being TGF safe. Phew – I wish they’d stop changing the ruddy products! Free update on the Facebook Gluten Planners Group as usual. If you haven’t got the Gluten Plan yet, why not?! Here it is. Trust me; it will help with anything to do with leaky gut, inflammation, malabsorption, allergy & intolerance and autoimmunity; it’s just that saying ‘Gluten Plan’ is somewhat quicker! Eventually, I will pull out the various sections as separate factsheets but the GP is already turning into a bit of a ‘chronic health problem’ go-to!

Hope they help for you.