Gluten: No Grain, No Pain

Nutritionist Micki Rose lifts the lid on why stopping wheat, rye and barley may not be enough to avoid gluten

If you’re diagnosed coeliac but still feel unwell, failed a coeliac test but know gluten affects you, or simply suspect that certain grains, and not just the obvious ones, don’t suit you, listen up.

There is gluten in ALL grains, not just wheat, rye and barley and avoiding just these ‘traditional’ gluten grains may not be enough. A lot of people are as yet undiagnosed coeliacs – only about 10-15% are currently diagnosed according to Coeliac UK – but some experts reckon many more could have Non-Coeliac Gluten Sensitivity [NCGS]. You can even have both.

It is well-known that many coeliacs following the traditional gluten-free diet don’t get completely well (1). Estimates vary but some studies have shown that gut lesions heal in only a few people, which would suggest that something is still damaging the tissue or at least preventing healing. That could, of course, be not complying fully with the diet or hidden traditional gluten, as Coeliac UK suggested when I asked them, but for some at least, I am willing to bet it is the continued ingestion of so-called ‘safe’ gluten grains.

In fact, some experts believe NCGS is a major and, as yet, pretty unacknowledged problem.

What is NCGS? The Experts' View

In the book Dangerous Grains, authors Braly and Hoggan suggest that NCGS is around 30 times more prevalent than Coeliac Disease [CD] and up to 15% of people, or 1 in 7, are gluten sensitive (2).

Dr Peter Green, Director of the Celiac Disease Center at Columbia University says that 60-70% of the people he sees who think they have coeliac disease don’t but they are actually gluten-sensitive! (3)

There is a growing belief that CD is just one manifestation of gluten sensitivity. Writing in The Lancet in March 2010, Dr Marios Hadjivassiliou and colleagues wrote:

“This disorder [NCGS] is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity.” (4)

In other words, just looking for gluten problems as damage to the villi in the intestines is not enough; other parts of the body and organs can be affected too.

Vodjani, O’Bryan and Kellerman concluded in 2008 that: 

“Gluten sensitivity can exist even in the absence of an enteropathy [gut tissue damage]. The systemic nature of this disease, the overwhelming evidence of an immune pathogenesis and the accumulating evidence of diverse manifestations involving organs other than the gut, such as the skin, heart, bone, pancreas, joints, nervous system, liver, uterus and other organs necessitate a re-evaluation of the belief that gluten sensitivity is solely a disease of the gut.” (5)

It’s now known that neurological and nervous system disorders like ataxia, developmental delay and even depression and migraine are related to gluten, without the presence of CD (6). Adrenal problems are thought to be commonly caused by gluten. Other symptoms often seen involve the brain and may manifest as foggyness, loss of memory and struggling to find words.

Contrary to popular belief, then, CD is not the be-all-and-end-all of gluten sensitivity, but it may be that gluten intolerance comes first and causes major problems, one of which could be damage to the villi, as in CD, but equally it may cause damage anywhere else.

As GS expert Dr Peter Osborne says in his new book Glutenology: “Currently, there are about 300 known illnesses, diseases and conditions connected to gluten allergy, intolerance and sensitivity.”

That’s a lot of illness. In his literature, he cites the most common diseases he says “have been directly associated with gluten sensitivity”. These are: “Asthma, thyroid disease, eczema, psoriasis, autism, ADD/ADHD, colic, acid reflux, migraine, chronic joint pain, schizophrenia, bipolar, IBS, infertility, chronic constipation, restless legs, iron-deficiency anaemia, osteoporosis, high cholesterol, non alcoholic fatty liver disease (and other gallbladder and liver problems), fibromyalgia and chronic fatigue syndrome.”

Phew. One thing’s for certain: GS isn’t just about digestive issues and lots of people have no digestive symptoms at all. Many people with GS are missed and in a kind of ‘no-man’s land’ because they don’t have the traditional gluten symptoms of weight loss, gut signs or failure to thrive as a child. GS may not even involve an immune response of any kind and people can have totally opposite symptoms from those normally associated with gluten illness.

Auto-immune diseases are thought to be gluten-related too, as Dr Osborne explains: “There are actually 140 autoimmune diseases that we’ve identified, and the only scientifically agreed upon cause for autoimmune is gluten sensitivity. Now there are other triggers for autoimmune disease. An infection can trigger an autoimmune disease. A vitamin deficiency can trigger an autoimmune disease, particularly vitamin D. But gluten tends to be kind of that central core hub that’s always present.” (7)

Phew again. That’s dynamite info for anyone with an auto-immune disorder, or risk of one. Now you have picked yourself up, let’s consider why we have missed this for so long.

A History Lesson

If it is a fact that there is a form of gluten in every grain, why do we believe that wheat, rye, barley, and sometimes oats, are the only glutens we need to avoid? Would you believe it all comes down pretty much to a tiny study of 10 people done at the University of Birmingham in 1952?

The symptoms of CD have been known for a very long time, as far back as 300AD, but research into the cause didn’t really pick up until the 1900s. Before the 1952 study, people with the symptoms of coeliac disease were treated very successfully with a starch-free diet, which later became the ‘specific carbohydrate diet.’ This involved removal of all grains and starch-containing foodstuffs except bananas (Haas, 1924; Andersen, 1947; Sheldon, 1949) (10).

During World War 2, Dutch researchers (Dicke et al, 1950, 1952 and 1954) (10) noticed that many of their digestive ‘coeliac’ patients got better during the grain shortages that plagued Holland at the time, and that their patients worsened when Allied planes dropped bread supplies. Dicke went on to research why and this led to the first proposition that villi damage was related to gliadin, the gluten in wheat. This was backed up by the findings of the team at the University of Birmingham who had tested just ten patients with coeliac disease. They concluded:

“Gastro-intestinal function was investigated in 10 children with coeliac disease…The removal of wheat flour from the diet resulted in rapid improvement, both clinically and biochemically. Deterioration followed the reintroduction into the diet of wheat flour or wheat gluten, but wheat starch had no harmful effect.” (9)

Almost overnight the belief that carbohydrate starch was the issue changed and gluten became the culprit. This flew in the face of all the previous research, but amazingly, the coeliac diet was changed to removal of the main wheat gluten, gliadin, and many sufferers began to fall into a diagnostic no man’s land.

“Unfortunately, only a few of the many patients ill with digestive complaints fit the exceedingly narrow celiac criteria. …Patients waited an average of 11 years for diagnosis if they were ever diagnosed at all. Many of these unfortunate sufferers were labelled with a catch all term, ‘Irritable Bowel Syndrome.’” (10)

How true. Even the NHS website admits that many, many more people may have some form of gluten issue (although they see that as CD mainly):

“In many cases, coeliac disease does not cause any noticeable symptoms, or it causes very mild symptoms. As a result, it is thought that at least 50% or possibly as many as 90% of cases are either undiagnosed or misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).” (11) That is a lot of people!

What Is Gluten And Where Is It Then?

Gluten is a storage protein found in all grains and is made up of two smaller proteins: prolamine and glutelin. Gliadin is the most-researched prolamine and comes from wheat; it is the one associated with causing CD. Cereal grains belong to the Gramineae (grass) family and the closer a grain’s relationship to wheat, the grain with the highest gluten content, the greater its ability to cause problems. Other grains have closely and not-so-closely related prolamines that may cause problems to the gluten-sensitive.

Often CD sufferers are told to remove buckwheat, oats and millet too as they react to them despite buckwheat not being part of the grass family and millet being more closely related to rice than wheat. The reason is that they contain their own prolamines. This is an obvious case of grains other than wheat, rye and barley causing problems.

This is an evolving science and thousands of glutens have been found already, but here are the main ones in the most common grains:

Type and Percentage of Gluten In Different Grains (in order)

Based on information supplied in ‘Glutenology’, Dr Peter Osborne

I have seen people gradually progress through this table, becoming intolerant to one after another grain almost in order of the level of gluten found.

You might be surprised to see corn as the second highest gluten grain in percentage terms. Most gluten free substitute foods use corn (also called maize) flour which is why I think many non-suspecting gluten-sensitives get worse when they turn to these kind of convenience foods.

Corn has been shown in several research studies to cause inflammatory reactions in gluten sensitives, to raise SIgA immune antibody levels and maize antibodies have been found in gut disorder patients suffering with CD, Crohn’s and ulcerative colitis (12).

Other studies have shown that people unexpectedly (to the researchers) reacted to grain prolamines other than gliadin (13). This goes to show that we don’t know as much as we think or should about gluten in grains and the way our bodies respond to them. Just because we have focused on gliadin doesn’t mean that is the only problem going on. I suspect there is a lot more on this to be discovered yet.

The Link To Dairy, Leaky Gut & Zonulin

It seems that NCGSs not only have to put up with grain sensitivities but that other food intolerances are just around the corner for many. Dairy intolerance is common. This is likely due to the fact that gluten causes an upregulation of a protein called zonulin which is made in the small intestine. Zonulin is a nasty substance that can degrade the proteins in the gut lining, making it leaky, and the gut then allows other food proteins through, causing more intolerances to develop.

Why Does It Happen?

No-one is entirely sure. Dr Osborne again: “Science estimates that approximately 40 percent of the population reacts poorly to gluten, and the average onset of symptoms of gluten sensitivity is 35-45 years of age.”

Clearly there is a genetic factor involved, as has been found with CD, but that’s not the whole story. According to US gut doctor Scot Lewey: “certain factors are believed to trigger it including the onset of puberty, pregnancy, stress, trauma or injury, surgery, viral or bacterial infections including those of the gut, medication-induced gut injury or toxicity e.g. non-steroidal anti-inflammatory medications such as aspirin, ibuprofen, etc., immune suppression or autoimmune diseases.”

He adds that: “The severity of the sensitivity to gluten does appear to be related to the DQ [genetic] type, family history…, pre-existing intestinal injury, degree of exposure to gluten (how frequent and large a gluten load an individual is exposed to), and immune status.” (14)

I’m not sure whether gluten problems come as a result of poor digestive and immune ability or whether those are affected by gluten first. But it does seem likely since we know it worsens by our mid-thirties that toxic insults like the ones Lewey mentions above and poor nutrition are probably the straws that break the genetically-predisposed back.

Interestingly, though, it could be that villi damage in CD could be positively life-saving! Sayer Ji gives an interesting hypothesis:

“…it is possible that in certain genetically predisposed individuals…the body – in its innate intelligence – makes an executive decision: either continue to allow damage to the kidneys (if not also other organs) until kidney failure and rapid death result, or launch an autoimmune attack on the villi to prevent the absorption of the offending substance which results in a prolonged though relatively malnourished life.” (15)

Diagnosis

Currently, if you present with typical gluten symptoms or maybe anaemia, or you have a good out-of-the-box-thinking GP, you will be tested for coeliac disease. If you are found to have gluten antibodies in your blood and damage to your villi on biopsy, you have CD. If nothing is found, you don’t and that’s an end to the gluten investigations, despite the evidence that coeliac tests are far from 100% accurate. (16)

Gluten/CD Blood Tests

The most common tests for detecting silent and latent coeliacs and that give you a clue to whether you are gliadin sensitive include:

• Total IgA, which shows if someone has a deficiency in the mucosal body immunity marker
• Tissue damage tests: Anti-tissue transglutaminase tTg-IgA and IgG, DGP and IgA-EMA (Anti-endomysial antibodies), which combined are highly predictive of CD even without biopsy and
• Antibody tests: IgA and IgG anti-gliadin, AGA IgA and IgG which show whether someone is not necessarily coeliac but may be sensitive to the gliadin fraction of gluten.

All of these come as part of the fab gluten sensitivity profile performed by Genova Diagnostics. Cost £108. Although don’t forget, this will not confirm GS to any other form of gluten except for gliadin but it can be a good start to rule out CD and see if there is likely to be a simple GS problem. For this test, it is best to have eaten gluten within the past 6 months; as time goes on the tTG marker becomes less sensitive and your IgG anti-gliadin antibody levels have started to drop.
 
Even if you are tested for CD, though, don’t be surprised if nothing is found but you still react to gluten; a lot of people come up negative but respond well to a gluten free diet. This may be because it has nothing to do with an immune reaction, which is what the antibody tests are searching for. Men especially tend to get negative antibody tests. (17)

Genetic Tests

Now, to gene testing. This is exciting in that it makes no difference whether you are eating gluten or have been off it for donkeys' years; the test will still work. GS is said to be a state of genetics so if you have the GS pattern and continue to eat gluten, it is thought to be when you get ill, not if. It is especially recommended if a family member is coeliac or GS or you are at risk of an auto-immune disorder. Prevention is so much better than cure.

Gene testing is very complex but basically we all have patterns of proteins on the surface of our white blood cells. These are called HLAs (human leukocyte antigens) and one of these, often related to CD and NCGS, is called DQ, again of which there are several, all numbered for identification. Coeliac gene testing looks for the HLA DQA2 and 8 genes and they are estimated to be found in over 90% of CD sufferers so are highly predictive of CD.

However, experts believe they have found other DQ genes including DQ1 and 3, which can signify gluten intolerance or NCGS. Dr Kenneth Fine of Enterolab, for example, believes that another 6 DQ genes are correlated with raised gluten antibodies and the tissue transglutaminase enzyme. Only DQ4 appears not to be related to gluten.

There are a couple of options but the most comprehensive test, in my opinion, comes from Dr Osborne, cost currently around £200. Results back with 3-6 weeks with a video explanation.

Treatment

The good news is that if gluten turns out to be an issue, you are likely to recover once it is totally out of your system. The difficulty is in achieving that. Not only do you have to come off the gluten grains, but if you are sensitive enough, you have to ensure none gets in through cross-contamination or hidden too and that’s the toughie. How far you have to go depends very much on your own reactivity, of course.

Which Grains Are Safe/Unsafe?

I asked Dr Osborne to give me a definitive list of which grains are truly gluten free and which aren’t. This is a good place to start.

There is hope in that a specific enzyme treatment protocol can help some achieve a less restricted diet. It’s important also to identify and correct any nutritional deficiencies caused by malabsorption so diet and a supplement protocol (no hidden gluten in those, of course) go hand in hand.

This is a relatively new area so specialists are few and far between. We certainly don’t know everything by a long shot yet and, even though there is plenty of evidence around, opinions do vary.

I know this feels like gluten heresy, but go with your gut, or any other part of you that screams after grains for that matter, and check out if you need to go truly gluten free. It might be the best move you ever made. Good luck.

For Further Help, Tests & Resources

This has mushroomed into such a huge and complex subject, I have now started a new site at www.trulyglutenfree.co.uk where you can find more info, tons of resources, a free introductory video explanation of GS, an ebook, access to the tests and links to other sites and experts. I hope you find it useful. Meanwhile, I’m off for a lie down!

References

!. Recovery rates on traditional GF diet:

www.ncbi.nlm.nih.gov/pubmed/19302264
www.ncbi.nlm.nih.gov/pubmed/20145607
www.ncbi.nlm.nih.gov/pubmed/15497770
www.ncbi.nlm.nih.gov/pubmed/12481164
www.ncbi.nlm.nih.gov/pubmed/166444602

2. Stats on number suffering from NCGS:  and Dangerous Grains, James Braly and Ron Hoggan

3. Dr Peter Green video

4. The Lancet piece – Dr Marios Hadjivassiliou   The Lancet Neurology Volume 9. Issue 3, Pages 318–330 March 2010

5. The immunology of immediate and delayed hypersensitivity reaction to gluten. A. Vojdani, T.O'Bryan and GH Kellerman. Neuroscience, WI, USA January 18 2008

6. Dr Rodney Ford on neurological illness related to gluten: The gluten syndrome: a neurological disease

7. Autoimmunity and continued allergies

9. The Birmingham University study: Anderson CM, French JM et al: Coeliac disease: gastrointestinal studies and the effect of dietary wheat flour. Lancet 1:836-842, 1952.

10. www.theglutensyndrome.net

11. www.nhs.uk/conditions/coeliac_disease

12.www.glutenfreesociety.org/corn-antibodies-in-celiac-crohns-and-ulcerative-colitis/

13. Comprehensive, quantitative mapping of T cell epitopes in gluten in celiac disease

14. Scot M. Lewey, www.thefooddoc.com

15. Sayer Ji: www.greenmedinfo.com and Unglued – the sticky truth about wheat, dairy, corn and soy

16. Evidence that biopsy is not always accurate

17. Diagnosis of Gluten Sensitivity in the 21st Century by Kenneth Fine, MD

You can contact Micki via www.trulyglutenfree.co.uk

First published February 2011

July 2013 – From JM:

This article brought tears to my eyes. I've tried for so long to explain to people/doctors that my celiac AND corn intolerance are not coincidental. My corn intolerance is outrageous---anaphylaxis, preseizures, vomiting, the works. It makes my celiac seem like a piece of cake. I try to explain that I get IDENTICAL symptoms from corn as the celiac responses, plus more, but people swear there's no connection.

Outside of occasional white rice, I am nearly grain free. Whenever I try other grains, I start getting terrible joint pain and nausea. Also, a tip that you need to know; when I stopped eating table salt, my blood pressure dropped.

I have been so sad about my diet, I started a twitter site: Gluten and Corn Free @mlocks571. PLEASE be aggressive in solving this problem!!!!!

July 2013 – From Micki Rose:

Hi JM, I'm so glad my piece helped you - good job Michelle made me sit down and write it!

You are certainly not alone with having similar symptoms to other grain glutens and not just to gliadins. Just because mainstream medicine hasn't quite made the connection yet doesn't mean there isn't any. I hear from people like you daily.

It may be that you do have coeliac disease but that you also have NCGS. I have both myself and have to follow a grain free diet. I kept rice in for a year too but eventually that had to go too and, yes, it makes us all sad to lose the foods but not sad at all to lose the feeling rubbish all the time!

I would say, though, that you also would be wise to check out classical IgE allergy to gluten, gliadin and grains as anaphylaxis is an IgE mediated reaction generally and that is important to know and have on your file. I wonder if you have an EpiPen already. Do talk to your doctor and be safe.

Meantime, glad you found our piece helpful and wish you well in future.

July 2013 – From JM.

Thanks! I have had several allergy tests for corn, soy, etc, nothing was positive. The only thing that's clear is corn is literally deadly for me.

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