A bit of positivity about progress.

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In most auto-immune conditions, the trigger is unknown, but thanks to the work of doctors and scientists in the last century, the trigger of coeliac disease has been identified as gluten.

 

So here we go again.

 

It’s funny how I tend to forget what the pain of accidentally ingesting gluten is like every time. For me, symptoms are very specific and only occur with gluten exposure. So I am lucky enough to know that the cause is gluten beyond doubt.

 

As I was lying on my bed this afternoon, trying not to focus on the pain I got thinking. It is not all bad.

 

In most auto-immune conditions, the trigger is unknown, but thanks to the work of doctors and scientists in the last century, the trigger of coeliac disease has been identified as gluten. In my article titled A little history about coeliac disease, I explained that before the introduction of the famous banana diet by Sidney Haas in 1924, the only treatment was introducing food in stages to the coeliac patient over a period of months to years. Just think of the pain the patients with coeliac disease had to endure on a daily basis at the time. Not to mention the complications they suffered as a result of untreated coeliac disease. It wasn’t until the second world war that  Dutch pediatrician Willem Karel Dicke, MD noted that his paediatric patients improved when wheat was excluded from the diet and replaced with rice and maize flours. The discovery was due to the shortage of wheat grain during the war years in Holland.  These children deteriorated again when wheat was re-introduced post war.

 

We are lucky that we know that we should avoid gluten. Even an episode of accidental gluten exposure only causes temporary discomfort for people who have been diagnosed with coeliac disease. By knowing our trigger to ill health, we have a chance to prevent complications and to improve our life expectancy to the same as the general population. We also have the chance to reverse some of the damage that occurred from years of gluten exposure. I say some, because although the intestine will eventually heal, the systemic effects of years of malabsorbtion might not all be fully reversible depending on the age of diagnosis.

 

Even people with silent coeliac disease are now being diagnosed, something that was impossible in the past due to lack of awareness that coeliac disease can manifest with atypical or no symptoms, and due to the fact that it was still unknown that certain groups of people are at a higher risk of developing the condition. Thanks to screening programmes whereby people with a family history of coeliac disease, other autoimmune conditions, type 1 diabetes, IBS, anaemia of unknown cause and symptoms of coeliac disease amongst others are tested, more cases are being diagnosed. There still remains a high percentage of undiagnosed people who suffer from coeliac disease, but this is improving with greater awareness and diagnostic criteria.

 

With regards to diagnosis, antibody blood tests have become more specific and sensitive. An endoscopy is a much milder and easier way of viewing one’s insides and taking a biopsy than previous methods that caused much more discomfort and were not as accurate. We also now know the genes that are associated with coeliac disease. Genetic tests are available, and are useful to rule out coeliac disease or to know if one has the gene/s that give them the potential to develop coeliac disease.

 

As I am typing this out I am already feeling a little better about myself. At least I know that I will feel better soon because I know what it is that makes me ill. And although complex, expensive and at many times inconvenient, a gluten free diet is just that. A diet.  Not too bad as a treatment for a serious auto-immune condition.

 

The power of positivity….

 

How do you feel about this?

 

 

 

 

 

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Another promising prospect to treat coeliac disease and gluten intolerance.

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Have you heard of Elafin?

……No, it is not the name of a mythical magical being.

 

Elafin is a natural human protein that has antiproteolytic properties amongst other beneficial properties. Antiproteolytic means that it inhibits the activity of enzymes that break down proteins during digestion.

 

Due to this property, results of studies on several animal models have raised the possibility that elafin might be effective in the treatment of a variety of human inflammatory diseases (3). It was initially being trialled on post-operative inflammation and the clinical consequences of major surgery.

 

But what has this got to do with coeliac disease or gluten sensitivity?

 

Scientists have recently shown that Elafin plays a key role against the inflammatory reaction typical of coeliac disease. They found that patients with active coeliac disease expressed a lower amount of Elafin from the small intestine (1). On the other hand, they also noted that Elafin can prevent the destruction of the gut barrier during inflammation, that it can interact with enzymes responsible for the abnormal breakdown of gluten, and that it can reduce gluten toxicity in gluten- sensitive mice (1,2).

 

A way to deliver the missing Elafin to coeliac patients has been proposed. In the same study described above, the scientists administered Elafin with help of a harmless bacterium that is often present in food to gluten intolerant mice. They developed a strain of this bacterium that enables a targeted and local production of Elafin and this significantly decreased inflammatory reaction in these mice (2).

 

This is a promising prospect to treat coeliac disease and gluten sensitivity. More research is needed to understand the mechanisms of this in human coeliac disease patients, and to identify other bacteria that naturally produce proteins with anti-inflammatory properties similar to Elafin (2).

 

_________________

 

This is just another potential treatment for coeliac disease and gluten sensitivity. I had written a post last January about the enzyme that is being developed to treat coeliac disease.

To read it click here: https://candiesglutenfreeland.wordpress.com/2014/01/04/a-miracle-enzyme-for-coeliacs/

 

 

References:

1. Galipeau, H.J., Wiepjes, M., Motta,J.P., Schulz, J.D., Jury,J., Natividad, J.M.,……& Verdu, E.F. (2014, April, 8) “Novel Role of the Serine Protease Inhibitor Elafin in Gluten-Related Disorders. Abstract.” www.nature.com. The American Journal of Gastroenterology. Web. 10 Apr. 2014.

2. INRA – Paris. (2014, April 7). Natural protein Elafin against gluten intolerance?. ScienceDaily. Retrieved April 10, 2014 from http://www.sciencedaily.com/releases/2014/04/140407192735.htm

3. Shaw, L., & Wiedow.O. (2011) “Therapeutic Potential of Human Elafin.”http://www.biochemsoctrans.org/. Biochemical Society Transactions. Web. 10 Apr. 2014.

 

 

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Eight facts about gluten sensitivity.

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Gluten sensitivity is still being researched. Here is a little information about what is known and still unknown about this condition.

 

1.The medically accepted term for what was previously known as gluten intolerance is Non Coeliac Gluten Sensitivity (NCGS).

2. NCGS is characterized by symptoms that usually occur soon after gluten ingestion, disappear with gluten withdrawal and relapse following gluten challenge, within hours or few days (1).

3. Symptoms experienced include a combination of IBS-like symptoms, including abdominal pain, bloating, bowel habit abnormalities (either diarrhoea or constipation), and systemic manifestations such as “foggy mind”, headache, fatigue, joint and muscle pain, leg or arm numbness, dermatitis (eczema or skin rash), depression, and anemia (1).

4. In NCGS there are no coeliac-specific antibodies in response to gluten, and gluten ingestion does not result in the atrophy of the villi (damage to the small intestine lining) like in coeliac disease (1).

5. Diagnosing NCGS. Since there are still no validated tests to diagnose gluten sensitivity, currently the only way to diagnose this condition is by elimination. It is important to keep eating gluten until coeliac disease and wheat allergy are tested for. If these are negative, gluten can be eliminated for a few weeks and then re-introduced to observe the response under a doctor’s guidance.

People with negative coeliac blood tests who also lack clinical evidence of malabsorption (weight loss, diarrhoea, and nutrient deficiencies) and coeliac disese risk factors (including a personal history of other autoimmune diseases and a family history of CD) are highly likely to have NCGS (2).

Some doctors are offering saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted. Due to the lack of biomarkers or diagnostic measures,  it is difficult to differentiate between gluten sensitivity and conditions that are not gluten related (1).

6. The overall prevalence of NCGS in the general population is still unknown. This is mainly because many people self-diagnose and start a gluten free diet without medical advice or consultation (1). It has been estimated to be six to ten-times more prevalent than that of coeliac disease (CD) (3). However, more research is needed to determine the true prevalence of this condition.

7. It is still unknown if NCGS is permanent or transitory (1).

8. It is also unknown if everybody who has NCGS has the same sensitivity to gluten, and if sensitivity in the individual changes over time (1).

 

References:

1. Carlo, C., Bai, J.C., Bonaz, B.,  Bouma,G., Calabrò, A., Carroccio, A.,….Fasano, A. (2013)Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients. National Center for Biotechnology Information. Web. 07 Apr. 2014.
2. Kabbani, T. A., Vanga, R.R.,Leffler,D.A., Villafuerte Galvez, J.,Pallav,K.,  Hansen, J. … Kelly, C.P. (2014) Celiac Disease or Non-Celiac Gluten Sensitivity? An Approach to Clinical Differential Diagnosis.American Journal of Gatroenterology, Nature.com Web. 07 Apr. 2014.
3. Molina Infante, J., S. Santolaria, M. Montoro, M. Esteve, & M. Fernandez Banares. Non-celiac Gluten Sensitivity: A Critical Review of Current Evidence. (2014) Unbound MEDLINE. N.p., Web. 07 Apr. 2014.

 

 

 

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Why we shouldn’t blame everything on coeliac disease.

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Have a headache? You must have eaten gluten.
Tummy pain and vomiting? Surely coeliac related.
Acute pain on your lower right belly? No need to have it checked out. You probably ate gluten.
Pain in your little toe? Could it be gluten related?

 

See the trend here?

If you have coeliac disease or non coeliac gluten sensitivity (NCGS), it is tempting to blame every symptom we experience on a gluten exposure. After all, coeliac disease is a multi system disease. This means that it can affect any part of our body, and the symptoms are so vast that they can manifest themselves as gastrointestinal problems, body and joint pains, neurological symptoms and many others. Moreover, the symptoms one person experiences with gluten ingestion can vary from one time to the next. We tend to be constantly fearful that our symptoms are linked to a glutening or coeliac disease.

What we have to remember is that we can still get sick like other people. A headache could be simply stress related or due to a more sinister cause. A bout of vomiting could be due to a tummy bug. Severe acute abdominal pain might need a visit to your doctor. It can be dangerous to blame everything on gluten.

But how can we possibly know if a symptom is stemming from our gluten-related condition? In short, we cannot know this ourselves for sure.

That is why we have to constantly investigate and use a little common sense when we get sick or feel pain. Although many of our symptoms are indeed caused by gluten or complications of coeliac disease, we should not automatically assume that everything is. If things feel strange, or if you have definitely not been exposed to gluten, sometimes a visit to our doctor is warranted.

 

 

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Just for today, this coeliac will vent.

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Today I ate a bit of bread. Normal wheat filled bread. 

 

And it wasn’t my fault.

 

I do not dine out often because I just do not trust people to prepare my food. I am a control freak when it comes to the diligent preparation of my gluten free food. There are only a few restaurants that I trust and I mostly dine in the same places. 

 

Today, I was invited out for lunch. The host and other guests graciously let me select a restaurant to suit my needs. I chose a restaurant that I have been to countless times and from which I have never left disappointed (or ill). The chef is a coeliac himself, so knows about cross contamination issues and hidden gluten.

 

But today, I ate bread in the form of a crust on my lamb cutlets that I have ordered so many times before. They are usually made either without a crust, or a gluten free crust is made for my cutlets. For some reason the waiter forgot to note down that my order was to be gluten free despite my repeating it several times. When my dish was served to me, I confirmed with the waitress that it was indeed gluten free and she said ”of course”. I took a few bites of the meat and the bread coating tasted too fluffy to be gluten free bread. I called the owner and voilà… it was not gluten free at all.

 

Although I admire their outlook, I am not one of those people who state that coeliac disease is the best thing that ever happened to them because they now eat healthier. I could have eaten a healthier diet even if I was not coeliac. If anything, I am eating more crappy foods now than before I was diagnosed, although I try not to. Neither do I feel that coeliac disease has ruined my life. After all, with my diagnosis came a new found health by following the gluten free diet obsessively. And I know that there are much worse ailments to be bestowed with.

 

But today, I feel angry, regretful and mostly sad.  

 

Why do I have coeliac disease? Why do I have to worry and plan ahead every time I go out? Why can’t I completely trust anybody to prepare my food?

 

Why can’t I just be ”normal”?

 

Right now, I only have a dull ache in my tummy but I am afraid of what is to come. People can only understand this fear if they suffer from the same problem, or if they live with a person who has coeliac disease. Eating gluten does not mean a trip or a few trips to the loo for us. It means that we are damaging our bodies, and the after effects can be devastating. For some of us it means that we literally lose function for hours or days. It means that we have failed or have been failed, even if just for once. It means that no matter how careful we are, we can never be sure that we will not feel the horrible and familiar sensation of getting gluten in our system, because we can never be fully in control.

 

Today was a harsh reminder of that for me.

 

 

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Moving on to corn now? Gluten is not evil, and neither is corn.

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Just this week, I wrote an article about food-fear mongering.  The two topics I dealt with were the fact that gluten is being labelled as harmful for everybody, and the new rumours about corn.

”Why we shouldn’t buy into all food fear campaigns’

https://candiesglutenfreeland.wordpress.com/2014/03/11/why-we-shouldnt-buy-into-all-food-fear-campaigns/

Coincidentally, today I came across an article titled  ‘Is Corn The Next Gluten?’ by Dr. Amy Myers http://www.mindbodygreen.com/0-12939/is-corn-the-next-gluten.html.

This article is exactly what I was writing about. It talks about gluten being an inflammatory food, and it goes on to say that adherence to a gluten-free diet is enough to heal the gut and halt systemic inflammation. The thing it, this article is NOT written about people diagnosed with coeliac disease or gluten sensitivity, but for the general population, including perfectly healthy individuals. It continues to spread the notion that gluten is bad for everybody.

Furthermore, in my last blog entry, I stated that a 2012 study published in Plant foods for human nutrition,  http://www.ncbi.nlm.nih.gov/pubmed/22298027, showed that in some coeliacs, as a rare event, maize could induce a coeliac-like immune response by similar or alternative mechanisms to those used by wheat gluten peptides. This study is relevant to people with coeliac disease only, but is sadly being applied to perfectly healthy individuals by people out to make money out of this new trend.

The author who happens to be a doctor, is using fear to cause people to make irrational decisions, all the while promoting her ebooks, eCourses, soon to be released book and food-based program. As I said last time, fear sells. The author of this article also uses extreme extrapolation of the results of real studies to give credit to her claims.

Here are a few points:

1. The article talks about ‘leaky gut syndrome’– there is absolutely no evidence that eliminating certain foods like gluten or corn have any benefit on this ‘condition’ that is yet unproven to even exist.

2. It states:

”Remember that what you eat also eats, and be aware of what that is. Unless certified as grass fed, poultry and livestock are fed corn.Besides the fact that grain-fed meat comes from a less healthy animal and is extremely deficient in nutrients, the seemingly insignificant content of the animal’s diet can be enough to trigger an immune response when you eat that gluten-free hamburger or have your morning nonfat yogurt. ”

Seriously, does anybody actually believe that if an animal eats gluten or corn it will make it’s way into our hamburgers and yoghurt? The animal digests the food and it is broken down. I am surprised a doctor would actually allude to this. But again, fear sells.

2. Moreover it states

”to many people’s bodies, the protein in corn can look like gluten, and they cross-react to it”.

This is false. As I said earlier, it had been proven that in some coeliacs, as a rare event, corn could induce a coeliac-like immune response. The study the author referenced to her claim is new (January, 2013), and concluded that if a coeliac is not responsive to a gluten free diet, reasons may be cross reactivity to certain foods, or gluten cross contamination. These findings may explain why around some people with coeliac disease do not get complete relief of symptoms even when on a gluten free diet. In fact it was not only corn, but several foods were found to cause a reaction in the lab setting including cow’s milk, milk chocolate, the milk proteins: milk butyrophilin, whey protein and casein, yeast, oats, corn, millet, instant coffee and rice.

Again, the author of ‘Is Corn the next Gluten” used this study as a reference but chose only information relevant to her article and applied the results to the general population. She is inadvertently encouraging people to eliminate foods from their diet without a proper diagnosis by first encouraging people to eliminate gluten, and then to eliminate corn if symptoms persist. I still have not understood why corn was targeted from the many foods listed in the study she referenced.

3. ”Gluten is only one of several molecules that imitate our own body tissues and contribute to autoimmunity”.

Yes, gluten triggers auto-immunity- in people with coeliac disease.

Some people may have an allergy or an intolerance to corn, and some coeliacs (extremely rare) who do not respond to the gluten free diet might be having a reaction to corn, but there is no evidence that corn is unsuitable for everybody.

Now, I know that many people may avoid corn since alot of it is GMO. I will not enter into a discussion about GMO because since there has not been independent testing on these GMO grains, it is still a subject of debate as to whether these are safe or not. If anybody is going to argue that corn is unsuitable for human consumption because of GMOs, there is always the option to buy organic. But that is a personal choice.

This spreading of fear should stop!

I strongly suggest that if anybody suspects that their symptoms are the result of a particular food, they should follow the advice of their doctor or dietitian. Eliminating certain foods without guidance can be risky, because the symptoms could be the result of some other condition that would need to be investigated. This is especially true with gluten.

For more information about leaky gut syndrome visit http://www.nhs.uk/conditions/leaky-gut-syndrome/Pages/Introduction.aspx

Reference:

A. Vojdani and I. Tarash, “Cross-Reaction between Gliadin and Different Food and Tissue Antigens,” Food and Nutrition Sciences, Vol. 4 No. 1, 2013, pp. 20-32. doi: 10.4236/fns.2013.41005.

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