Tuesday, January 24, 2012

Gluten illness: should you bother to get tested?


Francene asks: “Do you suggest getting tested before going gluten free? I basically gave it up and feel 100% better. Never thought of getting tested.”

This is such a good question.  Should you bother to get tested for celiac or gluten disease? Or should you just go straight onto a gluten-free diet to see how you feel? The answer is the infuriating “yes and no!”

Scenario 1.
As an adult, living alone, and not having any children, if you choose to go gluten-free lifelong and have zero gluten, then there is no need to ever get tested. Whatever your test results, it will not be relevant to other people, and you are already putting your self on gluten-free diet as if you had celiac disease or gluten sensitivity.  End of story.

Scenario 2.
However if we are talking about a child within the family, then the parents are making a big decision for that child on a guess. If the child has ill health, then it is a good idea to get the medical work-up to see what the problem is. Gluten and celiac disease is only one of many causes of ill-health. There can be other things going on that would have a different treatment.

My patients.
In my clinic, it is my experience that parents really do want to have some sort of testing for their children prior to embarking on a gluten free diet. Finding celiac disease or gluten sensitivity in that child by appropriate testing has implications for the wider family. This gluten problem it runs in families and other family members would need to be tested. 

So I am a great tester. I test everybody. Without this testing, you often cannot get a buy-in to the gluten-free diet by the medical profession, and skeptical relatives (especially the dads).

Life-long gluten-free.
Once you go gluten-free, we are talking about zero gluten life-long. This is a big decision for many people to make and having a positive test result makes this a bit easier. People with positive blood tests find it easier to commit to a gluten-free diet.

My ideal world.
Having said all of this, in my ideal world, there would be no gluten in the human-food-chain, and therefore no need to do any testing because no one would have gluten-related-illness. This gluten-utopia is a couple of generations away yet! My mission is to blaze the trail there. The journey begins with raising global gluten awareness and speaking about the possibilities of “Gluten: ZERO Global”.

Dr Rodney Ford
http://www.DrRodneyFord.com

Thursday, December 1, 2011

Oats - can they be part of a gluten-free diet?


There has been controversy for years as to whether it is okay, or not okay, to eat oats if you are gluten-sensitive.

Clinical studies have now provided very good evidence that oats do not damage the gut mucosa in most people who have coeliac disease.  Following this, guidelines from some Coeliac Societies now accept that moderate amounts of oats can be consumed by most coeliacs without risk.

Many experts concerned with coeliac disease have now concluded that oats are safe for coeliacs, as long as they limit their consumption to amounts “found to be safe” in these research studies.  This quantity is up to one-half cup of dry whole-grain rolled oats per day.  Of course, any oats that are consumed need to be free of any contamination from other grains.

Half a cup of oats each day is usually okay

Here is some of the information that this opinion is based on:

A study in Finland looked at 52 coeliacs who were in remission and who had been on a gluten-free diet for more than a year.  They all had a duodenal-biopsy, then they ate about 50 grams of oats (half a cup) per day over the next six months. Finally, they had a second biopsy.   None of the people had any villus damage .

Your gut can heal whilst eating oats
Another group studied 40 newly diagnosed coeliacs in the same way.  As expected, their initial biopsy showed significant villus damage (this was of course because they were still on a gluten-containing diet until they began the study). These people started on their gluten-free diet as well as eating their 50 grams of oats each day for 12 months. At the end of the year, their biopsies showed no damage to their villi. The meaning of this study was that their damaged villi were able to heal while eating oats.

A few people get unwell eating oats
However, other studies have found that not all people with coeliac disease are able to tolerate oats. Especially, those who also have dermatitis herpetiformis.  Researchers report that although oats are well tolerated by most coeliacs, they did find a few exceptions.  Several people recounted initial abdominal discomfort and bloating.  A few patients have been found to eventually develop total villous atrophy during an oat challenge.

Yet another study has investigated 20 adult coeliacs who were in remission, to see if they could eat even larger amounts of oats in their daily gluten-free diet.  They consumed about 100 grams (one cup) of uncontaminated rolled oats in their daily diet for  over a year.  They were tested four times during the study period.  This included small bowel endoscopy and blood samples.  They experienced no gut symptoms.  Also, there were no adverse effects seen in small bowel histology or in their blood test results.   The conclusion was that the vast majority of adults with coeliac disease could include large amounts of rolled oats in their diet without problems.
   
Oats have also been studied in children.  A group of ten children with coeliac disease were investigated at the time of their diagnosis.  They were put on a gluten-free diet but they were also eating about 25 grams (quarter of a cup) of rolled oats each day.  After six months they were tested again.  There was improvement in both their small bowel histology and their tissue transglutaminase antibody results.
  
Children tolerate oats well
However, there is still a word of caution.  Oat proteins have been shown to trigger the immune response of cells taken from coeliac people.  Therefore, the long-term effects of oat cereal added to a gluten-free diet in children still need to be determined.

Oats are useful fibre
The ability to use oats in your diet gives an important source of fibre as well as other important nutrients.  This is very important in children who have other food allergies.  If you are also allergic to cow’s milk and eggs, then going gluten-free is a big task.  Therefore, if oats can be tolerated, this makes food planning just a little bit easier.

Each person will have to work out whether or not they can tolerate oats for themselves.  This needs to be determined both clinically and with follow-up blood tests.

Finally, some gluten experts have expressed some further concerns about oats.  These are:

Some food chemistry research studies suggest that avenin protein in oats does have toxic properties.
The purity of oat products in some countries is suspect.  Oats and oat products can inadvertently be contaminated with wheat.  This can occur during harvesting, milling and  processing.
There is a possibility that gut damage from oats takes longer than six to twelve months to show up.  Also, symptoms might not be readily apparent to the person.
The possibility that young children might have a higher cross-sensitivity to oats because of their relatively immature immune system.

These are real concerns.  It is important that gluten-sensitive people know about the oats story.  Whether or not they choose to eat oats, they should be under some sort of regular medical evaluation and supervision. However, the common opinion is that the long-time consumption of oats as part of the gluten-free diet is well tolerated among the vast majority of those with coeliac disease.


Dr Rodney Ford
Food allergy and Gluten expert
http://www.drRodneyFord.com

Thursday, October 27, 2011

5 different tests for celiac/ gluten/ wheat problems


Wendy says: “My daughter has had 2 negative results for coeliac but still has a major problem with wheat!  Are there other tests for wheat intolerance?”
My reply:
When she says "2 negative results for celiac" I do not understand the problem ...  because there are at least 5 different tests for celiac/gluten/wheat problems. And, none can completely rule out a gluten problem: the only way to see if gluten is truly affecting you is to go on a gluten-free diet for a year and see if you get better.  But get your blood tests first.
The 5 tests:
  1. Gluten blood tests: IgG-gliadin
  2. Tissue damage blood tests: tTG, EMA, DGP
  3. Gene test: HLA DQ2/DQ8
  4. Endoscopy: a small bowel biopsy whilst still eating gluten
  5. Skin tests, EAST/RAST: specific IgE tests for wheat allergy.
Each of these tests needs interpretation in the context of your current diet and symptoms.
We will help you through this at the Childrens Clinic |Allergy Centre, Christchurch.

Wednesday, October 26, 2011

Direct link: gluten and my brain


Erin Fitzgerald writes:

"I just wanted to tell Dr Rodney about my symptoms which may be of assistance for other cases. 

I have been unwell since my teenage years with all of the usual symptoms of gluten intolerance it was particularly bad for the past 11 years including diarrhoea every day. 

But my most disturbing symptom was fainting which was happening daily and ofter multiple times in the day. I had every test known to man with no positive results. Eventually I  went on a gluten free diet on my own accord and noticed an immediate ceasing of the fainting.

I initially thought this was because my diarrohea and associated malnutrition stopped however after accidentally eating a small amount of gluten and fainiting a few months later I realised there was a direct link between gluten and my brain. Possibily because I had suffered severe symptoms for so long.

I have searched for similar cases and never found any nor has any Doctors i talked to heard of a link between fainting and gluten allergy so I thought you might be interested.

Thank you for all your wonderful work."

Erin

Thanks Erin, I have similar patients. This is part of the Gluten Syndrome.
Cheers Rodney Ford 

Sunday, October 16, 2011

Tired all of my life - got no tests


A sad story - 31 years sick

I have been helping one of my patients dads. His name is Chris and he is 31 years old. I have been investigating his son - who was sick, tired and grumpy.  It turns out that his son is gluten sensitive.
But Dad also had the same symptoms! He said:
“I’ve been tired all my life - constantly tired and moody. I can't think or concentrate properly, I was questioning my intelligence level when at school and struggled with concentration.”
“I have done so many things to try and keep up my energy: being fit, drinking lots of water and eating the best I can. However, I was always lacking in energy.  I just thought that's who I am. It has been a constant battle for me. I never feel fresh.”
“I thought I was normal. And, yes, my bowel motions always loose, and I do get tummy pain now and then  - but I thought this was normal.  My sleep is shocking. I wake up lots of times sometimes with nightmares. I hate mornings because when I wake up I do not feel refreshed - I still feel tired.”

My comment 
Isn’t this is a sad story. His blood test have shown up celiac disease. He is about to have an endoscopy to prove this. He is desperate to go gluten-free. He feels that most of his life has been spent struggling.  If only he had sought help earlier and got the appropriate test for celiac disease. This is such a common story.
The message: anyone who has any ongoing symptoms that have not been appropriately diagnosed should have blood tests for celiac disease and  gluten sensitivity.

Dr Rodney Ford


Wednesday, September 28, 2011

A big “NO” for a gluten “homeopathic remedy”


I have been sent this query from one of my medical colleagues:

“Have you heard of this product? Apparently it's homeopathic. They make some amazing claims. I'm being asked about this and wanted to know if you had any experience/thoughts.”


My reply: “Yes, interesting stuff, however I remain the skeptic.

I have seen this product advertised on the Internet. I have spent some time looking at the website. They claim that this is a “one time treatment” and that once you have taken the course of capsules that you will be able to eat gluten from then on.

I think that this is most unlikely. I am surprised that they are looking at changes in the IgA-anti-gliadin levels.   This is the stool test from enterolab.   I do not have any experience using this assay.

I would be very surprised if someone with celiac disease could start eating gluten after a course of these tablets.

Their conclusion is: ”Although much  more  work  needs  to  be  done  to  prove  the  efficacy  of  this  remedy,   this  pilot  study  indicates  that  some,  if  not  all,  of  the  ingredients  in  this  preparation   may  be  useful  in  helping  the  estimated  the  20  million  people  in  the  United  States   who  have  Gluten  Intolerance.”

They are making a big claim with almost no data.  I would like to see this tested on someone with full celiac disease and see what happens to the celiac markers over a year.  I am sure that very few celiacs would agree to take gluten again.

I would not recommend this product for my patients.
Gluten does a lot of bad things and taking a homeopathic “remedy” for this seems fool-hardy.”
Stay off gluten - the message from me is go ZERO gluten - do not fool yourself with any "quick fix". "If it looks too good to be true - then it IS too good to be true." 

So it is a big “NO” from me.

Cheers Rodney

Sunday, September 25, 2011

Celiac nightmares


Newly diagnosed celiac disease.  Rick is 30-year-old.  No energy! He told me about his lifetime history "tiredness".  As a child, his parents called him lazy. This was because he just did not have the energy to do all of the things that he was asked to do. He has fought this by doing more exercise and eating healthy diet (but this meant more gluten!).  But he still feels so tired.  But he thinks he is normal!
Rick has been troubled with horrific nightmares. He has a sore tummy and runny stool. His brother is skinny, and his father has quit eating bread.
Rick’s blood tests show that he definitely has celiac disease. He will feel so much better on a gluten-free diet. He is excited to start the changes.
Did you know that about 1 in 50 people who are chronically unwell might have celiac disease, and many others have gluten sensitivity.

If you are sick, tired or grumpy - get a gluten test.
Dr Rodney Ford
http://DrRodneyFord.com