Shauna wrote to me today. She is concerned that there is little local belief in the diagnosis of gluten sensitivity. This is my reply.
Thanks for your comments. Yes, it is very frustrating when there is no absolute diagnosis for gluten sensitivity in terms of blood tests or tissue diagnosis. However, in the medical world, most diagnosis is made from symptoms alone, rather than from accurate tests. For instance, depression: people who are diagnosed with depression have symptoms, but no supporting evidence of blood tests or brain biopsy tissue.
It therefore becomes a matter of confidence in your clinical diagnosis of gluten sensitivity. The blood tests, particularly the IgG-gliadin, is a useful test for many people in diagnosing the problem. However it is not a great test. Many people have normal IgG-gliadin antibodies levels. Dr Ken Fine, in Dallas, has been measuring the stool IgA-gliadin, which he finds more accurate then the blood test.
You now have certainty in your diagnosis, with your daughter being so sick with a big gluten challenge.
You have done the right thing! You do not need to persuade other people. All you have to do is be confident in your own beliefs about gluten and the harm it does to you and your daughter.
I am delighted that you are now well again. Stay gluten-free and help me pass on the message about the potential harm of gluten to so many people.
Again thank you for your comment. It gives me great encouragement. Like you, many people criticize what I am doing, however I remain confident that gluten sensitivity is a huge medical problem that needs to be addressed by the medical community. It is my goal to bring the diagnosis of gluten sensitivity into the realm of mainstream medicine. If you can help in any way that would be terrific.
The comments that I am getting back from the Eczema book are heart warming. Parents are feeling so relieved that at last they can do something practical for that child who has been scratching, uncomfortable and in pain. I have found that parents desperately want a cure for their child’s eczema! After 25 years of experience looking after these children, I have found that for most, I can help.
My intention is to get their skin back to almost perfect - happily this can usually be achieved. However, there are no more secrets! I have now revealed all of this information in this book. The research offered in this book is from well-researched approaches to allergy and eczema.
Yes! Most eczema can be cured! It has a lot to do with what you eat (often it is gluten). You can find out all about this by reading the “Eczema” book.
Cindy wrote this to me: “First of all Dr. Gluten, you are fantastic!!!” (thanks for your compliment, Cindy) . “We are hitting a brick wall with our Doctor. We have found out that our son does not have celiac, but every time we ask our Doctor if he is gluten sensitive she says, "there is no such thing, you either have celiac or not".The blood tests you suggested she said are outdated.Could you explain please?”
The answer is “yes and no!”Your GP is correct is saying that the antibody test for gluten is out of date BUT this is ONLY true if you are strictly only looking for tissue damage of celiac disease.
Unfortunately, your GP does not understand that gluten can cause more than just celiac disease.If you are interested in gluten sensitivity (and I am), then the only test available right now is the IgG-gliadin antibody measurement.
An additional difficulty is this test is not available in Auckland, or most other centres in New Zealand or Australia.Cheers Dr. Rodney Ford
At least 60 food additives used in our foods which are questionable in terms of safety, or at worse, known to be harmful. This has been highlighted by a campaign- see the link http://www.additivealert.com.au/
These food additive colours are especially of concern are:
As a result of this research, these 6 colours are now being removed from ALL foods in the UK by the end of 2009. Keep your unnecessary food additives down as much as practical. Cheers, Dr Rodney Ford.
Did you know that headaches can be triggered by gluten? A few months ago I saw a young lady, 14 years old, with terrible headaches. Blood test showed up that she had celiac disease. Off gluten she is now completely better - no headaches!
Again, a mum has just written: “My son is gluten intolerant. He has been off of gluten for 20 days: his eczema has cleared up and his energy levels have improved, and he hasn't had a headache since. Then he had a large amount of gluten and 2 days later he woke up with one of his headaches.
I see quite a lot of children who have headaches and migraines when eating gluten. The headaches can come on the next day, some come on within a few hours. Some people have headaches as their main symptom. I write about his in my book “Full Of It!” Cheers Dr. Rodney Ford.
So many people who write to me want an “official diagnosis. They want “proof” that gluten makes them sick. However, whatever the blood test results, and whatever the endoscopy results, if you are sick on gluten – then stay gluten free anyway.
The Gluten Syndrome is a real entity. But that blood test that are currently available are not accurate. So be confident in your benefits of feeling great off gluten. Cheers, Dr Rodney Ford.
IgG-gliadin antibodies tests are not readily available from most labs in NZ and Australia. If you cannot get this test done (and celiac disease has been excluded by the other blood tests – tTG and DGP). Then, it is worthwhile trying out a gluten-free diet to see if you feel heaps better.
It is my experience that those who go ahead and have the IgG-gliadin blood tests (if you can get it) take the gluten sensitivity issue quite seriously. They will then commit to a stricter gluten-free diet. They are more likely to get well. If you are not fully committed to gluten free, and still have some gluten, then you may not find the full benefits of gluten-free diet. Cheers, Dr Rodney Ford.
Hi. I have not written a blog for quite some time. This is because most of my activity is now focused on the forum. If you want to keep up with what is happening, then I suggest that you check in to the forum intermittently. This is the best way to speak with me and to the gluten-free community. Cheers Dr. Rodney Ford.
Please look out for the “food allergy and gluten free show” that is in Sydney in November (15-16th) this year. I am speaking both days. One presentation about “eczema and food allergy”, the other presentation on “the Gluten Syndrome”. See this link for more information:
Sally-Anne states: “I have a 2 year old who is gluten free due to his psoriasis, eczema, bloated tummy and general grumpiness. After attending your seminar in Auckland in the weekend I have decided I should get Adam diagnosed correctly. I have downloaded your information on blood tests but my GP refuses to order the tests as "there is a lot of controversy surrounding this". I was wondering whether there is another way around this, does the test need to be ordered by a doctor? Your help would be appreciated. My doctors think I am mad and that I should just wait until my son grows out of this phase. Thank you for any help you can provide”.
My response: Hi Sally–Anne Yes, you have met the "brick wall of coeliac disease". Most medical practitioners do not believe that gluten is ever a significant problem, except in coeliac disease. They are wrong, but it will take a generation of education to help them understand the more subtle aspects of gluten-sensitivity. In the mean time, just go gluten free for Adam and see how he gets on (or find a sympathetic person to help you – I will get a list of Auckland GPs who are willing to get the gliadin antibodies tested). Cheers, Dr Rodney Ford.
Kristine writes: “I would like to find a doctor who won't treat me like I'm crazy for following this gluten-free diet. Also, want to find a doctor who knows something about this gluten disease - to encourage me that I am on the right path.
For over two years now, I have been suffering from an array of symptoms. I started a gluten free diet on my own initiative - I am now feeling so much better!”
I reply: “Sorry that you have been so unwell and that you have not had support with the going gluten-free. Well done on taking the initiative of going gluten-free. The first thing that you need is to be confident in your diagnosis: you have The Gluten Syndrome. You will probably need to stay gluten-free life-long. You are likely to continue to feel better. You do not need more tests as you have been off gluten too long to make the tests useful. Now you can be happy with your increasingly good health”.
I hear this story heaps – please add your comments to the forum. Cheers, Dr Rodney Ford.
Catherine in Australia says: “Thank you sincerely for all the information”.
She is now interested in getting the blood tests done for her son – but she is not sure how to go about this.She asks: “Will any Doctor run these blood tests? If not, who can I see in Brisbane?
She also wonders if she has to be eating gluten to be tested, she says: “My son has been gluten-free for one week, -how long should my son wait now on a normal diet before having the blood tests?Thank you again, Catherine”
These are the most common question that I am asked.
What Doctor?
Well any doctor can write out the blood request forms, but many refuse to do this.Also you have to insist that the IgG-gliadin antibody test is done, but unfortunately, many labs refuse to do this test (they say that the gliadin test is not useful for making a diagnosis of coeliac disease – this is correct.But I am looking for gluten-sensitivity).So ask your doctor for ALL the tests, then ring the labs and find out which lab will test for gliadin antibodies (Not of caution, you do NOT want the DEAMIDADTED gliadin antibody test instead).
What if on gluten?
The tests are for ANTIBODIES – so it is fine to have been off gluten for a few weeks – he does not have to be eating gluten for the blood tests, but he does need to be eating gluten if he is going to have an endoscopy.
I hope that this helps. I do into all of these details in my book “The Gluten Syndrome” – I suggest that you buy it. Cheers, Dr Rodney Ford.
Amy asked me “We were wondering how many other people in NZ also suffer from gluten > intolerances? Do you know?
Yes I do! One in every ten people are affected. So that means of the 4,000,000 people (4 million), there will be 400,000 people with The Gluten Syndrome or coeliac disease. Sadly, most are unaware that they are suffering from eating bread. Cheers, Dr Rodney Ford.
People now recognize me as one of the word experts on gluten, and the instigator of “The Gluten Syndrome”. I have spoken on “The Gluten Syndrome” extensively in New Zealand, Australia and the USA, on radio, TV and newspapers.
Everywhere I speak, people come up to me and say “You’ve got to get on Oprah and tell the world about the gluten problem.” Since then, lots of people have emailed to Oprah and sent her copies of my books.
So I am now saying “Yes!” “Please help get me on Oprah so I can help even more people”. I passionately believe that everyone needs to hear about The Gluten Syndrome. Soon Dr Rodney Ford will be on Oprah. Cheers, Dr Rodney Ford.
This book tells you my discoveries and secrets of treating eczema that I have found over the last 30 years in researching food allergy. And guess what! Gluten has a large part to play in causing your eczema. You can buy my latest book for less than a dollar per years of my research! Good value I think! Our first print run is limited, and already selling quickly.
Lots of people are writing kind comments and words of support. They are also asking if they can help in any way. Well, yes you can!
As you know, my goal is to tell the world about the potential harm of gluten. We are looking for “ambassadors” throughout the world. If you are interested let me know.
The sorts of thing that I envisage are:
* Encouraging your local library to hold our books. * Offering local community newspapers some local gluten stories backed up by my newspaper columns. * Inviting me to speak in your city (when I next do a USA/Canada/Australia tour). * On-selling our books (with commission) to your local networks. * Joining out "Doctor Gluten Forum", and exchanging information and encouragement.
What do you think? Do you have other ideas? Thanks and best wishes. Cheers, Dr Rodney Ford.
The sad thing is that most of my medical colleagues are using a dinosaur test to look for gluten harm. They insist that the ONLY evidence of gluten damage is an abnormal small bowel biopsy. This is thinking (or should I say non-thinking!) of the 1970-80 era. A “demarcation dispute” has arisen from a flawed premise. Because coeliac disease had been defined as “tissue damage from gluten”, the flawed logic arose that:
No gut tissue damage = No gluten problem!
This is not based fact or data. It is just based on prejudice. It is nonsense.
I challenge the gastroenterologists and paediatricians to a debate on this. In my clinical experience, for every one coeliac diagnosed, there are another 10 children suffering from the affects of gluten but who do not have coeliac disease. They have The Gluten Syndrome. What do you think? Cheers, Dr Rodney Ford.
In New Zealand it is Coeliac Awareness Week (24 – 30 May 2008). The theme this year is “Are you 1 in 100?” The purpose is to increase awareness of this coeliac disease. But I ask “Are you the 1 in 10?” – my research shows that at least 10% of the population are suffering from the Gluten Syndrome. Get a gluten check-up. Get your blood tests. Cheers, Dr Rodney Ford.
I had an email today from someone saying that “I've had the run around for a couple of years now!” This is yet another story of symptoms ignored, blood tests refused, and blood test results wrongly interpreted.
This stems for old-fashioned beliefs and out-of- date information of most medial practitioners about gluten. Gluten research is a rapidly moving area and not many people understand the subtlety of gluten reaction.
I believe that is the consumer of health services (that is you!) who will educate the medical profession. A survey that I have just published on the “Forum” shows that most people who are gluten-free do NOT have celiac disease. Enjoy being well again on your gluten-free diet. Cheers, Dr Rodney Ford.
A mum asks: “A relative is a pediatrician, and he was rather skeptical about Enterolab tests. He wants to know: how are the tests done? how accurate are they? what research studies are they based on?”
Could you give me some more "doctor" insights as to why you say the testing is excellent? My kids' doctor says that blood tests are the only way she and her GI's are familiar with in order to find the antibodies. But we know that they most of the times can't be detected that early. But stool testing should work too, right?”
Enterolab (www.enterolab.com ) is a lab in Dallas Texas, USA. The Enterolab tests look for IgA based antibodies in the stool (IgA-Gliadin, IgA-casein, IgA-tTG). They can be detected and seem to be clinically relevant. The IgA antibodies get produced in the gut mucosa in response to gluten reactivity. I am about to start using this test in my practice.
From my discussions, and having seen the research results, I am convinced that they are a very useful test. To date, the research data has not been published – so these tests are still regarded as experimental.
The bigger issue is the debate between celiac disease and gluten sensitivity (the gluten syndrome). Medics remain reluctant to make a gluten-sensitive diagnosis – but eventually the weight of evidence will be so high that they will have to make a change. Cheers, Dr Rodney Ford.
I have been in the USA giving some presentation on The Gluten Syndrome. I ate at a lot of restaurants and cafes. Most had only a sketchy idea about gluten-free foods. Often, the staff was unaware of the word “gluten” and had no idea that it could cause a problem.
Many of the gluten-sensitive people who I talked to were not very confident about going out to eat – they did not trust the restaurant staff. It seems that many places in the USA have a long way to go to understand these serious gluten issues.
Thank you to the brave people who have been to use the “Forum” - I will be commenting on their issues later today. As more and more people use this “information exchange” the more useful it will become. Eventually your searches on this website will bring up a huge amount of rich material. The forum is where I will be answering most of your questions. So, please ask your questions through the “Forum” – other people can also respond to you. Best wishes, cheers Dr Rodney Ford.
The Doctor Gluten FORUM is now the place to exchange ideas and questions. I encourage you to use this. I am totally overwhelmed by people sending me emails (I get thousands!). So many that I am unable to answer you all personally. However, by you write via the FORUM, I can help more people as everyone can read your query/comment and learn more from my response. Let us see if this works! Cheers and thanks, Dr Rodney Ford.
Scott asks: “I am over 40 years old.I was diagnosed with coeliac disease about 6 months ago.My question is: could I have had coeliacs all my life and the symptoms only showed up now? Or do you just develop this disease out of the blue?”
This is a great question - yes, many people can get the gut damage of CD without many symptoms.So you could have had CD for years and years, but just not noticed it until now.
Yes, you can develop CD at any age.It tends to creep up on you.People will always have a legitimate excuse for their symptoms.It is hard to recognise when you get sick.
It is my policy to tests everyone with the slightest suspicion of possible CD or gluten sensitivity.Yes, great question.Cheers, Dr Rodney Ford.
Eddie asks - hi ... thanks for offering a great site for us ... I have a question about spelt bread. I have celiac disease and trying to eat right. Is this bread considered OK? Thanks.
Unfortunately, Eddie, Spelt DOES contain gluten, but in lower amounts than standard wheat.But enough gluten to cause you trouble.Yes! Spelt flour is off the gluten-free menu. Oddly, buck-wheat is gluten free. Whoever thought up these names! Cheers, Dr Rodney Ford.
I saw a 10 year old boy today. But 4 years ago when I first saw him I had suggested that he go gluten-free. But dad had resisted. His dad said “I thought that this gluten thing was a whole lot of nonsense.” (He actually used a stronger word!).
I saw a girl, Emma, 4 years old last week. She came to see me because of very itchy skin. Blood tests that came back today show that she has celiac disease! Yes! Eczema can be the first sign that you are reacting to gluten. I believe that all eczema children should have blood tests for gluten Cheers. Dr Rodney Ford.
Now when Emma, age 3 years, has any gluten by mistake she gets a sore tummy. Last month she had a ginger biscuit. She said “the biscuit hurt my tummy”. After 3 hours of having the biscuit she began to have the sore tummy pain and then became quite unwell with nausea but she did not vomit this time.
It is interesting that when she presented to me and I diagnosed her with coeliac disease, she did not have gut symptoms. But now when she has gluten it hurts her tummy. I see that a lot.
Adverse reactions to gluten are becoming a frontline diagnosis. A patient of mine last week asked me if her GP in a busy city practice would be sympathetic with her diagnosis of The Gluten Syndrome. I said “Yes!”
It has been my experience that more and more GPs are beginning to take notice of the hundreds of thousands of people who claim that they are at last feeling better – since going off gluten.
I encourage you to tell your GP about your experiences. Only with patient feed-back can your GP learn about this phenomenon. Yes, please tell your doctor how great you feel off gluten.
As you can see, we have launched an upgrade to our Doctor Gluten website. We have had half a million visitors so far. I am sent hundreds of emails each week from all over the world about all sorts of gluten issues. Thank you for this fantastic activity. We have developed this new website for your ease of use. Please have a good look. There are heaps more articles and lots more information. We have grouped stuff that will be easier for you to find.
Please tell us what you think. Please give us your feed-back. Do tell your friends. Thanks for your support. I invite you to join as a member. Cheers. Dr Rodney Ford.
I have been flat out getting this “new” website off the ground. I have been pondering how to get the gluten message out. So … YouTube here I come. Can you check out this link?
If you like it, if it is helpful, then tell your friends about it! Because 1-in-10 react to gluten and do not know it! This video clip is only 2 minutes. Please “rate it” and make a “comment”, and also pass on the link to your friends. Cheers Rodney Ford By the way, what else do you want to see as a video clip?
The Gluten Syndrome is affecting at least 10% of the population. The gluten story is compelling. I have just received this comment - "Rodney, EVERYONE needs to take on board what you are saying. As someone who has been significantly affected by Gluten, I think the issue cannot be overstated. Overall ‘gut’ issues are very poorly understood by the general population. All the best. John."
Last week in Los Angeles, I had another discussion with my colleague and friend, Prof Ron Harper. He is “Distinguished Professor of Neurobiology, David Geffen School of Medicine at UCLA, Los Angeles, CA”. We have discussed on many occasions that gluten can harm the brain and neurological tree, in susceptible people. It could be the underlying trigger for many neurological phenomena.
I had the privilege of presenting “The Gluten Syndrome” to a gathering of scientists. They were intrigued. Some groups are now likely to take up active research on the link between gluten and brain disturbances.
Since the launch of The Gluten Syndrome concept, things have been crazy for me. I have had overwhelming support for the name “The Gluten Syndrome”. People are telling me that they now have a name for their condition. People are asking me questions from all around the world. I am trying to answer you all.
Why the dispute? Should only coeliacs be on a gluten-free diet? Why is there a misunderstanding between “Coeliacs” and those with “Gluten sensitivity”? Why does the medical profession recognize coeliac disease but ignore other gluten reactions?
“The Great Gluten Debate” focus is to answer these questions and show how this “gluten divide” happened. With more understanding of each other’s point of view we should be able to join forces and be part of the same team.
I am excited! So many more people can be helped. We launched The Gluten Syndrome on 15 Sept 07.
The Gluten Syndrome is hot news. It is the diagnostic name for gluten sufferers. At last there is a legitimate diagnostic label for the millions of people who get sick when the eat gluten.
You can watch this on the TVNZ News. Just click on this link to watch this news item on The Gluten Syndrome: Gluten book to spark allergy debate
You can see gluten-free stuff everywhere. An explosion of gluten free products is now available. But why? Because thousands upon thousands of people recognize that they are made sick by gluten.
See this article in “The Washington Post”. It reports, “According to a study last year by MarketResearch.com, U.S. retail sales of gluten-free products have been growing at an annual rate of 27 percent since 2001. By 2010, gluten-free products are predicted to be a $1.7 billion industry, says MarketResearch.com's Larry Finkel.”
Jodi Engelson, a senior research scientist at Cargill said: "There is clearly a market opportunity for gluten-free foods. For the patients who suffer, the diagnosis rate is increasing. In response to this, we have witnessed over a 100 per cent increase in gluten-free products over the last seven years."
Anne writes: “The kinesiologist says that he could "cure" him, my son of celiac disease (he is 2 years old). I find this statement absurd! However, I would be interested to hear your opinion. I am aware of people having acupuncture etc to relieve bloating/pain symptoms of celiacs, but a cure seems highly optimistic. (My son is completely symptom-free on his gluten-free diet as recommended by you after endoscopy). Have you ever heard of this?”
I reply:
Thanks. I also think this is absurd! Yes, I have seen such claims before. Recently, a 12 year old girl was claimed as "cured" - but when I arranged blood tests for her, it showed up that she was very sick again - having gone back on gluten on a false promise of cure.
In my opinion these “cure” claims are irresponsible! Challenge such people to supply you the data on what their claims are based upon. There can be no credibility without good data.
I saw a family today who has been experimenting with going gluten-free. They have heard about gluten and that it can make you ill. Ruby, their 8 year old girl, has a sore tummy and she gets tired and cranky. She proudly said to me “I’m half off gluten!”
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