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The Gluten Syndrome—Gut, Skin and Brain

Celiac.com 10/22/2008 - This article appeared in the Autumn 2007 edition of Celiac.com's Scott-Free Newsletter.

The Gluten Syndrome refers to the cluster of symptoms that you experience if you react to gluten.  Gluten can affect your gut, your skin, and your brain.  It applies to any reaction that is caused by gluten.  It includes celiac disease, along with the myriad symptoms that can be experienced throughout your gastro-intestinal tract in response to gluten.  It also includes many other symptoms that do not stem from your gut.  These include brain and behavior disorders, irritability and tiredness, skin problems, muscular aches and pains and joint problems.

The effects of gluten are wide ranging and are now brought together under the term Gluten Syndrome.  In most instances, a simple blood test (the IgG-gliadin antibody test) can identify those people who are affected.  

10% Affected by Gluten
The Gluten Syndrome affects about one in ten people.  However, most people who are affected are unaware that their life is being hindered by gluten.  The gluten symptoms are most likely to be caused by damage to the nerves and brain.  The earlier the problem is identified, the better the response to a gluten-free diet will be.

Tummy Pains and not Growing
Jonti is 3 years old.  His gluten story is typical.  His mother brought him to see me because she was concerned about his poor growth, and his distressing abdominal pains.  His blood tests showed a high gluten test (His IgG gliadin was 94 units.  This test result is usually less than 15 at this age).  Other tests, including the gene test for celiacs, showed that he did not have celiac disease.

I suggested that he go on a gluten-free diet.  Within days he began to eat better, and his tummy pains went.  He is now growing again on a gluten-free diet.  His mum wrote:

“I really haven’t found the gluten-free diet that difficult.  I found people to be incredibly helpful actually, both in the supermarket and in restaurants.  In the supermarket there is a lot of normal type food that is gluten-free and it is all clearly labeled that it is gluten-free.  Even if you go to the delicatessen department they will tell you which luncheon sausage is gluten-free.  There are gluten-free sausages all labeled and it’s normal food that tastes great.

For the baking mixes and bread mixes, you don’t even have to go to the specialist health food shops.  I go to no other shops other than the supermarket to get food for him and I haven’t really found it that difficult.”

Amazed how Jonti has Adapted
I have been amazed, actually, by how easily Jonti has adapted to the gluten-free diet.  I tell him it is special food for him and that it won’t hurt his tummy.  We have got nice biscuits from a bakery and he is allowed to choose which one he wants for morning tea.  He still has normal foods like chips and sweets.  He is not missing out and the other biscuits he hasn’t even really asked for.  The only thing is the bread!  I have yet to perfect the making of the bread.  Toast is about the only thing he asked for.  You can get specialist cornflakes and cereals, porridge he loves, again, at the supermarket.  It has been surprisingly easy actually

I’m so pleased that he is now well again.  Gluten-free has made such a huge difference.”

The Main Points:

  • The Gluten Syndrome refers to the cluster of symptoms that you experience if you react to gluten.  It can affect your gut, skin and nerves.
  • Medical practitioners accept that gluten causes celiac disease (gut damage) but often resist the notion that gluten can cause a wider spectrum of illness.
  • Celiac disease, gluten intolerance and gluten sensitivity are all part of The Gluten Syndrome.
  • Rapidly accumulating medical evidence shows that gluten is now creating a massive health problem throughout the Western world.  However, woefully few people are aware of the catalogue of harm that gluten is causing.  About one in ten people—that is millions of people—are affected by The Gluten Syndrome.
  • Gluten could be responsible for one-third of all cases of chronic illness and fatigue.  People suffering from these conditions are currently just tolerating their symptoms, unaware that gluten is the culprit.  This is because the link to gluten is not yet recognized by the medical community.
  • Gluten-containing products are being added to our food chain in increasing amounts.  Our wheat is being engineered to have even higher gluten content.  This gluten overload is occurring without our communities being unaware of the harm that this is causing.
  • Gluten can cause malfunctions of the brain and neural networks of susceptible people.  The incidence of mental, neurological and brain disorders is on the rise.  However, the diagnosis of gluten-sensitivity is seldom made.
  • The community is already embracing the notion of gluten-sensitivity.  More and more people are opting for a gluten-free lifestyle.  These people are looking for a term to identify their illness.  Their search is over.  They have been affected by The Gluten Syndrome.
  • A strong gluten-free movement is developing globally in response to the knowledge that going gluten-free can be so beneficial to so many people.  What has been missing up until now is a name that captures the gluten problem.  The missing name is The Gluten Syndrome.

Get Your Blood Tests

The Gluten Tests
Gluten is a protein that is found in wheat grains.  This protein has a number of components, one of which is called gliadin.  People who get sick from gluten are usually reacting to the gliadin component.  

You are a Long Tube
To understand what the blood tests mean, first you need to know a little more about your immune system.  It is the job of your immune system to protect you from the outside world.  It protects you from the invasion of microbes (viruses and bacteria), and it also protects you from the toxins and poisons in the food that passes through your gut.  Your gut is a long tube inside you that travels from your mouth to your anus.  This is your gastrointestinal tract, also called your bowel.  Even though it is inside your body, the contents of this tube are still on the ‘outside’ from your body’s point of view.  Lots of your immune cells coat the skin (called the mucosa) of this tube and work hard to protect you from anything that might prove to be harmful.

Gluten (Gliadin) can be Toxic
Gliadin, the toxic component of the gluten protein, is one such harmful substance.  Your immune system defends your body strongly against gliadin using weapons called antibodies and the gliadin is repelled.  The outcome of your immune system’s fight against gliadin is the production of antibodies that are specifically targeted towards gliadin: these are called anti-gliadin antibodies.

Gliadin Antibodies
Anti-gliadin Antibodies (commonly called the IgG-gliadin antibody) are weapons that have been made specifically to fight against gluten in the diet.  Remember, gliadin is a component of the gluten protein.  This antibody is very sensitive.  It is made very specifically by your immune system to fight against gliadin.  However, a high level of this antibody does not necessarily mean that you have any gut damage, so it is not very accurate in assisting the identification of patients with celiac gut damage.  On the other hand, tests for this antibody are nearly always strongly positive in people with celiac disease who are not on a gluten-free diet.  Once people are placed on a strict diet, these antibodies will fall to normal levels within a period ranging from few months to a year or two.

Gluten Tests Not Getting Done
There is a problem.  Unfortunately, this gluten blood test (the IgG-gliadin antibody test) is no longer available from most community laboratories.  This year many laboratories have decided to discontinue this test.  Their opinion is that it is worthless (for detecting celiac disease).
I disagree with their decision.  My latest data shows that huge numbers of people remain undiagnosed with serious symptoms because of the misinterpretation of this gluten test result.  At the moment it is difficult to get the medical labs to do your gluten test.  They are unwilling to consider that gluten causes a wide spectrum of illness that has been written up in the international medical literature.  They have turned a blind eye to the problem.  If you can’t test for gluten reactions, then you will not be able to make the diagnosis!

A Diagnosis at Last!
Mandy wrote this letter to me: “Hi Dr Rodney Ford, for many, many, years I have been to doctors complaining of a bloated tummy, extreme cramping pains, and diarrhea (to the point I had no time to get to the toilet).  I have recently had some blood test for celiacs done by my GP.  My results showed: the tTG was negative; and the IgG-Gliadin result strongly positive.  He could not explain it to me, but he said that I did not have celiac disease.”

“I have no idea what these tests mean.  Although I got no answers, I had to try something.  I was at the end of my nerves!  My bad health has always been upsetting my social and working life.  I often have to rush home to the toilet.”

Amazing on a Gluten-free Diet
“So I decided to try a gluten-free diet!  I have now been gluten-free for a month.  It is amazing! Already I feel like a different person!  No more bloating, just the odd stomach cramp.  Also, all my headaches have gone.  But I still feel really tired and not sure how to overcome this.  Can you help me please by explaining my blood test results—and should I have anymore tests?  What else I can do to help myself?   I hope you can help me Dr Ford.  Gluten, up to now, seems to have made my life a misery.  Even though I feel so much better already, I want to get even better.  Kind regards, Mandy.”

The Gluten Syndrome
I replied: “Thanks.  I am glad that you are feeling a lot better off gluten.  From your story and your blood test results, you have gluten-sensitivity.  You do not have celiac disease (your low tTG level shows that you do not have any gut damage from gluten).  But you are still getting sick from gluten (your high IgG-gliadin level shows that your body reacts to gluten).  The good news is that it takes many months to get the full benefits of a gluten-free diet.  I expect that you will continue to feel better over the next few months.  You should be taking some additional iron and a multivitamin supplements because you will be relatively iron deficient—that will be making you tired.”

The Time has Come
The history of science and medicine is littered with vehement arguments against any new idea that runs contrary to traditional beliefs.  Ironically however, it takes new ideas to make progress.  It was George Bernard Shaw who said that “The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself.  Therefore, all progress depends on the unreasonable man.”

Thousands Convinced
Many people are joining the ranks of the gluten-free.  There are thousands of people like you who have read this information and who are concerned about how gluten might be affecting them; there a millions of people who are sick and tired of being ignored and who are looking for more energy and vitality; there are the practitioners in the field of complementary medicine who are aware of the concept of gluten-sensitivity; there are the laboratories who have developed the gliadin antibody test and know that their tests are specific for gluten reactions; there are the gluten-free food manufacturers who have recognised that there is an ever-increasing demand for gluten-free products; there are the networks of people in the health food industry who appreciate the value of high-quality food and a gluten-free diet; and there are the supermarkets and grocery stores that are sensitive to the demands of their customers.

Who Might Oppose this Trend?
As previously discussed, medical practitioners are wary of overturning tradition.  They do not want to be seen as alternative and want to avoid acting outside of the recommended clinical guidelines.  In addition, there are the grain-growers and the bread-makers who make their living from gluten, and the pharmaceutical companies who make their living from the sick and unwell.  

Bad Behavior on Gluten
Kimberley is 12 years old.  She has The Gluten Syndrome and her behavior gets disturbed with gluten.  She does not have celiac disease but she does have a high gluten test.  (Her IgG-gliadin level was 55 units—It should be less than 20.)

Her mum said: “It is interesting about how behavior troubles are linked to gluten!  Our youngest, Kimberley, is now 12 years old.  She had her IgG-gliadin measured and it was high.  She was clearly a lot better when she was off gluten.  However then she decided to ‘try’ gluten again.  Rodney suggested a small amount but she went for it—big time!”

By the end of a week, two other parents had asked what was wrong with her.  Another parent asked “what on earth’s the matter with her” she seemed so different and stroppy.  She admitted she felt “absolutely awful” but really didn’t want to admit it as she knew it meant she’d have to completely give up gluten.”

Anyway, after a lot of talking, she agreed it wasn’t in her best interests to eat gluten.  From that day she has been gluten-free ever since, with the odd very long envious glance at French bread!  With our support she’s very compliant with being GF now, which I think is remarkable for her age.  Clearly she now understands and gets the benefits of GF.  But I was really shocked at how affected her behavior was after a reintroduction of gluten.”

Could You Have The Gluten Syndrome?
One in every ten people is affected by gluten.  If you have chronic symptom (feeling sick, tired and grumpy) then you should get checked for The Gluten Syndrome. 

Celiac.com welcomes your comments below (registration is NOT required).



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17 Responses:

 
Ann Nicosia
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said this on
24 Oct 2008 7:12:50 AM PST
Excellent article. I have 10 members with celiac disease and 7 or 8 with gluten sensitivity. Some Doctors don't recognize this and I would like a printed version of this article. Great Job!

 
A. Sommer
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said this on
03 Nov 2008 9:17:36 AM PST
Very well written article about problems that people can experience from Celiac Disease. T.You!

 
Paulette Feher
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said this on
05 Nov 2008 8:31:52 AM PST
This is an excellent, direct, and very informative article. It makes it easier for a Celiac or Gluten Intolerant individual to help family members and friends understand how important it is for them to completely abstain from gluten in their diet. It also heightens awareness as to how common this Gluten Intolerance is becoming in the western world.

 
L. Yankow, RN
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said this on
07 Nov 2008 11:08:18 AM PST
Enjoyed the article. Elaborating on adult symptoms would also be helpful as I also tested negative for celiac disease - I have many health issues including muscle and joint pains that improve when I fast and when I avoid gluten in my diet. I am 59 and when I was younger did not have chronic health issues, I guess my immune system was able to handle the toxins, but now it has caught up with me and I have had problems for the last 10 years. As an older adult celiac manifests itself in different ways than children who are affected at an early stage of life. Many adults refuse to believe they have a problem with gluten and do not see that they might. Opening their eyes to adult symptoms may shed new light on correct diet. Thanks for the great article.

 
Pauline Kelly
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said this on
12 Nov 2008 9:59:37 PM PST
I have celiac disease. I have constipation instead of diarrhea. I have been gluten free but still have the constipation. Can you make a suggestion in regard to possible help with it?
Thanks, Pauline

 
Kirt K
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said this on
15 Jan 2009 2:21:13 PM PST
I've been having GI issues along with additional aches and pains, mood swings for some time (more frequently and severe for the past 6-8 months). Had my first migraine ever maybe 5 months ago (never want another one). A co-worker and real close friend mentioned gluten. I began delving into it and noticed a lot of the symptoms were similar to what I’ve been experiencing. Not being keen on doctors and hospitals in general, I thought what is the harm in going gluten free for a while and monitor what happens. A lot of the symptoms diminished and was actually somewhat better.

The GI symptoms quickly diminished and decided it was time for a test. I tried a grilled burger (not a fast food meal either) for lunch and for the remainder of the afternoon and throughout the evening I had searing pains across my abdomen.

Upon returning home, I just laid on the sofa and went to bed early. The next day there was minor discomfort across the abdomen, but not serious. For lunch I went home and ate a gluten free lasagna frozen entrée, munching on gluten free pretzels and plan on eating a gluten free pizza for supper when I return home. I plan on purchasing more gluten-free foods after work and going back on it. Also planning on being tested for gluten intolerance (knowing full well that for the test to be accurate, I will have to indulge in meals containing gluten).

Whether coincidence or not, going gluten-free (even for a short time) has made me feel better. I’m sure a longer duration would be much more conclusive.

Fabulous article as are many that I’ve read along with many recipes I’ve accumulated and plan to start implementing.

 
elisia
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said this on
19 Jan 2009 11:30:36 PM PST
Helpful and insightful article.

 
Dar
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said this on
14 Mar 2009 4:54:12 PM PST
I have suffered from all of the symptoms of celiac disease and never knew what it was. I had an upper and lower GI and was found fine. After discovering celiac and its symptoms I went gluten free. I feel so much better. Thank you for these articles. The only thing I don't understand is why didn't my Gastroenterologist do a simple blood test to see if I had Celiac. I still had the same problems after getting the GI come back good. You would think they would check if you are allergic to gluten.

 
Joan McKeown
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said this on
23 Jul 2009 6:48:14 PM PST
My 81 year old husband was diagnosed with celiac after being miserably sick after Easter. We thought it was food poisoning, but someone in the family ate everything he did and weren't sick.After emergency tests we were told no gluten. What a difference. His 20 year long itchy back is cured, his eyes are better, his appetite is back [he was down to 118lbs.] Life is much better even though I'm learning to cook a different way.

 
Linda Ward
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said this on
09 Dec 2009 7:30:19 AM PST
I suffered with so called "fibromyalgia" for 12 years only to find out that I have celiac disease. I am on a gluten free diet now and feel 99% better. Years of not knowing has left my muscles weak but I have now started using weight machines and increasing my muscle strength. By the way, my symptoms were not with my digestive tract. I had muscle pain and weakness, joint pain, could not sleep, brain fog, extreme fatigue, etc. I requested that my previous doctors test for celiac before making a fibromyalgia diagnosis. I could go on and on. I thank God every day that I finally found the answer to my problem. I am glad that you are linking other problems besides just intestinal problems to celiac.

 
Jackie MacIlroy
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said this on
03 Mar 2010 9:48:26 AM PST
I have suffered for years oddities of health issues, some stories although not funny at the time, I can laugh at it now. However, over the last 10 years I have been treating my own symptoms of irritable bowl syndrom, fatigue, fibroblast, irritability, joint pain and much more. Although I had managed to treat them symptoms to a degree as the years passed my symptoms became more disruptive. By the grace of a great gastric intestinal specialist it was discovered that I tested blood positive for celiac and I am going for the biopsy this week. After reading these articles, which I might add that I have avoided reading until now, I am looking forward to a gluten free diet to start feeling better.

When first told I had celiac or gluten intolerance I didn't believe the doctors because I am obese and I have never met an obese celiac person, they have all been skinny and struggling with their health. Even though I struggle with health issue, skinny has never been my problem. But something I have not read anywhere here is my gastric intestinal specialist said to me: You just might find that the weight will resolve itself with a gluten free diet. That would be nice, but what would be nicer is feeling healthy. So I am looking forward to feeling better and getting better, as for the weight, well I have 70lbs off so far I am hoping that gluten free will only add to that number.

Reading these articles have been eye opening. Thank you.

 
Shirley Boberg
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said this on
11 Apr 2011 2:20:33 PM PST
I was not obese but it has been tough to keep the weight off. I have had joint pain (which docs attributed to all the lifting I do), breathing issues, allergies, and skin troubles as well as cankers. I have been on the GF diet after being tested with genetic testing for nearly a year and most of my symptoms have gone away. It is still hard to lose weight, but I am so much healthier. Oh and my hair was breaking off and looking horrid. Now it is almost back to normal.

 
Aria
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said this on
20 Jul 2010 1:24:03 PM PST
I have been gluten-free for 2 years now and am feeling much better now. Every once in a while I have an urge to eat something with gluten but stay away. I have epilepsy and calcium deficiency and think they are due to my gluten syndrome. Since I have gone gluten-free I no longer have pains in my skull and I don't have the achy joints. It is worth it.

 
Deridre Lennon
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said this on
12 Aug 2010 5:12:35 PM PST
Hello, I have had epilepsy for more then 20 years and I read where a gluten free diet will help me get my seizures under control because I have tried everything vns, brain surgery, aed's and nothing has helped me so I am praying that the gluten free diet will help me. And I just started taking fish oil with omeg 3 fatty acids,vit. B12,vit.D3. And I will start taking iron pills or calcium if I need to. I hope that helps me to.

 
liz
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said this on
22 Nov 2011 4:53:19 PM PST
I am confused. My endocronologist had me have an endoscopy due to an almost absent level of iga in my blood. Then she told me me that meant it was probably a false negative in spite of negative results from the endoscopy. What should I believe? Due to my fatigue which caused extreme deconditioning, I have been to fibro specialist (had it for 40 years), heart and neurologist specializing in autonomic disorders with no relief. Now I remember I was very fit when I did not eat any grains, but it could be that I was able to exercise and get fit because I was not eating grains? I am confused.

 
Dana
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said this on
17 May 2012 4:46:19 PM PST
I had an endoscopy to determine the cause of my stomach and heartburn issues. It was discovered that I have an hiatal hernia but due to other symptoms I was told to follow a gluten-free diet. My liver enzymes are elevated also. Does gluten cause this? If so, will following a gluten-free diet help?

 
Penelope
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said this on
28 May 2014 7:16:07 AM PST
I was always one person that thought this whole gluten thing was in peoples heads until I had surgery on my feet 2 years ago and broke out in this terrible itchy burning blistery rash over my whole body...I had been to my doctor ER doctors allergists dermatologists and tested negative to all sorts of things so I was through with doctors I figured it was psoriasis and started to tan which helped keep it down to some point. In the mean time I had been having terrible pains in my stomach and diarrhea all the time after I ate so my surgeon decided to take my gallbladder out...after I had that done i thought I couldn't eat certain foods because they made me sick which I was told was normal so I just stayed away from those types of food.. Well 2 years have gone by and now just recently after talking to a friend who put herself and child on a gluten free diet because her little boy had excema so bad she told me after going on a gluten free diet he hadn't had a breakout. I was amazed so I was chatting a little more about it and told her all my issues I had been having especially the stupid constant rash/itching. She told me to look up celiacs I was astonished all the symptoms fit me to a T and when I seen the pictures of the rash it was exactly like mine. So immediately I started my gluten free diet including switching shampoos because mine had gluten in it..After less than a week I haven't had that terrible itching except a lil still on my scalp probably from open wounds before and I can eat without feeling sick and drink without waking up so achy I feel like I got ran over ,my bones hurt so bad. So I want to apologize to all those gluten free people this is a serious terrible substance and more people should consider going on a gluten free diet. I know this last week has been absolutely wonderful for me!!




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