March 11, 2011

The Many Heads of Gluten Sensitivity

 

Unfortunately, today most people do not understand the difference between gluten sensitivity and celiac disease.  As a matter of fact, this is one of the reasons why so many patients fail to get properly diagnosed.  Lab tests have traditionally focused on diagnosing celiac disease.  This has created a proverbial No Man’s Land for those patients who react to gluten differently.  Because the labs come back negative for them, they are told to continue the consumption of grains, and they are told not to worry about gluten because they don’t have celiac disease.

Until last year, most doctors and celiac disease researchers ignored or denied the existence of gluten sensitivity.  The general thought was – if you don’t have celiac disease, you don’t have to worry about avoiding grains.

A new study published this week attempted to elucidate the differences between Celiac Disease and Gluten Sensitivity

As much as I love the work being done by Dr. Fasano at the University of Maryland, I have to take offense at the following quote from from Fox News’ interpretation of the study:

Unlike celiac disease, gluten sensitivity is not associated with these serious conditions (referring to – autoimmune, cancer, osteoporosis, infertility, and neurological disease). Common symptoms of gluten sensitivity include abdominal pain similar to irritable bowel syndrome, fatigue, headaches, “foggy mind” or tingling of the extremities.

The quote minimizes just how serious and life threatening gluten sensitivity is.  I have personally seen non celiac gluten sensitivity cause kidney failure, liver damage, cancer, autoimmune disease, and more.  The vast majority of these patients did not have celiac disease, but did have gluten sensitivity.

I have personally interviewed many colleagues who share similar experiences with gluten sensitivity.  So the question I have to ask is – Why does the media try to minimize the symptoms and diseases associated with non celiac gluten sensitivity?

Dr. Fasano’s Explanation of What Happens to Those Who Eat Gluten:

“Imagine gluten ingestion on a spectrum.  At one end, you have people with celiac disease, who cannot tolerate one crumb of gluten in their diet.  At the other end, you have the lucky people who can eat pizza, beer, pasta and cookies—and have no ill effects whatsoever.  In the middle, there is this murky area of gluten reactions, including gluten sensitivity. This is where we are looking for answers about how to best diagnose and treat this recently identified group of gluten-sensitive individuals.”

Dr. Fasano’s team is trying to figure out the exact disease triggering mechanisms that occur when gluten is ingested.  This new study shows that there are multiple mechanisms at work (more to come on this in future posts).  Some are adaptive immune responses, some are innate, some are indirect immune responses, and some on non-immune mediated responses.

Dr. Osborne’s Explanation Can be Summarized in two Images –


All that being said, Thank you Dr. Fasano, et al. for taking on such a complex issue.  The work your team is doing continues to discover new elements of this perplexing process thus allowing clinicians across the country to provide more up to date treatment and education of patients.

Now That the Proverbial Cat is out of the Bag, Why all the Previous Confusion?

Gluten sensitivity manifests in hundreds of different ways.  It has been called a multi headed  HYDRA of disease.  Each head representing a different symptom or disease.  (For those of you who don’t know what a Hydra is – look at the picture above) Drugs are typically used to treat the symptoms of gluten induced disease, but unfortunately, they do not correct the core of the problem.   So for every symptom a medication is used to treat, several new symptoms arise.  (a Hydra will sprout two new heads for every head lost)  Thus a person goes undiagnosed for years because doctors are chasing symptoms instead of addressing their root cause.

Because research has shown that as many as 40% of all Americans may be gluten sensitive, and that 1 in 100 have a severe form of this sensitivity causing the the autoimmune intestinal disease, celiac sprue, a case can be made that everyone in America should be screened for gluten sensitivity.

However, there are people with various risk factors or diseases that are at greater risk of having gluten sensitivity who should undoubtedly be tested.

These conditions include:

• Microscopic colitis (inflammation of the colon)
• Relatives of those with celiac disease or gluten-sensitive individuals including
• Chronic diarrhea of unknown origin
Irritable bowel syndrome (IBS)
Inflammatory bowel disease
Gastroesophageal reflux disease (GERD)
• Hepatitis C
Liver disease of unknown origin
• Dermatitis herpetiformis
• Diabetes mellitus
• Degenerative disc disease
• Colon Cancer
Thyroid disease
Psoriasis
Any autoimmune diseases (common ones include):

• Chronic Fatigue and Fibromyalgia
PCOS (polycystic ovarian syndrome)
Asthma
• Migraine Headaches
Osteoporosis
• Iron deficiency
Failure to thrive (FTT) or short stature in children
• Down’s syndrome
• Mothers of kids with neural tube defects
Female infertility (includes those with multiple miscarriages)
Peripheral neuropathy
Cerebellar ataxia (unexplained dizziness)
Seizure disorders
Psychiatric disorders (Schizophrenia and bipolar)
• Depression
• Alcoholism
• Autism
ADHD/ADD

Bottom Line – Slay the Hydra!

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31 Responses to “The Many Heads of Gluten Sensitivity”

  • Debra says:

    Well, I do not agree with Dr. Fasano either. Celiacs do seem to be able to eat small amounts of gluten, such as the so called gluten free foods that aren’t really gluten free. I am gluten intolerant, meaning I can not have one drop of gluten, yet I am not celiac.

    The definition of gluten intolerance has a long way to go.

  • Lesley Young says:

    This is very interesting stuff. Thanks for sharing this information.

  • mom24es says:

    With gluten sensitivity being a “state of genetics” why shouldn’t all newborns be screened and if positive be advised to follow a gluten free diet from birth? Some may call it extreme but how much pain and suffering and health care costs it would save….

  • Vicki says:

    Are you serious Debra?

    You may find the celiacs eating those so called gluten free foods fail to heal. CD is a multi system disease and doesn’t always present in gastro form. Gluten Intolerants would also eat the same GF foods. Neither disease is much fun but please don’t discount the suffering of others. I was sick for 10 days the last time I was glutened. I’m not sure how long it takes for the gut to heal from that.

    Where I live GF is actually GF in processed foods(tested to the lowest detectable amount). Zero gluten should be zero gluten! I avoid all processed foods anyway they are full of sugar/fat and salt so not particularly healthy.

  • Jackie,
    I totally agree. “An ounce of prevention is worth a pound of cure”

  • George says:

    Debra, I have to shout up and agree with Vicki. As a coeliac of 8 years (and counting) if one crumb of bread on my counter-top (from my partners sandwiches) remains when I got to chop something up, I get sick for days if not weeks.

    Coeliacs can have NO gluten, just the same as you.

    On the other hand, I have a friend who is gluten intolerant, and she can take small amounts of gluten with no ill effects at all.

    Please do not comment on the plight of others, whose disease you do not have, if you are not going to at least show some compassion, and preferably be correct while you’re at it.

    We are all suffering due to our genetics, and we all cannot eat something which is in MOST everyday foodstuffs AT ALL. It’s not fun for any of us!

  • Huey Manto says:

    Some truly fantastic content on this website , thankyou for contribution.

  • Whether you have Celiac disease or gluten intolerance, they both require lifelong total avoidance of gluten containing foods. The immune system will be triggered with the ingestion of gluten and lead to a body-wide inflammatory cascade – whether or not you feel it right away. This inflammatory cascade has many deleterious effects throughout the body and can trigger hormonal imbalances, autoimmune attack in other parts of the body, leaky gut syndrome; all of which have their own concomitant health challenges.

    I obtained gene tests on myself and have one celiac gene and one gluten sensitivity gene. I did further testing to see if I was immunologically reacting to any of the various proteomes in wheat, which I was.

    That test prompted me to test whether my gluten antibodies were cross reacting to 24 non-gluten containing foods and whether my immune system was attacking any of my intestinal barrier system components (actomysin, occludin, zonulin and lipopolysaccharides).

    These tests are the state of the art in testing and were designed by world renowned immunologist. Dr. Aristo Vojdani.

    By following a diet of protein, vegetables, low glycemic fruits along with some lifestyle changes and specific supplementation to help quench immune system reactions and heal the intestinal barrier.

    This general outline of our successful treatment protocol has allowed me to help many chronic condition patients recover their lost health.

  • Krissy Caster says:

    My 10 year old son who only weighed 48 pounds was diagnosed in January 2011! He had joint pain, severe constipation, could not walk more than 50 ft without feeling fatigued, found eating painful, had dark circles under his eyes, diagnosed failure to thrive, and has autism! He was FAILING!! Why didn’t his PCP forward us to a Gastro doctor? His Celiac disease was detected ACCIDENTALLY! He went for an upper GI Endoscopy because his older brother with autism has severe GERD, and they found some damage to his small intestines!
    The needless pain and suffering that his kid has gone through tears up my sole. I would rather deal with his Autism any day at any time than have him go through the horrors of his undiagnosed Celiac Disease.
    Since being Gluten Free immediately, his constipation stopped immediately. We are still on damage control as his stomach had severe inflammation and sores. He has been taking Nexium. Needless to say, he is a much happier eater, no more black circles, no more lying down on his stomach, bathroom time is now pleasant, and have gained over 13 pounds! He has ‘catch up’ weight to do. I was losing my son and it was the most helpless feeling. My husband, myself, and his older brother all tested negative for Celiac. However, we all have gone Gluten Free. My oldest son has lost weight since being on the Gluten Free diet and he seems much happier, too. In fact, he no longer has eczema!!! Coincidence?? I find that our oldest son most likely has a Gluten Intolerance or Sensitivity, whatever you want to call it. If he even has a little bit of Gluten, his elbows and the tops of his hands break out with itchy bumps.
    What a horrific disease, really. I pray for all of you diagnosed with Celiac. I feel for you, really I do.

  • darlindeb says:

    Excuse me George, but I do know what I am talking about, maybe you don’t. I have been gluten free for 11 yrs this month, my sister and father are both diagnosed celiacs. They can eat gluten free processed foods, which we all know still contain gluten, I can not eat anything processed..there is a difference. Some of us are much more sensitive to gluten than others are. As long as the powers that be tell us we can have up to 20 ppm of gluten when celiac, then I would be just as sick eating gluten free processed foods as I was before going gluten free. I can’t eat any grains…can you?

    Please don’t tear into a person unless you know their situation either. I was stating a simple fact that I have found to be true. I am a member of a support group with over 400 members and most of them eat gluten free processed foods which really aren’t gluten free.

  • Nadya says:

    Our family had the DNA testing 2 years ago, & have been GF since discovering all of us (daughter & her two girls, & by default, me) have genes for the sensitivity, while her husband has one for celiac as well. Symptoms included Dyslexia, DH, anxiety, mild seizure disorder, extreme moodiness, …

    I’ve observed that some folks diagnosed with celiac a number of years ago seem to feel they can ‘cheat’ occasionally (or eat processed foods etc) & that it’s “OK” … not realizing it is still doing damage!

    My co-worker’s husband falls into that category – he’s been diagnosed 15 or so years, & ‘cheats’ occasionally. Recently he has undergone a battery of tests (cancer? Ulcer? ???) as he’s been feeling punky. His wife says ‘but we can’t blame everything on gluten’ … ‘he’s cheated worse before – had a whole piece of zucchini bread’ … He works in construction, & is often offered something that he’s too ‘kind’ to turn down. Is that in his best interest? Is he “OK” eating them, just because he does?

    Another friend, diagnosed with Celiac in early childhood, later began eating wheat again, & in her 30s, was asked by a well meaning MD if she ate wheat? Yes, …. & was told ‘well, then you don’t have celiac!’ (rather than asking her if she had any PROBLEMS, & encouraging her to go GF again!) … she’s now in her 60s, & has been GF again for a number of years – but if she’d just listened to that doctor, (& ignored her health issues, which include a round of Breast Cancer) she’d NOT be GF.

    I agree with Dr Karl’s comment that it behooves ALL of us who fall somewhere in the Gluten intolerance/Celiac spectrum to avoid Gluten for the rest of our lives! The damage may not be obvious, but that doesn’t mean it’s not present!

  • christy kennedy says:

    Yeah, that “you’re not a celiac so eat what you want” advice is nuts and negligent and has steered SO many people wrong. Several doctors told me that even after I went on a GF diet and within 48 hours stopped having the migraines I’d had for 25 years. If migraines (excruciating pain, nausea etc. 4-5 days a week) were my ONLY symptom I would have stayed gluten free. My four kids, my brother, my mother and I do not have celiac disease. We are “simply” sensitive and suffered for years with severe GI symptoms, multiple miscarriage and premature bone thinning (my mother and I), fibromyalgia, skin disorders, growth abnormalities, chronic respiratory infections, MCS, insomnia, anxiety, mood and attention disorders, reactive hypoglycemia and on and on and on. I have 100 stories about people and their odd symptoms who’ve been mislead by medical professionals and as many stories about people who, just given some pertinent information, are on their way to much better health.

    My mother, two of my kids, and I have trouble with all grains and after being on a GF diet for 6 years I’ve noticed additional improvements after being grain free for a couple of months. I’d gotten rid of 85% of the gut symptoms but now they’re really gone, and though I could breathe better when running while GF, I consistently feel better, breathing-wise, while grain free.

    Thanks for all the great information. Great comments. I’m with mom24es about testing and Vicky and George regarding Debra’s comment. And Krissi, so sorry for all the suffering. My kids went through hell for a while too but are much much better now. Keep at it people!

  • Julie says:

    I was diagnosed Celiac three months before being deployed to Iraq. I went cold-turkey… came home from the doctor’s office and cleaned out my cabinets. 30 days later, I felt much better, wasn’t having nearly the same level of problems -i.e. I could run without screwing up another pair of pants- and while deployed, basically ate chicken and rice. I did have a piece of cheesecake for my birthday, avoiding the crust (yes, I know, gluten spreads)and something else for Christmas. I came back and started slipping.. I had lost something like 20 pounds while I was gone. My jeans were falling off my hips. And now, I have promptly gained it all back. Not walking as much. I do cheat occassionally, but I have discovered ways to make my GF sweet tooth happy and not sacrificing my gut. I don’t seem to have the lactose issue, and seem to be less sensitive than other Celiacs. It doesn’t mean I cheat weekly…more like every 3 months or so. If I do. I make cheesecake with a coconut crust, or use GF graham crackers. I thought about using those yummy lemon wafer bars as a crust.. mmmm..sounds great. There are so many things to make stuff taste and texture better. Add chocolate pieces to brownies, use the Duncan Hines frosting on them too. Yeah, not great for the waistline but they sure taste good!
    I started my ADHD son on a GF diet this summer. He’s a little calmer, not quite as hyper, but he still needs meds for school.
    @Lori Muir.. I have a thyroid disorder and have to take Synthroid every day for the rest of my life. I am a danger to myself and others if I don’t take it (fell asleep driving a few times). There is not a substitute either. Not taking pills isn’t reasonable for some.

  • Hi Julie,
    Thanks for sharing your story. I need to point out that you are not TRUE gluten free. In order to defeat thyroid disease your diet needs to be strict. Watch video #1 under the Glutenology tab above:
    http://www.glutenfreesociety.org/video-tutorial/gluten-sensitivity-what-is-it/
    This article might also be useful to you:
    http://www.glutenfreesociety.org/gluten-free-society-blog/celiac-disease-autoimmune-thyroid-disease-gluten-selenium/

    All the best,
    Dr. O

  • Randy says:

    Just to let you know I am not aware of any other symptoms of my gluten intollerence cept that I fall asleep after every meal that includes gluten! It got very expensive to sleep all day and all night, so I finally found the culprit! What a relief to be able to do my work and take part in life beyond sleep.

  • Rachel says:

    What amazed me more than anything was that my doctor just kept treating more and more symptoms and never tested me for Celiac. I was losing teeth, three collasped disc in my back, gas, extream bloating, unexplained stomach pain, chronic migraines, leg cramps, malnutrion, chronic anemia, brain fog, depression, panic attacks, anxiety, hormone imbalance, GERD, ADD, and worst of all full blown IBS. I was unable to go to work. The gas was horrific, so bad I wouldn’t allow company at our home. I had a pill for everyone of these conditions. When I went for testing I carried spreadsheets for my medications, surgeries, and allergies.
    I lost my job, I’m on disability now. I lost my home as well.
    I have a new doctor now, a GOOD doctor. After looking at my chart for the FIRST time she asked if I had been tested for CELIAC? Why aren’t all doctor’s educated?

  • Lynne says:

    My 15 year old daughter has been very sick for the past 3 years. We had to start homeschooling when she was 12 because she was unable to attend public school. She has been misdiagnosed with Crohns and Fibromyalgia. She has been unbelievable amounts of medication. She was taking about ten pills in the morning and at night. She has had a laproscopy and appendectomy because of lower pain in the abdomen. She has had headaches since she was about 8 or so, severe constipation and bloating. She has had bouts of severe leg pain and could not walk from the bed to bathroom without help. She also has horrible stomach and chest pains. I remember taking her to the peditrician at 18 months old and asking him why is her stomach so bloated. He told us that her stomach muscles just havent developed yet. We have been to the GI doctor and was misdiagnosed with Crohns and was placed on steroids. The steroids did so much damage to her skin. She never was getting any better. I took her to another GI doctor and was told she did not have it but the 10-15 ulcers in her stomach would cause these problems and it would take a year to feel better. She still had severe stomach and chest pains and he did not want to do any tests on her. I found another doctor that said she deff needed another endoscopy and the biopsy showed celiac disease. It is so sad that she has had to go through her whole life sick and in pain. She has missed out on so much of her teenage life. Why is this so difficult? Why do we have to rack up so many medical bills for surgery, every test you can imagine, medication and trips all over the southeast trying to figure out what is wrong with my child. The first two pediatric GI specialists told us that she just really needed to start exercising. WOW. She has been gluten free since Sept 20, 2011 about 5 weeks now and I have a different child. She is actually going to an amusement park tomorrow!!! I found a local doctor that checked her vitamin levels. She was low on B12 and vitamin D3. She is now getting B12 injections weekly and no more leg pain! I get upset thinking about all the other kids out there sick and hurting but not getting the help they need!

  • Lynne,
    Unfortunately, your story is all too common. Thank you for sharing it with us. Your trials and tribulations will undoubtedly help others who come across this post. Gluten Free Society is in the process of putting together a physician certification program so that people like your daughter have a greater chance of finding the right medical help.
    All the best,
    Dr. O

  • Grace Filkins says:

    So why is Crohn’s Disease not in your list?

  • Gluten is just the tip of the iceberg when it comes to impaired health. There are other compounds in grains that can interfere with optimal health. Glaidin and Lectins can also wreck havoc on the body. Many of the gluten free foods are loaded with gliadin and lectins which are pro-inflammatory in nature. That is why I advocate going grain free with my patients. The Paleo Diet as well as the Primal Blueprint Diet are great alternatives to just going gluten free. Another thing to remember with going gluten free, the gluten free foods for making pancakes, bread and cookies are loaded with just more carbohydrates in the form of mostly rice, potato, tapioca flours which in turn causes more systemic inflammation to the body and disrupts sugar metabolism.

  • Maria says:

    I had a stool test done and the results said to definately avoid all gluten, so then I went to have an upper and lower GI and he said I’m not celiac, but he has no way to test for gluten sensitivity. Frustrating! Lupus runs in my family, I guess I’ll have to be 100% gluten free now.

  • Cristina says:

    When I started with chronic diarrea, was tested initially for salmonella, and other parasites, when that came clear, and diarrea continued, they tested me for gluten , lactose intolerant etc, all blood tests came negative, next was a colonoscopy, where again it came negative. Only thing doctors found was that my vitamin b12 was low, so i took thos vitamins.
    One year later I got tested again as the diarrea wouldnt stop, no colonoscopy this time, but all blood tests came negative again, and the intake of vitamin b12 everyday was making no difference, so they just gave me more pills a day. Next year I came back with all same tests except this time i was showing blood in my stool, so back to another colonoscopy and this time they added an endoscopy. It was the endoscopy that they found my celiac desease. 4 years of feeling terrible, brain fog, fatigue hormonal imbalance and anxiety attacks. finally feel much better going GF.
    So hard to diagnose!

  • Robin says:

    DR Karl…you said you had genetic testing done…when they do that..what testes should I ask for??

  • Emme says:

    I get so discouraged at the hidden gluten in foods. I just found out roasted nuts are often dusted with wheat. Nothing on the package states that is so. I’m gluten intolerant and have to stay away from all gluten- even chicken because they are grain fed. I eat only goat cheese. Even at that, there are times I get tired, have sinus problems, foggy brain, and anxiety that I know is a result of injecting hidden gluten. It’s so frustrating.

  • soulless1 says:

    As the wife of a self-diagnosed sensitive/Celiac (the doctors have refused to test him) I have also been GF for just over a year. Every time I have been pressured to “cheat” since none of his family believes in sensitivities or allergies, I am the one who gets sick. I worry about him, because his paternal grandmother died of Colon Cancer, and his paternal uncle has now been diagnosed with the same. However, his whole family swears that gluten sensitivity and Celiac disease do not exist.

  • Vickie says:

    Hi: I have been diagnosed with corn gluten sensitivity aa well as allergy to oats. Also sensitive to wheat, rye and other list of things. I have been eliminating these items and feel so much better. My reason for emailing is my son has Urticaria (hives) and the doctors just keep treating the symtoms and say there is no cure. He is on steroids and so many other drugs it is insane. He also has had Add all his life. But at this time does not take drugs for that as he is 36 yrs. old and doesn’t think he needs them. My question is do you think there is a possibility that the things he suffers from could be related to gluten ? He eats an excessive amount of breads and puts a lot of salt on his foods.

    I have a very good doctor and was thinking I might ask if he would go to see him and find out if he has gluten issues. Can these sensitivities be genetically inherited from me?
    Thanks, Vickie

  • Yes,
    Gluten sensitivity is a genetic issue. You should have your son tested ASAP. Click on the Genetic testing link above for more info on this.
    All the best,
    Dr. O

  • [...] quit gluten in the first place and your reaction is worse than ever after having given it up.  It’s not all ‘in our heads’.  Hi, Kthx, ‘depression’ and ‘obesity’ are not end diagnosis… you [...]

  • TrevN says:

    One thing to bear in mind. My initial blood tests were negative. I was being investigated because I was having similar symptoms to my dad, who had bowel cancer. Not satisfied with a negative result, my consultant did an endoscopy. He then told me that I had Coeliac Disease and had had it for many years. I only had symptoms for about 6 months. He said that I was almost at the point where irreversible damage was imminent. Blood tests alone are not completely reliable.

  • [...] Gluten-free flours are becoming more popular as people are becoming aware of how gluten can play a role in bettering their health. In years past, gluten-free flours were mainly used by those with Celiac Disease, but evidence has come to light that those who suffer from autoimmune disease and other illnesses may benefit from avoiding gluten. [...]

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