What about Gluten Sensitivity not really existing?

Image by OngjulianOwn work. Licensed under CC BY-SA 3.0 via Wikimedia Commons.

Recently media has latched onto a research study published last year in January 2013 and decided to report on it during Celiac Disease Awareness Month… more than a year later in May 2014.  This is the Study Report headline in the Journal of Gastroenterology (Jan 2013): No Effects of Gluten in Patients With Self-Reported Non-Celiac Gluten Sensitivity After Dietary Reduction of Fermentable, Poorly Absorbed, Short-Chain Carbohydrates”.   Many media headlines have come up with their own sensational headlines referring to this study which do not bear repeating and giving free page clicks.  Suffice to say that because you can later be diagnosed with Celiac Disease after a negative test for Celiac with obvious reactions to gluten (a family of gluten proteins-for which only 40/400 gluten proteins have been studied only *slightly so far), I see clear problems with journalists making the distinction between Non-Celiac Gluten Sensitivity and Celiac simply because they do not know that NCGS can cause CD. It bears repeating that these headlines are sensational and even the co-author of the study admits it’s still a serious thing, and we need better Celiac and NCGS awareness.

So if the latest headlines seem to annoy you, focus on peer-reviewed studies and the articles in which leading gluten researchers have already responded to the study that only tested 37 subjects.  This recent blitz of bad science making the news is simple gaslighting, irresponsible, and a distortion of the truth.

Dr. Alesso Fasano, Dr. David Pearlmutter,  Dr. Tom O’Bryan, Dr. Stefano Guandalini, Chris Kresser… chances are if you know these names, they need no introduction and you may already be familiar with why this study is so flawed- I will go over where these experts stand on the issue.  One key term in the study is FODMAPS.  It is an acronym for Fermentable Oligo-Di-Monosaccharides and Polyols (they are short-chain carbohydrates which digest poorly in the body). The subjects in the study already self-reported reactions to gluten.  It is quite possible to have more than one or even several digestive sensitivities concurrently (amine sensitivity, histamine sensitivity, salicylate sensitivity, FODMAP sensitivity, in *addition to NCGS, etc).  A study involving self-reported NCGS subjects is taking a segment of the population with already dysfunctional digestion (IBS), and calling a trial duration of 3 weeks ‘good’ on a diet that still could have included individualized food sensitivities (for which known gluten cross reactor foods could have also been included). Assessing gastrointestinal symptoms as the only metric for distinguishing between NCGS or FODMAPS as the root cause of IBS symptoms instead of NCGS and FODMAPS or NCGS and any other variation mentioned above is confounding.

First: roll call.  The only authors talking about Gibson’s study(s) who actually know anything about gluten and diagnosing it and the damage it causes are listed below. These authors are not journalists but they ARE the ones who deserve page clicks:

The New Yorker did a halfway decent job remaining impartial and interviewing both a renowned gluten researcher and one of the co-authors of the study.   In the New Yorker‘s “Freeing the Gluten-Free” piece, Dr. Alessio Fasano, a leading celiac researcher, noted the study’s major flaws:

“[Fasano] argues that the Gibson study was flawed because it only included people with IBS. People with NCGS often have other symptoms besides gut problems, he said, and limiting the study to IBS patients could have excluded patients whose main issue is gluten rather than FODMAPs. ‘They studied the wrong population,’ he said… Gibson [the co-author of the study] says that he’s not trying to debunk NCGS. He agrees with Fasano that it’s real, and that gluten may do much of its harm outside the gut. In April [2013], he and his team published another study, with the same group of IBS patients, which found that eating gluten for three days had no effect on intestinal symptoms but did lead to increased symptoms of depression… He also thinks that researchers—and eaters—shouldn’t fixate on gluten at the expense of other potentially unhealthy dietary molecules, such as FODMAPs. ‘There are a lot of other things going on here,’ he said.”

Gibson maintains that research is still needed on not just gluten but other components of foods that may be damaging based on our sensitivity and health of the gut (but we already knew that). A few issues with this study other than the obvious of not enough participants:  The study is not an extended study like other research studies on gluten and it’s so much more complex than that because of the research that’s already been done on ‘intestinal permeability’ and ‘zonulin’. Also, my other issue was that the follow up study Gibson did that monitored participants who were given only up until three days after ingestion. Research has shown that reactions can be immediate or delayed (that’s the magic of intestinal permeability). Gluten can even still manage to damage brain pathways for 6 months, among many other organs.  If you are getting classic gluten symptoms, elimination of gluten may not have positive effects until a trial of at least 6 weeks of eliminating it- part of this is due to intestinal permeability making it more difficult to heal.  It takes some time to heal the gut/brain connection and the body will not being able to eliminate the toxins all at once in a few days or weeks. It is also a myth that the majority of Celiacs and people with NCGS experience gastrointestinal symptoms as their main complaint.  Dr. Pearlmutter, another Celiac/neurology researcher, Dr. Marios Hadjivassiliou, and many more researchers in the field, will attest to this, as CD/NCGS is predominantly known as a neurological illness). In fact, most will present with a myriad of other debilitating symptoms with or without IBS, but the other symptoms are no less debilitating. Try googling ‘Gluten Ataxia‘ for fun. Be glad it’s not your brain because this MRI brain image of someone with NCGS looks identical to someone with Multiple SclerosisThis video is actually a really great visual lecture on how gluten sensitivity leads to CD and other illnesses by Dr. Peter Osborne). And here is a quick video about the first doctor to diagnose patients in 1952

Those in the study who got progressively worse with gluten (and most likely continued to feel symptoms way after the three day threshold) experienced depression, which is brain damage, a telltale physiological sign of inflammation. The damage is a wonderful variation on hypoperfusion, a lack of blood flow (and nutrients) to the brain that happens to Celiacs and people with NCGS. Another leading Celiac researcher, Dr. Tom O’Bryan, talks about hypoperfusion at length in this video titled “Silent Celiac Disease and ADHD”.

In an interview with ScienceLife, Dr. Stefano Guandalini speaks on why more people are not being diagnosed with CD or NCGS:

“We used to call typical or classic presentation the gastrointestinal symptoms, mostly chronic diarrhea, abdominal pain, weight loss, or in children “failure to thrive.” This still of course remains the way in which celiac disease can manifest itself, but we have learned that there are so many other ways that celiac can present itself, and many individuals are not mindful of that. Colleagues should be paying more attention to the many different ways in which celiac can present itself. For instance, joint pain: Six percent of children that have arthralgia or even arthritis, obvious objective inflammation of their joints don’t have juvenile rheumatoid arthritis, they have celiac disease that is responsible for that. In diabetic children, 10 percent of them have celiac disease. If we don’t screen these individuals, we will never know if they have celiac disease. It requires a high degree of suspicion and knowledge of the fact that celiac can present in many different ways, and listening to the parents when they tell you.”

Of course, conventional doctors will be quick to tell you you have symptoms, but when there is a root cause to be determined, covering up the symptom with a pharmaceutical drug does not treat the root cause even though it is routinely done by practitioners (and harm done to the patient). Symptoms easily get progressively worse over the years for someone with CD or NCGS in a short period of time because transglutaminase [tTG] enzymes, which are responsible for the damage to the gut, also exist throughout the body, promoting damage and a state of autoimmunity. If you have Hashimoto’s or Graves, you should also know of the latest research linking Hashimoto’s to NCGS and CD. Symptoms may be tolerable temporarily (you get used to feeling bad and start believing it’s normal [for you] so you deny it is a problem, or you get used to masking one or two of the symptoms with pharmaceuticals or you blame it on your thyroid acting up.  However, discovering that gluten can be the cause of your symptoms is a key realization).  Suddenly, enough time passes and enough symptoms amass and it becomes intolerable.  It is due to the stress on all the organs because many are not working properly as well as being malnourished. I would maintain that the prognosis is easily ‘failure to thrive’ when the symptoms are masked by conventional medicine with no attention paid to how closely autoimmunity is promoted by gluten damage.

Many people… even those who actually had the “fortune” to have been diagnosed with CD may not even want to give up gluten precisely because it can be so enjoyable due to gluten being addictive.  The exorphins in gluten have an endorphin-like addictive effect, binding to our brain’s morphine receptors, despite giving us other seemingly unrelated (but really related) poor insulin regulation/Type 1 Diabetes, gallbladder removalGERD, PCOS, infertility, an increased likelihood to have children with ADHD or Autism, as well as CD or NCGS can manifest as ADHD or can manifest as Autism.  You can also experience metabolic overload, general inflammation, obesity, and other conditions I do not have the time or space to illuminate that are connected to gluten but many researchers already have. I would like to highlight one aspect, however: gluten specifically attacks heart tissue, In a Study in Lancet Journal, it was found that:

“When someone with gluten intolerance eats gluten – even just a little – it increases their risk of [cardiac] death by 600 per cent…Plus, a recent large study in the Journal of the American Medical Association looked at almost 30,000 patients from 1969 to 2008 and found there was a 72 percent increased risk of death in those with gut inflammation related to gluten (but no celiac’s), and 35 percent increased risk [of cardiac death] in those with gluten sensitivity but no celiac disease.”

It is easier to ask what problems aren’t affected by gluten. And it’s definitely not safe to have ‘a little’ because someone told you who just doesn’t know better.  Having just a ‘little’ incites the immune response so negatively that it is like you never quit gluten in the first place as your reaction can be quite severe whether immediate or delayed.  It’s not all ‘in our heads’.  Hi, Kthx, ‘depression’ and ‘obesity’ are not end diagnosis… you don’t just stop looking for the root cause and tell your patients they should ‘feel better’ by taking their pills and exercising. Fat cells are protective when there is inflammation in the body. No. One. Will. Lose. Weight. When. There. Is. Inflammation. Ever.  This goes for every single person who is holding additional fat.

It’s not in our heads.  Celiac testing/NCGS testing is so inaccurate that by the time we test positive for visible intestinal damage, the damage is almost or already irreparable. Can you imagine the ‘goal’ is to just sit and wait until there is visual damage?  Where is the ‘health’ aspect of medicine and prevention?  A less invasive approach would be to check for neurological markers CRP, and levels of zonulin.  1. Your immune system can be so suppressed you will not produce antibodies for NCGS.  2. CD diagnosis with the scope is only obvious visually…but that means that if a doctor were to see minimal damage on that one tiny section, still might say it’s OK to eat gluten (with a negative blood test) despite ‘classic’ gluten symptoms’. This is because some doctors will say it’s OK to eat gluten with MARSH 1 or 2 results, but if result is MARSH 3, will be told to eliminate gluten but this is not the standard of care anymore. Anyone with MARSH 1, 2, or 3 damage needs to eliminate it.  3. Waiting until the damage is already done is just needless suffering because a Celiac blood test can be inaccurate too  3. Delayed CD diagnosis has happened quite *enough that those who showed a negative scope for CD later developed a positive scope for CD *a decade or more (or X years later according to Dr Tom O’Byran)…. further driving the point home that you are waiting for damage to get worse if you change nothing and are still getting symptoms (and the longer you go-oh hai, how many autoimmune diseases do you have now?) . 4. Furthermore, the thyroid-gluten damage and worse thyroid symptoms connection Kresser describes is enough of a reason for Hashi folks to go Gluten Free as well as gluten’s effect of an increased need for thyroid hormones…. to say nothing of the actual link between Hashimoto’s and CD/NCGS.  All thyroid doctors should be recommending a Gluten Free diet to improve health, if not to actually address Celiac Disease or Non-celiac gluten sensitivity which is underdiagnosed for the reasons I have enumerated. Thyroid patients should suspect they are being undertreated if gluten is never even mentioned. So, do you have a family history of CD?  Family history of autoimmunity or chronic unattributed symptoms in spades on side of the family? Family history of premature death? Positive testing for Celiac genes on 23 & me? Have Hashimoto’s?  Well… do the elimination diet and you will surely figure out if gluten and one or more of the several gluten cross reactive foods are issues for you. The elimination diet is where you also discover if you also have issues with FODMAPS, salicylates, amines, histamines, etc.  Even still, cutting out gluten is number one for people with Hashimoto’s.

But after reading all this, you want to know the GOLD standard for care in diagnosing patients, right, because it is just so darned confusing to MD’s who cannot properly screen for Celiac Disease or NCGS.  And there is a good reason for this. A very good one.  Science just hasn’t caught up… but there is already a gold standard in diagnosing currently being used by integrative physicians, functional medicine doctors, naturopaths, and osteopaths.

Tom O’Bryan constantly cites that it takes an average of seventeen years for your conventional doctor across the street to use current research and standards of care, not limited to just diagnosing patients.  For those with autoimmune Hashimoto’s, this is just too long to wait to have doctors address your *all of your issues, let alone diagnose you with Celiac Disease or NCGS… but this is not for a lack of current research and protocols.  The proper treatment when you suspect Celiac or NCGS is to first have a doctor run the necessary tests in addition to a full workup on food sensitivities, not just foods you may be allergic to, and then eliminating gluten and doing a healing autoimmune protocol elimination diet (AIP). For others with less damage, it may be enough to just eliminate gluten and other food sensitivities to see relief, but for those with more damage, starting a protocol like AIP or GAPS may literally be the ONLY way to see relief from symptoms.  For those with Hashimoto’s it’s never recommended to reintroduce gluten for its role in damaging the thyroid via the autoimmune response in addition to directly increasing the need for thyroid hormones. There are thyroid cells with receptors all over your body, not just in your body and your thyroid is helps to modulate the immune system.  Avoiding gluten goes for whether or not you are one of the 90% of thyroid patients diagnosed with autoimmune Hashimoto’s or are just hypothyroid (10% are just hypothyroid with no autoimmune condition, and a small percentage have autoimmune Graves [for which the treatment is still the same]). Unfortunately, a patient can show negative autoimmune antibodies to thyroid simply because their immune system is so suppressed. Often, CD or NCGS can be the reason the immune system is suppressed. A good doctor will periodically check for thyroid antibodies if you have never had a diagnosis. In addition, having friends and family telling you ‘if only you would only take your thyroid pill you will feel better’ does no good to us.   When you have Hashimoto’s, your thyroid is attacked, sure, but other parts of the body are also attacked… a thyroid pill is not some magic pill that will stop the damage on the rest of your body. However, removing stress on the body reduces/removes the immune attack-dietary changes are the easiest way to relieve stress on the body.

Thyroid patients need better Celiac/NCGS awareness because feeling worse unnecessarily is just unacceptable.  Over the years I’ve had so many missed opportunities to be diagnosed with Celiac or NCGS.  My doctors gave me a blood test which was negative more than once and called me ‘good’… and didn’t know what to do with me yet my symptoms kept getting progressively worse…until I sought help from Hashimoto’s 411. My conventional doctors never tested me for nutritional deficiencies but I was extremely malnourished before I got help from a doctor that I found with the help of the Hashimoto’s 411 group.  No thyroid patient should be told to just ‘wait and do nothing until your thyroid dies’ or have to find out you even have an autoimmune condition by reading your medical records. Many integrative doctors have success guiding their patients into remission because they address autoimmunity first and root causes. In fact, hundreds of patients (if not thousands) in the Hashimoto’s 411 group have already reported improvements treating the whole autoimmune aspect of Hashimoto’s with the foundation of the treatment being dietary changes and doing a full elimination diet as well as sharing other evidence based research for the sole purpose of preventing bodily decline.

From my elimination diet, I can’t have known gluten cross- reactors: corn, yeast, sesame, coffee, (and of course) gluten… that is in addition to other food sensitivities that accumulated due to the intestinal permeability problems I developed from eating gluten for over 30 years. No, I do not have FODMAP sensitivities. The symptoms for those are actually quite obvious once you have removed all your *other trigger foods and optimized your digestion. My mom was diagnosed Celiac/Hashi on deathbed in early 50’s. I have the genes, I have the symptoms, but I’m not diagnosed with Celiac and have had a negative Celiac blood test, but I do react. Because you can be later be diagnosed with Celiac, if I had continued to eat gluten containing foods, I could be positive for celiac in 10 years or X number of years had I continued eating gluten…  but if I listened to every Tom, Dick, and Hairy out there without a medical opinion (and the doctors I fired), I would still be miserable and still eating gluten… 

Science should be pointing us in the right direction but these articles are coming to the wrong conclusions and coming up with straw man fallacies. If testing for Celiac Disease & Non Celiac Gluten Sensitivity were more accurate I could feel a little bit better about awareness, but the awareness also has to happen on the patient’s end.  We don’t have any surefire promises of accurate diagnoses for gluten issues except for eliminating it and seeing relief-but that is how the immune system works.  The Gut/Brain connection has to be re-established for healing to occur. There is definitely also hope for seeing if gluten is an issue by checking neurological markers, CRP, and zonulin, but most conventional doctors have no clue about that, unfortunately.

The Bad News and the Good News:

If you are having chronic symptoms, there’s a physiological reason for it and it does take time to heal from it-that is both the bad news and the good news. If there is one thing I’ve learned it is to trust the ability of the body to heal itself and be patient.  If the liver takes 3 years to regenerate all its cells, I can still see a ‘whole new me’ and improvements three years down the road. The healing comes in its own time.   The best we can hope for is for others to take our health conditions as seriously as they need to be… by doctors, by hospital staff, by restaurant staff, by family and friends.

If you are a Doctor or a Nurse currently reading this:

Read here about the gluten challenge: the gluten challenge has not been a standard of care for someone who is reacting and has already eliminated gluten since 1999. Medical professionals may be under the impression diagnosis means everything; but in this case, it is a truly damaging assumption, doing harm to the patient and definitely a case of malpractice. In addition, if a biopsy of the intestine is done and there is Marsh 1, 2, or 3 damage, the patient must immediately eliminate gluten.

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3 Responses to What about Gluten Sensitivity not really existing?

  1. Pingback: My Gluten Free Story - Two Peas in a Pod

    • lindeyrig says:

      Gluten is one of the major problems but a lot of us also find that we need to get rid of all grains too. Not only does it affect the digestion but also brain function.

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