As if what does and doesn’t have wheat or gluten in it and how gluten can act within your body isn’t confusing enough, the frequently (yet inappropriately) interchanging terminology within the spectrum of gluten-induced conditions is sure to do the trick.
For many of you, this may be much further down the rabbit hole than you care to hop into. But because people are jumping on and off the gluten-free diet these days for so many different reasons, it is important to get us all speaking the same language, and to better understand the severity of the various conditions.
To simplify, we are going to break this into three commonly referred to groups. I’ll give you definitions, tell you what happens with each from onset to reaction, and then I’ll cover a general overview on how to test for them. I’ll also share with you a super fun exchange I had with my (ex-) doctor that had me screaming expletives the entire drive home. Lastly, we’ll take a look at why people get so testy about testing.
It’s juicy stuff.
As always, please use this as a basic guide to understanding. Any clinical decisions around diagnosis or treatment should be made with a qualified practitioner who is well educated on the spectrum of gluten sensitivity conditions.
First off, I need to stress that true food allergies are not the focus of this site. However, it is still an important point to understand as it provides clarity on the overall gluten issue at hand, and because it is serious stuff.
We’re talking about the type of condition that has brought us into a world where packets of airplane peanuts are a thing of the past, the previously benign PB&J is being banned from lunch tables everywhere, and the EpiPen is locked and loaded for inadvertent ingestion. If you don’t live in this nightmare, it might seem easy to dismiss, but for parents who have to keep a constant, vigilant watch over what their child comes into contact with, it’s nothing short of horrific.
A food allergy results in an immediate hypersensitivity reaction, caused by histamines released after exposure. The severity of the reaction can range from hives to anaphylaxis – a potentially life threatening condition which can cause the airways to close.
A true food allergy is common in kids, but rare in adults. The most common foods that people are allergic to include: peanuts, tree nuts (such as walnuts, pecans and almonds), fish, and shellfish, milk, eggs, and soy products. A true wheat allergy is actually quite uncommon.
Minutes to hours after wheat exposure.
Blood tests looking for IgE (Immunoglobulin E) antibodies or a skin prick test (SPT) would be performed in the office of an allergist/immunologist.
Celiac disease (CD) is an autoimmune disease, which is an illness that occurs when the body tissues are attacked by its own immune system. Think of joints being attacked in the case of rheumatoid arthritis, or your nerves being attacked due to multiple sclerosis, or the cells of the pancreas being attacked in the case of type 1 diabetes (previously known as juvenile diabetes or insulin-dependent diabetes mellitus).
With CD, antibodies produced in reaction to gluten consumption damage the intestinal villi (small, finger-like protrusions in the wall of your small intestine), whose job it is to absorb food and nutrients. With those important little villi down and out, the results can be malabsorption of food leading to GI distress (i.e. diarrhea), anemia, and sometimes, weight loss.
But, it’s important to note that CD symptoms are not isolated to GI symptoms as historically believed. It has been found that for every one patient with celiac disease who has GI symptoms, there are eight patients that present with completely different issues. That said, all people suffering from celiac disease run the risk of depriving their brain, bones and vital organs of essential nutrients if the disease is left untreated (i.e. if the person continues to consume gluten).
Autoimmune diseases are insidious, and their manifestations can be elusive. They can also create a domino effect within your body, as the presence of one autoimmune disease increases the chance for developing another, simultaneous autoimmune disease. Case in point: CD is associated with many other autoimmune disorders, including RA, type 1 diabetes, lupus, Hashimoto’s, alopecia areata (hair loss) and scleroderma, as well as non-autoimmune chronic diseases and disorders such as Down syndrome, fibromyalgia, and chronic fatigue syndrome. Left untreated (i.e. not committing to a 100% gluten free diet for life), CD can lead to certain cancers (primarily of the small bowel, esophagus and some non-Hodgkin lymphomas), iron-deficiency anemia, early onset of osteoporosis, pancreatic and gallbladder insufficiency, and neurologic issues. And most will go undiagnosed because the symptoms can be so elusive.
Weeks to years after ingestion.
There is no consensus regarding which symptoms, laboratory abnormalities and/or associated diseases require evaluation for CD. However, a generally accepted, conventional (which also means controversial, which we will discuss at the end of the post) approach is as follows:
- Patient has a set of defined symptoms (almost all dealing with poop, so buck up) – chronic diarrhea with weight loss, fat in the stool, abdominal pain after eating gluten.
- Patient has blood work to detect CD. The IgA anti-TTG (tissue transglutinamase) antibody is the preferred single blood test, but there are many others that may be used depending on the clinical scenario, including genetic testing due to CD’s strong genetic component. Diving deep into this topic goes beyond the scope of this big picture break-down, but if you’d like to indulge, comprehensive guidelines for diagnosis and management from The American College of Gastroenterology are available. Important to note: for accurate results, gluten cannot be removed from the diet prior to testing. Removing gluten for just weeks could result in a [falsely] negative test.
- If blood test(s) come back positive, patient undergoes an upper endoscopy with small-bowl biopsy to confirm the CD diagnosis (i.e. you are put under and a gastroenterologist inserts an endoscope through your mouth and shoots it all the way down to your bowels to look for that damage to your intestinal villi).
Gluten Intolerance/Gluten Sensitivity
These terms are probably the most commonly interchanged, and rightly so for the most part.
There is one school of thought that categorizes a gluten “intolerance” as a non-immune based reaction, and a gluten “sensitivity” as an immune-based and inflammatory reaction. The “intolerance” or non-immune based reaction means there is not a response strong enough to produce detectable antibodies on a blood test, but other “intolerances” could be felt – these could be from sources other than gluten – FODMAPS, salicylates, oxalates, etc. The “sensitivity” or immune-based and inflammatory reaction means an inflammatory response strong enough to produce antibodies that would be detected on a blood test, although not the same antibodies found in celiac disease. That said, the differentiations aren’t uniformly applied, and when the term “intolerance” is used, it is commonly in the context of a “sensitivity” meaning a significant, inflammatory reaction.
So for all intents and purposes, gluten intolerance and gluten sensitivity mean the same thing.
Are you dizzy yet? I know. Keep reading.
Recent literature is recommending using “sensitivity” as the appropriate term to keep some consistency in the discussions (amen!) and it seems to be holding. With this new insight, if you use the term “sensitivity” in the sexy world of gluten research, you’ll be an instant VIP. Congratulations.
To keep things simple here, we’ll use the term “sensitivity” or “sensitive.”
When gluten sensitive, our immune system creates an overabundance of IgG (immunoglobulin G) antibodies to gluten, which bind directly to the food as it enters the bloodstream. This immune reaction can be delayed, which is why it is also commonly referred to as a delayed hypersensitivity. Reactions can appear anywhere from a couple of hours to several days after consumption. This is in contrast to a food allergy, when the response is immediate (and most likely more acutely life threatening).
An example of delayed hypersensitivity is migraine headaches, which commonly appear about two days after the problematic foods are consumed. For me, I notice joint pain several hours after consumption of gluten.
Like CD, gluten sensitivity has a genetic aspect. It is seen by some to also be an autoimmune disease; but there is some debate around that. However, with gluten sensitivity – in contrast to CD – damage to the intestinal villi usually does not take place and the comorbidities may be less. This is why you may also hear gluten sensitivity referred to as “non-celiac gluten sensitivity” to make that differentiation clear. However, as I have noted in my previous posts, even gluten sensitivity without celiac disease can lead to serious health concerns.
Symptoms for CD and gluten sensitivity commonly overlap, but in gluten sensitivity they are more likely to be outside of the traditional gastrointestinal symptoms, i.e. behavioral changes, bone or joint pain, muscle cramps, leg numbness, and/or fatigue.
Hours to several days after exposure to gluten.
Gluten sensitivities (as well as other food sensitivities) can be done via blood tests looking for IgG antibodies (most common), IgA or IgM antibodies. You may have heard of such tests performed by various labs like Cyrex or Metametrix (now Genova). Ironically, these tests are sometimes inappropriately called food allergy testing. No wonder there is so much confusion.
These tests can be helpful and provide a good piece to the overall individual’s health puzzle, but there are some limitations and a false negative (you do have a sensitivity, but your test reads negative) is usually the biggest issue. (Like with CD, if you do pursue this kind of testing, do so before removing gluten from your diet.)
- Some tests are not comprehensive enough – they only test one type of IgG or they don’t test IgA or IgM. Also, there is currently not one available that tests for all the 1000’s of wheat protein fractions that one could have a reaction to.
- You could react differently to the raw form of food (most commonly used to test for antigens) than you do cooked.
- They are expensive and usually not covered by insurance.
So, the best way to test for a sensitivity is to completely eliminate gluten from your diet (not even a single crumb of that red velvet cupcake!) for at least two weeks, ideally 4-6 weeks. This is commonly called an elimination diet. See if your symptoms improve. If they do, it is best not to reincorporate – just avoid consuming it. However, there are other schools of thought that dictate consuming in small amounts to see if the negative reaction occurs.
Based on the many paths that could be taken, and the lack of recognition by conventional medicine, it’s easy to see why it takes five physicians, and 10-11 years on average to diagnose a gluten sensitivity. But the fact is that there are six times as many people with a gluten sensitivity than there are people with CD. We’re talking about 18 million people, folks. So it’s important – if you feel this describes what’s happening in your body, acknowledge it, and explore your options.
Celiac disease is often considered the more critical condition on the spectrum of sensitivities to gluten, which is understandable given the well-documented history of manifestations. However, it’s also commonly thought of – by conventional medicine and the uninformed/skeptical public – as the ONLY valid condition connected to any type of sensitivity (and morbidity) related to gluten. And the caboose on that train of thought is that without a confirmed celiac diagnosis there is no need to go on a gluten-free diet.
This really lights me up. It’s not only dismissive, it’s inaccurate. And studies published in some of the most beloved Western medical journals – The Journal of the American Medical Association (JAMA) and the New England Journal of Medicine – have shown that it’s blatantly incorrect.
There has been some progress made on this front. In response to recent research focused on the spectrum of gluten reactions, the testing for gluten sensitivity can now be integrated with testing/differentiation of celiac disease. However, according to the American College of Gastroenterology, “a diagnosis of non-celiac gluten sensitivity should be considered only after CD has been excluded with appropriate testing.”
And to either confirm the diagnosis or rule it out, it requires the upper endoscopy small bowel biopsy.
This is where it gets a little controversial.
Conventional medicine stands behind the requirement of confirming the CD diagnosis to mandate the need for a gluten-free diet. However, more progressive practitioners don’t believe the above approach is always necessary to start the gluten-free diet. A few reasons why:
- The primary methods to detect and confirm the diagnosis (the transglutaminase blood test and the small bowel biopsy) require significant villous atrophy (death of the tissue in your small intestine), meaning you are at a later stage in the disease. The majority of people on the celiac spectrum are at early stages, so this test is not helpful. Thinking logically – would you want to wait for serious damage to be done before finding out the issue at hand and the way to prevent and correct it?
- Recent studies have shown that blood tests alone showing elevations in various IgG & IgA antibodies are reason enough to go off of gluten because of the significant risks of non-celiac gluten sensitivity (and the increased risk in morbidities & mortalities in this condition alone).
- Going under anesthesia and having a large piece of hardware shoved down your throat and down into your bowels kind of bites. Many would feel that anything to avoid this invasive procedure, while still properly treating the condition, would be a good game plan.
And whether you have celiac disease, a gluten sensitivity or just don’t want your intestinal health disrupted – the only answer is to eliminate gluten from your diet.
However, on the other side of the coin, the CD testing and subsequent diagnosis should ensure that you are getting the proper follow-up care from a team focused on the condition, which hopefully keeps you compliant with the gluten-free diet and improves the inflammation in your gut. Getting a specific diagnosis could also enhance future research on the disease. And, because of the strong genetic link with CD, it could alert family members of possibly having the condition as well.
So, should you get tested? The short answer is, you have to decide for yourself. For comparison, here’s how my journey led me to where I am now:
I have had blood work done to detect CD, but with conflicting results. Soon after my RA diagnosis (and before I went gluten free), I had a tissue transglutaminase test come back with a “weak positive,” (indicative of CD) and a negative result for the wheat IgG on the same blood draw. At the time, all of this was quite confusing. Granted, it occurred at the height of my “Holy shit, I have a new debilitating autoimmune disease and a newborn baby, both of which are kicking my ass” fog. To be honest, at the time I was having a hard time staying awake in general, so seeking out a gastroenterologist and researching the pros and cons of small bowel biopsies was not something I had the mental, physical, or emotional capacity for. I was lucky if I could take a shower and throw a PB&J down my throat on a daily basis.
To make matters worse, I was having a less-than-fabulous experience with my very conventional-minded rheumatologist. Quick refresher on that story: He was the charmer who told me I should feel lucky I was not in a wheelchair on my first visit after learning of my RA diagnosis. So I simply couldn’t bring myself to pack up the diaper bag and haul ass – baby in tow – to another doctor’s appointment that would for sure end with me crying in public.
However, the silver lining was that his brutal comment was enough inspiration for me to find better solutions, and with the help of my naturopathic doctor, embrace an anti-inflammatory (or elimination) diet. And I saw amazing results.
On a subsequent appointment with Dr. Wheelchair, after I openly disclosed I had completely eliminated gluten from my diet for several weeks, he ordered CD blood work. He simultaneously dismissed my report that after eliminating gluten, dairy, corn and soy, my fatigue and joint pain virtually disappeared.
The conversation went something like this:
Dr.: So, how have you been feeling?
Me: So much better! I went on the anti-inflammatory diet a couple of months ago – taking out gluten, dairy, corn and soy – and now my joint pain and fatigue has almost completely resolved.
[awkward pause as I waited for him to show some reciprocal excitement]
Dr.: Yeah, some people make a big deal out of that diet stuff.
[second awkward pause while I swallowed rising venom so I could speak without snarling]
Me (seething): Well, previously I was barely able to get out of bed, and my joint pain was so bad I could barely hold my daughter, so yeah, I would say it IS a big deal [asshole].
Dr. (befuddled): What did you take out of your diet again?
Me: Gluten, dairy, corn & soy, primarily. Not eating much sugar. Trying to avoid peanuts. I’m still taking my omega-3 supplements [which, by the way, he hadn’t volunteered research on until I pressed for it].
Dr.: Okay, I’m going to test you for celiac.
I just nodded in silence, incensed that I was in the care of someone who was not only unwilling to take a holistic look at the situation, but who was also so dismissive about nutrition. I knew that because I had cut gluten out of my diet several weeks prior, his recommended test would likely be negative regardless, and not surprisingly, I was right. The test results were negative.
So whether that means I never had CD in the first place – or that my gluten-free diet was just effective in eliminating the gut inflammation within the several weeks prior to testing – I don’t know. And for me, that’s okay. I have no desire to add gluten back into my diet for an extended amount of time (what is called a “gluten challenge”) to be tested again. I know that consuming gluten will exacerbate my potentially debilitating autoimmune condition, sending me right back to pain and fatigue – regardless of whether I have CD or not – and that is enough motivation to continue with a gluten-free diet.
I have since found a lovely, new rheumatologist who is fully supportive of managing my symptoms with my diet. And I’ve also tested positive for other anti-bodies, and negative (again) for CD. So, I have a diagnostic confirmation that I have some type of sensitivity to gluten, but it doesn’t matter. Honestly, I’m happier about the fact that my new doctor hasn’t once mentioned a wheelchair.
That was my path…what will yours be? The journey and the result are up to you. Suffering through a progressively debilitating disease is way scarier than eating quinoa pasta, if you ask me. So either take steps towards eliminating gluten from your diet on your own, or get to the doctor. Because if you have chronic symptoms that could be consistent with CD, simply dabbling in this gluten-free thing will not help you. (Remember that chat we had earlier about cancer? Yeah. You simply can’t phone this one in.)
Bottom line: you have to take action. If a blood test or a diagnostic procedure lights the fire that you need in order to commit to life-long compliance with a gluten-free diet, get after it. Work alongside a qualified healthcare practitioner, one well informed on the complete spectrum of gluten sensitivity issues. And that might be hard to find, but don’t settle. A good option is to look for a physician trained in functional medicine.
Along the way, be open to what you might find out. Keep in mind that tests are sensitive, and parameters shift depending on which test is being done. Ask questions. Be your own tireless advocate. Remember that a negative test result could be false. If you continue having symptoms, don’t assume the test is right and you’re wrong. Listen to your body and respect what it’s telling you, even if it doesn’t sync up with popular commentary. Testing negative for CD does not necessarily mean you don’t have a sensitivity, or that continuing to consume gluten won’t otherwise wreak havoc on your system.
Putting the Pieces Together
This was a lot to take in. So that it sticks, here’s the quick review for you:
- Wheat Allergy = Immediate, sometimes very severe reactions. Test for IgE antibodies. True wheat allergy is rare.
- Celiac Disease = Autoimmune disease with damage to intestinal wall. Immediate OR latent/hidden/elusive symptoms. Test for IgA antibodies (and/or others, including genetic tests). Conventional medicine requires a biopsy of the small bowel for confirmation of the diagnosis.
- Gluten Sensitivity = Immediate OR latent/hidden/elusive symptoms. Test for IgG antibodies (most common), also IgA or IgM. Can also be tested with an Elimination Diet.
- “Gluten Sensitivity” = “Gluten Intolerance” = “Non-Celiac Gluten Sensitivity” (“sensitivities” now the more accurate term).
- If you do get tested for Celiac Disease and it is negative, don’t discount that you could still have a Gluten Sensitivity (which comes with its own risk of increased morbidities and mortality, even without celiac disease).
- Work with a qualified practitioner well versed in the spectrum of conditions of gluten sensitivity for diagnosis, and work with a qualified nutrition professional to adopt a gluten-free diet in a healthy manner.
Okay. You still with me? Let this information sit a while. Think about it, read it again, do some research. Keep in tune with your body – it’s going to tell you in lots of different ways how you’re doing. I know there are a lot of solutions, and a lot of information out there. Some answers will be definitive and some will leave you with more questions. But the most important thing you can do is this: Weigh how you feel against what you’re willing to do in order to feel better, and then choose from your available options from that point.
Personally, I don’t need a biopsy to tell me how I feel when I eat gluten at this point. My body tells me loud and clear. So I follow the gluten-free diet religiously. It’s not about skinny jeans, or fads, or being viewed as the difficult diner when we’re out to eat. For me, it’s about my health, personal wellness, and honestly – my sanity. If I don’t feel good, I’m not putting good into the world via my kids, my marriage, or my work. I avoid gluten because I can’t afford to lay in bed suffering, and I refuse a life of pharmaceuticals and/or pain. Besides, my kids are little and I want to see them get big. That’s what it boils down to for me. My little people are relying on me to be my best, and this is what it takes for me to be there for them. I owe it to them, but even more so, I owe it to myself to be healthy and happy.
- “Diagnosis & Testing – Food Allergy Research & Education.” Food Allergy Research & Education. N.p., n.d. Web. 18 May 2014.
- Rubio-Tapia, Ablerto, MD, Ivor D. Hill, MD, Ciarán P. Kelly, MD, Audrey H. Calderwood, MD, and Joseph A. Murray, MD. “ACG Clinical Guidelines: Diagnosis and Management of Celiac Disease.” The American Journal of GASTROENTEROLOGY 108 (2013): 656-76. Web.
- Sapone, Anna, Julio Bai, Carolina Ciacci, Jernej Dolinsek, Peter HR Green, Marios Hadjivassiliou, Katri Kaukinen, Kamran Rostami, David S. Sander, Michael Schumann, Reiner Ullrich, Danilo Villalta, Umberto Volta, Carlo Catassi, and Allesio Fasano. “Spectrum of Gluten-related Disorders: Consensus on New Nomenclature and Classification – Springer.” BMC Medicine13 (2012): n. pag. Spectrum of Gluten-related Disorders: Consensus on New Nomenclature and Classification – Springer. BioMed Central, 01 Feb. 2012. Web. 12 Feb. 2012.
- Bizzaro, N., R. Tozzoli, D. Villalta, M. Fabris, and E. Tonutti. “Cutting-Edge Issues in Celiac Disease and in Gluten Intolerance.” Clinical Reviews in Allergy & Immunology3 (2012): 279-87. Web.
- “Celiac Disease: On the Rise.” Mayo Clinic’s Online Research Magazine. Mayo Clinic, July 2010. Web. 16 May 2014.
- “Screening – Celiac Disease Foundation.” Celiac Disease Foundation. N.p., n.d. Web. 15 June 2014.
- Matthews, Julie. “Food Allergies and Sensitivities and Gluten-Free/Casein-Free Diet.” Bioindividual Nutrition Advanced Training for Practitioners. 21 July 2014. Lecture.
- O’Bryan, Tom. “The Evolution of Autoimmune Disease.” The Evolution of Medicine. 14 Sept. 2014. Lecture.