Just over a month ago I worked up the courage to announce some big news… I’ve successfully been able to heal my body and re-introduce gluten into my diet! (This is a HUGE goal that I was set on achieving before starting a family.) If you haven’t read the intro to my story yet, that’s a great place to start as it contains some really important points that I won’t be repeating here. Within hours of hitting ‘publish’ I received an overwhelming amount of love and support. I feel very grateful to have such a strong community of people around me that believe deeply in the body’s ability to heal itself. Thank you for your encouragement, it has helped me find the strength to continue sharing my story despite the negative feedback I’ve received from those who are not yet ready to have their deeply held beliefs challenged.
Ironically, I can truly relate to these people because I used to be one of them. I distinctly remember having a conversation with one of my classmates at the Canadian School of Natural Nutrition back in 2005. The topic of Celiac Disease came up and she very boldly stated that she didn’t believe that CD was incurable and that it was indeed possible for the body to heal itself. I remember getting really angry and felt my blood starting to boil. While I kept my cool externally, internally I was MAD. All I could think of was, “How dare she say that? Who does she think she is? Clearly she doesn’t understand how serious and real Celiac Disease is!” Today, I need to find and thank that woman because SHE had the courage to speak HER truth and it planted a seed in my mind that maybe Celiac Disease wasn’t forever. While I didn’t know it at the time, THAT was the start of my healing journey even though I hadn’t even received a diagnosis yet.
photo credit: woodleywonderworks
I’ve decided to break my journey up into segments, which will make it a lot easier for me to write, and hopefully a lot shorter for you to read! I’ve determined that the best place for me to start is at the very beginning… sharing what my life was like before being diagnosed with Celiac Disease. Since I’m still very passionate and knowledgeable about the topic despite the fact that I can now eat gluten it’s my hope that this information will spread far and wide to help increase the diagnosis rate of Celiac Disease. It’s still a very real and serious condition that is grossly under-diagnosed and it’s very necessary to eat 100% gluten-free for a period of time (for most that will be forever) in order to help your body heal and break the cycle of inflammation and damage to the villi on your small intestine. As I mentioned in my previous post this is not a case of simply removing gluten from my diet and after a period of time being able to re-introduce it without any ill effects and just ‘thinking’ I am healed. I went through a much deeper healing process and want to be very clear that I do not recommend that anyone who has been diagnosed with CD eat gluten (even if they don’t feel any noticeable effects, because you could still be damaging your small intestine.) This post also warrants a reminder to my readers that I am not claiming to have found the cure for Celiac Disease or gluten sensitivity; I am simply sharing my personal journey. Okay, enough with the disclaimers and onto my story…
I could easily write a book about my health challenges through this period in my life but for the purposes of this blog post, I’ll keep it short and sweet. Just enough to give you some background information but not enough to bore you 😉 I spent the majority of my childhood and adolescent years in pain (physically and emotionally) and was often sick and unwell. I can’t remember exactly when it started because I have no memories of feeling healthy but I’ve been told that things started to shift for me around the time that my parents got divorced when I was six years old. While I don’t consciously remember the experience my family told me that I was very upset and like a typical child thought it was me that had done something wrong and caused the break up. It’s clear to me that this has nothing to do with my parents and everything to do with how I responded to their divorce as a young child. The separation was in the best interest of everyone and I place no blame on any outside sources for any of my life experiences. As a child who was nicknamed a ‘worry wart’ and felt excessively stressed all the time, it is interesting to note that the anger, sadness and grief I felt after the divorce was internalized and held within my body… not surprisingly, shortly after that my frequent stomach aches began. The stomach aches progressively turned into excruciating stomach pains, which there was no apparent medical cause for and I eventually received a diagnosis of IBS or Irritable Bowel Syndrome since nothing else was found to be ‘wrong’ with me. (I’ve read that 1/3 of Celiac Disease patients have been previously diagnosed with IBS.)
Growing up in an Italian family, wheat and dairy was eaten at every meal. Cereal with milk for breakfast, sandwiches for lunch and pasta with cheese for dinner. While I won’t be going into detail, I will simply say that mealtimes were the most stressful time of the day for me as a child. Knowing what I know now (and what my parents didn’t know at the time) Stress + Ingestion of Food = Poor Digestion. It makes perfect sense to me that I went on to develop an intolerance to both gluten and dairy. What started with frequent tummy aches, digestive problems and agonizing stomach pains as a child turned into bloating, fatigue, depression, brain fog, irritability and mood swings as a teenager and continued into my adult life. (85% of patients with Celiac Disease have a atypical, non-gastrointestinal symptom presentation.) At 15 I was diagnosed with clinical depression and given anti-depressants. They didn’t work for me and all came with a different set of horrible side effects. I decided they weren’t for me. Deep down inside I knew that it wasn’t normal for a 15 year old to be severely depressed. I then set out on a mission to read everything I could get my hands on that pertained to natural health, nutrition and alternative healing modalities. I was determined to find the cause of all my health complaints.
When I learned about Celiac Disease and found that my symptoms fit the picture perfectly I went to my doctor and requested a blood test (TTG-IgA). When the test came back negative I was confused because I was sure this is what I had been suffering from. (Years later I discover that I have an IgA deficiency so this test is inconclusive, but not necessarily negative.) By this time I had already removed dairy from my diet but was still unwell. I decided a trial of the gluten-free diet was in order and removed it to the best of my ability. All of my gastrointestinal symptoms went away within days and I felt better than I had in years. I was convinced that I had figured out what was wrong with me. After a year of eating gluten-free and still suffering from depression and anxiety I became very confused and started to think that I had made a mistake and that gluten wasn’t the issue because my depression had not subsided on the gluten-free diet. I was living on my own at 16, working full-time and going to high school full-time while trying to manage a gluten and dairy-free diet on a small budget, in a small town where no one knew what gluten was. I re-introduced gluten and felt fine, my symptoms didn’t worsen or get better. I put the whole ‘gluten-free’ thing behind me and continued on with my life.
Fast forward to 2006. I’m nearing the end of my studies in holistic nutrition (which had a dual purpose, to learn more about how to heal my own health challenges and to start a career where I could help others with all the knowledge I had gained over the years) and we start learning more about Celiac Disease. A light bulb goes off in my head. Since re-introducing gluten into my diet when I was a teenager, slowly but surely all of my symptoms had returned over the course of the months and years that passed and I hadn’t noticed the connection. On top of that I was dealing with secondary issues from my body’s apparent lack of ability to absorb nutrients properly. Again, the profile of Celiac Disease seemed to fit, so I went to go see my doctor and requested the blood test (TTG-IgA). Weeks later when the test results were in, I was really disappointed to discover that it was negative because I was convinced that I had finally found the cause of all my symptoms after years of health challenges. (In North America, it takes an average of 10 years to receive a diagnosis of Celiac Disease from the first onset of typical symptoms.) This time I didn’t give up, I started to research Celiac Disease extensively and learned that if you have an IgA deficiency then the blood test will be inconclusive (ie. even if you have CD it will come back negative.) I went back to my doctor and requested a Total IgA blood test… not surprisingly it showed that I had an IgA deficiency! (Immunoglobulin A or IgA is 10 to 15 times more common in patients with CD than in healthy individuals.)
The next step to getting a Celiac diagnosis (in most circumstances) is to be referred to a gastroenterologist for a biopsy of the small intestine to assess whether or not there is any visible damage to the villi, the tiny, hair-like projections that line the small intestine allowing nutrients from food to be absorbed. When people with Celiac Disease consume gluten, the villi become damaged and a person becomes malnourished, no matter how much food they eat. While this is the ‘gold standard’ for diagnosis, it can also provide false negatives if the few portions they remove to observe under a microscope are not damaged but other parts of the intestine are. Unfortunately, getting diagnosed with Celiac Disease isn’t black and white, they are many shades of grey since false negatives (and false positives, when it comes to blood testing) is possible.
I was referred to a gastroenterologist and had to wait 3 months for my consultation appointment while continuing to poison myself by eating regular amounts of gluten. (If you stop consuming gluten your intestines will heal and the biopsy will be inconclusive.) After my consultation, I’d have to then wait for a surgery date. While I recommend that clients get the biopsy so they have ‘proof’ that they have Celiac Disease in order to adhere to a 100% gluten-free diet, I struggled with the decision for myself. For one I KNEW that I had Celiac Disease and by this point I was so sick and so depressed that I was afraid I might not make it another 3 months (yes, I was THAT depressed and they couldn’t schedule me in any earlier.) Second, it’s an invasive procedure, albeit with only small risks but I was still uncomfortable with it. The biopsy would prove to the DOCTOR that I had Celiac Disease, not to myself.
On February 14, 2007 I went completely gluten-free. This was months before I received my diagnosis because I was so ill that I couldn’t leave the house and I was unable to follow through with my Valentine’s Day plans. I had reached my breaking point; I decided on that day, that with or without a diagnosis, I was committed to following a gluten-free diet for life.
photo credit: Whatsername?
Within days of removing 100% of the gluten from my diet I noticed a huge improvement. Within weeks I felt better then I had in my life and within a few months I was nearly free of ALL my symptoms. I felt like a completely different person. I remained healthy and happy as long as I adhered to a 100% gluten-free diet. Any amount of cross-contamination (I’m talking a fraction of a bread crumb here) would cause a debilitating return of my symptoms and the effects would last up to 2 weeks. I finally understood why I didn’t experience relief from my depression the first time I went gluten-free for a year when I was a teenager. It’s because I was not 100% gluten-free! I was probably really close but that wasn’t enough. Being trained as a nutritionist and having studied Celiac Disease I was now able to look back and see that even though I was doing my absolute best, I was still getting very minute amounts of gluten in my diet and that was triggering me. When I learned this time around that even a tiny amount of gluten would cause symptoms for up to 2 weeks it made sense that I had struggled with depression almost non-stop that whole year I was gluten-free. This provided a huge amount of insight for me, because I had known years ago, that gluten was an issue but since testing couldn’t prove it, I questioned my intuition.
I returned to my doctor and shared with her how I felt on a 100% gluten-free diet and what would happen if I consumed a small amount. It truly felt like I had experienced a miraculous recovery. Since I was no longer a candidate for a biopsy as I was already gluten-free, I requested a gene test to determine whether or not I carried one or both of the two genes (HLA-DQ2 and/or HLA-DQ8) associated with Celiac Disease. This test is not affected by a gluten-free diet.
Here is some background information on gene testing from Dr. Alessio Fasano, who is the director of the Center for Celiac Research:
“Celiac disease (CD) is an immune-mediated disease of the intestines that is triggered by the ingestion of gluten in genetically susceptible individuals. Gluten is the major protein component of wheat, rye, and barley. Genetic predisposition plays a key role in CD and considerable progress has been made recently in identifying genes that are responsible for CD predisposition. It is well known that CD is strongly associated with specific HLA class II genes known as HLA-DQ2 and HLA-DQ8 located on chromosome 6p21. Approximately 95% of CD patients express HLA-DQ2, and the remaining patients are usually HLA-DQ8 positive. However, the HLA-DQ2 allele is common and is carried by approximately 30% of Caucasian individuals. Thus, HLA-DQ2 or HLA-DQ8 is necessary for disease development but is not sufficient for disease development; its estimated risk effect is only 36-53%.”
I carry the HLA-DQ2 gene.
Let’s break this down even further, in plain English… Celiac Disease is genetic, meaning it runs in families. Approximately 30% of Caucasian individuals carry the HLA-DQ2 gene but not all of them will go on to develop CD therefore genetic testing alone cannot be used to diagnose Celiac. It can however, be used to rule it out. What is important to note is that an individual can carry this gene and NEVER go on to develop CD in their lifetime OR they will carry the gene and it becomes triggered at some point in their life (after surgery, pregnancy, childbirth, viral infection or severe emotional stress such as divorce, death of a loved one etc.) and they develop Celiac Disease at that point in their life. Of those that are diagnosed with Celiac Disease (presumably by a positive biopsy test) approximately 95% carry the HLA-DQ2 gene.
Sound confusing? The road to a clear diagnosis is for most people. That’s probably one of the reasons why the Canadian Celiac Association reports that the prevalence of Celiac Disease is approximately 1:100 in the North American population and approximately 97% of individuals with Celiac Disease are undiagnosed. With an incredibly low 3% diagnosis rate, CD is one of the most under diagnosed diseases in North American today. This has led to the metaphor that diagnosed Celiacs represent only the visible tip of a much larger undiagnosed iceberg.
My blood test for CD was inconclusive due to an IgA deficiency. A biopsy would have also been inconclusive because I had already removed gluten from my diet. The ‘gold standard’ for diagnosis was no longer possible.
Based on the fact that I carry the gene associated with Celiac Disease, my symptoms started after experiencing severe emotional stress as a child (increasing the probability of the gene being triggered), having typical and atypical signs and symptoms of CD which dramatically cleared up on a gluten-free diet and returned with a ‘gluten challenge’ my doctor diagnosed me with Celiac Disease and advised me to adhere to a gluten-free diet for life.
Why am I giving you so much background information?
Because the Canadian Celiac Association does not recognize my diagnosis as ‘official’ (even though my doctor gave it to me) so I want to lay all my cards on the table, face up so that there is no confusion or misrepresentation. I am fully aware that having a positive biopsy is the ‘gold standard’ for diagnosis but my doctor thought otherwise, based on MY individual case, which I greatly appreciated after years of being misdiagnosed.
At the same time I can appreciate how one could argue that maybe I never had Celiac Disease to begin with and that it was simply an allergy or sensitivity to gluten that I ‘grew out of.’ While I agree that I may never have had the intestinal damage to begin with (I’ll never know for sure), I disagree that it was simply an allergy that I grew out of. This is something that I had to work extremely hard at, which I’ll explain in further detail in another post. I will never be able to prove with 100% certainty (by medical standards) that I had intestinal damage that accompanied all my symptoms (and I don’t intend to allow it to come back just to prove my point.) It was clear to me and to my doctor that my body was suffering from malnutrition, likely from malabsorption and that I wasn’t suffering from a classic IgE mediated allergy. What cannot be argued is that for the 3 years I was 100% gluten-free, I would react very strongly to gluten (right up until I ate gluten one day with no ill effects). I have experienced a major breakthrough in my health!
“Whether you think you can, or you think you can’t – you’re right.” ~Henry Ford
I also understand and appreciate how one could believe that healing Celiac Disease and being able to eat gluten without intestinal damage is impossible because it’s an “incurable” disease, but I have to disagree. The field of science called epigenetics is teaching us that your DNA doesn’t predict your destiny. It’s showing us that genes can essentially be turned “off” just as the gene can be triggered to turn “on” (Remember I mentioned earlier in my post how you can carry the celiac gene and either never go on to develop CD or you can carry the gene and it becomes triggered at some point your life – after surgery, infection, severe emotional stress etc. and you develop CD.) Since your internal and external environment determines which of your genes will be expressed I always wondered if the Celiac gene can be triggered to turn on, why can’t it be triggered to turn off? (I highly recommend watching this video explanation of ONE component of epigenetics, the power of your thoughts and beliefs, by Dr. Bruce Lipton.) I believe that my Celiac gene is no longer expressing itself and THAT is why it’s possible for me to eat gluten again. In short, I believe that I have brought my body back into homeostasis, where illness and disease is no longer able to thrive and this new, healthy environment doesn’t allow the celiac gene to express itself anymore (which took me over 3 years to accomplish.) I am not however, claiming to have found the cure for Celiac Disease. I am simply sharing my experience, detailing what it took to bring MY body back into homeostasis so it’s full health potential could be expressed. This journey will be different for everyone. I can’t and won’t be creating a protocol that everyone can follow to achieve the same results! This is a HUGE topic and one I’m not going to delve into right now because I’ll cover it in future posts. In the meantime, if you’d like more information I highly recommend reading ‘The Biology of Belief’ by Dr. Bruce Lipton. That’s a great place to start if you want to learn about the science behind epigenetics. Having the opportunity to meet and listen to Dr. Lipton in 2009 literally changed my life.
If you’ve made it this far, thank you so much for reading!
It has taken me over a month (since writing my last post) to work up the courage to continue sharing my story. The love and support you’ve shown me has been overwhelmingly positive and has encouraged me to continue sharing my journey, one post at a time. As you can imagine there is SO much more left to tell you…
March 2013 Update: I’m WAY busier than I expected to be with my 9 month old daughter and running my business. I haven’t been able to find the time to sit, reflect and write about my experience of healing my gluten intolerance yet and had no idea at the time I wrote this post that it would take this long. Please understand that I WANT to share my story with you, I just need to prioritize my time right now and baby Madison is my first priority. I am celebrating 3 years of being able to re-introduce gluten into my diet this month. If it were as easy as telling you to do A. B. C. then I’d just post it but it wasn’t that easy. It took years to to get to where I am today, healthy and thriving with NO food allergies, sensitivities or intolerances for the first time in my life. I can promise you that I’ll share the rest of my story, I just can’t make any promises as to WHEN I’ll be able to do it. I’m sure life with a new baby will settle down at some point and I’ll be able to return to writing and blogging. Thank you for your patience and I apologize for not being able to respond to each comment right now.
October 2013 Update: PART TWO is now available!