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My Journey with Celiac Disease, Gut Problems and Oxalate Toxicity

As a kid…

I remember having on/off digestive problems quite often and when I did it was off to the pediatrician’s office again but they never found anything major so the usual home remedy became a spoonful of Pepto-Bismol to ease the bloating and constipation. I’m now aware of how my digestive issues may have affected my nutrient absorption in my childhood years. It explains why I was not the most energetic child at school. During my school field day trips taking part in the egg relay race was about all I could do. That’s because you can only go so fast without dropping the egg off the spoon. I never had the energy for activities that involved running. I just couldn’t keep up. Living with abdominal discomfort became the norm for me so I just learned to live with it. That is until I hit my early 20’s. This is when it took a turn for the worse.

Where did my health journey begin…

 

Midway into my early 20s I went through a major emotional crisis and from that point on my health began to spiral downward out of control. All of the digestive issues that I had as a child became more magnified. I felt bloated after every meal and the food seemed to just sit in my stomach for days. Often, these symptoms were followed by chronic abdominal pain, vomiting and irregular bowel movements. I also battled with acne, memory problems, fatigue, muscle pain, bone pain, depression, feeling gassy, stomach pain, decreased motivation, and a sharp drop in weight and/or difficulty keeping weight on. To be honest, the list is too long to list here. Back then I wasn’t sure where all of these symptoms were coming from, or what to address first. I had a difficult time trying to decide what kind of doctor I should go to besides the obvious, a gastrointestinologist. The truth is that all these symptoms were contributing to my misery but the one thing I knew for sure was that my digestive system was failing me, so I started there first.

My first visit to the doctor started out hopeful but after my 9th, 10th, and so forth visit, and over a period of nine years, I became discouraged. During these 9 years I had multiple blood work done followed by endoscopies, and other suggested procedures and pharmaceuticals. This course of action left me with more questions than answers and the prescribed medications seemed to be of little use. On the contrary, some made me feel worse. This process was repeated over, and over again with every new physician but the end results were always the same. Although I continued to struggle with my declining health doctors couldn’t find anything wrong with me. Some even suggested that it may be psychosomatic. 

My health continued to deteriorate and I was barely holding on to my 100 lbs. The reactions that followed after eating had become so severe that I developed a fear of food, but this was not your common typical food phobia disorder, it was an anxiety caused by the anticipated response that usually followed after eating. Every meal ended up in one of two ways, either I remained no worse than what I was before, or I stayed up all night “opening up the sluices at both ends”. I remember looking at my reflection in the mirror one day and noticing how fragile I had become. I looked tired and weak, and when I ran my fingers through my hair the slightest pull would leave clumps of hair in my hands. I thought to myself at the time, “I’m going to die and there’s no one to help me.

What was the turning point…

One afternoon I was sitting at the edge of the bed and went to get up to go to another section of the room, but when I did both of my legs gave out and I just dropped to the floor. It felt like someone knocked my knees out right from under me. I laid on the floor for a few minutes before trying to get up. Actually, I was quite shocked, this never happened before. When I attempted to get up from the floor I couldn’t feel my legs. It was the scariest moment of my life but it was also the turning point. As I laid there I thought to myself, “I can’t continue like this”. I don’t want to be at the doctor’s mercy any longer or be subjected to their biased opinions when it comes to my health. “If I’m ever going to find out what’s wrong with me I’m going to have to take charge of my own health, and so I did, but it was not without its own challenges.” You see, most doctors are not willing to order tests that patients think may be helpful or necessary because they think patients don’t have the acquired knowledge to be part of their own diagnostic decision making. Instead, they are more likely to give you an improbable explanation for your symptoms or write them off as psychosomatic when every test they run is negative but your symptoms persist. It’s unfortunate, but when you’ve reached this point with your physician they lack the due diligence to pursue the cause of your symptoms any further.

The challenges I overcame…

Getting doctors to listen to my needs and health concerns was one of my biggest challenges. This resulted in me having to go to multiple doctors. However, in the process of searching for the “right one” I learned that sharing my full medical history with the present physician was actually hindering me. Rather than the doctor being open to other possibilities they became an anchoring bias, so I began to refer to my almost 9 years chronic condition as being a couple of months old. I also left out details about previous procedures and blood work that I had done. It was part of my desperate attempt to try to get them to do something new or different than what had already been done before. 

However, after exhausting all avenues, and with no relief at the end, I was always left feeling hopeless and frustrated. I couldn’t seem to get away from constantly hitting that brick wall. I either walked away with an IBS or gastritis diagnosis, but without the least medical knowledge it was hard to tell if I was being overlooked or misdiagnosed. Given that the doctor had the medical training and I didn’t, it put me at a disadvantage. My suggestions for thinking along a different path or running certain tests were always dismissed or ignored. I came to the conclusion that in order to be taken seriously I am going to have to start communicating in their language. That meant getting familiar with medical terminology and learning a bit about how the body functions.

I was strolling down Columbus Avenue in Manhattan one day and came across a bookstore. Outside its front door were several paperbacks laying on a table. As I was passing by a small brown hardcover book caught my eye, the title read “Self-Diagnostic Guide”. I felt like I found a jewel that day. I thought to myself, “maybe the answer to my problem lies somewhere between the pages of this book”. I bought the book but when I started flipping through the pages I realized I didn’t have a clue of what it was talking about. I stumbled over every couple of words because I didn’t understand the medical terminology. 

Nonetheless, it was still useful. I just had to rely on a medical dictionary for better understanding. Moving forward, I enrolled in college and was accepted into the Physical Therapy Assistant program. The timing was perfect. One of the program’s course curriculum was learning medical terminology which I was looking forward to. The additional courses in kinesiology and biology would provide me with the foundation that I needed to further my knowledge and understanding in prep to continue my health quest for answers.

Finally a breakthrough…

When I wasn’t in school I spent most of my afternoons sitting in the doctor’s office. Not because I was expecting anything different, it was the fact that this had become a routine for me after so many years. I was just going through the motions. In a sad way I had come to terms with my health condition. Feeling miserable was going to be something that I’m going to have to live and deal with for the rest of my life. However, through the years I battled with that concept and despite the circumstances I managed to hang on to hope even if it was just a glimpse of it.

This time around was different though. I felt more confident sharing my knowledge during my doctor-patient visits because I had a better understanding of how the body functions. I knew enough to know whether or not I was being overlooked. I was also better equipped to challenge their opinion if I didn’t see eye to eye with them. That old “Self-Diagnostic Guide” was like a buddy to me, it came with me whenever I went to the doctor. I had pages already marked off in the event that I would need to refer to them to prove my point and fight my anticipated battles if I had to.

So here I was sitting at another doctor’s office again. After the consultation we agreed on blood work and setting a date for an endoscopy. Again, this was all routine for me but I went along with it and had it done. A couple of weeks later I went back for my results but the news I received left me stunned. I couldn’t believe it, he actually found something. He said, “Ms. Aponte your endoscopic biopsy results tested positive for Celiac Disease”. I couldn’t believe it! I began to cry and laugh at the same time. I was just filled with joy to discover I had Celiac Disease. I didn’t know what Celiac was at the time but at that moment it didn’t matter. I was just so relieved to finally receive a diagnosis that fit most of my symptoms along with the test results to support it. After I pulled myself together I asked, “What is Celiac Disease.” He explained what it was but mostly emphasized on the diet I would have to maintain. I had to avoid gluten which included things made from wheat flour, rye, oats, and bran. I thought to myself, “that’s it, I can do that, sounds simple enough”. All the years of hardship, searching and never giving up hope finally paid off. I started this journey at the age of 23 and I finally found my answer at the age of 32, nine years later.

More challenges to overcome…

 When I was diagnosed with Celiac Disease it was such a relief to finally find out what was wrong with me but I had no idea of the challenges that laid ahead. I knew I had to change my diet, and cutting out all wheat, rye, oats and bran was the first step, but that was easier said than done. Neither of us (me nor the doctor) were aware that it’s going to take a lot more than just avoiding those items. That’s because very little was known about Celiac Disease back then in comparison to today. Even though it has come a long way, there is still work to be done to improve gluten free labeling. It wasn’t until recently that manufacturers were given guidelines to follow for the manufacturing of gluten-free products. I was diagnosed in a time era where gluten-free food sources were scarce or unheard of. Rice cakes was one out of the two options that were available for replacing bread. The other was an awful frozen loaf of bread that tastes grainy. I was also not aware of the hidden gluten lurking in unexpected food items or personal products. Getting exposed to gluten from cross-contamination during the manufacturing process was another big problem. Despite doing everything right, or so I thought, I was still getting sick. I later learned that I wasn’t as gluten-free as I thought. Keeping gluten out of my system was hard work and not as easy as I originally thought.
 

Trying to follow a gluten free diet was a task in itself. To make matters worse, I now needed to learn and understand the food labeling industry. In the beginning, most of my grocery shopping time was spent reading labels at the supermarket. I began at 9:00 am and would sometimes leave late afternoon along with the morning shift crew as they were clocking out. My whole time was spent looking for disguised gluten on the package labels. I also had to be careful when dining out. Although I tried my best to pick the safest item on the menu I still had concerns about what may be going on in the kitchen. Some of the questions that ran through my mind was, did they prepare my dish on the same counter contaminated with gluten, or did they fry my burger on the same grill top with bread crumbs. Taking over the counter medications, supplements or prescribed medicine was another gluten trap. I regularly found myself on the phone with manufacturers and pharmaceutical companies inquiring whether or not their products were gluten free.

Life started to feel like a booby trap wherever I turned. Doctors were not too knowledgeable on the ins/out of living gluten free past their office so a lot of this I had to learn through trial and error and support groups. Over the years gluten free foods got its own category in the food industry. Products labeled “gluten free” started popping up in every supermarket and health food store. However, not everything that’s labeled gluten free is truly gluten free. In order to determine if a product is safe you have to look into the manufacturing practices and check for other sources of gluten in the ingredients. Unfortunately, the present FDA ruling allows products with up to 20 ppm of gluten to be labeled GF. For those of us with Celiac Disease, the constant exposure of 20 ppm is enough to cause damage to the intestinal lining and put us down for a minimum of a couple of weeks if not more.

Learning the ropes of how to live with Celiac Disease was an overwhelming task, especially for a newbie like me. However, I longed to know what feeling healthy really felt like so I made it a point to learn everything I could about my condition. It was a lot to handle in the beginning, both mentally and physically. I couldn’t participate at parties or events like everyone else. I really had to be on my toes wherever I went whether it was dining out, traveling, or attending an office luncheon. It was a major lifestyle adjustment at the time. Keeping up with the expectations of being a society member was also becoming impossible for me. I was having a hard time meeting the demands of my present job. That’s because despite doing everything right or so I thought, I still had lingering symptoms that interfered with everyday life, including work. My sleep was constantly interrupted by having to go to the bathroom every half hour to relieve my bladder so I never had a good night’s rest. Unfortunately, I had taken too many sick days off and when layoff time came around it was not surprising that I was one of the first to be let go.

Discovering a new way of thinking about health…

I will always be thankful to the doctor that finally diagnosed me with Celiac Disease but as I continued in my health journey I discovered my body needed something more that was beyond the scope of what traditional medicine could offer. This is partly due to conventional medicine’s principles and way of thinking. Once you are given a diagnosis all of your symptoms are crammed into it. As a result, the doctor’s effort to look further for other causal factors ends with your diagnosis. I was misdiagnosed for a long time and the delayed diagnosis came at a price. My body had endured a lot over the years and although the Celiac diagnosis explained a lot, it didn’t explain some of the other symptoms that I had. Given how closely the brain and gut interact I believe the earlier stressful years of my life may have also been a contributing factor to my poor gut health.

I never stopped looking for treatment options but this time my research led me to the principles and practices of holistic medicine. Long story short, I developed a passion for it. I discovered a new approach to health and it was here where I found the missing pieces to the puzzle. The damage imposed on my body had gone further than I could have ever imagined. Over the years I developed a leaky gut and didn’t even know it. This became the open gateway for all the bacteria and toxins in my digestive tract to enter into my bloodstream and cause havoc in my body. Functional lab work revealed that I was dealing with multiple gut infections, food sensitivities, detoxification problems, an oxalate problem, hormone imbalances, and so on, (see full list below). 

Conventional Medicine failed to make these findings but there’s a reason for this. Functional medicine looks for the root cause of what triggers diseases in areas that traditional doctors don’t explore. A leaky gut is not something that traditional doctors treat. In addition, the medical industry does not train doctors on how to find and eliminate these triggers. Instead, it’s designed to manage the disease or illness and keep you on pills. Healthy people kill business profits! The economy needs you to be sick, and to stay on those pills. There will always be a need for conventional medicine but until then, I will continue to practice preventive care. Over time I have conquered many health issues but due to this fallen world that we live in, filled with pollution and toxins, maintaining my health will be an ongoing work in progress throughout life.

This is a short list of  symptoms and problems functional lab tests revealed:

  • Severe Acne
  • Hair loss
  • Adrenal dysfunction
  • Poor Detoxification
  • Congested liver
  • Chemical sensitivity
  • Light sensitivity
  • Brain fog
  • Joint pain and severe stiffness
  • Copper Toxicity due to contraceptives
  • Other Metal toxicities
  • EMF Sensitivity
  • Oxalates (the cause of my EMF sensitivity & frequent urination at night)
  • Ochratoxin Mold
  • MTHFR
  • Vitamin and Mineral Deficiencies
  • Hormone Imbalances
  • H. Pylori and other pathogens
  • Food sensitivities and Intolerances (other than gluten)
  • SIBO (Small Intestinal Bacterial Overgrowth)
  • Candida Overgrowth
  • Leaky Gut
  • Recurring UTIs and bladder dysbiosis etc.
  • Some of the lessons that I learned during my journey….

When I first started this journey I felt hopeless and destined to feel sick for the rest of my life. My health journey has empowered me with knowledge and gave me the confidence to become my own advocate. I learned and accepted the fact that:

The medical industry doesn’t always have the answers you need, nor do they know what to look for beyond their medical training.
You need to take charge of your own health because no one knows your body like you do.
There are hidden stressors found at the subclinical level which can be detrimental to your health and are often the culprit to our deteriorating health.

Detoxification and hormone balance is so essential for health and well-being.
I had to go beyond just eating gluten free to figure out what foods were right for my body.
I learned that transforming my health by using natural basic principles is possible!

Where am I now….

 

Today I find myself in a much better place than where I was years ago. My health has improved dramatically and my body continues to transform. Every now and then I do have a health hiccup but with my new acquired knowledge as a FDN Practitioner I know what to do to get back on track. It no longer takes years or months at a time. My doctor’s visits are minimal if any at all. My healing journey has led me to reach a level of health that didn’t seem possible with conventional medicine but was attainable through functional health practices. I continue to be fascinated by the human body and its innate ability to heal itself when you give it what it needs.

Why I do what I do now…

 

The earlier years of my health crisis were torturous and unnecessary. It’s unfortunate but the medical industry’s way of thinking hasn’t changed much. I still see doctors stopping short at finding the root cause of symptoms and health issues. More often than not, the root cause of disease lies far removed from the dysfunction in the body. Rather than digging deeper to find the underlying causes, symptoms are masked with pills or worse, people are sent away because their symptoms are considered nonspecific or non-life threatening. No one should have to go through what I did. I wish I knew then what I know now but you can’t buy back lost time. I also wished I had a guide to help me rather than having to figure it out on my own. It was really overwhelming back then. Perhaps it could have saved me years of misery if I had found someone with the knowledge that I have today to help me.

It has become my passion to empower others with the same knowledge and tools that I have acquired so that they too may be able to make healthy life-style choices, live a disease-free life and enjoy life to the fullest even in their old age. With the right tools and resources you don’t have to spin your wheels for months or even years as I did. By utilizing the right functional lab testing we can find what are the underlying causes to your symptoms, and I can help design a healing program from the inside-out that’s unique to you. It’s my desire to pass on to you the same knowledge and guide you through this process. With the right tools and resources optimal health is possible!

I hope you are inspired by my journey and never give up on your own. Schedule a complimentary qualifying session with me here to start your own health journey today!

To your health,

Sally Aponte

Functional Health Consultant | PTA