They say time flies when you're having fun, but I'd like to amend that saying to be: "Time flies when you're busy solving a mystery!" Ha! But in all seriousness, I had a pretty busy time period where I continued with more testing after learning I had Crohn's. We sought to uncover exactly what was going on in my body, and that called for what felt like an endless stream of blood tests & other send off tests. I was anxiously waiting on all the results and the ability to put more pieces of the puzzle together. This was probably the "slowest" time of them all...the waiting game. I will say that this was NOT a cheap endeavor, and one that costs thousands of dollars out of pocket. Sadly, no amount of private insurance covers these kinds of specialized tests, and it's one of the big reasons why I keep advocating for change. Healing from Lyme Disease (and the conditions they create) should not force someone to clean out their savings in order to survive. But, that topic is for another day! I just wanted to mention this because although I speak about these pricey tests on my blog I understand not everyone can afford them. This isn't ever an endorsement, but rather a sharing of my experience for those who like to read about it.
There were a lot of labs used, and a lot of tests ran. But for the sake of this blog post I am just going to talk about what I had looked at with Cyrex labs, because I think this will be the most interesting for those following along. Cyrex laboratories offers some of the most fascinating test panels. I would say that they are a leader in immune function/autoimmune testing across all parts of the body, and can help provide answers and insight to people struggling with any variety of chronic illnesses. One of the first tests I had ran was the "Array 10-90: Multiple Food Immune Reactivity" panel. This is food immunology testing using a combination of both IGG and IGA. What sets Cyrex apart from the other companies offering food allergy testing are a lot of big components. Most people know by now (or you can do a quick google search) that a lot of companies have capitalized on people with food senstivities by offering pricey testing panels of $800+ which are completely bogus. These so called companies advertise in places like Instagram where they tell people that they will lose "bloat, brain fog & feel more energized" if they remove a few foods they may be sensitive to. The problem with these claims is that they have been debunked many times over. Doctors have taken blood from the same patient but sent it off with two separate names, and got back two opposite results. The results from these companies are completely unreliable and a huge waste of money. This is where Cyrex prevails. For one, they are a legitimate laboratory who have endless case studies in medical journals, but secondly they run the same test TWICE on each blood sample. If the test does not identically match up on both runs they do not send out the results. This made me feel completely at ease, because I knew I could actually trust this lab. The physicians who have used Cyrex have had correlation between results and patient improvement. So, that is a huge distinction. Another cool thing Cyrex does is that they test the foods in the forms you eat them. For example they will test cooked potato, not just 'potato' like most companies, since we eat potatoes cooked and that changes the molecular makeup of the food. They also checked eggs cooked, and things like broccoli both cooked and also raw. It makes the test way more accurate, because those changes make a big difference.
So, back to the Array 10-90 test. It looks at about 200 foods, including herbs, spices and gums. This is a combo tests which also has a panel that looks at "foods over-consumed on a gluten free diet." This includes grains like rice, amaranth, buckwheat, quinoa, etc. When I got my results back imagine my shock when I saw that about 95% (yes, NINETY FIVE percent) of the tested foods were reactive. Aka, when my body was exposed to these foods the white blood cells came to attack, histamine was released, mast cells started to degranulate, and there was a full fledged freak out. The paper I got back basically said (in layman's terms) that 95% of all the foods will cause my body inflammation and pain if I try to eat them. The trouble is, there was hardly anything on that list which was deemed "safe," so in a nutshell every time I ate anything I created an inflammatory response throughout my body. My body, for whatever reason, created antibodies against these foods essentially deeming them an intruder. My body has mislabeled something as innocent as a carrot and accidentally targeted it as an invader.
As you can imagine, this was not a normal response. We knew something was definitely amiss from just that one result, and that prompted further testing. Most of the time when a person has a lot of food intolerances they say it's caused by Leaky Gut or SIBO. Cyrex has a Leaky Gut panel, which they call the "Array 2: Intestinal Antigenic Permeability Screen," and I had that ran. It looks for IGG/IGA/IGM antibodies to 3 separate proteins. These proteins will be present in the blood if parasite, virus or yeast's from the stomach make it's way into the blood when the permeability of the gut is impaired. It looks at the Actomysen Protein (Parasites), Occludin/Zonulin Protein (viruses), and Lipopolysaccharides (yeast). A video talking more in depth about this test can be found here. It's a really cutting edge test, and highly accurate if a patient has Leaky Gut of any kind. For me that test came back completely negative, which means I am not dealing with a Leaky Gut situation anymore. I kind of suspected this, because I have seriously been so on top of it with healing my stomach throughout the last 4-5 years, so I was pleased to learn that my hard work payed off at least in that regard. The next test I had ran was looking to see if I was dealing with SIBO. This was their "Array 22: Irritable Bowel/SIBO screen." This looks for Bacterial-Toxin induced damage to the gut. If you have SIBO (small intestinal bacterial overgrowth) from either yeast or bacteria then the toxins from it will cause damage to the gut. This blood tests looks for those markers by looking for IGG/IGM/IGA antibodies to Cytoskeletal Proteins & Bacterial Cytotoxins. This test is brand new, and was only unveiled in March of 2017. It has been undergoing rigorous testing and studies in medical journals before it was brought to the public, so I feel really lucky to have been able to have this test ran. Even luckier for me, this test also came back negative on all accounts for having SIBO. Thankfully, that was also not my underlying cause.
So now the puzzles pieces to this mystery were slowly but surely falling into place more as each piece so of evidence began flowing in. I had a few others test panels ran, and when those were added into the mix it became obvious to myself and my Doctors that I had a serious autoimmune issue going on. For whatever reason my autoimmune system is on overdrive, and it is attacking all different parts of my body (as well as foods I put into it) improperly. It doesn't even take the time to distinguish the good from the bad, it is just in attack mode 24/7. This is likely what has been fueling my Crohn's as well, because it's impossible for my gut lining to heal if my own body is continually attacking it when it should not. This has posed an interesting task of figuring out how to calm down my overacting immune system so that it stops going after everything it sees.
Since getting my test results back we've been working on a game plan to tackle this issue, and I have been refining my diet big time. Since I obviously can not stop eating 95% of all food it has taken a complete overhaul to find my biggest triggers so I can avoid them. And truth be told, my triggers can change on a dime. Some days I may be okay with a food, and others days I absolutely can not tolerate it at all. Every single thing has to be made from scratch at home, and when I say everything I mean every last thing. Homemade vegetarian "soy less" soy sauce, homemade vegetable broth, homemade vegan mayo. All the small condiments you have on hand to cook with have all had to be tailored to work for my highly sensitive body. I hope and pray that with time I can reach a place where my body isn't cycling through and reacting to such extremes as it currently is now. Right now it is all a work in progress, and I will dedicate a later blog post discussing what I did/tried etc. Truth be told, I still very much have my bad days/flares where I curl up in a ball from pain, go on a liquid diet, and can't move from my bed for a week. Other times I have less pain & a better ability to eat solid food. It varies a great deal, especially as I experiment with treatment. Managing these Crohn's issues which came on top of my other neurological Lyme issues has been a real lesson in patience, but one which I am slowly understanding better each day. It's a juggling act, but I always say "if there's a will, there's a way." And boy do I have a will! I'm still finding my balance, but I'll get there.
For now that is all for this update! There has been a lot going on, and I have quite literally just been taking it one step at a time. One moment at a time. And trusting that God sees the bigger picture for me. I really try to focus my energy on enjoying each good day, or each good moment. No matter how "small" it may seem, I want to relish in the little joys of each day. Sometimes it can be hard (especially lately), but I have hope.
xoxo,
Christina
PS - This year I was nominated for the WeGo Health Awards for "Best in Show: Blog." If you enjoy this blog and want to help endorse me, please click the graphic below and that will help me a lot! Endorsements are open until September 1, 2017. Thank you so so much for those who nominated me this year!
There were a lot of labs used, and a lot of tests ran. But for the sake of this blog post I am just going to talk about what I had looked at with Cyrex labs, because I think this will be the most interesting for those following along. Cyrex laboratories offers some of the most fascinating test panels. I would say that they are a leader in immune function/autoimmune testing across all parts of the body, and can help provide answers and insight to people struggling with any variety of chronic illnesses. One of the first tests I had ran was the "Array 10-90: Multiple Food Immune Reactivity" panel. This is food immunology testing using a combination of both IGG and IGA. What sets Cyrex apart from the other companies offering food allergy testing are a lot of big components. Most people know by now (or you can do a quick google search) that a lot of companies have capitalized on people with food senstivities by offering pricey testing panels of $800+ which are completely bogus. These so called companies advertise in places like Instagram where they tell people that they will lose "bloat, brain fog & feel more energized" if they remove a few foods they may be sensitive to. The problem with these claims is that they have been debunked many times over. Doctors have taken blood from the same patient but sent it off with two separate names, and got back two opposite results. The results from these companies are completely unreliable and a huge waste of money. This is where Cyrex prevails. For one, they are a legitimate laboratory who have endless case studies in medical journals, but secondly they run the same test TWICE on each blood sample. If the test does not identically match up on both runs they do not send out the results. This made me feel completely at ease, because I knew I could actually trust this lab. The physicians who have used Cyrex have had correlation between results and patient improvement. So, that is a huge distinction. Another cool thing Cyrex does is that they test the foods in the forms you eat them. For example they will test cooked potato, not just 'potato' like most companies, since we eat potatoes cooked and that changes the molecular makeup of the food. They also checked eggs cooked, and things like broccoli both cooked and also raw. It makes the test way more accurate, because those changes make a big difference.
So, back to the Array 10-90 test. It looks at about 200 foods, including herbs, spices and gums. This is a combo tests which also has a panel that looks at "foods over-consumed on a gluten free diet." This includes grains like rice, amaranth, buckwheat, quinoa, etc. When I got my results back imagine my shock when I saw that about 95% (yes, NINETY FIVE percent) of the tested foods were reactive. Aka, when my body was exposed to these foods the white blood cells came to attack, histamine was released, mast cells started to degranulate, and there was a full fledged freak out. The paper I got back basically said (in layman's terms) that 95% of all the foods will cause my body inflammation and pain if I try to eat them. The trouble is, there was hardly anything on that list which was deemed "safe," so in a nutshell every time I ate anything I created an inflammatory response throughout my body. My body, for whatever reason, created antibodies against these foods essentially deeming them an intruder. My body has mislabeled something as innocent as a carrot and accidentally targeted it as an invader.
As you can imagine, this was not a normal response. We knew something was definitely amiss from just that one result, and that prompted further testing. Most of the time when a person has a lot of food intolerances they say it's caused by Leaky Gut or SIBO. Cyrex has a Leaky Gut panel, which they call the "Array 2: Intestinal Antigenic Permeability Screen," and I had that ran. It looks for IGG/IGA/IGM antibodies to 3 separate proteins. These proteins will be present in the blood if parasite, virus or yeast's from the stomach make it's way into the blood when the permeability of the gut is impaired. It looks at the Actomysen Protein (Parasites), Occludin/Zonulin Protein (viruses), and Lipopolysaccharides (yeast). A video talking more in depth about this test can be found here. It's a really cutting edge test, and highly accurate if a patient has Leaky Gut of any kind. For me that test came back completely negative, which means I am not dealing with a Leaky Gut situation anymore. I kind of suspected this, because I have seriously been so on top of it with healing my stomach throughout the last 4-5 years, so I was pleased to learn that my hard work payed off at least in that regard. The next test I had ran was looking to see if I was dealing with SIBO. This was their "Array 22: Irritable Bowel/SIBO screen." This looks for Bacterial-Toxin induced damage to the gut. If you have SIBO (small intestinal bacterial overgrowth) from either yeast or bacteria then the toxins from it will cause damage to the gut. This blood tests looks for those markers by looking for IGG/IGM/IGA antibodies to Cytoskeletal Proteins & Bacterial Cytotoxins. This test is brand new, and was only unveiled in March of 2017. It has been undergoing rigorous testing and studies in medical journals before it was brought to the public, so I feel really lucky to have been able to have this test ran. Even luckier for me, this test also came back negative on all accounts for having SIBO. Thankfully, that was also not my underlying cause.
So now the puzzles pieces to this mystery were slowly but surely falling into place more as each piece so of evidence began flowing in. I had a few others test panels ran, and when those were added into the mix it became obvious to myself and my Doctors that I had a serious autoimmune issue going on. For whatever reason my autoimmune system is on overdrive, and it is attacking all different parts of my body (as well as foods I put into it) improperly. It doesn't even take the time to distinguish the good from the bad, it is just in attack mode 24/7. This is likely what has been fueling my Crohn's as well, because it's impossible for my gut lining to heal if my own body is continually attacking it when it should not. This has posed an interesting task of figuring out how to calm down my overacting immune system so that it stops going after everything it sees.
Since getting my test results back we've been working on a game plan to tackle this issue, and I have been refining my diet big time. Since I obviously can not stop eating 95% of all food it has taken a complete overhaul to find my biggest triggers so I can avoid them. And truth be told, my triggers can change on a dime. Some days I may be okay with a food, and others days I absolutely can not tolerate it at all. Every single thing has to be made from scratch at home, and when I say everything I mean every last thing. Homemade vegetarian "soy less" soy sauce, homemade vegetable broth, homemade vegan mayo. All the small condiments you have on hand to cook with have all had to be tailored to work for my highly sensitive body. I hope and pray that with time I can reach a place where my body isn't cycling through and reacting to such extremes as it currently is now. Right now it is all a work in progress, and I will dedicate a later blog post discussing what I did/tried etc. Truth be told, I still very much have my bad days/flares where I curl up in a ball from pain, go on a liquid diet, and can't move from my bed for a week. Other times I have less pain & a better ability to eat solid food. It varies a great deal, especially as I experiment with treatment. Managing these Crohn's issues which came on top of my other neurological Lyme issues has been a real lesson in patience, but one which I am slowly understanding better each day. It's a juggling act, but I always say "if there's a will, there's a way." And boy do I have a will! I'm still finding my balance, but I'll get there.
For now that is all for this update! There has been a lot going on, and I have quite literally just been taking it one step at a time. One moment at a time. And trusting that God sees the bigger picture for me. I really try to focus my energy on enjoying each good day, or each good moment. No matter how "small" it may seem, I want to relish in the little joys of each day. Sometimes it can be hard (especially lately), but I have hope.
xoxo,
Christina
PS - This year I was nominated for the WeGo Health Awards for "Best in Show: Blog." If you enjoy this blog and want to help endorse me, please click the graphic below and that will help me a lot! Endorsements are open until September 1, 2017. Thank you so so much for those who nominated me this year!
I'm not sponsored by Cyrex, nor being paid by Cyrex for my opinions. All opinions are my own, and I paid out of pocket for all tests discussed. If you have any questions please feel free to ask in the comments below!
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