Salicylate Sensitivity

Have you ever heard of it? Yes, it’s a real thing. I know. I have it.

First of all, what is salicylate? It is an organic acid and the most common forms include salicylic acid and acetylsalicylic acid. Salicylic acid is often used in topical medications for acne and other skin disorders. Acetylsalicylic acid is better known as aspirin and I shouldn’t need to further explain aspirin and its many uses. Further, methyl salicylate shows up in “minty” topical drugs like mouthwashes and “Bengay” type creams.

Salicylic acid was first isolated in the bark of the willow tree. It is naturally occurring in many plants, albeit at much lower levels than you would find in an aspirin.

So what happens to those who are sensitive or allergic to salicylates? In my case, the same type of reaction I have to other offending foods – stomach and bowel upset, body aches, fatigue, overall inflammation.

I came about my personal diagnosis of salicylate sensitivity from a number of random varied exposures that all made sense in a greater context:

  1. I eat almost all types of squash on a regular basis as a dietary staple. Almost all, except one that makes me very sick. That would be zucchini. It turns out zucchini is high in salicylates.
  2. A couple of years ago I injured my hand and was using a topical pain-relieving analgesic cream on it (that stuff does help). I accidentally over-applied some of the cream and just smeared it off onto another part of my body. Well, I absorbed too much of the active ingredient and got very sick. What is the active ingredient? Methyl salicylate.
  3. I put those events behind me and planned to avoid salicylates. This plan went well until I recently had a bad, bleeding cut in my mouth (bit off more carrot than I could chew – don’t ask!) and used a dose of Listerine. The next day, I had a bad reaction and was sick again. What is one of the active ingredients in Listerine? Methyl salicylate, which made its way into my bloodstream via the open cut in my mouth. Oops!

The unique lesson I learned from exposures 2 and 3, above, is that I can still have a food allergy type reaction and get very sick with digestive symptoms even if the offending substance is not ingested. Huh, interesting.

There are extensive lists of high salicylate foods on the internet. Most of them are, for me, something I’m already allergic to or contraindicated by the Specific Carbohydrate Diet. So I’m not missing too much by avoiding high salicylate foods. The zucchini squash was the only zinger for me and quite a surprise since I can eat every other squash I’ve tried so far.

Food Challenges

In prior blogs, I’ve talked about what are called food challenges. Now I will explain what they are and how I was taught they work.

Although there are different types of blood tests that can be performed to test for food allergies, the absolute gold standard of food allergy testing is the oral food challenge.

For those people who have a fairly immediate, possibly life-threatening, reaction, food challenges are best conducted under the supervision of medical professionals. For those of us with somewhat milder, delayed reactions, food challenges performed in the comfort of your own home is a possible solution.

How does it work?

  1. Pick a food you suspect is causing you problems.
  2. Completely eliminate that food from your diet for at least two weeks (if you begin to feel better, that’s a clue, but you’re not done yet!).
  3. Eat the food prepared in a normal manner in typical serving sizes regularly, every single day, for up to five days. Keep the rest of your diet fairly routine during this period.
  4. If you get a reaction in five or fewer days, you likely have some kind of allergy or intolerance to that food. STOP eating it as soon as you’re sure of a reaction!
  5. If you have no reaction after fives days, you may begin rotating that food back into your diet.

Rest and then repeat the process as many times as needed for different suspect foods (or for the same food if you’re uncertain or think you ate something that messed up your testing).

Remember the timing. Two weeks off – five days on.

Beware, I have eaten foods that have successfully passed the challenge and they eventually began to bother me weeks or months later. So, this method is not foolproof to the extent that it can predict if you will EVER react to a food.

Also, some foods, like herbs, spices and condiments may typically be consumed in small enough quantities that a reaction is uncertain. It’s not until you consume a larger quantity for an extended period that you trigger a reaction. This has happened to me with the mint family plants (basil, oregano, peppermint), olives, and black pepper.

Lost Time

I know that the concept of lost time is not unfamiliar to those of us with chronic illnesses, but it is particularly concerning for those with episodic chronic illness. Why? Because, we’re not sick ALL the time. Yet, we have periods lasting from hours to weeks where we’re not quite well. And then we have periods of days, weeks or months where we ARE quite well. The contrast between the two is, in my opinion, what drives the greater perception of lost time.

 

Every time I don’t feel well, there’s a sense of another day of chores lost, another day I could spend with family lost, another work day lost to sick time, opportunities for exercise lost, etc.

 

In my case, a migraine attack typically lasts a couple of days. A food allergy flare up typically lasts from a couple of days to a couple of weeks, depending on many factors. My degree of disability during those episodes is also variable, ranging from nearly bed-ridden to almost fully functional.

 

The common element running through all the times and conditions though is the inability to do things I want to do. It’s one thing to procrastinate or avoid tasks because you don’t feel like doing them. It’s another thing to be unable to do things because you lack the physical stamina (i.e., “spoon theory,” I’ll discuss in another blog) or just don’t feel well enough to do them. I get angry and frustrated when my body doesn’t give me the choice. I also find myself loading up on chores when I do feel able to perform, I assume in compensation. Overworking myself when I’m physically able to is probably not good for me either.

 

I’ve found the feeling of lost time has become worse as I’ve aged. This is probably normal, as you know that you have less time ahead of you than behind. Every illness flare up brings with it a sense of getting further behind in a life where you’re already running out of time. Skipping a workout or two when young is no big deal. When you’re older, muscles that you haven’t used in a few days are going to be sorer and you can’t push your body as hard. The older we get, the longer it takes to recover and build back up again. Chronic illness causes me to lose that momentum.

 

I don’t have any magical solution to this dilemma other than to make the most of your time when you’re able to. Most people would say I’m not a procrastinator. When something needs to get done, I get it done. Today, I have a migraine and I had to cancel out on several planned activities. Tomorrow, hopefully, I’ll feel better and can resume a normal workload.

Migraines

So, I’ve written a lot about my leaky guts and nothing yet about migraines. Time to correct that. Whether you consider migraines and leaky gut to be comorbid conditions or not, I’ll leave to your interpretation.

I had the first glimmerings of migraine attacks when I was in my mid teens. The first manifestations were what I now understand to be migraine auras. Since it was a visual disturbance, I described it to my ophthalmologist and he said it was an “ocular migraine” and seemed surprised it was not followed by severe headache. The attacks lasted about twenty minutes and left me feeling mildly headachy and light sensitive, but not overly so.

The classic migraine auras a few times per year were all that bothered me for more than a decade.

Then, in my late twenties, I started getting the gut-wrenching, skull-splitting headaches that migraines are better known for.

Simultaneously, I had a few episodes of numbness and tingling on one side of my body. I underwent extensive testing to rule out Lyme disease, multiple sclerosis and stroke among other things. All of those tests were negative, fortunately. I didn’t make the direct connection to migraines, and surprisingly neither did my neurologist. A diagnosis was inconclusive. Since I’ve now had the occasional numbness in clear connection with migraine attacks in recent years, I’m quite convinced that the early episodes of numbness were also migraine-related.

One thing you need to keep in mind if you’re not already familiar with migraines is that they NOT just bad headaches. A migraine is a neurological disease and presents many widely varied symptoms, and may occur with no head pain at all.

Moving along, in my later thirties and forties, my migraines began to settle into a regular pattern of weekly attacks. Some were worse than others, but I had at least a day per week when I wasn’t up to par. Probably once a month or so, I had a truly disabling attack that required time off from work. This cycle went on fairly steadily until 2016 when I started the Specific Carbohydrate Diet (SCD). The first few months of the SCD, I was completely migraine free for the first time in decades! That alone must mean something. Alas, as I went on to try to add additional foods and supplements back into my diet, I triggered flare ups and also migraines. Most of the attacks were minor, though I had a few really bad ones too.

Now that I’ve had the opportunity to bring my leaky guts under some better control with the SCD, it’s become clearer that my migraines are related to food reaction flare ups and the resulting general inflammation within my body. If I keep the flare ups under control, the migraines stay under control.

Generally speaking, I can often go months now between major migraine attacks. What a relief! I still frequently get what I call mini or micro migraines on a nearly weekly basis, but the level of discomfort is probably a 1 on a scale of 1 to 10. That I can live with.

Since I’m so sensitive to foods and supplements, I can only take a few prophylactic migraine remedies. I rely on specific brands of riboflavin and magnesium to help me out. My regimen consists of 400 mg of Solgar riboflavin (two 100 mg capsules with breakfast and dinner) and 4 tablets of Niche Mag-Tab SR, supplying (84 mg x 4) 336 mg of highly bioavailable magnesium. How do I know if these things do any good? Well, first and foremost, if I try to back down on the dosage of either, the migraines become more severe and frequent. Second, there is a lot of clinical research supporting riboflavin and magnesium as effective, low cost, and minimal side effect, migraine preventative supplements.

In a future blog, I’ll discuss one of the unique methods I’ve tried for migraine relief – the Cefaly device.

Recent Test Results – What’s Wrong and What’s Right

Last year, 2016, I had several blood tests ordered by both my primary care doctor and my gastroenterologist. This year, I had blood and stool tests run by my functional medicine doctor.

Obviously, I won’t bore you with all the technical details. Let’s just go over the most relevant and out-of-range issues.

Basic bloodwork from Labcorp

  • A couple of early tests showed slightly anomalous readings related to liver function. My doctor thought this was probably a sign of systemic inflammation. Later test was fine.
  • One test showed positive for ANA (anti nuclear antibodies). My doctor said this often accompanies autoimmune disorders and inflammatory bowel issues.
  • The 92 Food Allergy profile came back showing a IgG reaction to ALMOST EVERYTHING! Not terribly surprised, however, I consider the results inconclusive. It shows a high response to foods I had been eating regularly with no reaction and no response to foods that I had eaten recently that made me very sick.  So…???
  • A later basic test showed elevated kidney values, indicative of kidney failure, or in my case, too much protein intake. This was after I added beef to my diet. I backed off on the meat and should be OK now.
  • Vitamin D level is low. Working on that. I’ll write a separate blog on how I deal with vitamin D.
  • Thyroid function is marginal according to my doctor, although the test results were all within normal ranges. Under observation for now.

Detailed analysis from Spectracell

This test looks at cellular levels of vitamins and minerals and will better illustrate what you’ve been absorbing from your food and supplements over the past six months.

Most of my vitamin and mineral levels are very good. Even though my diet is very limited on the Specific Carbohydrate Diet, apparently chicken, beef, carrots and squash can be very healthy with a few tiny supplements.

  • B12 is low. Since the bought of anemia in early 2016, I had been taking 1000 mcg of methylcobalamin every week. Doctor said to increase to daily dosing and that should solve the problem.
  • Zinc and chromium is marginally low. I have been unable to take the mineral supplement recommended by the doctor. It makes me sick.

Detailed analysis of lipids and other arterial health indicators from Boston Heart Diagnostics

My overall cholesterol level is considered marginal by current medical standards, but my functional medicine doctor wants it to be higher. She feels that in order to heal and rebuild the cells in my digestive system (fix the leaky gut), I need lots of cholesterol.

The good news is that my body (liver) is not making any excess cholesterol and the type of HDL I have is very good at keeping the arteries clear of lipid deposits. The marginally high total cholesterol is a result of my high meat consumption. If and when I am able to reduce that, my cholesterol will naturally go back down.

This test revealed something no one else had ever told me. I have a genetic disorder called a methylation defect. This means that my body only processes folates with about 20% efficiency compared to someone without the defect. That explains why the Labcorp tests showed circulating levels of B12 were fine, while the Spectracell analysis showed B12 marginally low. Also, this results in elevated homocysteine which leads to a host of problems. I’ll go into more detail in a future blog.

Comprehensive stool analysis and parasitology from Doctor’s Data

No analysis of a digestive problem is complete without a poop test! Nothing unexpected here.

  • Minimal or absent good bacteria
  • Minimal neutral bacteria
  • No bad bacteria
  • No yeast
  • No giardia or cryptosporidium
  • Some indication of inflammation and occult blood

None of this is particularly surprising or inconsistent with previous results. I could tell you that my guts feel inflamed when I have a flare up. And of course most of my good bacteria was wiped out by antibiotics and never quite reestablished.

Sometimes you just have a bad day… week… month…

I really haven’t been feeling well lately. My functional medicine doctor gave me a long list of supplements and foods to try back in June. Most of the trials resulted in a failure. That is, I had a bad reaction and got sick. After a week or so of recovery, I’d try the next thing. And get sick again.

Then, out of the blue, some of the contents of my dietary staple SCD chicken soup started giving me trouble. First, the onions. Took those out and felt better. Next month, it was the celery. I had a lot of frozen soup left with celery still cooked in. So, I ate the soup with the celery picked out. I could probably pick out 95% of the solids. I initially felt better for a few days, then went downhill again. Darn, even the non-corporeal celery in the soup was a problem.

The roller coaster of food and supplement trials over the past few months, combined with the new reactions to cooked onions and celery, has left me feeling not so well.

I have low grade migraine symptoms coming and going. I feel very tired and lack energy. My digestion, while not outright bad, is irregular – sometimes very hungry, other times having no appetite. Bowels are responding with cramps and firmer movements. Oh, and the past few days have brought the dreaded brain fog. The fog has lifted this evening, allowing me enough coherence to write this.

Regardless of what the doctors tell me I need to supplement, my body is yelling at me that it needs a rest. I need a break from trying new foods and frequent reactions!

Enter the World of Functional Medicine

After spending lots time reading blogs dedicated to the Specific Carbohydrate Diet (SCD) and leaky gut, several things were becoming clear to me:

  1. Diet alone was not going to solve my problem;
  2. In the world of things treatable by the SCD, leaky gut is considered a “hard case” and given my responses to food and supplements, I am among the hardest of the hard cases;
  3. Most people need some level of supplementation and medical assistance beyond the SCD to truly get better;
  4. The most often referenced medical assistance takes the form of a doctor of “functional medicine.”

So, what exactly is functional medicine and how is it different from any other medicine? Hard to say with certainty. The Wikipedia article on functional medicine is very unflattering and mentions “nonsensical gobbledygook” and pseudoscience. At its best, functional medicine takes a more systemic approach and focuses on the interaction between bodily systems and the environment.  

Keep a couple of things in mind here.

  • First, I am a scientist. My radar for pseudoscience is always on alert. For example, the moment a doctor mentions homeopathy, it’s time to leave the room. Homeopathy is outright bunk. Water memory – you’ve got to be kidding!
  • Second, I have a very real illness that makes me very sick, yet is dismissed by most doctors as something they don’t fully understand or know how to treat. In essence, I have an illness on the fringe of medical science.

The end result of these seemingly conflicting concepts is that I have to navigate a careful path of treatments that may be somewhat outside current mainstream medical thinking while not falling into the trap of pseudoscience, bunkum and snake oil.

So, I set out to find a functional medicine specialist. It turns out, after much research on the internet, there’s a very highly qualified doctor only a couple of miles from my house! That’s the good news. Bad news is that she doesn’t take insurance and is very expensive. At this point, I don’t care too much about the money, within limits.

About a year after beginning the SCD and working with a gastroenterologist experienced in treating leaky gut patients, who left me with the usual “if it makes you sick, don’t eat it,” I made an appointment with a functional medicine doctor.

Hmm, very interesting experience. Clearly, with regard to my symptoms and reactions, she “gets it.” The follow up testing was extremely comprehensive and told me things I had never known before as well as a some details that were no surprise.

Stay tuned, I’ll give you more details in the next blog.

History Part 6 – The Specific Carbohydrate Diet – A New Way of Looking At Food

I know what you’re thinking when you hear about a named “diet.” It’s probably some weight loss fad or medical gimmick. I had read about the Specific Carbohydrate Diet (SCD for short) many years ago and dismissed it for several reasons: 1) it’s HARD to stick with it – many people who try it drop out because of the difficulties in food preparation; 2) it’s recommended for celiac disease, Crohn’s, ulcerative colitis, and severe inflammatory bowel diseases, which I thankfully don’t have.

Well, after almost four years of rice and apples, to which I was developing allergies, I needed a serious and radical change to my diet. My previous doctor always complained that I wasn’t getting enough protein and that there is no such thing as a healthy vegetarian.

In retrospect, I don’t know why I gravitated toward the SCD given other similar choices like anti-inflammatory paleo, GAPS, FODMAP, etc. Perhaps the appeal of a very, very strict and highly controlled diet that was laid out in phases of gradual food introduction was what sold me. Regardless, I decided, in May 2016, to give it a go.

Yes, the SCD is hard to follow. There are many helpful websites concerning the SCD, some of which are listed on my “links” page if you want to learn more. The most basic tenet is to eliminate all carbohydrates that are not simple mono-saccharides. The allowable foods are basically meats, fats, fermented milk products, certain vegetables and some fruits and nuts. Absolutely NO sugar or grain products of any kind are permitted. The first phase is mostly meat, pureed carrots and chicken soup. Think of it as rebooting your digestive system like when you first start an infant on solid food. What do you give them that they can easily digest? Pureed meats and veggies.

The SCD actually has a long history since it was first invented in the 1950s, but it is only recently gathering steam and has been researched and tested in clinical applications at major hospitals. Guess what, it works. At least, for Crohn’s and ulcerative colitis, it is effective. Leaky gut is still barely beyond fringe science and treatment has not been well researched.

But, the SCD is not a diet you just jump into and eat whatever is on the safe food list, unless you really want to fail! It requires a careful phase-in. I started the early phase with the bases of chicken, pureed carrots and homemade chicken soup. They highly recommend bone broth as well, though I take a shortcut and simply use plain gelatin. I spend enough hours in the kitchen as it is. Making homemade bone broth would put me over the edge.

Also, in May 2016, I started seeing a couple of new doctors. I had had a recent annual physical with a new primary care doc. When I told her about my history of food allergies and digestive ills, she looked at me like I had three heads, said “that’s strange” and suggested I see a gastroenterologist. Duh, like I’d never done that!

OK, so I went off onto the internet to try and find a gastroenterologist with some understanding of food allergies. The last thing I needed was to go back to someone who just diagnosed gastritis or stomach virus. Fortunately, my search yielded a specialist who even took my insurance. His diagnosis – multiple food allergies from leaky gut. Well, he was moderately helpful and endorsed my use of the SCD to try and heal my guts. However, after about four visits, a few blood tests to rule out other problems, and five months of time, his advice basically trickled down to “you have to eventually figure out what foods you can eat and avoid anything that causes a flare up.” This is not vastly different from the advice of many years earlier of “if it makes you sick, don’t eat it.”

Ahhh, is there no cure for leaky gut but to avoid most of the world of food?!?!

Maybe… maybe not… Stay tuned for the next blog where I start working with a doctor who really wants to cure me.

 

History Part 5 – You Thought Things Couldn’t Get Worse?!?!?

We’re now at 2004. I have a diagnosis of multiple food allergies. I have given up all milk products, even though my doctor suggested giving up all identified allergens plus gluten. My reactions and flare ups were stable at several per month.

As the years rolled by, my flare ups became more frequent and more severe. However, this was a very gradual change, so I didn’t really notice it until a lot of damage was done. It wasn’t until I hit 2009 – 2010 that I was getting so sick so often that I went back to the doctor to figure out what was wrong. We went over all the foods I was commonly eating and matched them to the old food allergy test from 2003. Lo and behold, we had lots of matches! I was literally eating myself sick by continuing to ingest food allergens.

My doctor said to remove all the foods that had every tested positive as allergens and see how I felt. After that, if I continued to have flare ups (I did), and thought it was related to a recent food, I needed to “challenge” that food. For example, I regularly ate rice and beans. Let’s say I think the beans are bothering me. So, give up rice and beans for two weeks, and then eat it in normal amounts for several days in a row. If I react, we have a new allergen.

I spent basically two years of my life, 2010 – 2012, chasing down food allergens in the manner described above. The problem was, every few weeks, I’d get sick, name a suspect food, perform a food challenge and find that it was a problem. The list of “bad” foods that caused reactions kept getting longer and longer. I felt like I was aiming for a moving target and never hitting anything.

Also note that my reactions were getting progressively worse. Instead of just having an upset stomach for a day or two, the symptoms had progressed to bad nausea and loose bowels for a few days and then lingering constipation, fatigue and body aches lasting up to two weeks after I ate the offending food.

By the Fall of 2012, this was just getting crazy. I was constantly chasing down food allergens and still getting really sick every couple of weeks from something. I couldn’t seem to find a safe, stable, baseline diet. Without my doctor’s help, I did my own research into hypoallergenic diets and decided to embark on my own experimentation with a radical dietary change. Allegedly, the most hypoallergenic foods used in some studies, are lamb, rice, apples and pears. Since I was still a vegetarian, I settled on mostly rice and apples, supplemented with olive oil, some pears and small amount of herbs.

My goal was to create a safe dietary platform from which to set up food challenges. It turns out the rice/apple/olive oil diet is about all I could tolerate. Virtually every food I tried to introduce caused a reaction, either immediately, or within a few weeks of semi-regular consumption. Clearly, something was still very wrong. I had only intended to use the rice and apple diet for a short period. I ended up on it for almost FOUR years! Near the end of that time, I was becoming allergic to different strains of rice. At first, brown rice started causing reactions, then black rice, then medium grain and short white rices. The last rice I could tolerate was ONLY Carolina brand Jasmine rice. Any other type made me sick.

I also suffered a bad episode of anemia from B12 deficiency in early 2016. I lost feeling in my lower legs and strength in my upper legs. Although I’ve recovered from a lot of the nerve damage, I still get occasional muscle cramps and I’m sure my legs are not as strong as they used to be.

Ugh, this was not a solution!

The good news is that things begin to turn around from here. In the next blog, I’ll tell you where I went after suffering through years of rice and apples.

History Part 4 – Finally, Progress, Sort of…

The year is 2003. Is was having one of my routine flare ups. In addition to the usual nausea, body aches and feverish feeling, I had a nagging slight pain in my lower left bowel area.

My family had moved into a new home in 2000 and we had selected a new primary care doctor, but I had not seen him yet. Since my father had suffered from a perforated bowel, and I had never had pain with my flare ups before, I thought it might be good to visit the doctor. He was able to see me in a few hours.

His diagnosis was a probable minor attack of diverticulitis. Given that the fever had broke by the time I got to the doctor’s office, he figured the worst was over and recommended a high fiber diet as follow up. I was surprised he didn’t suggest any “bowel rest” or antibiotic treatment – just right to high fiber.

During the exam he said, “do you have a history of digestive problems?” I said, “oh yeah, how much time do have?” I told him my story. He listened intently for about 15 minutes and then declared that I very likely had multiple food allergies causing the symptoms. Whoa, no one ever told me about food allergies before!

We started some diagnostics with a comprehensive stool parasitology test and a food allergy profile that looked at both IgE and IgG reactivity. Let me explain what that means. The stool test examines what bacteria strains are in your poop as well as any invasive parasites like giardia, cryptosporidium, worms, etc. Food allergy testing is a strange beast and there are different ways to do it. I’ll go into this more in a future blog post, but basically food allergies cause immunoglobulins (Ig) to circulate in your blood. These can be of IgE type more indicative of immediate, anaphylactic type reactions or IgG type generally causing delayed and more subtle reactions like I experience.

What were the results? No parasites in my poop, but very few beneficial bacteria either. It makes sense that years of antibiotics killed off a lot of gut bacteria. The food allergy test was positive for an IgG reaction to a large variety of foods including all milk products, some fruits, nuts, vegetables and even sucrose. My doctor ran a separate test for gluten tolerance and he said I was not wholly gluten intolerant but heading in that direction.

His suggestion: give up all the foods that showed an IgG reaction and go gluten free. At this point in my life I was still consuming almost anything I wanted, except that I was mostly a vegetarian. My dietary staples included wheat-based grains, cheese, yogurt, nuts, a few fruits and lots of vegetables. What the doctor was suggesting was a huge lifestyle change and I balked. Little did I know that my future would hold far stricter dietary limitations.

Since I had a long-standing anecdotal history of milk reactions (recall episodes I mentioned from my early teens?), my compromise was to give up all milk products and see if that helped. It took me a few weeks to understand how many things have milk in them and remove them from my diet. After a couple of months, the flare ups went from several per week down to several per month. Hey, improvement, right!

I kind of forgot about all those other things the tests showed. You know, the poor gut bacteria and all the other food allergies. I embraced a milk-free lifestyle and moved on.

Let’s pause here on an up note, because things went downhill from there. I’ll explain more in the next blog post