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New Year, New Foods

For the past year and a half, I have been adhering to the Specific Carbohydrate Diet. However, I was basically stuck at step one and only able to tolerate beef, chicken, carrots and squash. Almost every new food or supplement I tried to introduce caused a reaction. While the SCD helped me transition to some healthier foods, it was not the solution for my leaky gut.

As an attempt by my functional medicine doctor to find the root cause of my ongoing food reactions, she ran a very comprehensive food allergy test from Dunwoody Labs. They test for not only the usual IgG and IgE antigens, but also IgG complements (which make the reactions worse) and IgG4 antigens which can both block IgE reactions and cause problems on their own.

The results were extremely revealing. Guess what one of my very high allergen foods is? Beef. Also very high… squash. So, why was I able to eat these foods seemingly with no reaction?

One useful analogy, and it makes sense, is that the body can only tolerate a limited amount of inflammation before you get a reaction. Let’s call this the inflammation “bucket.” My consumption of chicken was causing no reaction, carrots just a little, and beef and squash were causing a lot. My bucket was nearly full but not overflowing. All it took was one more food of even a low allergenic property though to fill up the bucket and make me sick. By removing the beef and squash, I should have way more headroom to eat foods of low or even moderate inflammatory potential and not experience a reaction because the level in the bucket is so much lower.

How does this pan out in practice? Dunwoody Labs compares all the different types of reactions across all the foods they test and creates lists for you of completely safe and moderately safe foods, as well as those you should definitely avoid. Since I’m in bad shape, digestively speaking, we will only focus on the completely safe list for now. This list only contains about 24 foods that I could actually eat. Wow, that’s not many! Keep in mind that I’ve had a chronic, untreated, leaky gut that has progressively worsened over 30 years and I’ve spent over a year eating only four foods and before that, almost four years eating mostly three foods. Twenty four foods is like a whole new world of culinary delights for me!

I’m not going to give you the entire lists, but I can provide some highlights (or lowlights as the case may be).

First, the worst offenders. These are things I should probably never, ever eat for the rest of my life: beef, basil, black pepper, cow’s milk, goat’s milk, eggs, peas, oregano, peach, pork, shellfish, spinach, squash, tea, tuna, and vanilla.

Second, the good, safe list. These foods I can eat with no limitation right now: broccoli, celery, cherry, chicken, cucumber, grapefruit, grapes, orange, mushroom, peanut, pear, pineapple, plum, rice, sunflower seeds, sweet potato, white potato, tomato, and whole wheat.

There are a wide range of foods I didn’t mention that fall into the moderate allergen category and I may tolerate them in rotation after I get better. This includes many fruits, vegetables and nuts.

For whatever reason, I can tolerate some of the known allergenic offenders like peanuts and gluten. Yay, me. However, some of the other big, bad allergens like milk, egg and shellfish would take me down, so it’s a mixed bag.

Beyond all the theory of food allergy testing, how’s it going? Well, I removed beef first and then squash, and I’m cutting back on carrots. I’ve added a lot (for me) of new foods including wheat, peanuts, oranges, grapefruit, raisins, prunes, rice, potatoes, sunflower seeds, and pears. So far, nothing has made me sick, even though some of these foods caused reactions less than a year ago. Apparently, beef was a serious allergen for me and removing it allowed for the introduction of many other foods in its place.

This is fairly new territory for me and hopefully the beginning of a healing journey. There are other treatment methods that go along with my diet. I’m doing things like PEMF therapy, heart rate variability training, and meditation. I will explore those therapies in a future blog post.

Vitamin D Success!

There are really only two ways you can get vitamin D into your body. Ingest it, or expose your skin to sunlight. People who live in colder, northern climates often can’t get enough sun exposure even if they tried and must supplement. Ingestion of vitamin D can be in the form of naturally vitamin D rich foods, supplemented foods, or just plain supplements.

Every blood test that I’ve previously had that measured vitamin D showed my level to be low.

Since vitamin D is very critical to so many bodily functions, and my body is already run down enough from 30+ years of leaky gut and food allergies, getting my D level back up became a priority this year.

I limit my exposure to the sun, both by choice (I’m not interested in getting a tan) and by practice (I don’t do a whole lot outdoors in bright sunlight).

Over the course of several years, I’ve tried taking different vitamin D supplements. Even in a low dose, and from a supplement manufacturer that I trust to not include any other allergenic ingredients, vitamin D still makes me very ill (as in, severe food allergy reaction).

So, what about foods? Well, there are very few foods naturally high in vitamin D and they are seafood which I either would never eat or am allergic to. The same goes for the supplemented foods, like milk. All the good sources are foods that would make me sick.

That brings us back to sunlight. You can make adequate amounts of vitamin D from sun exposure, but it’s tricky. There are apps that help you compute the length of exposure you need based on how much skin is showing, angle of the sun, time of day, cloud cover, etc. In order for this to be successful, I’d have to stand outside for about 30 minutes, half naked, at noon, every day. Uh, I’m at work at noon most of the week, and it’s cold outside a good portion of the year, and it rains some days. This is clearly not a workable long-term solution!

But, there’s another approach. What about sunlight causes your skin to make vitamin D? In addition to the visible light emitted by the sun, it also produces lots of ultraviolet (UV) light. Science generally breaks down the bands of solar UV light into UVA, UVB and UVC. UVA light penetrates atmosphere, clouds and even glass and contributes to tanning, skin cancer, and skin aging. UVB penetrates atmosphere (not too much though), but not clouds or glass. UVB contributes very little to tanning, but DOES cause the skin to produce vitamin D. UVC usually doesn’t make it to the Earth’s surface and is very dangerous – we’ll skip that.

Hmm, is there a way to artificially dose yourself with UVB light and make vitamin D? Why, yes there is. Enter the Sperti Vitamin D lamp. Apparently, this device is FDA-approved for people who need vitamin D supplementation and is a perfect solution for people like me who are unable to tolerate vitamin D foods or supplements. It’s not cheap, but the reviews are good.

I gave the Sperti lamp a try. For the first half year of use, I followed the directions precisely. Five minutes of exposure to my chest or back, at a distance of 15 inches from the lamp, three times per week. After all that effort, my D level was still a sub-par 27 ng/ml. This Sperti lamp has undergone clinical testing and is proven to work, so what’s the problem? I discuss it with my doctor and decide to give it a another try.

Second time around, I used ten minutes of exposure to my chest or back, at 12 inches from the lamp, still at three times per week. And… we have success! My vitamin D levels are now at 46 ng/ml for the stable form and 50 pg/ml for the active form. Finally, I have vitamin D levels right where they should be for good health and you CAN do it with just UVB light exposure. Yay, something went right for me.

Food Allergy Versus Sensitivity

There are many things that can happen when you eat (or drink) something. In most normal cases, the food is digested to some degree and components are used by the body for building cells, creating energy or stored for later. This is an oversimplification, but you get the idea.

For those of us who have unpleasant reactions to food, the normal digestive processes are altered in some way. There are general categories of such reactions: allergies, sensitivities, intolerances, and a few others. Medically speaking, these reactions have distinct differences. As a common example, take lactose intolerance. When people with lactose intolerance ingest milk products, the milk sugar (lactose) is not broken down because those people lack sufficient lactase enzymes. The result is lactose fermenting in the intestines and producing gas, bloating, cramps and loose bowels. This is not an allergic reaction and not the same as a milk allergy.

What I’m going to focus on is the fine semantic line between food allergies versus food sensitivities, and whether there really is a difference.

What I have learned from multiple food allergy tests is that medical science typically identifies two types of allergic reactions to foods. These reactions are mediated by the presence of immunoglobulins in the blood. The immunoglobulins may be labelled IgE or IgG.

IgE reactions are those that cause the stereotypical allergic symptoms like sneezing, coughing, itching, rash, swelling, immediate vomiting, and possibly anaphylactic shock. These symptoms may appear within minutes to less than an hour after ingestion.

IgG reactions are typically delayed and produce more subtle symptoms like nausea, loose bowels, cramps, fever, body aches, headaches, fatigue, brain fog, skin rashes, and many others. These symptoms may not show up until hours or days after ingestion. This makes it somewhat harder to identify the offending food.

While there is not necessarily a hard and fast rule on this, many sources call IgE reactions true food allergies while calling IgG reactions food sensitivities.

In my specific case, I’ve never tested positive for, nor had any obvious reaction, indicating an IgE reaction to any food. On the other hand, my tests for IgG reactions show some sensitivity to almost everything! This is not entirely an accurate picture because I can safely eat some foods on the IgG reaction list while others that show no response have made me very sick. The main point I take away from the testing is that my body is simply really, really, really (to infinity) sensitive to nearly all foods. The only way to nail it down is with food challenges, previously discussed in an earlier blog.

Getting back to the semantics, the more recent doctors I’ve seen call my reactions food allergies, even if they are all IgG mediated. For ease of discussion with the general public, I call my condition “multiple food allergies.” It readily puts people on alert that eating things may make you very sick.

Not everyone views things this way though. I’ll give you an amusing anecdote. A few years ago, I had joined a very active and informative online forum for food allergies. After lurking a while and picking up some good tips, I finally formally introduced myself and talked about my condition. Well, I quickly got “flamed” (I think that’s the word). Other forum members were all over me for daring to join their forum discussions with what was not a “true food allergy.” Some of the people told me to go away and seek advice elsewhere. The only explanation I may have for their unwelcoming outbursts is that a lot of the forum members were moms of kids with life-threatening IgE food allergies. They want to protect the seriousness of their children’s concerns and not have them “diluted” by someone with less life-threatening IgG food sensitivities. Just…wow. I mean, food makes me sick. I thought all of us in that condition could hang together. I guess not.

I’m ready for more (I think)!

So, over the long course of my illness, I’ve had periods where I haven’t been able to exercise regularly. This is not unexpected with chronic illness. You’re too tired, too sick, or just don’t feel able. I think I’ve had enough of that. I’m ready to rejoin the world of exercise.

Let me take a step back and explain what passes for exercise for me, so you have some context.

When I was in my mid teens, I started practicing yoga. While not a strenuous exercise, it fulfills one of the key parts of a well rounded exercise approach – stretching. While in college, I started weight lifting and using a stationary cycle and rowing machine (I hated the rowing machine – we’ll leave that in the past!). For the most part, I’ve been doing some combination of weight lifting, cycling and yoga for most of my adult life.

When I first started the Specific Carbohydrate Diet (SCD) in May 2016, the calories were limited. I lost a lot of weight and didn’t have much energy left over to burn in exercise. However, I ramped my calories back up and resumed full exercise as soon as I was able. This lasted until about January 2017, when I discovered I really was having reactions to anything containing fructose. Removing all the fruit from my diet caused a huge calorie deficit again. Back off on the exercise again.

Now, the proponents of SCD are very conservative when it comes to exercise as they believe you should direct all of your limited energy toward healing your guts. I think there’s more of a balance to be obtained and some SCD advocates recommend very limited compound weight lifting in order to avoid muscle loss.

Since January 2017, I have given up cycling almost entirely, and limited my weight lifting to a few compound exercises. I’ve also been watching my heart rate variability plummet (I check it every morning) and the monitor tell me that maybe I should not work out today because my body is not doing well.

Personally, I’m going to start ignoring the heart rate variability app and exercise whenever I feel like it. I think my heart rate variability has dropped so low partly because I’ve fallen out of regular training. My weight has been stable for months. My diet has been stable for months and I may be able to add a few extra calories in if I need them.

I really am feeling better and want to get back to some more serious exercise. I’m tired of not doing very much. I’m going to ramp it up gradually and see how things go. Rest assured, I’ll let you know if it doesn’t turn out well.

 

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!