Food: Why Hath Though Forsaken Me?

Was it really less than three days ago that I wrote about my experience with food sensitivity testing (see here) ordered by my ENT physician and my plan to try some new diet modifications based on the results?  It seems that my body or more aptly my immune system has a different plan in mind and food sensitivities will have to take a back burner for the present time to deal with some unexpected and severe food allergy problems.

I already have serious diagnosed Type I food allergies, the most challenging being to onions and the whole onion family, but the list also includes tomatoes and most tropical fruits.  (The onion family ends up being used in everything making it hard to trace.) Over the last 2 plus years I thought that I had gotten these food allergies under control gosh, darn it!  Cooking my own food, paying careful attention to ingredients, and only eating at a handful of restaurants where the chef and wait staff are willing to take the extra steps so there was no cross contamination in my food.

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About a month ago, my husband and I went out to eat with another couple (an activity that has become a new treat since my autoimmune disease symptoms have improved over the last few months) and, lo and behold, my cheeks and lips started swelling. My cheeks felt tight and stretched out and I definitely started to look like a chipmunk.  This from a plain piece of grilled fish. Of course, it had to be a work dinner for my husband when this happened--need I mention the first work related dinner I had been able to attend with him in 3 years. Since I was eating plain fish I assumed there must have been some cross-contamination with onion or one of the other foods in the onion family.  I took benedryl and had my epi-pen in my purse at the ready, but, thankfully, the benedryl worked. I thought that was the end of that.

Unfortunately, it has since become clear that I was entering a whole new chapter of my allergy challenges. Welcoming back my throat-swelling has not exactly been like finding a long lost friend. I am most likely now allergic to something new, making the last several days a roller coaster.  I have again had swelling on multiple occasions, even when preparing meals at home or eating foods that are part of my usual diet. Clearly new foods are wreaking havoc but I am having a hard time figuring out what could be the cause. When my usual breakfast this morning led to another one of these swelling episodes, I knew that I needed to go to the allergist office to start to try to figure out what might be the new allergenic culprit(s).

While we are trying testing to isolate the new problem, we have yet to reach any clear conclusions on the cause of my new allergies. (I'll spare the details but because I'm on steroids, testing and getting clear results is more complex than normal.) In the meantime, since I am now so reactive and we don't know why I have been put back on an elimination diet.  I have had to do this in the past and it is no fun. You slowly add each new food one by one back into your diet, record what you eat daily, and note every allergic reaction. This approach means not eating foods with multiple ingredients, like cookies or breads from the grocery store, because if you do have an allergic reaction it is then impossible to parse out which ingredient is the cause. As I said, no fun.

Being so allergically activated is challenging (and dangerous) in its own right, but making matters worse is that treatment options are limited by my autoimmune disease...while at the same time the reactions themselves put me more at risk for an autoimmune flare. Because I have Sjogren's syndrome, anti-histamines make my dry eyes and dry mouth much worse and also increase my ear pain (related to my eustachian tube dysfunction).  This is the delicate balance that my allergist and I are trying to piece through together. I wish it felt more like science than trial and error.

While my autoimmune disease is what has materially changed the quality of my daily life, I know first-hand that allergies can be life threatening.  Where does that leave me?  At the moment, trying to get my recovery back on track.  Just when my autoimmune symptoms were under control enough that I could begin to socialize and start participating in the world again, my allergy symptoms decided not to cooperate.  I don't have an easy solution. I would like to find a creative way to distract my immune system from attacking the wrong things.  Could I teach it to meditate? Yoga perhaps? Or maybe long distance running.  Anything to distract it from attacking me...and the food I love.

The Alphabet Soup of Food Reactions

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I had previously written about how I had finally found an ENT physician who figured out part of the problems that I have been having with my ears.  It was more than a welcome relief to have some answers when he diagnosed me with eustachian tube dysfunction and chronic sinusitis both of which are not uncommon issues for patients with Sjogren's Syndrome.


Part of his strategy for dealing with these problems was to test me for food sensitivities something that I had never had done before or heard much about.  His hypothesis was that the blood tests would show that I had multiple sensitivities and eliminating some of these foods from my diet might help improve the sinus and ear problems that I have been having.  And I would certainly prefer to eliminate food from my diet if that means not having to have be on antibiotics or getting tubes in my ears, which is a procedure I would like to avoid!  And I have already become accustomed to adjusting my diet substantially due to a number of serious food allergies.

Food allergies and food sensitivities are distinct.  I am (un)lucky enough to have a number of diagnosed food allergies which have landed me in the emergency room on more than one occasion.

Food Allergies are very serious and involve a histamine reaction to a food exposure in this case that can cause asthma, hives, and at its most serious swelling of the tongue and tightening of the airways that can cause anaphlyaxis and can even be fatal. They are often called IgE mediated allergies because during exposure to a food allergen, an individual's B cell's mistakenly recognize the allergen as a foreign invaded and produce IgE antibodies.

Food Sensitivities are a delayed food reaction where symptoms may appear up to three days after eating a food.  Symptoms might include bloating, headache, migraine, joint pain, sinusitis, and fatigue, and other aliments depending on the person.  Food sensitivity testing measures whether IgG antibodies increase when an individual is exposed to a particular food. 

My doctor did tell me that food sensitivity testing is controversial in the United States and tends to be more accepted in Europe.  Interestingly, my physician, who is an ENT surgeon, began food sensitivity testing when a some of his patients did not improve as much as he had hoped after surgery.  He did see further improvements, however,  in many of these patients when they modified their diets based on findings from the IgG tests.

Well, I got my test results back from his office and the testing confirmed that I am intolerant to gluten and wheat.  Luckily, I had already eliminated gluten from my diet almost nine months ago and it made a huge difference in my constant stomach upset and joint pain.  However, there were a few other food items that came up as problems and some of them seem very hard to part with including coffee and baker's and brewer's yeast and then there are some which are easier to avoid such as green beans, egg yolk and ginger.

I liked my doctor's approach on the baker's yeast which is in almost all processed foods including those that are gluten free such as breads, cookies, and bagels was to do my best, but it will be very hard to be 100 percent perfect.  So this is a bit of an experiment in the works.  Will I be ambitious enough to try to make my own gluten free bread without yeast?  I am not sure yet, but I will provide an update as to how this goes, if I am able to stick to taking these foods out of my diet, and if I notice any changes.  The good news is that IgG reactions are not life-threatening and are often not permanent so it is possible after taking an IgG positive food out of the diet for a number of months, to reintroduce the food in small amounts in the future.

Have any of you been tested for food sensitivities by your physician and has an elimination diet of these foods been helpful to your health or any of your autoimmune disease symptoms?

When They Said I had IBS

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A friend was talking about In N-Out Burger and over the weekend, and it reminded me of one of my past experiences with doctors of a different sort than I usually write about.

My husband and I were in Los Angeles eight years ago, before I had any obvious manifestations of autoimmune disease. (I was actually considering a move to LA for graduate school and was torn about what to do but that is a whole other story!)  Our friends in LA and my now hubby raved about the hamburgers at In N-Out and insisted that I had to try one.  Not being much of a fast food gal, I still went for the bait. Initially I enjoyed the meal, but I quickly came to regret my decision--just my luck I had gotten myself a very bad case of food poisoning.  Simple food poisoning usually passes fairly quickly, but this was different. The food had thrown my stomach into complete turmoil and the symptoms lasted weeks after my return home.  Every time I ate, my stomach revolted.

Eventually I went to my internist at the time; he then referred me to a gastrointestinal specialist. They ran tests and cultures to make sure that I hadn't picked up a bacteria or a parasite.  When they came back negative, the GI specialist insisted on a colonoscopy.  It didn't show anything in particular and the doctor then concluded that I had Irritable Bowel Syndrome (IBS).  I know that IBS can be a serious diagnosis and I have several friends who struggle with it.  But, what did this diagnosis mean for me?  It meant I had stomach problems... and since the doctor couldn't find anything with the tests, he threw a catch-all diagnosis on it so he could stop dealing with me.  His therapeutic suggestion?  That I should do yoga to relax--intimating that my stomach upset came from stress.  I was confused.  I had never had stomach problems before this food poisoning.  How did one thing lead to the other?  He didn't know, but the problem was he didn't seem to care.  A switch had been flipped.  Once he decided I had IBS, he immediately decided to go to his "playbook" for IBS: reducing stress was a good cure for him.  It is not that I’m opposed to yoga by itself as a treatment, but rather it was clear that it in my case the suggestion was a convenient way of categorizing and dismissing my symptoms...and getting rid of me.  As I've learned since, there area various treatments and steps one can take to help rebuild the gut, but those weren't discussed. 

Looking back, I still wonder if this physician would have treated a male patient the same way and told him to do yoga and relax. I have a hard time seeing a doctor tell my husband to do that in the same situation.

I guess it shouldn't have surprised me a couple years later when I started to have symptoms of autoimmune disease and doctors kept telling me that if they couldn't see anything wrong in the test results then I couldn't be that sick. At the time I didn’t realize that the process I had endured with my stomach would repeat many more times in the coming years once my autoimmune disease kicked off:

Step 1: Go to doctor for problem.

Step 2: Doctor conducts set of tests they "do" for a particular condition.

Step 3: Test come back inconclusive, slap a diagnosis (or not) on me, and tell the me try to relax or take pain killers.

The concept that further thought and clinical analysis was needed, that what I said was accurate, or that they should try to figure out a potential cause for my symptoms did not seem to enter the equation for most of the doctors I saw.  Or, another one my favorites, that they didn't know what was wrong with me, but I was young and would eventually get better and I just had to wait it out.

Thankfully, my stomach did clear up on its own with careful diet and the tincture of time.  It took almost a year for it to really return to normal.  Maybe this was an early clue as to how sensitive my body is to any assaults or disruptions.  And of course, I will never eat an In N-Out burger again, but the picture of the one above does look particularly good.

My New Low Tech Anti-Brain Fog Tool

Sometimes it is the simple things that can help.

I recently got a dry erase board with a magnet that attaches to my refrigerator.  It has become my new organizational and anti-brain fog tool.  My memory used to be pretty amazing.  I was even resistant to keeping a calendar, but now lists are a must for me.

I have been using it to write down the simplest tasks that need to get done--even loading and unloading the dishwasher, taking out the trash, and basic errands to the market and pharmacy.  It helps me remember  and also adds a sense of accomplishment to those days when I am exhausted and can't do much.  If I just check one or even two items of the list, the day doesn't feel like a waste.  I am thinking of getting another one strictly for my medical related to do lists.  Obviously, creating new lists and making any changes to an existing one is easy.  And the the best part is that it is stuck to the refrigerator so unlike a notebook, I can't forget where I left it!

Here's a link to the one that I have and it is pictured above, but any will do.