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?

Ear Progress: My Story of Sjogren's and Ear Pain Continued

I think writing the most recent blog post about the possible ear manifestations of Sjogren’s might have been a good omen.  As I had mentioned, I had been unable to find an ENT physician with interest in really investigating my symptoms and knowledge of autoimmune disease.  The usual story would be that I would go to the ENT, he would look briefly in my ears and tell me everything looked fine. They would say that my ear symptoms where all related to the cranial neuropathies I have due to Sjogren’s and refer me back to my rheumatologist and neurologist.

For the last two years during these appointments, I have tried to explain that it at least felt like there were two different problems going on and two different sets of symptoms; the neurological aspects of autoimmune disease and something else that was causing what felt like an ear infection and ear pressure.  But doctors, as I have so often experienced, do not always spend the time to figure out if what the patient is saying is actually accurate nor to really investigate what might be causing a patient’s symptoms.   To make it more complicated--and more frustrating--my allergist and my internist on several occasions would look in my ears, find them red and inflamed, diagnose me with an ear infection, and put me on a course of antibiotics. This might help for a few weeks, but then the symptoms would return.

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The pattern repeated itself last week but my internist did not want to put me back on antibiotics without getting a second look from an ENT. While I was skeptical that this would be nothing but another fruitless trip to yet another new ENT’s office, I agreed to give it one more try.  I went to the new ENT’s office and was first seen by the resident who looked in my ears with an otoscope and said everything looked fine. Another wasted trip to the doctor I thought, at least I am no longer surprised by them. 

Then I met the ENT doctor. He was pleasant and very interested in my medical history.  When he looked in my ears with the otoscope, he said “I think I know what is going on here.” He then used a nasal endoscopy to look at my sinuses, throat, and ears and see if his hunch was right. At this point, I did not know what his hunch was, but I was glad to hear he had one. The doctor explained that I had eustachian tube dysfunction, which is suspected to be one of the primary causes of ear pain and pressure in Sjogren’s patients, as I wrote about here.  He also diagnosed me with chronic sinusitis.  Because the conditions are chronic and not acute, antibiotics would not provide a long term solution.  And so the doctor came up with the following plan to get started and see if he could treat these two related issues.  

1) He gave me a prescription for two new nose sprays: a steroid and an antihistamine.  I was already using a steroid nose spray, but he felt this one would be more effective.

2)  I would need a CT scan of my sinuses to get a better look at them.  (I was not crazy about needing another scan, but it turns out they had never looked at my sinuses and given my ear problems and pain level I’ll do it.)

3) Additional blood tests for allergies to see if the chronic sinusitis might be partially allergy mediated.

One of the most notable differences between this appointment and others I have had was the interaction and mutual dialogue between physician and patient.  My new ENT appreciated that I was a knowledgeable, well informed patient and said he learned a lot from my complex medical history.  While I don’t want to be too optimistic, I am really hoping this will be the beginning of some progress on the treatment of my now officially diagnosed eustachian tube dysfunction and chronic sinusitis.