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?

My Non-Rx Remedies for Sjogren's and Ear Pain

Many readers have contacted me about my previous posts on Sjogren's and Ear Pain and seem to experience a similarity in symptoms.  On my end, due to a recent productive visit with an ENT (yeah!), I now know that my ear problems are not only neurological, but are also a result of chronic sinusitis and eustachian tube dysfunction (ETD) -- common problems for Sjoggies.


When my nasal passages and sinuses are particularly dry and I am congested, my ear symptoms are worse. This makes sense given that the ear, nose, and throat, are of course, all connected.  My previous post described how some doctors suspect that ear pain or otalgia in Sjogren's patients might be partially caused by dryness in the upper respiratory tract, which can lead to ETD (above picture shows how the eustachian tube connects the back of the nose to the middle ear).  


There are a few non-medication remedies and strategies that I have developed over the last few years to help relieve my symptoms of earache and ear pressure. They are by no means a cure all (and please consult your doctor before preceding with them), but anything that helps a bit and allows me to to do more and be more comfortable is worth it.  And I hope that these might be helpful to others so here goes...

• Saline Nasal Spray -- I use this a minimum of twice a day in each nostril, but sometimes more to keep my nasal passages moist and clear my sinuses.  I also flush my nasal passages with saline prior to using my prescription nasal sprays for better absorption of the medication.  I carry a small size bottle in my purse for emergencies. Saline nasal sprays can be found at any drugstore and popular brands are Ocean and Ayr.  There are also pharmacy brands available at most drugstores, which seem to work just as well.

• Steam Inhalation/Vapor Therapy --  For me, this is one of the most effective ways to alleviate my ear pain, moisten my nasal passages,clear congestion, and unclog my ears.  I use the Vick's Personal Steam Inhaler and apply about two to three drops each of peppermint oil and eucalyptus oil to the water basin and steam for about 20 minutes at a time.  In their chapter on the Otolaryngologic Manifestations of Sjogren's Syndrome, Drs. Jacqui Allen and Peter Belafsky discuss that steam inhalation is helpful to Sjogren's patients in their practice and recommend trying it two to three times a day.  I would estimate that I have some improvement 60 percent of the time after steaming.  The Vick's Inhaler can be purchased at drugstores and through Amazon.  I usually find the peppermint and eucalyptus oils at a health food store or a place like Whole Foods which carries organic products.

• Hot Tea --  This is very simple and serves as my version of steam inhalation when I am not home.  If my ears hurt, I will order a boiling hot mint tea and breath in the vapors.  I know it probably looks ridiculous and people around me must wonder why is that woman sniffing her tea, but it can help a bit and sometimes prevents me from having to head home early.

• Chewing Gum -- Chewing gum with xylitol is already recommended for Sjoggies with dry mouth to stimulate saliva and help prevent dental decay, but it also helps equalize ear pressure especially if you have eustachian tube dysfunction. It is the same principal as chewing gum when you are flying, and it is also a good option especially when I am on the go and cannot use steam inhalation.

• Keep Ears Dry with Ear Plugs -- When my ears get wet from showering or bathing, it often exacerbates my symptoms.  So I have started to use silicon ear plugs such as those made by Mack or BioEars for showering to keep them dry.  I also avoid putting my head under water when swimming for the same reason.  If my ears still happen to get water in them, I use ClearEars which are a pretty cool ear plug that are specifically made to remove water or moisture from the ears (they also happen to be echo friendly as a bonus).

And these are my main tips for now.  Please share what works for you too so we can start a dialogue and help each other deal with these ear symptoms.

*I have no relationship with any of the companies whose products are mentioned in this post*
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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.

Sjogren's and Ear Pain: I thought it was just me

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My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?