Eosinophilic Esophagitis Treatment and my treatment plan

I was diagnosed with Eosinophilic Esophagitis (EoE) several months ago.  I was referred to an immunologist/allergist, and have now seen a dietitian who has a special interest in Eosinophilic Esophagitis treatment.

While there are conservative approaches for this condition, my case is severe and I need to follow a strict elimination diet, to figure out what I am allergic to and improve my symptoms.

The symptoms vary in severity from person to person but the most common symptom is difficulty swallowing.  Other symptoms include  food impaction (swallowing food and having it get stuck in your throat), chest pain (due to food being stuck) which is very severe, indigestion and reflux that are not responsive to proton pump inhibitors (which reduce stomach acid production) and upper abdominal pain.

When the disease becomes severe, it becomes impossible to swallow solid food at all, and I was living on purees and liquids for a few months before finally being diagnosed.

The most common cause is food allergy, although some cases are due to environmental allergens.  My case is severe, and I am already on oral steroids (prednisone) so my immunologist is perplexed.  She says she has never seen a case non-responsive to 15mg of prednisone.  I’m getting used to confusing my doctors.

So the only option is a very strict elimination diet.  This means cutting out dairy, egg, soy, wheat and other gluten containing grains (rye, barley), meat (beef, lamb, chicken, pork, goat), seafood, corn, potato, rice, peanut and tree nuts.

As you can see, that doesn’t leave very much.  My dietitian has allowed me to eat oats, and drink oat milk. I can also have coconut milk, and rice milk.  She told me to avoid rice, yet rice flour is OK.  Not too sure about that advice. I assume rice is fine.  She has also told me that kangaroo meat, and rabbit are OK as well. Beans and legumes are Ok. Sugar and salt, and herbs and spices are allowed.

But no processed foods, sauces, pastes, curry pastes, gravies or stocks are allowed.  All of these contain ingredients derived from wheat or corn or soy, and are not allowed.

So it’s very difficult to put together an interesting meal.  It can be done, but it’s a lot of hard work.  I can make my own curry pastes and sauces.  But with my fatigue and pain levels, it’s really not realistic.  So ultimately I’m not eating much at all.  Some fruit and vegetables, and porridge.

And then you add to that my son with Asperger’s who is an incredibly fussy eater at the best of times, and it is impossible to create a meal that everyone will eat. Let alone a few meals.  So I’m making simple meals for the kids, and just eating a steamed potato or sweet potato or stir frying up some vegetables.  And eating kangaroo burgers.

After four weeks, I’m just not interested in food at all anymore, and it’s just easier to not bother.

My usual diet has a lot more protein, some fats, and fruits and vegetables. I’m not a huge grain eater, so going without those is not too bad.  But I usually snack on protein. I grab a boiled egg, or a piece of cheese, or meat as a quick snack.  I can’t do that now. And I am not doing well without protein.  I have been taking in anywhere between 1000 and 1500 calories daily, and have gained almost 4kgs in the four weeks I have been doing the diet.

My calorie intake is very low. Yet my carb intake is high. Gaining weight would seem to be impossible.  This diet does not suit me at all!  And it is incredibly frustrating to be eating very little food, and yet gaining weight.

Doctors just blame it on prednisone, but I have been on prednisone for five years. It’s not the prednisone.

I need to continue with this diet for another four weeks, and then have a repeat endoscopy and biopsy.  If the allergen has been removed from my diet, the biopsy should find no more eosinophils.  And then I can start reintroducing foods slowly, so see which I react to.

It’s a long, slow process.  But ultimately I will find out what I am allergic to, and which foods are safe for me.

Currently, I am having difficulty swallowing again, even though I had an eosphagal dilatation only a few months ago.  Even liquids are hard to swallow sometimes.

My dietitian said I should experience an improvement in symptoms within two weeks. This hasn’t happened. If anything, I am worse.  And frustrated because of the weight gain.

When I spoke to her, she suggested that my case may not even be caused by food.  It could be an environmental allergen, such as pollens, which will be very hard to nail down.  And very hard to treat.

My immunologist believes it may be an allergy to one (or more) of my medications.  She has already told me to stop taking Naprosyn, as I also have gastritis, and I am never to take Naprosyn or any other NSAID again, as they are common culprits in EoE.

Oh and its Christmas time.  Being surrounded by delicious food that I can’t eat is not a whole lot of fun either.

One benefit that I was looking forward to was finding out if my rheumatoid arthritis pain might improve while on this hypo-allergenic diet.  Many people do report finding improvement in their arthritis symptoms if they exclude gluten, and/or dairy.  And I do believe that it is always worth a try.

This diet is so strict, that I thought it would be an interesting experiment.

Unfortunately after four weeks, there is definately no improvement in my rheumatoid arthritis.

I have done elimination diets in the past, so I’m not surprised.  But I did have a small hope lurking that maybe, just maybe, my symptoms would improve.

But I think it’s fair to conclude, that for me, diet has absolutely no effect on my autoimmune diseases.  I wish it did.  There is no food, or foods, that I wouldn’t give up to have a significant reduction in pain.

There is another four weeks to go until my endoscopy.  I still may find some improvements.  But I’m not hopeful.  A few years ago I was a gluten free vegan for 4 months.  That was very similar, although I still ate soy and nuts then.  Those have been excluded as well now.

So I’ll continue on with the diet.  And my immunologist is going through my medical history with a fine took comb, as she feels none of this adds up.

In the meantime I have seen a new GP, while my usual guy is on holidays. She is very interested in functional medicine and autoimmune disease and has given me a lot of reading and resources to look into.  This gives me some interesting bedtime reading and a new direction to work in.  Of course I have seen a functional medicine practitioner before, but he turned out to be a supplement salesman, and not much more.  I tend to trust a medical doctor who is training in functional medicine a whole lot more.

Concepts like leaky gut, methylation, mercury poisoning, epigenetics, while a few years ago were dismissed as complete bunk, are now starting to be researched and gaining some acceptance.  So I’m reading and learning.  And gives me another avenue of hope.  And something to think about rather than food!