Eosinophilic Esophagitis, stomach pain and back on the Top 8 Elimination Diet

Today is my son’s 16^th birthday.  Excuse me while I indulge in cliché, but where have the years gone???

His favourite place to eat, and a long-time favourite of our family’s,  is Brod Burger, on the Kingston foreshore in Canberra. They make the very best burgers in town.

But they do not do gluten free at this time.

I have Eosinophilic Esophagitis. I am definitely allergic to wheat, and probably all gluten containing grains.  I am very likely allergic to dairy, but that isn’t definate yet.

So I bought a regular Baby Brodburger and did my usual thing – pick the middle of the burger out of the bread. I know there are people watching me thinking what a tool I am, but hey, I want the burger. I can’t have the bread.  So I eat the middle of the burger. It’s messy and not very ladylike and totally delicious!

But today, after picking my burger to pieces, I have developed a pretty ferocious stomach ache. I know this stomach ache, it happens when I’ve eaten something I’m allergic to.  I get horribly bloated, as in I look easily four months pregnant, and it’s very uncomfortable.  I’m very nauseous and want to throw up, but I know from past experience that doesn’t actually help.  I just have to wait it out while my body digests the offending food, and deal with the stomach ache for a few hours.

I had a little of the bread, there are always some crumbs.  I asked them to hold the cheese, but they forgot and put some on. I would have eaten some melted cheese scraps along with my burger patty, Spanish onion, mustard, garlic aioli, tomato, pickles and gourmet lettuce.

Cross contamination.  I used to be able to eat a little bread, have a little dairy, with no problems. That is no longer the case.  My allergies are getting worse.  Why? I have no idea.  I am on less prednisone again, so that’s part of the reason.  Prednisone tames all kinds of inflammation, including that caused by allergic reactions.

I am waking up many mornings looking like the elephant man with my eyes swollen almost shut. It takes a few hours of cold compresses, cold water washing of my eyes, and lots of moisturising drops, and antihistamine drops to bring down the inflammation, and then I can see again.

It’s very annoying.  I haven’t found the trigger for what causes the eye swelling, but its most likely environmental. A day with a high pollen count.  Nothing I can do about that.

It is also more than a little uncomfortable.

On the whole, I’m pretty unhappy that not only are my autoimmune diseases out of control, my allergic diseases seem to be hell bent on competing for the titles of ‘Most Uncomfortable’ and ‘Most Inconvenient’.

I’m not miserable though. We have had a great day. I need to rest now, and I’m lying down with a heat pack on my aching belly, ice packs on my knees and hips and a heat pack strapped to my back.   Pain is my normal, so I can still hang out with my son and play Cards Against Humanity or watch some super hero movie with him and enjoy it.  And if I rest for a while, my joints will recover, my energy will return.  My stomach may take longer.  It usually takes a few hours for the pain to recede and then the bloating to subside.

So what to do.

I have to be ultra-strict on the top 8 elimination diet.  I have been basically following it, but in the last week I have let a few things through. With the result of bloated bellies and swollen eyes.  So time to tighten up again.  No cheating. No cross contamination.  I need to start treating my allergies as if I were anaphalactic. (I do have an anaphalactic allergy to seafood and carry an Epipen for that).  Because the consequences of eating an allergen are becoming very nasty.  Not dangerous, but definitely unpleasant.

So back on the top 8 elimination diet – no gluten containing grains, no dairy, no soy, no corn, no egg, no peanuts or tree nuts, no seafood, no meat except chicken and kangaroo.

That leaves me allowed to eat rice, vegetables, fruit and chicken.  I can use salt and pepper and spices as flavourings, and homemade sauces that don’t contain any of the top 8 allergens.

No processed foods as pretty much everything that comes out of a factory, even a boutique one, has one or more of these allergens.

Life is going to get very boring on the food front again.  Not to mention very much harder.  There are no quick meals.  So on bad days when my rheumatoid arthritis has knocked me flat, there’s no safe quick meal I can throw together.  The kids are old enough to fend for themselves now though.

Last time I did this I just lost all interest in food, I barely ate at all.  Which is not healthy either.  And not good for fatigue levels.

Last week one of my goals was to start eating again, and to cook and freeze allergy friendly meals.  I haven’t gotten very far with that plan yet, but I have to make it a priority now.  I did cook more, however, and ate a lot more, but found myself reacting to ‘safe’ foods.

Not a good sign.

I have had a clean scope while corn and soy were included in my diet, but I will go right back to basics for a few weeks, to be safe.  Not fun.

But this stomach pain is not fun either.  And I know it will last for several hours, and I know I did it to myself, which just adds insult to injury.  But no more.

I see my Allergist/Immunologist in about a month.   We’ll have to organise another scope from there to see what shape my stomach and oesophagus is in.   Last scope showed gastritis, and my gastroenterologist and my immunologist both told me not to take Naprosyn EVER again.  But my rheumatologist told me to start it again last week and I did. Because it is quite effective at reducing the pain and inflammation in my joints, and I was getting to the end of my rope with that pain.

But the Naprosyn is probably causing my gastritis to flare up again, and aggravating my allergies.

Sometimes you really can’t win.

So it’s time to be strict. I remember thinking EoE wouldn’t be a big deal.  I was so very wrong.