Eosinophilic Esophagitis diet – challenging gluten

Nutrition and nutritional knowledge is fast becoming essential to my life.  Having been diagnosed with Eosinophilic Esophagitis, and starting on the Eosinophilic Esophagitis diet, I am currently only able to eat fruit and vegetables and some rice and oats.  So my foodie life is pretty limited. And because I have a pretty severe case, I sometimes have attacks, even when I am eating ‘safe’ foods.  It makes no sense.

What is an attack?  My throat closes up on whatever I am trying to swallow.  It clamps down tight, and it hurts like a mofo.  Its dull pain but its strong – like having a golfball stuck in your throat.  You can’t swallow it down, and it won’t come back up.  It’s just stuck there, and causes intense chest pain. For several hours.

It doesn’t affect my breathing – people keep asking me why I don’t use an epipen. People keep confusing my allergic reactions with anaphalaxis.  I have an anaphalactic allergy to seafood. If I eat seafood, I swell up, break out in huge welty hives and I can’t breathe.  My tongue and lips swell, and my breathing passages close.  Without epinepherine or a breathing tube, I’d die.  That’s anaphalaxis.  That’s the usual reaction people think of when they think food allergy.

EoE doesn’t cause anaphalaxis.  It causes severe pain and tissue damage throughout the entire digestive tract.  And for me, these attacks are painful enough to bring me to tears.  And it takes a lot to make me cry. I live with severe Rheumatoid Arthritis for goodnesss sake. I can do pain.  I DO pain every single day, and most people would never know.

This shit hurts. It really does.

So now I’m at the point where I barely eat at all.  I don’t want to eat, because almost everything I eat causes my throat to clamp down for several hours.  I had an attack last night and now, over 15 hours later, my throat still hurts. It still hurts to swallow water.  Taking my morning medications was a nightmare.

For something that I thought was a minor annoyance when I was diagnosed, it’s become a real pain in the butt!

So I don’t eat. I try to gently swallow purees.

And I feel lousy.  Nauseous.  Weak.  I’m not getting enough calories to function.  Living on pureed apples and mashed potato is not recommended for a balanced diet. Nor is it very enjoyable.  And when I do manage to swallow food, I often throw it back up.  This has been going on for weeks…months.  I’ve been on the Eosinophilic Esophagitis diet for over three months now.  With a few ‘cheats’.  But at this point, I am paying dearly for those cheats, so now I’d just rather not eat at all.

So nutrition, and nutrition knowledge is very important now.  My dietitian has been of very little use.  She just wants to charge me $160 to explain things to me that I already know.  Yet she is giving me no useful direction.

I used to be the Nutrition Nazi. When I was young, maybe five, my mother started putting me on diets, because I was too ‘plump’.  This, surprisingly enough, led to teenage years where I was obsessed with food, calories and I became both anorexic and bulimic.

And I was still ‘plump’.

Because my weight had nothing to do with what I was eating.  I have Hashimoto’s thyroiditis and Polycystic Ovarian syndrome.  Both of those conspired to keep me short for my weight.  Plus, I have a large build.  It’s just the way I am. I’m fine with it now, but back in my teenage years I most certainly wasn’t.

Back then I could tell you the calorific content of any food, and break it down into carbs, fats and protein.

Eventually I got my eating disorders under control, but when I had my son, he had some behavioural issues, which were later diagnosed as Austism/Aspergers Syndrome.  But we tried all the diet treatments and changes to see if those would help. Again, I learned all about nutrition – this time including additives and colours and preservatives.

Changing his diet had no effect on his behavior, by the way. He has Asperger’s Syndrome.  He is on the Autism Spectrum.  And actually he doesn’t need to be changed or fixed or be ‘cured’.

But I digress.  Now that I seem to be allergic to all kinds of food, I am becoming the Nutrition Nazi again.  Because right now, I’m not really eating.  I have to start introducing foods, because after a few days without a real meal, I’m feeling pretty horrid.  I have no energy.  I stand up, I get really dizzy. I feel constantly nauseous, feverish, sick.  I have severe acid reflux, that meds don’t help.

There seems to be nothing I can eat without pain.  Some people with EoE actually require feeding tubes.  I don’t plan on being that person.  So I need to eat some food.   And keep it down.

In the absence of any advice from either my gastroenterologist, allergist/immunologist and dietitian, each of whom are telling me to ask the other one what foods to try introducing, I’m challenging gluten.

I tried to eat some apple crumble that my son made, and that shut my throat tight.  So wheat flour is the culprit there.  I challenged it twice, same reaction.  And it was a fierce reaction.  My throat is still raw right now, but when it heals, I will try some well cooked pasta.  If I can’t eat that, I’ll have to change to a gluten free diet permanently.  That’s going to suck.  I went gluten free for two years, and truly eliminating all gluten is not easy.

Then one by one, I’ll challenge the other foods I have eliminated.  I know that butter is OK, but all other dairy is out.  Corn is not allowed, nor is meat, although I have tested chicken and its fine.  Seafood is obviously out as are all grains except rice and oats.  Oh and no soy as well.  And no nuts either. I think that’s it.

Wish me luck with the pasta.  And standing up any time soon.

Oh and whilst living on a diet of mashed potato and pureed apples, no, my arthritis symptoms have not improved.  Not. One. Bit.