Oh its just a wheat allergy

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We all know that ‘arthritis’ is a supremely under estimated and misunderstood disease, with many normal people considering it to be nothing more than a nuisance…certainly not anything serious.  This is one of the hardest aspects of living with rheumatoid arthritis, or any form of inflammatory arthritis, the dismissal by the world at large of the pain and suffering that ‘arthritis’ can cause.

Allergies are much the same.  “Oh you’re allergic?”  People snicker.  Big deal, right?  Because, just like ‘arthritis’, everyone bangs on about being ‘allergic’ to something when they really are not.

I am allergic to a great many things, and trust me, allergies can cause a lot of misery.  Even when the allergy is not anaphylactic, symptoms can be severe. And most allergies get more severe over time. Whereas in the beginning, you might have a mild reaction, after a few exposures that reaction can become much more severe. Until you find yourself with your tongue swelling and your airway closing, fumbling for an Epi-pen after accidentally eating a few crumbs of something that used to be ok.

I’m allergic to wheat.  Diagnosed by an immunologist/allergist.  It’s a real allergy. It’s not a gluten allergy, it’s a wheat allergy. I am not Celiac, that’s an entirely different disease. It’s not an ‘intolerance’ its an actual allergy.  An immune system response.  I had all the skin prick testing and bloodwork done, and I reacted strongly to wheat.

Bummer.

In the beginning I used to be able to have a bit of wheat.  Frankly, I barely noticed any reaction because I suffer moderate allergy symptoms every day.  I have nasal congestion, daily bouts of hives, I have abdominal pain and angioedema (swelling in the lower levels of the skin).  I look like the Michelin Man with red welts most days.  My hives are usually easier to hide, but the swelling and bloat is both uncomfortable physically and emotionally.

The congestion in my head is like having a cold every single day of your life.  I know, a cold, boo hoo, poor you, right?  Well a cold can make you pretty darn miserable!  Think about it, its one of the most common ailments, but most people go to bed and whine a LOT when they have a cold.  I feel like have a bad one every single day.  I have a low-grade headache, and my head feels full of pressure. My sinuses hurt and my nose is somehow totally blocked so that I can’t breathe properly AND running at the same time. I have no idea how that’s possible.

But it IS miserable.  And its normal, and I just live with it. Because despite taking 4 x the daily dose of Telfast (fenofexadine) every single day as prescribed by my immunologist, the symptoms remain.  It is worse if I don’t take the medication. Most people take one 180mg tablet and that lasts 24 hours. I take two in the morning and two at night. I also take Phenergen (promethazine) at night as well, every night. It helps me sleep and it helps me breathe. Two really important things.

My nose runs all day long. I’m constantly wiping it.  I carry bucketloads of tissues where ever I go.  It drives me nuts. I hate it. But there’s nothing I can do about it.  Again, a runny nose, poor you!  But honestly? It really, really sux.

There are treatments for allergies like mine, but they can’t be taken with the biologics for my rheumatoid arthritis.  My immunologist considered my arthritis the more serious disease, and said unfortunately there wasn’t much more she could do.  But given that I am not on a biologic at the moment, I’m going to make an appointment with her to look into other treatments. I’m sick of the headache, the running nose, the itchy hives, the angioedema.

Yesterday I had a severe reaction. The day before was a bad flare day, and at dinner time I was hungry but in too much pain and too tired to make myself something proper. The kids were having those disgusting packet noodles. The Asian flavoured ones, with chili.  I don’t much like processed foods, but sometimes these things seem like the very height of gourmet deliciousness. The kids made their noodles, and they looked and smelled wonderful. And I was starving. And you know what I did then, don’t you?

Yep, I made myself a bowl of noodles.

Bad, bad move.

I’ve done this before, like I said, previously my allergic reactions were indistinguishable to my every day allergic reaction to life.  But this time, within ten minutes of eating the noodles I was very, very sorry.

The abdominal pain that I have whenever I eat anything kicked in tenfold. I was doubled over and in agony.  Oooops.  I then spent the next two hours throwing up.  My face swelled, my tongue swelled, and I got the wheezes.  Not anaphylaxis, but only one small step down from it.

The following morning I woke looking like the elephant man.  I weighed myself that morning and this morning and I had an extra 4kgs of fluid in my body. I was puffed up everywhere, and it hurt.  My skin felt too tight.  Horrible feeling.

I spent most of the day in the bathroom, with severe diarhea. The headache became severe, and I was dizzy and nauseous.  I was so fatigued, I had to spend most of the day sitting or lying down.

What an incredible waste of a day.  It was completely avoidable. I know I’m allergic to wheat, and I ate the noodles. I also know that allergies tend to get worse with every exposure.  I should have known better.

But…lesson learned.  My wheat allergy is no longer mild, its severe. The next time I get exposed to wheat, it could be an anaphyalactic reaction.  I already have an anaphylactic allergy to seafood, and exercise anaphylaxis.  I really shouldn’t have pushed it.  Never again.

It was a massive relief to wake up this morning feeling ‘normal’.  Well, MY normal.  My allergies kick in within 30 minutes of exposure, and usually the symptoms last 24 hours.  Today I am just back to the usual…low grade headache, constantly running nose, itchy eyes and a few welts here and there.  The angioedema is gone, my skin doesn’t feel stretched and tight.  And I’m 4kg lighter!

I’d love for these remaining symptoms to be gone too, but it’s a big improvement.

This morning I went through my pantry and sorted my food. I have kept a few wheat containing products, but I’m keeping them in a separate area, for the kids only.

I went grocery shopping and I bought some wheat free substitutes.  Gluten free bread mix, rice crackers.  I don’t eat grains of any variety often, a high protein diet works better for me, but I need some quick snack options.  Most of the simple, quick meals and snacks contain wheat.

The hardest thing for me has always been not being able to grab a quick sandwich for a quick meal.  Or a cheese toastie…one of the greatest food inventions known to man!  There’s no substitute for that. Gluten free bread is NOT bread.  It’s yuck!

I went mostly grain free years ago.  Most junk food is grain based – cakes, biscuits, pasta, pizza. All out.  There are gluten free versions, but I don’t much care for them.  I’m not a big junk food eater, period.  I just don’t like it.

Being wheat free does make it hard to eat out though.  Luckily, I don’t do that very often either.

So, nothing has really changed, except I will be absolutely vigilant now. No more minor exposures, nothing containing wheat, even traces, will pass my lips.  Because even small amounts could cause major reactions.

I’m used to living on a very restrictive diet, but sometimes I get sick of it.  All the fun has been taken out of food, and I have to plan and prepare meals carefully.  It’s all just effort.  And unfortunately, despite cutting out grains and dairy, it had no effect on my rheumatoid arthritis.  Many people fervently believe that dietary changes help RA, not the case for me.  Even when I tell them this, I read their scepticism all over their faces, as they secretly think I’m too undisciplined to really *try*.

But while allergies are no where near as painful as rheumatoid arthritis, they cause significant misery and hassle and are maybe even more misunderstood.    And they add another layer of complexity to my life, because I am allergic to so many things.  Everything I eat needs to be home prepared and made from scratch.

It’s work. It’s energy I don’t always have, but its life.

 

4 COMMENTS

  1. Oh, we had a family meal last spring where there was a moment of… ack! how do I feed this crowd with:

    allergies to seafood and yeast (epi-pen hopefully never, liquid Benadryl often as just being in restaurants seems to no longer be an option)

    no sugar

    celiac –> gluten free

    vegetarian (not even fish)

    and

    low FODMAPS with rice intolerance (the most flexible but also ends up miserable)

    There are no quick, easy meals ever any more, and that’s without the grandmother who won’t even consider tofu. But everybody is medically cleared to eat tofu!

    I manage GF/low FODMAPs fairly well but then if you add in a few more people… I will say, the substitutes will start to taste better in about four years if you don’t eat them for a while. Certain items are more passable than others (crackers often do just fine, Schar makes a lovely crunchy breadstick, corn-based pastas have improved to palatable when served warm (not cold), and fake oreos almost always pass reasonably well).

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