Rheumatoid arthritis and losing your appetite

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I don’t have an appetite.  People joke and say “I wish!” but it is not a good thing.  What it means is I find it hard to eat, I can’t enjoy food, and while food is primarily nutrition – fuel for your body, it is also a huge source of pleasure, and social interaction.  People gather for a meal to enjoy it together. If you don’t eat, people notice, and sometimes become uncomfortable.  And enjoy their own food less.  Or they don’t eat either. (‘Oh if you’re not having cake, I’ll just have coffee too…’).  It’s awkward to say the least.

It’s also very difficult to come up with meals to cook every day when the mere thought of most foods makes you want to hurl.  Raw meat in the grocery store grosses me out.  Vegetables are bland and uninteresting.  I don’t have a sweet tooth, but I crave salt if I crave anything.  Very little appeals.  And sometimes the only things that do appeal, I’m allergic to.  Like bread, or more specifically allergic to, wheat.  Even though I’m not anaphylactic, there is still a long list of foods I shouldn’t eat, including wheat and all dairy, because I have Eosinophilic Esophagitis.  It makes meal prep and planning much harder, too much trouble when there is no desire for food driving it.

My appetite has been poor for years, but it left the building completely when I started the Top 8 Elimination Diet for food allergies.  The Top 8, as prescribed by my dietitian, involved cutting out all dairy, grains (except rice and oats), egg, soy, peanuts, tree nuts, meat and seafood.  That doesn’t leave much.  I cut out the top 8 for three months.  For two weeks of that I lived on nothing but liquid – a complete protein food supplement.  After four months, and a clear endoscopy I was allowed to start re-introducing foods, one at a time.

After many months on a diet that restrictive, I just lost interest in eating.  I preferred to not eat at all than eat something I didn’t feel like eating.  It was just easier.  I started the diet back in October 2015.  Its only in the last six weeks that I’ve started to lose weight, despite a daily average calorie count of 600-800 calories.  Even if you assume I grossly under count my calories, even if you double my calorie intake, it’s too low to be healthy.

But I can’t just eat. I have no appetite.  And having no appetite doesn’t mean I’m not hungry.  I do get hungry. I’m hungry often. But there is nothing I feel like eating. Usually food smells turn my stomach, and I feel nauseous.  Sometimes a food is appealing, but I start to eat, and after a bite or two, I feel nauseous.  Really nauseous. And obviously I don’t want any more food.  So I stop eating and wait until the nausea passes.  And I eat a few more bites later.

I eat in small bites throughout the day. In the end, with juice and coffee and wine and bites here and there, I usually make it to between 600 and 800 calories a day.  And it has been that way for several months.

And no, I can’t just eat something. Food is often repulsive to me, about as appealing as eating manure.  Appetite and hunger are NOT the same.  And because I am quite clearly overweight, my dietician didn’t believe my food diary.  Once again, I must be lying.  Making it up.  (Bit of a theme in my life).  Because…why again?  I can’t seem to remember what my secondary gain is here. What’s in it for me?  Oh yeah, nothing.  And I don’t need lectures from my dietician on how she can’t help me if I’m not honest with myself.

So to hell with my dietician, I will not pay $130 to be insulted.

At this time I think it’s more important that I eat than that I take care of my Eosinophilic Esophagitis.

The only thing that appeals to me is white bread.  Not a normal food to me by any means.  Even before my diagnosis, I didn’t eat white bread much. But now, it’s the only thing that I want to eat.  So I’m going to eat that.  See if I can get an appetite back.   I have about a week before my throat will start to clamp shut.  I don’t much care about that right now.  I will go back on the elimination diet when that starts to happen.  I know that meat, corn and soy are OK, I reintroduced those successfully before I tossed the whole thing in about two months ago.  So it won’t be that restrictive.

But for now, I just need to eat.

5 COMMENTS

  1. Oh my gosh I’m so glad I just happened onto your blog. I’m living with RA and absolutely no appetite. I’m so tired of everyone pushing food at me and my husband basically blaming my flare up on me for not eating properly. Just to have someone else understand and know what is going on with me is very helpful.

    • oh I do understand. People vastly underestimate the power of food, and have trouble understanding when you can manage to eat anything. It’s not a willful act. If everything you eat makes you nauseous, you lose interest pretty quickly! And having food pushed at you doesn’t help, though I’m sure your husband means well. Though personally, food has no effect on whether I flare or not. I hope there are enough foods you can stomach to keep you going. Best to you.

  2. Thanks for posting this. I have RA and struggle with loss of appetite and can relate to much of what you said. Glad to know I am not alone.

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