Things Not to Say to People With Invisible Illnesses, Part Two

“Can’t you just have a little bite of [thing I can’t have a little bite of]?”

“Gluten-free is the trendy thing nowadays, I guess.”

“Will just one piece kill you?” (I don’t know — do you want to come to the emergency room with me after I eat it?)

“There’s an ‘autoimmune’ Paleo thing too? All this Paleo stuff is just marketing.”

“I can’t believe you have that many allergies.” (Me neither.)

“You just have to eat whole foods and not processed foods.” (Wow, it’s that simple? Why did no one tell me this before?)

“Eating organic is a waste of money.”

And my all-time favorite: “If I had to eat like you, I would kill myself.”

Ever since I was diagnosed with Lyme and started working with a functional doctor, I’ve been on some kind of healing food plan, from the candida diet to autoimmune Paleo to low-histamine eating. And no matter what food plan I’m on, there’s always some amateur nutritionist with a passionate-yet-uninformed opinion about it.

It’s hard enough to find things that are safe to eat without hearing so much negative commentary.

Right now, I’m following a very low-histamine plan, as you probably guessed from the cartoon. My MCAS had gotten better, but unfortunately it got worse again during my time living in the Mold Palace.

I’m also probably going to have to start the SIBO diet (small intestinal bacterial overgrowth, for those unfamiliar) because of the current evil bloating situation.

I just need to do the SIBO test that has been sitting in my cupboard, making me feel guilty for putting it off. Maybe I don’t even need to do the test as it seems I did another cartoon about bloating a few years back.

Can multiple drawings about bloating be diagnostic for SIBO?

I’m really not looking forward to eating low-histamine AND low-FODMAP, because I tried spaghetti squash the other night and it tasted like slightly sweet, moistened small worms. Hopefully there is potential for improvement.

I’ve noticed that obnoxious food comments vary according to my body size at any given moment. So, if I am at a low weight I might get: “Isn’t that too restrictive? Are you getting enough nutrition?”

Unfortunately, thanks to mold and perimenopause, I’m twenty-five pounds overweight, and now the comments go more towards fat shaming: “If I ate like that I would be so skinny! Oh wait, I didn’t mean…”

Well yes, you did mean.

If I mention that I don’t eat sugar and bread, which is a leftover habit from doing the candida diet and Paleo, people assume it is all about weight loss, and say something like: ”But you have to exercise too.” So I might say that I do the type of exercise I can do safely (clinical Pilates, created for people with injuries and wonky bodies). Then I am likely to hear: ”But you need to do CARDIO.” I was bedbound for years and I’m amazed I can exercise at all. I’m happy I can walk more than a block or two. I am not yet ready for CARDIO.

I never was a big fan of cardio. Before I became ill, I worked out on machines, because elliptical trainers and treadmills don’t judge you. I couldn’t handle any sort of exercise class, because I lack rhythm and the ability to follow dance steps, and therefore I’m most likely to end up dancing my way to the left side of the classroom when everyone else is on the right (this happened several times in step aerobics before I gave up).

But what’s interesting is that no one ever asks if any food plan I tried helped with symptoms. I hear talk about “eating healthy” all the time, and everyone understands basic ideas such as “vegetables are better than Twinkies,” but the idea of eating to reduce symptoms like pain, rashes, or gut inflammation isn’t widely understood or accepted.

I think the plan I was on the longest was autoimmune Paleo (AIP). It helped a lot with my body pain. I remember that when I started it it felt horribly restrictive, especially since I was trying to do it in a low-histamine way.

I really miss red wine. Sadly, it is very high in histamine.

My excellent new health coach, Kimberly Quirk, works with and has MCAS, mold toxicity, and Lyme, and she set up the goal of someday getting the MCAS sufficiently under control to enjoy a nice glass of red wine without a mast-cell freakout.

After doing AIP for a few years, I found a bunch of AIP-compliant recipes I really liked. But I unfortunately developed gastritis while living in the Mold Palace, and could eat only white rice and almond milk for a while. After my stomach started to heal and I could eat regular foods again, I gradually let a few AIP restrictions go. For example, you’re supposed to avoid nightshades because they can cause joint pain, but I added back bell peppers because if I only have them twice a week they don’t bother me. And then it turned out I didn’t react to almond milk, so the AIP prohibition on all nuts seemed excessive. But the AIP taught me that I do better with just protein, vegetables, and fruit—bread and grains are not my friends.

If you’re just starting AIP and are wondering what to eat, I really love the Autoimmune Paleo Cookbook by Mickey Trescott. The Alternative Autoimmune Cookbook by Angie Alt is also good. If you really like Asian food and don’t have to eat very low-histamine, I recommend Paleo Takeout by Russ Crandall; you can go to the author’s blog to see modifications for AIP. I haven’t found a low-histamine cookbook I love yet, but Claire from Through the Fibro Fog has created many brilliant low-histamine recipes. I can’t develop a recipe to save my life, but am addicted to collecting recipes and putting them on this Pinterest recipe board. And if anyone knows a low-histamine way to make spaghetti squash more appetizing and less wormy, please let me know. Please check out the Things Not to Say to People With Invisible Illnesses, part one.

What types of food plans have you tried or are trying, and have you received unwanted amateur-nutritionist comments about them?