WW: Living with Food Allergies – Getting Sick while Getting Well

We don't want to end up as exhibits ourselves...
We don’t want to end up as exhibits ourselves…

One of the surprising things about having food allergies is the fear of getting sick and whether the process of getting well will make you sicker. It’s much more complicated than you might imagine.

Name Tag DeniseIn January, I managed to get either bronchitis or pneumonia, which affected my asthma to the point that my nurse practitioner considered admitting me to the hospital because they couldn’t get a peak (air) flow at first. I did a nebulizer treatment in the office and then talked them out of admitting me. Why did I talk them out of admitting me? Well, yeah I hate the hospital, who doesn’t? But my first reaction, was “what would I eat? There’s no way they could serve me corn-free food, let alone deal with the other 12 allergies.” My second reaction was “I’ll get a rash from the sheets; there’s coconut in their detergent.” And although I’ve saved the Corn Allergy Girl’s Emergency Room Safety Doc to my phone, I was there by myself and wasn’t sure I had the air to self-advocate for what I would need at the hospital.

I didn’t have the money to pay for compounded medication, as our insurance doesn’t cover it and I didn’t know how long it would take to get it compounded. I ended up choosing the lesser of two evils and taking three regular medications, all of which had corn. Although it did help me breathe and get over the bronchitis or pneumonia, it also caused me to have a corn reaction the entire time I was on the medication. So I swelled up like I had gained 20 pounds, broke out in cystic acne, broke out in blisters on my foot so that the bottom of my foot had open wounds in a 2 inch square area, had terrible brain fog, and had insomnia during the whole time. And it took me weeks to get clear of the corn reaction, once my lungs had cleared and I could breathe again, and for my foot to heal. 

This raises the question of what will happen when I really have to be admitted to the hospital. I’ve known that I really need to have a plan in place, but I still haven’t gotten myself together. I would need safely-laundered sheets, pillow cases, and bed clothes; safe toiletries; a list of the foods and derivatives to which I’m allergic; and actual safe food and drink. I keep putting it off, but one of these days I’m going to need it and then I’m going to be sorry that I didn’t get around to doing it. 

One of the things I find most disturbing about seeking medical care is that the medical profession just doesn’t seem to know what’s in the stuff they prescribe. I love my nurse practitioner, but when I needed an antibiotic, she asked me which one was corn-free. I had some testing done at the time of my annual physical and I turned out to be low in Vitamin D and magnesium. The nurse called to tell me the results and to tell me to get a supplement. I laughed and said I wouldn’t be able to find one that was corn and coconut-free. The nurse, in an attempt to be helpful, called back later and left a message with several suggestions. Then I had to call her back and tell her that half of the ingredients in the ones she had suggested were corn and coconut derived. 

I went to the optometrist in December. She said my eyes looked irritated and I needed drops. I said that I was allergic to milk, corn and coconut (these are the most prevalent of my allergens in medications). She handed me three sets of drops so I could look at the ingredients. None them were safe. I tried to seek alternative care through a naturopath, and she wanted me to go on supplements, and I again laughed. And sure enough, all of the ones she wanted me to take had corn and/or coconut derivatives. I got such a bad vibe from her lack of knowledge and insistence that it was a good company making the supplements that I never went back.

Before I was diagnosed with the corn allergy, I was having a lot of trouble with brain fog to the point that I was literally concerned that I was getting a brain tumor or that I had early dementia. I was forgetting the names of people I saw every day and the names for every day objects, or saying the incorrect word for an object. Some days it happened 25-30 times by noon. I went to a neurologist, an audiologist and did a sleep study. Then, being severely unhappy with the neurologist who didn’t listen to me, went to another one, and got sent to have a dementia evaluation. During this time I was told that it was sleep debt from my insomnia and mild sleep apnea. I was prescribed 3-4 different insomnia medications, none of which had the slightest effect. So I decided to discontinue treatment. Guess what? When I went off the corn, the brain fog went away, one of my two types of my insomnia went away, and I’m willing to bet if I ever went through the excruciating process of a sleep study ever again (unlikely in the extreme) that my sleep apnea will have diminished as well. I’ve dropped about 20 pounds or so, and gone down three sizes, without trying to since going off the corn, wheat and chicken after the last round of testing. Since then, every time I’ve been exposed to corn accidentally, I get insomnia that night, and for the next couple of days I lose my words. Sounds like a causal relationship to me. 

The problem with all this, and which will be discussed in greater depth in a future post, is that I cannot depend on my medical professionals to know whether medical issues I’m having are related or not related to food allergies. If they are not related, I cannot depend on them to know how to treat the problem given my food allergies, what’s available under my insurance plan, and what pharmaceutical companies actually make. And with the amount of self-advocating and figuring it out myself I do now, what happens when I really get dementia or can’t communicate, and have to go to the nursing home?  Skydiving, cliff diving or eating fugu in my old age sounds better all the time.

Name Tag MKNow, my allergies aren’t quite as severe as Denise’s, and I’m not allergic to corn or coconut, which are in everything. In some respects, this is great, because I also have ongoing idiopathic (the technical term for “we have no idea why”) vitamin and mineral absorption issues, and the supplements I take are part of what keep me functioning. All the ones Denise and I have looked at together contain corn. ALL of them.

This past winter, one of my doctors did a full vitamin and mineral evaluation, and we discovered some really random deficiencies. It took three tries before we found a B-complex I could take — the first one that she recommended had an ingredient I was allergic to in it — and she’s the one who did that round of testing. I took the second one and got a cold. Or, at least, that’s what it felt like — one of those colds where, you feel fine, and then, sort of suddenly, your head is stuffed, your nose is running, your eyes are glassy and teary. That was a Thursday afternoon, and I called in sick the next day. Weirdly, though, around 5 pm, I started to feel fine. I guess there are 24-hour stomach viruses, so why not a 30-hour cold? Felt fine all weekend: I’d left the supplement on my desk. When I remembered taking it again, it was Tuesday. Same pattern, exactly, except this time I had to leave a meeting because my head was filling with snot. 30 hours later? Fine. To me, it was absolutely an easy call — allergy reaction — and one I had to convince my doctor of. We tried a third B supplement, and this one is fine, but you can bet I read the label about 200 times before taking it.

Our insurance company switched prescription providers this year, and of the three medicines I take, all of which are available in generic forms, this new company provides different generics, and at least one of the three contains milk or a milk-derivative, which is causing minor issues. Again, for clarity’s sake — I do not (probably) have a milk allergy, just severe lactose intolerance. I’ve been taking this drug for three months anyway, because being off of it causes more issues than being on it with milk, and I couldn’t get in to see my doctor until April anyway, to see if there is a way to ask for a generic without milk without getting a DAW (dispense as written) prescription for the non-generic drug which could cost me 70 times more. Yeah, that’s not a typo — it’s the difference between paying $1 and $70.

Milk and wheat are the basis for a lot of fillers used in pharmaceuticals, and there is no requirement that these be clearly labeled, anywhere, nor that pharmacists, prescribing doctors, or nurses have any knowledge of the allergens that may be present in the drugs they prescribe. So even if you think you are safe because your doctor is aware of your allergies, you are not. You need to ask the doctor to check potential allergens (if your doctor won’t or can’t or doesn’t know how, that’s really not great). Then ask the pharmacist again. And go online and check. If you’re on a name-brand drug, checking isn’t too bad; with generics, it can be kind of awful, and worse if the generics can be switched up any time the pharmacy company chooses.

Frankly the vigilance is tiring, and it’s tempting to castigate yourself for every slip. I try to remember how unhelpful that is, but stock it up as a reminder that no one else will advocate for my health the way that I do, partly because no one else has to deal with it when I get sick.

    1. It’s so troubling that people with allergies don’t feel safe in hospitals! Have also been hearing a lot about just how generally unhealthy the food served in hospitals is. Argh! How backwards.
      I’m loving this series, guys. Great info and perspectives.

      1. Yes, the unhealthy food in hospitals is so confusing to me! But then, there is a lot of skepticism in mainstream medicine about how much our food is medicine — it’s not the fix for everything, but it can be a big part of the problem.

    2. How do you even find a list of what else is in medications? I’m finding more and more that medical treatment is dictated by a flow chart, and if it’s not X, Y or Z, they’ll try to convince you it is.

      The one and only time I was in the hospital, they brought me milk, yogurt and pudding to eat – all dairy products. They brought me medications at the wrong time (you don’t give an activating med at bedtime) and brought me ambien as a substitute (I hallucinate). Then they argued with me about taking them to the point I put them in my mouth, swallowed water and spit them out as soon as she left the room.

    3. Not allergy-related but I can relate to the issue of having to be at the mercy of generics. Several years ago I tried to convince a doctor than the generic version of the drug she prescribed was not working as well as the brand-name. She basically said I didn’t know what I was talking about. A couple of years ago an article was published that verified that the generic brand of the drug I was taking was made with a different filler was affecting how the drug was released into the bloodstream! I sometimes wonder if she remembers our conversation. I share the same Rx provider you both have and I get really nervous every time they send tablets with different colors. The information in the news about the manufacturers in India is also nerve-wracking. My worries are about the drug potency. I can’t imagine the additional stress of having to worry about the filler contents.

      1. Ugh. I totally relate. I’ve had more doctors tell me that various painkillers should work in my body and they don’t, and now they are finally recognizing that people react differently to drugs based on their genetic makeup. But we’re the crazy ones until the science catches up with what we already know from our own observations.

    4. Are those medical bracelets any kind of practical solution? They obviously wouldn’t help practitioners know what ‘s in the sheets, but at least it’s something they’re trained(?) to look for and be aware of.

      1. Well, I could except the list of allergens and derivatives that I have to avoid is 336 items long. I can’t just list the main 13-14, because most people, even those in the medical profession, wouldn’t recognize that Carbonmethylcellulose sodium is corn, and Cetearyl Glucoside is coconut, just for an example. I’ve looked into/thought about some sort of USB drive, but I don’t know if that’d be practical either. Not sure I can wear a USB drive around my neck at work, and if I leave it in my purse, it’ll probably get overlooked if I’m in a crash.

        1. Implantable chip? But then they’d have to know about it. The real problem is that doctors and nurses are often unaware of the allergens. This is why celiacs are given crackers after surgery.

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