The Water Post

Help! I’m Reacting to Water???!

This is a message I’ve gotten a few times, and I haven’t had a very complete response to it to date because I haven’t been able to solve the problem for myself. And now that I have it mostly solved, I still don’t have any clear explanation for the phenomenon or any guaranteed solutions for anyone. Just some suggestions.  But here is literally everything I know about and have tried re: finding safe water to drink when you have corn allergy, chemical sensitivity, or a mast cell disorder.

I am making many claims below that need elaboration or references. I will come back and add details and links as I have time, but I thought it was important to just do a brain dump ASAP because there are people who need this info that currently don’t have safe water.

tl;dr – The Short Version

If you are allergic to corn and are reacting to your water,  DO NOT DRINK Dasani or Aquafina. These are KNOWN to contain corn derivatives in the form of “added minerals” and/or the bottles are made from corn plastic.

Try  buying Crystal Geyser Alpine Spring brand  (owned by CG Roxane) bottled water before you try anything else. It is cheap and easily attainable in many areas at drugstores, grocery stores, dollar stores, liquidation stores, etc.  There are several spring sources and not all of them work for everyone, and also there are still people who cannot tolerate this water.  If that doesn’t work, begin trialing: Fiji, Starbucks Ethos brand, Voss in glass bottles, Poland Springs. Also join the Facebook Corn Allergy and Intolerance group, because you are going to need some real-time group support getting this figured out.

Where’s the Corn  (or other allergens) in Water?

Quite honestly, I do not know why precisely water is such a problem for corn allergy folks.  It definitely is but I really can’t provide a lot of clear physiological explanation for why that would be. It is true that some corn derivatives may be used in water treatment, and that mineral fortification treatments may have corn-based excipients in them. However the degree to which we see water issues really outpaces what could be explained by that,  in my observation.
I think it is likely an issue with multiple sensitivities and the intersection of mast cell activation disorders that causes the issue. And the result of that is that there is no universally tolerated water, and there are several folks  within my online social circles at any given point in time who are not completely tolerating *any* water.

Here are the things that I have observed can be problems for myself and others with corn allergy and/or mast cell activation disorders:

Bottles: Glass Sanitizers

Antimicrobials seem to be a huge trigger for corn allergy folks as well as MCAD folks. No-rinse bottle sanitizer products can contain corn derivatives and even corn starch when they are the drop-in tablet form.

Bottles: Glass Mold Release/Coatings

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Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra

May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.

eds awareness

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.

The type I have is Hypermobility Type, which is the most common type. And actually “rare disease” is a misnomer since it is estimated that 1 in 5000 people have this particular type. It’s more that it’s rarely diagnosed.

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Hospital and Medical Safety With a Corn Allergy

Updated 2/21/2017

I’ve written a bit about how to stay safe in emergency situations, but not about longer hospital stays and planned surgeries. There’s no possible way for me to cover every possibility, so the best way to stay safe in a medical context is to familiarize yourself with where corn hides in medical supplies, in food, and in medications, and familiarize yourself with the list of ingredients commonly derived from corn and if possible train a family member or loved one on these things so that they can help advocate for you.

Here are just a few suggestions for staying safe in a hospital setting. This document is very much work-in-progress, but I feel it’s important to share as much as I can think of  as soon as I have time to rather than continue waiting until I have time to be complete.

Create an Advance Healthcare Directive

If you are an adult, and you are conscious and of sound mind, you legally should always (to my knowledge) have control of your medical care (or the medical care of your dependent child). However if you are unconscious, or are deemed not to be of sound mind, someone else can (and will) make decisions regarding your care for you (or your dependent). Claiming to have adverse reactions to such commonplace ingredients such as citric acid and dextrose, or displaying fear of just about any and every medication, can seem like paranoia to physicians. It unfortunately HAS happened that those with corn allergies have been treated with psych medication instead of antihistamines, or been given medication that they had severe reactions to while they were unconscious or unable to advocate for themselves.

There is no way to guarantee that this won’t happen, but creating an advance healthcare directive, or living will, can help. Here’s more info on how to do that. What you put in that advance directive will be individual. Please do this as soon as you are able and well ahead of any planned procedures, and work with your team of medical professionals as well as your trusted corn allergy resources on the correct content.

Have a Plan for When You’re Out of Options

It will often happen that some condition will require using a product or medication you may react to. Antibiotics are a common one where there really is just no 100% corn free option since they are pretty much all grown on a corn sugar medium. If you need a medication or procedure, and you can’t find corn free options, or you don’t have time to negotiate every single detail, the absolute best thing you can do is pre-medicate. Work with your doctor to come up with what should be done to prevent severe reactions or anaphylaxis in these cases, and put that in your advance directive. For me, that would be iv  benadryl ( diphenhydramine hcl, hospira brand is safest for me), iv zantac (ranitidine hcl – this is a histamine-2 inhibitor and increases the effectiveness of the benadryl, I don’t have a preferred brand identified), and solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol).

Wear A Mask

If you are airborne reactive this is a must. If you are not usually airborne reactive, have a mask anyway, because it is likely you will be so bombarded with allergens in the hospital that you may become airborne reactive where you usually aren’t. You can find out what masks I use on my product list page.

Cook Ahead

If you have a corn allergy, it’s highly unlikely that you will be able to eat any hospital food, even if they swear they can cook you something corn-free. Most people, not even medical staff, just cannot understand what “corn free” is to the degree that we have to avoid it. If you know you are going to have be inpatient, cook yourself enough meals in advance to cover your planned stay and then some, and keep it in the freezer. If you don’t have a lot of freer space, consider investing in a separate freezer. Even in an apartment it’s likely you can make room for at least a small freezer. You can likely create some vertical storage shelving above it to reclaim some of that space. (I originally said you can store stuff on top of it, and then found a TON of manufacturer advice not to do that because it interferes with venting!)  If money is a concern, you should be able to find used freezers on craigslist, although you’ll possibly need to do some work to decontaminate it since it may have had unsafe food in it. (I realize that *any* money is still money that many of us don’t have, and I totally understand and sympathize- I’m just making my ideal-world recommendations.)

As far as what to cook ahead, that depends on your preferences and safe foods. I honestly haven’t found too many things that I eat that don’t freeze and reheat well, maybe cooked eggs (which I personally am allergic to) and some types of dairy products such as cream and un-melted cheeses may get gross. When cooking for hospital visits, probably go with things that are easy to chew and somewhat bland as if you aren’t feeling well you may not enjoy chewing or spicy items, and even consider freezing or canning (more on corn-free canning here) some plain bone or meat broth in case you’re feeling too ill to tolerate anything else. I try to keep bland soups. baby-food style meat purees, broth, and fruit purees on hand for illness or a possible hospitalization.

You will need to get permission from the hospital to bring your own food. Be polite but firm about this- it’s not optional. You will also need to arrange for a place to keep frozen food and a way to reheat it.

Pack Ahead

Create a “hospital bag” (or in my case a suitcase) that contains everything you need for a hospital stay. The exact contents will depend very much on your sensitivity and needs, but I would err on the side of over-preparing, as you may find that in a hospital context, your reactivity and sensitivity ratchets up quite a bit.

Here is what is in my hospital bag:

  • 3x Twin Sheet Sets (I will react to the laundry detergents used by the hospital so need to bring my own clean bedding)
  • 3x spare twin fitted sheets (You may sweat, bleed, or otherwise soil the sheets in a hospital context, so bring spares!)
  • 2x Vog n99 Carbon Filter mask
  • 2x Extra mask filters (I use I Can Breathe  removable filters inside my vog mask to “double up” and help protect from airborne reactions better.)
  • 4x hospital gowns (washed in my safe detergent)
  • 4x hospital socks (“hospital socks” refers to the kind with the treads on the bottom so you can’t slip)
  • 2x allergen pillow cover
  • 2x blanket
  • 3x panties (probably I could stand to have more, who knows how long I’ll be in there)
  • 6x cloth menstrual pad
  • 3x cotton lined waterproof mattress pads (mostly for sweat, I hope, but who knows!)
  • Towels, washcloths
  • body soap/dish soap
  • baking soda (For brushing teeth, washing hands, cleaning “whatever” – I use Karlin’s Finest)
  • shea butter (dry skin or lips, NOW brand is safe for me)
  • jojoba oil (dry skin or lips, NOW brand is safe for me)
  • hand soap in pump bottle (this is largely for setting in the room for nurses and visitors to use instead of the corny stuff)
  • phone charger (with a nice long cord so you can use it from bed while still plugged in)
  • coban tape
  • t-shirt sleeve for under pressure cuff (many react to the sanitizers used on the cuffs between patients)
  • Safe plate, bowl, spoon
  • HEPA filter (run in your room constantly and request the door be kept closed)
  • plastic tub to use as a dish washbasin
  • Safe water filter or safe bottled water (many corn allergics react to tap water or certain brands of bottled water such as Dasani)
  • safe sippy cup  with straw (if you’re sick you’ll spill- heck, I spill when not sick. I use a mason jar with a silicone koozie, a plastic sippy lid, and silicone straws)

Laminated Signs

At shift changes, nurses don’t always carefully read every patients’ chart, and may mix up and forget individual patients’ needs. Hang signs anywhere there is a hazard for you to help reduce the chance of them doing something that will make you react. I have a home laminator and have pre-printed laminated signs in my bag. You can certainly use neatly hand-written signs though. But better to come up with what you need in advance than scramble while sick/injured.

  • No HAND sanitizer sign for front door
  • Keep Door Closed sign for door
  • Mop Floors with Water Only sign (consider getting translated into some commonly spoken local languages in case the cleaning staff do not read english well)
  • small do not use signs for hand soap & sanitizer
  • NO DEXTROSE NO GLUCOSE NO CITRIC ACID NO LACTIC ACID sign for iv pole

 

More Resources/Links

ER Safety with a Corn Allergy

ER Protocol for Mobile Devices

List of Commonly Corn Derived Ingredients (Corn Allergens List)

Hidden Corn – Medical Supplies

Hidden Corn – Food

 

What My Winter Prep Looks Like

I can only eat food from a few specific farmers so I have to put up what is growing when it’s growing if I want to eat in the winter. You can learn about why this is by skimming through my Hidden Corn laundry list  and reading some of my corn-tamination posts on individual foods. Because of other allergies, my “lockdown season” has been from November until June. One of my farmer-mommies began planting some winter crops I could eat so my lockdown is now from about January to June.

People frequently want to know what it looks like when you can’t just run out and buy food for half the year, so I took these pictures. What I have put up I will probably eat about 60-70% of this year, to myself. The large volume is mostly because I can’t eat any grains or starches due to not having safe sources. Corn is my anaphylactic and most sensitive allergy but I am also allergic to eggs, soy, and dozens of vegetables including all of the ones that grow in cold weather such as broccoli and cabbage.
PLEASE NOTE that the mason jar lids shown here are NOT safe for canning for most and may not be safe for frozen or dried storage for many. The BPA free canning lids from Ball and Kerr contain a resin that contains some corn. I personally can jar things with them but cannot have stuff that was canned (boiled in hot water for a long time) with them.

All of my preserved food is frozen or dehydrated because in addition to the Ball/Kerr canning lids containing a corny resin, I also do not seem to tolerate the Tattler canning lids. Not sure if this is a corn issue or not. I have not yet tried the Weck jars although I will eventually. More (but not enough) on corn-free canning here.

ANOTHER NOTE for people buying freezers- you want MANUAL DEFROST for any long term storage. “Frost Free” freezers are dehumidifiers which will eventually freeze dry your meat if it is not in a 100% airtight seal. My safe meat packaging is ziplocks, so those are not true hermetic seals at all.  I also observe, although the internet at large contradicts me, that frost free freezers contribute to MUCH faster freezer burn in all of my food.  I have meat in my manual defrost freezer from well over a year ago that is still totally fine, and it wouldn’t last nearly that long in a frost free freezer.

 

 

Clockwise from upper left:

  1. Dry storage & lactoferments: home dried & ground paprika, dried tomatoes, dried sweet & hot peppers, dried tomatoes, celery, more dried tomatoes, spicy pickled cucumbers & ancho peppers on to ferment still.
  2. 20 cubic foot upright freezer #1: Jars upon jars of fruit purees, tomato sauce, foodsaver vacuum-sealed bags of green veggies, pear sauce, a LOT of peaches, frozen grapes, and berries.
  3. 20 cubic foot upright freezer #2: Cucumber juice (yes really), more tomato sauce, fruit purees, more peaches, berries, and some pecans I never got around to shelling because they are a pain in the rear.
  4. 20 cubic foot chest freezer: These really are the best for fitting way more than the same cubic foot in an upright, not accidentally leaving open slightly & losing a bunch of food, and not building up with frost as quickly. However omg keeping them organized. I used the inserts that come with the freezer for the bottom part and then stacked these sterilite bins on top so i can easily remove the bins and see what’s below. best I can do for organizing.
  5. 4.4 Cubic Foot “all fridge” minifridge. This is my backstock mini-fridge. I unplug it when I don’t  need to store more produce than my regular fridge can hold. At the time of this picture it contains cucumbers I need to process still, and pickled veggies that are done fermenting.

How the Soaring Prices of Epipens Are Affecting Our Safety

There’s been a lot of buzz lately about the excessively high prices of the brand name Epipen autoinjector. In 2007, a single brand-name autoinjector was $50, and now it’s $300. And that’s just the wholesale price to the pharmacy. I’ve seen reports of pharmacies almost doubling that price and billing patients $1200 or more for a twin-pack.

You don’t need me to tell you that this price hike is unnecessary and unethical.

The medicine inside of the injector is about $1 per dose, but it’s not really the epi you’re paying for- it’s the delivery device. That however can’t possibly cost even close to $300 per pen, which is the minimum wholesale cost to pharmacies. (The pens only come in a twin-pack and should always be carried in pairs.) Obviously if at one time the price was only $50, the pens must cost some amount less than $50 to manufacture. I can understand that manufacturing costs rise over time, but I sincerely doubt that they rose by 600 percent. This is price gouging. It is unethical profit maximization at the expense of people–CHILDREN–who NEED the medication to stay ALIVE.

The “Low Cost” Alternatives Are NOT Safe Alternatives

Yes, it is THIS SPECIFIC medication and delivery device that we–and our allergic children and loved ones–need. This point is important enough to warrant its own post: In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector, and the syringe based auto injectors are NOT an appropriate sub for a cartridge based autoinjector!

  1. For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
  2. Even if you are practiced at drawing and injecting, if you have having even a moderate reaction you may be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is almost always out of the question.
  3. The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi.
  4.  Syringe based solutions, either manual or auto injection, cannot be used through clothing. Clothing must be removed or cut away, costing seconds that could be the difference between life and death.

The $0 Copay Card is Not a Solution

In response to the uproar over the increased Epipen pricing, Mylan announced they would “halve” the cost Firstly, the $0 copay card never was $0 copay. It was up to $100 off a twinpack, which would only be $0 if your copy was $100 or less. Secondly, it could not be used by anyone who didn’t have insurance, or who had Medicare/Medicaid. Thirdly, it was not legal in every state. In response to the outrage, Mylan raised the value of their coupon to $300, and that STILL isn’t good enough: Assuming you were even eligible to use the card, *someone* would be paying up to $300 for your epipen. If not you, then your insurance company.

Here is an article on WebMD about why the coupon isn’t truly saving us money.

The Generic Option is STILL Too Expensive

Back in February of this year, the only product comparable in ease of use to the Epipen, the Auvi-Q, was recalled due to potential dosage delivery issues. In April, it was announced that a new company would begin working on the delivery issues and try to put the Auvi Q back on the market. A few months later, Mylan hiked the price of their brand name product up by double.

Only three weeks after *that* Mylan announced release of their generic,  with a wholesale cost of $300, which is the same as the Epipen brand name before the price increase.  News rticles made it sound like the generic release was in response to the public outcry, but if it were reactionary and not planned, there is NO WAY they would have it ready to go only 3 weeks after the price hikes. They obviously anticipated the outcry and planned ahead how to respond.

To Put it Bluntly: This is F***ing Garbage

This was obviously planned, and obviously an attempt to maintain their profit margins in the face of possible competition. As I already said, it is price-gouging, and the victims are disabled people, and disabled CHILDREN.

I’ll spare you the detailed conspiracy theories. I’m not a journalist, just an allergy and chronic illness patient who’s trying to share some information with her fellow patients. I’ll link to a few articles with lots of information. Draw your own conclusions.

NPR: EpiPen’s Dominance Driven By Competitors’ Stumbles And Tragic Deaths

Chicago Tribune: How Mylan, the EpiPen company, maneuvered to create a virtual monopoly

Bloomberg: How EpiPen’s Price
Rose and Rose

Forbes: Why Did Mylan Hike EpiPen Prices 400%? Because They Could

 

Back To the Point: Do Not Risk Your Life on Low Cost Alternatives

Please, if have any other options, do not try to save money on an alternative to the Epipen that will put you or your loved ones’ life in danger. If you don’t have any other options and truly cannot afford an autoinjector that you *know* will deliver the correct dosage of the meds and that you can use reliably and correctly in an emergency, please ask for help affording one. If no one can help you, please, please, please tell me, tell the news station, tell everyone you can about it. I know that this doesn’t help you right now, but the more people hear about situations where people are literally risking their lives because they can’t afford life-saving medication, hopefully the more pressure Mylan will feel to correct their problems, and the more demand other companies will see for a functional and safe alternative.

Currently Available Low-Cost Epipen Alternatives Are NOT Safe!

 

In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector.

Additionally, the syringe based auto injectors such as Adrenaclick are NOT an ideal sub for a cartridge based autoinjector!

A cartridge-based autoinjector is the SAFEST and most SURE way to save lives in an anaphylactic emergency, and carrying anything else could cost even more lives. As it is, fewer than half of patients in a 2015 study were able to correctly administer epiniphrine using the brand-name autoinjector.

  1. For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
  2. If you have having even a moderate reaction you will be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is out of the question.
  3. The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi.  The adrenaclick delivers only 25.7% of intended dose while the Epipen cartridge-based injector delivers 74.3%.
  4. Syringe based solutions, either manual or auto injection, cannot reliably be used through clothing. Thick clothing such as denim will bend the needle and must be removed or cut away, costing seconds that could be the difference between life and death.

Related posts:
MastAttack: No, using the manual syringe/vial method is NOT the same as using an epinephrine autoinjector

SciBabe: WHY YOU SHOULDN’T USE THIS METHOD TO SAVE MONEY ON THE EPIPEN

Sick of Being Sick: Letter from a Reader

Following is a letter from Travis that I feel is an all too common story. I’ve pasted his entire letter below with his permission, but the summary is that he has finally figured out that food is at least part of what is making him feel so sick, however he’s feeling overwhelmed and frustrated in trying to figure out WHICH foods, and how to eliminate them without starving.  My lengthy response is also below. Spoiler: I can’t really tell him what to do, but I can offer some direction on how to figure it out.

Hi Corn Allergy Girl,

I feel weird calling you that but I don’t actually know your name. Since I was about 10 years old I’ve always felt sick experiencing symptoms that have affected nearly every functioning piece of my body. It started out with just the and swelling of the joints in which I would take an over-the-counter NSAID of some sort and later, see my doctor in which he would denounce as growing pains. Sometimes the pains were so intense I’d start bawling because my shoulder or knee were throbbing and there wasn’t a pain reliever on or off the market that would touch the pain. At thirteen the symptoms spread to my stomach. A lot of things I consumed would hurt my stomach sometimes leaving me in the fetal position in so much pain. Later on, I’m diagnosed with an infection known as h. pylori found by a colonoscopy. The doctor treats me for it and my stomach doesn’t hurt as bad for a while. When we go back for a reevaluation I tell her my symptoms are still present but she says the ailment probably left me with Irritable bowel syndrome so I accept that.

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