Defining Your Sensitivity category for our groups. Corn-Lite VS Corn-Free

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In our groups, we are only concerned about your sensitivity when evaluating product safety. If you have no idea what that means, please check out this post here: Grading the severity of your allergy: Sensitivity vs Reaction Level

Why don't we rank Reactivity? Because in the grand scheme of things, it's not that important to your fellow group members. We're all a little selfish and concerned about what matters most to us. Don't worry, you're a little selfish and concerned about the same things.

We all simply want to know how much corn is in a product and if that much corn is enough to cause a reaction for us.

This is where sensitivity comes in.

If Abe states that he reacted to ACME's almond butter, you will want to know a few things about Abe, especially if you like almond butter but also if you happen to be enjoying some ACME almond butter.

You'll want to know:

A.    Just how much corn exposure does it take for Abe to have a reaction.

B.    Is Abe sure it was the almond butter?

C.   (unless you're a sociopath) You might also want to know if Abe is ok.

So, Abe says he's fine but he's certain it was the almond butter.

Now you need to know how sensitive to corn Abe is and how sensitive in comparison you are, so you'll know if you should risk having that almond butter sandwich or not.

Thus, our ranking scale which is based on American/Canadian diets and environments. Food regulations in countries overseas as well as Mexico (even Canada in some cases) are vastly different even on goods imported (imported goods to the US have to abide by at least some of the US standards and thus are often different than the same named products in the originating country) making sensitivity comparisons with people in other countries outside the US is often widely different. 

Our ranking scale is not fool-proof and no one is 100% in any category. Pick the one that best represents your allowable corn avoidance. And by allowable, I mean the amount of corn removal you absolutely have to be at to stay healthy and alive. If you feel you're in-between two categories, when suggesting or recommending something, use the more corny category in your recommendation disclaimer (you don't want to endanger someone else) and when asking people to recommend things use the next category up (for safer recommendations to you).

Corn-Lite: 

We wrote a very long article on what is Corn-lite, you can read it here:  Defining Corn-Lite, and Corn-Free, and all that wordy jazz.

"Corn-lite would be avoiding the major corn ingredients like corn syrup, corn starch, corn meal, etc.. and trying to avoid as much citric acid and ascorbic acid as possible.  Basically, eating lots of fresh veggies, meats, and home baked goods."

Corn-lite not only removes obviously “corn” named ingredients but also anything labeled where the source has not been confirmed to be something else: starch, modified starch, glucose syrup, fructose syrup, baking powder, grits, maize, zea mays, zein, iodized salt, dextrose, fructose, glucose.

This does not include just foods, but all products.

For the most part, a corn-lite lifestyle is full of reading labels and buying specific brands of foods. Focusing most meals on fresh produce and simple ingredients to cook at home.

Restaurants: If they are very careful, they can occasionally eat out.

****If you can safely eat any of the items listed for removal for "Corn-Lite", please do not recommend products in the group. Your sensitivity category would be "Corny" and while you may benefit from asking questions and other's recommendations, your sensitivity is not high enough for you to make safe recommendations within the group.*****

Corn-Moderate:

The term corn-moderate may be used by anyone who needs to remove more corn than corn-lite, whom also meets the following requirements:

A person's sensitivity category may be deemed corn-moderate if they have to avoid ALL corn derivatives and cannot source many of their groceries through a grocery store.

Produce: They may be able to tolerate a couple items but most produce must be found through alternative sources.

Meats: Most plain unseasoned meats at the grocery store are unsafe for them and will cause a reaction. (If you're still able to eat seasoned meats, hotdogs, lunchmeats, you are still corn-lite.) They may be able to do one meat source found at a grocery store, likely a particular product from a particular store. Most moderates special order at least some meat (possibly even all) from trusted farmers that have been vetted for safety.

Water: They cannot tolerate tap water. Water must be filtered.

Ingredient labels of the products they do buy list no more than 5 ingredients, and they make almost all their snacks/foods from scratch at home.

This doesn't include just foods, but all products.

Restaurants are nightmares.

*** If you are new to our groups, you should stick to the disclaimer of corn-lite on all your recommendations until you've had a chance to read all the literature and get a good feel for the group. Probably 6 months.***

Corn-Extreme:

I just decided to make this one up for our very few members which would qualify for this. Since the term "corn-free" is banned from us in our groups, our members the most extreme about corn removal may use this term. And by "extreme" I mean, they do this because they have to in order to stay alive and well. Corn-Extreme is as close to corn-free as is humanly possible. Not comfortably possible. Not semi-socially awkwardly possible. Not "in modern times" possible. But in all things.. ALL THINGS.. as corn-free as it is possible BECAUSE it's medically necessary.

If you use this term and you are NOT one of the very few members who qualify for this title, you will be - no questions asked - booted from the groups. If this title sounds like it might be you, but you can think of someone more extremely limited than you are, you probably are still moderate.

*If you feel this label is right for you, do not use it unless: 1. You've been a member of the group for more than one year. 2. You've joined Level 2 and you've been cleared with the Admin for use of this label.*

Our corn-extreme members barely remember what grocery stores are, and definitely don't buy anything more than an item or two.. and likely only for family members. 

Our corn-extreme members inhabit the spirit of living like it's 1899 in all its wondrous glory. They make the ingredients their ingredients are made of, always, including almost all of their spices.

They also research everything that goes into their mouths down to the very last detail.  They have talked to the customer service, owner, foreman, and line personnel. They talk to the guy that supplies the products to the guy they're buying the end product from. They trust nothing and no one. 

They buy meats from special deals with farmers and processors, eliminating corn-fed animals, carcass washes, processing aids, packaging issues, and often with the farmer or processor agreeing to do something different than they normally do. They buy only no-spray produce from trusted farmers, if they can't grow it themselves. They send Holiday gifts to their farmers and know them like family.

Almost nothing they buy has an ingredient label, and they're looking into buying farmland and already raise chickens. They also know or are learning how to "dress" an animal, and it has nothing to do with lace. 

Their kitchen is outfitted with awesome tools like meat grinders, slicers, grain mills, dehydrators, a wide variety of knives (all sharp). 

Their water is extremely filtered, and they probably have their own distiller. They likely only have one water source that is tolerated. 

There is a legitimate fear of starvation should any one of their suppliers change a product they use or go out of business.

They actually have a hazmat suit for staying safe outdoors. 

They're pretty sure they remember what restaurants are, but it's been so long it seems like another lifetime ago. 

*****Please, understand there is no social hierarchy or shame with any category of corn sensitivity. It is most honorable and safe for others for you to accurately state your sensitivity, and with accuracy comes respect and trust of your fellow members.****** 

Lets Get Complicated!

You thought we were done.. we're not. We know you still have questions, and we'll try to answer them.

While most of the categories above were described as foods, there's more to the story. 

There are three main areas of sensitivity:

A.    Ingestion (eating, swallowing)

B.    Airborne (breathing, inhaling)

C.   Skin Contact (direct contact with skin, touching)

It is completely possible to have one category of avoidance for one of the above areas, but another category for the other areas. Or to have a different categories of avoidance for all three areas.

Bodies are weird!

This means that while you may eat "Corn-Lite", when looking for lotion recommendations you may more accurately need to use the label of "Corn-Moderate" if you're more contact sensitive than the corn-lite category would fit.  Or if you're not contact sensitive at all, but you have to wear a mask often due to corny scents or ethanol fumes or whatever.. you may want to use "corn-moderate" when asking for air freshener ideas. 

Please use the best fitting label depending on the topic and product being discussed. If you can't decide between two categories, use the lower or more corny category.

*****Please, understand there is no social hierarchy or shame with any category of corn sensitivity. It is most honorable and safe for others for you to accurately state your sensitivity, and with accuracy comes respect and trust of your fellow members.****** 

Related definitions:

Corn light

Corn-Medium: A person who utilizes metaphysical methods to devine whether or not something has corn in it. This would make for an awesome Halloween costume.

Corn light

Corn-light: a particular type of bulb that looks like corn on the cob, may also be used for a corn shaped lamp.

Company's Corn-Free Claims - Why you can't trust it.

I hear often, especially in regards to our Corn-Free List, that the company says it's corn-free so it's corn-free.

Corn-free means a lot of different things to different people. If you ask an every day normal by-stander if their hamburger is corn-free, they'll tell you yes. They're looking for corn kernels, and since there are none it is corn-free.  A few might say that they don't know thinking there may be corn syrup or corn starch in the bun or condiments.

This is not sufficiently corn-free for the corn allergic.

A letter posted on a Delphi-Member's site from the University of Nebraska - The Food Allergy Research & Resource Program, which is often asked to test foods for proteins so companies can make "-free" claims, had this to say about corn-free claims in the USA:

"...in the U.S., there is no regulatory definition for terms such as corn-free on product labels.  Thus, companies can establish their own definitions and there can be considerable variability.  Obviously that is not a desirable situation as such terms can sometimes be quite misleading."

This is very truly the case with corn-free labels on packaging as it's been tested by corn allergic human subjects, sometimes successfully and sometimes disastrously.  It's hit and miss, which is why we require human-testing for any product that we suspect to be corny or that would be high risk.  As much as we'd love to, we cannot just take a company's word for corn-free status.

This doesn't mean you shouldn't contact companies though. As companies can confirm for you that something definitely is corn, which can save you from trying it out. It simply means that even though a company has said "Yes this is corn-free" you should still use caution until you've tested it yourself.

As I've posted once before, we don't believe that companies are using false corn-free claims in order to do harm, but merely that they lack understanding of what constitutes corn-free and/or that their suppliers are not well informed.

University of Nebraska - The Food Allergy Research & Resource Program "does not have an analytical method to test for corn so we would certainly not have performed any testing for corn." So if you see FARRP mentioned as the source for their corn-free claim, please notify the FARRP organization at UNL (here).

Please also keep in mind that tests for "-free" claims do allow a certain amount of proteins to be present (parts per million - ppm) so if it's made from corn, and claimed that the corn is processed out of it, there still could be a protein left (your allergy may not even be protein based, but that's another story).

Avoiding corn in the bedroom: Corn-free gets sexy

We're having a good and much needed discussion about sex, corn, and allergic reactions on our favorite forum, Delphi Avoiding Corn: "Condoms and STD Protection?" and we'd love to get as much user-tested information as possible.

Since most pills do contain corn, finding a good contraceptive can be difficult, plus trying to be safe by protecting yourself from diseases just adds to the fun of this allergy.

We firmly believe in living a full and happy corn-free life, and this is one area with a lot of pitfalls. (The last thing anyone needs during those intimate times is a life or death health episode. For some reason that  tends to ruin the mood.)

We're also discussing kissing as the exchange of any bodily fluids can put you at risk of an allergic reaction if the other person eats your allergens.

So please, come join the discussion and share your experiences. (Registration is free)

Tis the season for love and sharing. Right? :)

(We'll be using any information shared to help improve our corn-free products list in this much needed area.)

Getting Medications Compounded

Since most medications contain corn derivatives, most of us with sensitive corn allergies have had to resort to getting medications compounded special for us. Medications as simple as Benadryl, Tylenol, Sudafed, Ibuprophen.. to complicated medications to aid or cure certain conditions or diseases. We often find that we need to have them made from scratch especially formulated for our allergy concerns.

Even if the medication you want is generally OTC (like Benadryl or Tylenol), you will still need to have a doctor's prescription to get it filled at a compounding pharmacy.

Some doctors aren't willing to do this, and will try to tell you that "a little bit of corn starch won't hurt you". But it can, and most likely will. If your doctor is one of these, please find a new doctor. Nothing is more dangerous than a doctor who does not take your extremely valid, potentially deadly condition seriously.

Getting a medication compounded, even once you find a willing doctor, can be a little tricky.

Each compounding pharmacy is a little different. Some pharmacies will do compounding, but their compounding experience is merely crushing up the pills to mix together into a salve, or crushing up an adult dose medication into one suitable for a child. These pharmacies are NOT where you want to have your prescription filled.

What you're looking for is a pharmacy that primarily does compounding. To locate a potential pharmacy for this please visit International Academy of Compounding Pharmacists and search for a pharmacy near you under the "Compounder Connect" button on the side. This will give you a good place to start.

Once you've found a potential compounding pharmacy, you're going to want to ask them some questions before you get anything filled there. You'll want to talk to an actual pharmacist or the person who will actually be making your medications, so be sure to call ahead or visit during a slow time (usually mid-morning, mid-afternoon, or late night) to make sure they can give you their full attention. Bring with you a copy of the Corn Allergen List and what medications you'd like to have compounded.

Not every medication is able to be compounded corn-free. Newer medications still under their original patents (aka those new meds on commercials) will not be able to be compounded corn-free. However, there are quite a few medications that can be compounded corn-free.

When talking to your potential new pharmacist, do make sure to ask if they compound medications from the pure powders and not from crushed pills. Be careful to explain to them that you cannot take the premade pills, and would need them to obtain a pure powder that does not contain any corn derivatives (this is where the list comes in handy).

Once you've gotten this far, and they're willing and able to get the pure powders to formulate your medications for you, you'll need to inquire about fillers. Fillers are what is mixed with the pure medication in order to get it in a dosable form. IE: taking a nano-gram speck of a medication is not sensible for you, or them. So they mix the medication (dilute) with fillers to make it easier to measure and dose.

You can get medications compounded into liquid form, or put into capsules. Both have some risk of containing corn, but capsules are a little easier to get corn-free than liquid.

With liquid medications, pharmacists will want to add flavorings and sweeteners to make it tolerable to swallow. Most of the flavorings or sweeteners will contain some form of corn. Some mothers have reported being able to get the liquid unflavored and unsweetened, and mix a dose at home with a homemade sugar syrup or in applesauce. Do keep in mind that liquid is not always very portable, and usually needs to be kept refrigerated. It also tends to expire quicker.

Capsules are easier, and the filler is generally just a simple powder. You will need to double check the source of the capsule to make sure it isn't corny. Most pharmacists will work with you on this, as well as with the filler. Lactose and corn starch are the two they generally work with, but most will allow you to bring in a safe starch for use with your pills (tapioca, potato, arrowroot, etc). Compounded capsules usually expire 6-12 months from date of fill, and are easily portable - just like any other pill. Some mothers get medications this way, open the capsule into a safe applesauce or similar to give to children.

Talk to the pharmacist about these options, and decide which way you'd like to go, and the risks of each. Make sure to ask about the ingredients and investigate each and every filler they may want to use. Write down for future reference what they can and cannot use with your scripts as you may need to give them a copy of this information with each fill. A good pharmacy will keep this info on record, but you can never be too careful.

Compounding medications also costs quite a bit more. It can be quite time consuming for pharmacists and their staff to make each pill (often by hand), so there are reasons for its price. Though for most of us who have experienced compounded vs corny pills, the compounded ones are priceless. :)

Costs of compounding are different for each pharmacy you use. I've heard of compounding costing from $1-$3 per pill. Some pharmacies give you a price break for quantity, in which the more pills you get per fill, the less cost per pill it is. You'll want to discuss this with the pharmacist as well.

Most insurances do not cover compounded medications. So make sure to call your insurance and find out what their coverage is. Some compounding pharmacies will submit your claims for you, some will not. You may have to manually submit your claims yourself. Most insurances that do cover compounded medications will only cover it at the highest cost copay on your plan.

Once you've figured out where you can get your medications, and which medications you can obtain through compounding.. It's time to get your scripts written.

Many doctors, even if they're willing, don't have a clue on how to write a compounded prescription. Most compounding pharmacies are used to this and will call the doctor with any info they need or if they have a question. But the following are the "usual" on what needs to be said in a compounded script:

Drug Name: avoid brand names. Doctor should write diphenhydramine not Benadryl, or acetaminophen not Tylenol. It may be allowable to write "Generic Benadryl" or the equivalent in some states.

Strength: milligrams or grams needed.

Dosage: How many and how often to take them.

Quantity: How much to give you.

For example: Diphenhydramine 25mg, 1-2 every 6 hours as needed. quantity: 60 25mg capsules.

It's best to have your doctor add (especially if the pharmacy you're working with is in any way belligerent) "Formulate corn-free" or "Corn-free" on the script. This will give you a little more leverage with the pharmacy, and some pharmacies may require this wording - so ask the pharmacy before you get the script.

Once all this is done, you'll need to double check when you drop off the script or remind them of your previous discussions and what is safe for you. When you come back to pick up the prescription, you'll need to also double check on what was used in your medication. As you and your compounded pharmacy get better acquainted through future fillings, you may not have to be quite so rigorous in double checking everything, but its worth it to be extra careful.

*******

Update 9/2013 - Some "compounding" pharmacies are not pure compounding pharmacies. If your pharmacy orders their compounding products from McKesson, then change to a pharmacy that doesn't. McKesson supplies regular pharmacies and is a distributor. Their supplies of "pure" powders for compounding often contain corn derivatives and aren't pure. A "compounding" pharmacy that orders from McKesson is not a pharmacy that regularly does compounding and will likely not be able to make what you need corn-free.

There are other suppliers of compounding powders which do not have the added corn such as PCCA or Letco, and likely a few others.  So make sure to ask where they're purchasing their supplies from.