Allergies, Autoimmune, Histamine Intolerance, MCAD/MCAS, Mastocytosis, IgE... What is going on?

In our groups we welcome anyone who needs or wants to avoid corn. That's our primary goal. Avoiding corn. 

And as most of you know, that's easier said than done. 

Within our groups, you'll find people avoiding corn for many different medical reasons and sometimes people get confused on cart vs horse or unicorn or zebra. 

So we're going to try to write up something simplistic to help clarify the different conditions and diagnosis as best we can. Even medicine sometimes changes their minds on how things work so this is confusing for many. 

Let's start with the basics of how the immune system works with allergies and autoimmunity.

The body produces IgE in response to what it considers the enemy. These are specifically programmed to detect the presence of that enemy. They attach themselves to mast cells. When the enemy is present, the mast cell degranulates giving off multiple substances to help the body fight the enemy. 

Some of the items released from Mast Cell Degranulation are:
Histamine
Tryptase
Heparin
Prostaglandins

Leukotrienes

Kinins

Serotonin 

Serine proteases

How much of which and how many and whatnot.. that is very individual and can differ based on the "enemy" detected.

So with the same "enemy" -  Person A might just have bunch of histamine, some tryptase maybe.. Person B might have a little histamine, a bunch of heparin, tons of leukotrienes. 

 Meanwhile with different "enemies", Person A might have a ton of histamine with one, and almost no histamine with another. 

Our bodies even with similar diagnosis will always present differently because of the many many ways our systems work differently. 

And some of the ways our bodies work different are based on set DNA, and sometimes based on epigenetic changes in our bodies. Just to add more to the pile of confusion.

MCAD/MCAS & Mastocytosis:

Unlike allergies, Mast Cell Activation Disorders (MCAD) are immune adjacent and do not require immunoglobulins (IgE, IgG, IgA, etc) for mast cell degranulation. 

In the image above, you notice that IgE attaches to the mast cell and then the mast cell degranulates when in contact with the enemy.  

In MCAD, this step is skipped. The mast cell is highly volitile all on it's own and degranulates for various reasons and with various enemies. 

In the process of diagnosing MCAD, many diseases and conditions must be ruled out first, and one of those is allergies. IgE tests are done to make sure the reactions the person is experiencing is not a normal immune response. 

Now it is possible to have MCAD and allergies, but MCAD is only indicated IF the reactions cannot be explained by IgE involvement (or any other disease).

Histamine Intolerance:

Intolerance is bandied about a lot in our groups and covers pretty much anything that isn't proven as an IgE allergy.  

However, true histamine intolerance is more akin to lactose intolerance than anything else. 

In lactose intolerance, the body doesn't make the right enzymes to break down lactose so the body cannot digest it. And so it wreaks havoc. 

Same goes for true histamine intolerance. 

The body has two main enzymes for breaking down and removing histamines from the body.

Histamines are a normal body process. They're naturally created during eating and help with digestion among other uses.

The problem comes in when the body can't remove them fast enough. In reactions, this is because the flood of created histamine (released histamines from mast cells) is way more than the body can remove. 

But for people with histamine intolerance, this can happen for a multitude of reasons because their bodies either don't produce enough enzymes to break down histamine or they produce faulty enzymes. So even small amounts of histamine cause histamine buildup and they see a histamine reaction. 

People with IgE or MCAD can also have histamine intolerance to complicate matters as the combination only makes it all worse.  

But having Histamine Intolerance does not mean you will have allergies nor does it indicate that you have a mast cell issue.

Corn Allergen List

This list was originally posted on Jenny Connor's website, which she recently took down. We are working on an updated list, but now this should be sufficient.

Acetic acid

Alcohol

Allulose

Alpha tocopherol

Artificial flavorings

Artificial sweeteners

Ascorbates

Ascorbic acid

Astaxanthin

Baking powder

Barley malt

Bleached flour

Blended sugar (sugaridextrose)

Brown sugar

Calcium citrate

Calcium fumarate

Calcium gluconate

Calcium lactate

Calcium magnesium acetate (CMA)

Calcium stearate

Calcium stearoyl lactylate

Caramel and caramel color

Carbonmethylcellulose sodium

Cellulose microcrystalline

Cellulose, methyl

Cellulose, powdered

Cetearyl glucoside

Choline chloride

Citric acid

Citrus cloud emulsion (CCS)

Coco glycerides (cocoglycerides)

Confectioners sugar

Corn alcohol

Corn extract

Corn flour

Corn gluten

Corn oil

Corn starch

Corn sweetener, corn sugar

Corn syrup, corn syrup solids

Corn, cornflour

Corn, cornmeal

Corn, popcorn

Crosscarmellose sodium

Crystalline dextrose

Crystalline fructose

Cyclodextrin

d-Gluconic acid

Decyl glucoside

Decyl polyglucose

Dextrin

Dextrose (also found in IV solutions)

Dextrose anything (such as monohydrate or anhydrous)

Distilled white vinegar

Drying agent

Erythorbic acid

Erythritol

Ethanol

Ethocel 20

Ethyl acetate

Ethyl alcohol

Ethyl lactate

Ethyl maltol

Ethylcellulose

Ethylene

Ethylene Glycol

Fibersol-2

Flavorings

Food starch

Fructose

Fruit juice concentrate

Fumaric acid

Germ/germ meal

Gluconate

Gluconic acid

Glucono delta-lactone

Gluconolactone

Glucosamine

Glucose

Glucose syrup (also found in IV solutions)

Glutamate

Gluten

Gluten feed/meal

Glycerides

Glycerin

Glycerol

Golden Syrup

Grits

High fructose corn syrup

Hominy

Honey

Hydrolyzed corn

Hydrolyzed corn protein

Hydrolyzed vegetable protein

Hydroxypropyl methylcellulose

Hydroxypropyl methylcellulose pthalate (HPMCP)

Inositol

Invert syrup or invert sugar

Iodized salt

Lactate

Lactic acid

Lauryl glucoside

Lecithin

Linoleic acid

Lysine

Magnesium fumarate

Magnesium Stearate

Maize

Malic acid

Malonic acid

Malt syrup

Malt, malt extract

Maltitol

Maltodextrin

Maltol

Maltose

Mannitol

Masa

Methyl gluceth

Methyl glucose

Methyl glucoside

Methylcellulose

Microcrystaline cellulose

Modified cellulose gum

Modified corn starch

Modified food starch

Molasses

Mono and di glycerides

Monosodium glutamate

MSG

Natural flavorings

Oil, Canola

Oil, Vegetable

Olestra/Olean

Paracetic Acid

PLA - Biodegradable Plastics

Polenta

Polydextrose

Polyethylene Glycol (PEG)

Polylactic acid (PLA)

Polysorbates (e.g. Polysorbate 80)

Polyvinyl acetate

Popcorn

Potassium citrate

Potassium fumarate

Potassium gluconate

Powdered sugar

Pregelatinized starch

Propionic acid

Propylene glycol

Propylene glycol monostearate

Pullulan

Rice Syrup, Rice Malt, Rice Malt Syrup.

Saccharin

Salt

Sodium carboxymethylcellulose

Sodium citrate

Sodium erythorbate

Sodium fumarate

Sodium lactate

Sodium starch glycolate

Sodium stearoyl fumarate

Sorbate

Sorbic acid

Sorbitan

Sorbitan monooleate

Sorbitan tri-oleate

Sorbitol

Sorghum syrup

Starch (any kind that's not specified)

Stearic acid

Stearoyls

Threonine

Tocopherol (vitamin E)

Treacle

Triethyl citrate

Unmodified starch

Vanilla, natural flavoring

Vanilla, pure or extract

Vanillin

Vegetable anything that's not specific

Vinegar, distilled white

Vinyl acetate

Vitamin C

Vitamin E

Vitamins

Xanthan gum

Xylitol

Yeast

Zea mays

Zein

The Subtle Side of a System of Bullying those with Food Allergies

We’re having a conversation in our group about schools and activities, with emphasis on accommodations for kids with allergies.

And I am seething in anger.

Rewards for achievements is class trips to a movie theatre, during school hours. I guess there are worse things, like rewarding kids with candy. 

Oh wait..  these movie trips also include popcorn and candy.

If it was my kid, I would be raising holy hell.  How about instead give the kids a fun activity that isn’t sitting in seats like they do all day every day?

How about exploring a museum? Having a picnic in a park, or even just going to the park to play for a few hours in the afternoon? Maybe they can have a game of badminton or soccer or football or basketball and the winning team gets a prize… like a free cone at DQ or a $5 gift card or even just a badly made trophy that they can get bragging rights? 

But instead, lets fill them with sugar and sit them down for 2 hours.

Then there’s the popcorn parties, and food parties, where parents have offered to supply popsicles or other “treat” so that their child could take part… and they were refused.

Instead, the child is forced to miss school that day or from what I just heard today… This girl was made to sit in a room alone for 2 hours with work to do and self-teach. ALONE. ABANDONED.

And that’s not the worst of it.

One parent was given the option of having their child sit in the library with the detention kids or they could pull the kid from school that day and be marked absent.

Yes, please lets teach our kids to expect exclusion if they want to avoid their allergens. That’s going to go over really well, and is probably why there’s so many reports of kids dying in school.

Let's continue to make these kids who already feel different.. Let's make them also feel more alone.. More abandoned.. more isolated.. Because it's inconvenient. 

The Best Food Allergy Diary

Keeping a diary of your food intake can be daunting. What can be worse is trying to go back through what you've entered to find answers.

For those of you highly experienced in Excel or computerized spreadsheets, this may be easier for you. For those of you who like to use pen and paper, this might be more challenging.

First, you'll want to have a small notebook that you can carry around with you 24/7. It's often hard to remember everything you ate, everywhere you went, and everything you did if you're just recording it at the end of the day.

For accurate results, you will need to be detailed.

I recommend that each new day start at the top of a new page. It may take you several pages to note everything for the day, depending on how big your notebook is and how small you write. You will want to be as detailed in your notes as possible as this is your original notes.

At the beginning of the notebook, inside the front cover (or if you have a way to mark the outside of the notebook) put the start date make sure to include the day, month, and year, and when you fill up the notebook mark on the front cover the end date of that notebook.

Each entry should start with the following:

• The Exact Date
• Time of waking and how many hours of sleep
• Mood upon waking
• Weight (try to take your weight measurement before eating or drinking anything for the day, even before water. If you go to the bathroom first, make sure you continue to do so with each weigh in.)

You may also want to include any extra notes about any of the above. Did the baby cry all night? Was there a big stressful meeting that morning? Was your sleep unusual in any way? And feel free to be as frank about your mood as you like, if you feel like roadkill, go ahead write it down.

Other things that you may also want to include are:

• Waking Temperature - Get a basal thermometer, and keep it right next to your bed with your notebook. When you just wake up, roll over, grab your thermometer, place it under your tongue while you lay there and wake up for a couple minutes. This will also help you (if you're a woman) know when your ovulating.
• Waking blood sugar - If you suspect any kind of blood sugar issues, head to your nearest pharmacy and buy the cheapest blood sugar testing kit - make sure the strips are also cheap as that is where most of the cost will come from. If you're doing this, you may want to also test your blood right before eating meals and 2 hours after eating. Eating allergens can affect your body's ability to utilize sugars, so I actually advise this for pretty much anyone who is suffering.)
• Daily Pollen Count - record the pollen concerns for your area.
• Exercise/Activity - What kind of exercise did you do and how much? Did you do something odd or unusual that you don't do every day, such as clean the toilet, mop floors, travel, etc.?
• Places - Did you go someplace outside of your normal? Grocery stores? Did you go clothes shopping? The air sometimes at certain places can cause reactions so keeping note of these things can help.
• Symptoms - Any symptoms that you experience, even if you don't think it's a symptom. If you notice it, write it down along with the time you noticed it. For example, if you notice that you're tapping your pencil on your desk. You may not always do it, but sometimes you do, write it down (it can be a sign of jitteriness). If you stumble into your coffee table, write it down. If you notice your mood changes, even if you think it might be due to a co-worker (unless it's real normal thing - like you're sad but you just heard your dog died. Being livid at your co-worker for pronouncing your name wrong, you should probably write that down.) At least at first, you never know what is going to be an actual symptom and what isn't. Allergic reactions do a wide range of things in the body, so something you may have attributed to something else may actually be an allergic reaction.
• Bodily Functions: While urinating is likely not to be a big deal, you should at the very least record your bowel movements. If you have any gastronomical reactions to your allergens, then this will help give you more information. You'll also want to record information about your stools such as the Bristol Stool Scale.
• Household Products: Did you change your laundry soap? Bath wash? Dish soap? Make sure to record those changes as well.

When recording your food, you'll want to note exactly what you ate and when. This includes brand names, ingredients, what recipe you used, etc. Anything that goes into your mouth should be recorded with a time stamp, including gum, candy, medications.

Once you've started recording this information, make an Excel document (or get a big sheet of paper, or write really small) with a row along the side for each symptom you want to monitor, mood, weight, blood sugar, reactions or no reactions, and so on. Along the top, you'll record each day. It is through this documentation that you'll see the patterns start to happen. It is also easier with this to see when the last day you experienced a particular symptom so you can go back to your food diary and compare or contrast the specifics of what went on, and start to trace it back to the cause.

Good Luck, and Happy Recording!

Top 10 Signs You Might Have a Corn Allergy

Top 10 Signs You Might Have a Corn Allergy: 

10. You have a non-life-threatening condition with no cure and no tests that prove the disease, but a long list of complicated symptoms, and a bunch of tests which say what it isn't. 

9. You find it nearly impossible to maintain/reach your ideal weight no matter what you do.

8. You look at people strange when they aren't sleepy or don't have heartburn, reflux, diarrhea, or digestive distress after eating.

7. You're completely addicted to sugar, especially at night.

6. You've heard more than once that it's just "stress".

5. You take allergy medication like candy.

4. You have eczema or other skin condition which never goes away nor improves.

3. You have a tendency for mood swings or impulsive behavior.

2. You routinely suffer from migraines or cluster headaches.

1. Your doctor (and possibly your friends/family) is pretty sure you're a hypochondriac.

What do you think? Did I miss anything? What were your top 10 signs looking back that should have clued you in that you had a corn allergy?

(also bonus points if the treatment for #10 includes steriods or corticosteriods.)

Organic labels don't mean allergy-free for corn allergies

There's a trend today among those allergic to corn to look for the easy way out. Easy signs on boxes or keywords to look for that increase their chances of something being corn-free. (Personally I really wish we had trustworthy signs on packages, but that isn't going to happen any day soon.)

Over the last few posts here, we've tried to tackle the "corn-free" label on foods issue expressing our concerns that "corn-free" wording means very little to the corn allergic.

However, we've yet to tackle the "Organic" issue that seems to be bandied about today as the be-all of corn-freedom.

"You must look for Organic"… "Is it organic?".. "If it's not organic it'll contain corn."

There was a time when "Organic" actually meant a farmer grew it safely in his field without harmful chemicals and it was delivered to you without waxes or preservatives.  During this time, hunting for "organic" foods was a wise choice for people with a corn allergy.

Then Big Business got ahold of the "Organic" label. Now organic can mean a lot of things and even include nasty things.

What Organic means today is generally that almost any nasty thing that was once made with petroleum is now made with ethanol (corn) which can be sourced "organically".

I don't want to get into the debate of which is healthier for you or which foods have more nutrients. If "organic" on labels actually meant what it should, this wouldn't even be a post.

What I do want to make sure to point out is that "organic" labeling today essentially ensures that if a preservative or wash was used, it was corn-based (or soy). Wax coatings on organic fruits - corn-based. Washes on organic veggies - corn-based. Even foods at farmers markets labeled organic can use pesticides made from organic corn or corn in the fertilizer and corn-based washes.

Organic canned goods.. will have corn-based "organic" citric acid.  Organic meats are still processed/washed with corny acids most of the time.

I've even seen organic potato chips laden with corn-based dextrose and maltodextrin.

If you want to eat "organic", I have no problems with your choice. I would even encourage it.

However, if you're eating "organic" in hopes of being corn-free, you'll be sadly mistaken.

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).

What is a Corn Allergy?

When people think of food allergies, they often think of peanuts.  Or possibly lactose intolerance (take a pill).  Some of the more well-educated individuals are aware of the top 8 allergens; Peanuts, Tree nuts, Shell fish, fin fish, Soy, Wheat, Dairy and Eggs. Few realize that any food can be an allergen. 

The normally thought of as 'hypoallergenic', corn is actually an increasingly common culprit of food allergy complaints.

The Food Allergy and Anaphylaxis Network (FAAN) has this to say about corn allergy:  Allergic reactions to corn are rare and a relatively small number of case reports can be found in medical literature. However, the reports do indicate that reactions to corn can be severe. Reactions to corn can occur from both raw and cooked corn. Individuals who are indeed allergic to corn may also react to corn and grass pollens. Cornstarch may also need to be avoided.  

To those of us with reactions, the story is much deeper.  While there may be individuals who react just to the raw and cooked forms of whole corn and cornmeal, but can ingest cornstarch and undefined derivatives, we began this blog for the individuals who have worked hard to fit the jigsaw pieces of their reactions together in order to finally discover the cause of consistent reactions and come up with...corn.

Like Jenny Connors, we were on our own but not alone.  The definitions and mechanics of corn mediated reactions are still blurry.  There are some who have a definitive diagnosis of corn allergy (blood work or scratch test positive); and many who have only been diagnosed through the less-comfortable elimination and blind introduction method.  Or self diagnosed based on food diaries and symptoms; and deliberate elimination diets and exposures.

A common thread among our medical and popular information sources seems to be that corn derivatives such as microcrystalline cellulose and xanthan gum should not cause any reaction, but these actually cause reactions that are very uncomfortable.  And it isn't that people with corn allergies react to just cellulose, or dextrose.  There seems to be a consistent low level reaction to just about every derivative.

The new Food Allergy Guidelines state that a Food Allergy is any adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food.  (and food is defined as a substance intended to be ingested; whether in it's pure form or a processed one)  For the purpose of this blog and the associated ones, the term "corn allergy" will refer to the consistent adverse reactions experienced on exposure to any corn derivative, regardless of the presence of corn protein via food lab tests and/or measurable antibodies in the corn allergic person.  (The guidelines themselves say that diet challenge is the only definitive way to diagnose a food allergy.)

We are not doctors or medical professionals.  Just part of a small group of individuals with a common medical condition, learning from experience.  Our intent is to pool our experiences and research to protect one another, and help those just entering the world of corn-mediated reactions have a smoother transition.

I encourage our readers to find their own level of sensitivity and tolerance.

Companies who make great strides in protecting their food allergic customers have very little to go on when it comes to corn allergies.  When we make recommendations or suggest using caution, it is because multiple people (who already have reproducible reactions to confirmed corn derivatives) trace their reactions to a single product.  It doesn't mean every corn allergic individual is going to react to it, but it sure does help to know that product A has failed being safe for multiple corn allergic individuals and placed on a suspect list when you're planning a pre-graduation dinner or looking for a bite to eat before a job interview.  Hives don't make a good impression, and neither do GI reactions. 

If a product is on a suspect list but looks safe...contact the company to verify it's safety for your own tolerance level and then try it out when you don't have big plans in an hour, or the next day.  If you can enjoy it, celebrate.  And if not, at least you had a "heads up" and don't have to add humiliation to discomfort.

We may not be able to cure this condition, but we can manage it.

Good luck!!! 

Lactic Acid Washes on Beef - not safe for corn allergies.

Just in case you had your doubts, it looks like lactic acid washes on beef in the processing is going to be continuing if not getting more widespread in the future.

An article on the verdict of  “the safety and efficacy of lactic acid when used to reduce microbial surface contamination on beef hides, carcasses, cuts and trimmings”.  (Isn't looking good for those of us allergic to lactic acid.)

Lactic acid can come from milk, but most often comes from corn-based sources now.

In industry, the production of lactic acid is done by lactic acid fermentation performed by lactic acid bacteria.

 Lactic acid fermentation is a biological process by which sugars such as glucose, fructose, and sucrose, are converted into cellular energy and the metabolic byproduct lactate.

This practice isn't just for beef alone though. All meats these days tend to get a good "chemical" wash.

So if you have corn allergy and meats are causing you problems, you'll want to look into purchasing them locally from a farmer who can get them processed safely without acid washes for you.

Grading the severity of your allergy: Sensitivity vs Reaction Level

When it comes to allergic reactions there are essentially two measurements to grade your reactions.

On one side there is reactivity. The severity of a reaction can be as simple as making you miserable, or as life threatening to land you in the ER.

On the other side, there is sensitivity. One whiff of your allergen from 6 miles away might set you off, or you might just simply be able to pick off the offending food from your plate.

These two measurements of allergenicity (is that a word? probably not).. These two measurements of your allergy do not have a single thing to do with one another.

You can go into anaphylactic shock with every reaction, but still only react with direct contact.  Another person can simply not feel well with each reaction, and have that reaction if someone even walks in the room with the offending item.

This is where people get confused, and this confusion can sometimes cause people to proclaim things to be totally safe when they're not, or misrepresent themselves. Often this is not done with evil intentions, but with well meaning people trying to share their experiences and help others out.

Whether you tested a 1 or a 4 for your allergen, whether or not it lands you in the ER, does not make you sensitive. An allergy's sensitivity is about just how little contact or exposure is required to make you react at all in any sense.

In sensitivity, there are also two main gauges of sensitivity. Internal and External.

Internal sensitivity is when the allergen is ingested. This includes eye contact and breathing it in, as these both allow the allergen to get "inside" the body with possible absorption by the mucus membranes.

External sensitivity is direct skin contact. Keep in mind, even those without much external sensitivity may find themselves reacting to contact if their skin is broken, or if the corny substance is wet, or if they're in the shower, as wet or broken skin allows the body to more readily absorb the allergen through the skin weakening it's protective barrier.

Someone who is internally sensitive is not always necessarily externally contact sensitive. Those who are externally sensitive may not always be internally as sensitive.

This allows for a lot of confusion when grading products for reliability of corn-free status.

Even at my most sensitive, I could still pick up a corn chip with my fingers or touch a corn cob (I didn't because of my fear of accidentally getting residue of it in my mouth.) without much of a reaction or without a reaction at all.  Others would break out into a full body rash on contact with a corn chip, but be able to eat some contaminated products that would leave me sick as a dog for days.

So just to clarify.. The severity of your reaction while horrid does not make your reactions more valid for testing the presence of an allergen, it's your sensitivity (how much it takes to set you off) that is a much better test of the presence of an allergen.

So when you're out there on boards and forums, do a lot of reading and pay attention to what products people are using. Find the person who best fits your own sensitivity level, and join forces.

The best way to get through this allergy is with someone else who also can help you weed out problem products and make safe recommendations.

Don't trust anyone just because they sound right, or are saying what you want to hear.  Sometimes the thing that sounds the most unbelievable with this allergy, is the one you should rely on. 

In truth, question everything.


(If you're part of our groups, please also see terminology descriptions: http://no-corn.blogspot.com/2018/03/defining-your-sensitivity-level-for-our.html)

Discussion of NCGA blog post about corn allergies

There's a post over on "Corn Commentary", which is a blog of the National Corn Growers Association, which has gotten quite a few people in uproar.

The post is "Allergies Nothing To Sneeze At" which discusses how rare a corn allergy must be, and if read under the right light can lead you to believe that people with a corn allergy are exaggerating or making things up. I am not entirely sure that was their intent or not.

However, what's really gotten people into an uproar is that the comments are not showing. I know I have commented. I also know a good 10 others who have too, but none are showing.

If you'd like to discuss this article, please feel free to use our comments section here. I'll do my best to make sure that "Corn Commentary" sees them.



Some unpublished comments: (please feel free to tell us how you feel about their blog post in our comments, thanks)
_____________

"I deal with corn allergies all the time, and I appreciate you touching on this subject.

Corn is a growing allergen among children and adults, however it is still in its uphill battle stages as many doctors, nutritionists, and other medical professionals still consider corn a hypoallergenic food. (Don’t ask me why, but its true.) So even when presented with proof, some still dismiss the possibility. For that alone, many corn allergies never get reported, and many corn allergic persons resort to alternative medicine.

So that you’re unable to verify just how fast it’s growing does not surprise me. I’m not sure myself on the stats of a corn allergy and how fast it’s growing, and I’ve been doing corn food allergy coaching for nearly 6 years now.

What I do know is that every year there seems to be more and more demand for my services and knowledge, and more and more demand for corn-free foods." - Von

____________

"Your post sounds like you are poking fingers at this poor woman who has to deal with what I deal with everyday.  Its a nightmare.  There is a whole blog of people with corn allergy. http://forums.delphiforums.com/AvoidingCorn Total Messages: 80440 (39 posted today) Members: 2880 (47 active today)

Corn is in everything!  Here's a list of ingredients I have to look out for every day.  http://www.cornallergens.com/list/corn-allergen-list.php  Meat and vegetables are impossible to buy at any grocery store.  They are all sprayed with citric or lactic acid made from corn, or dusted with corn starch.  The USDA and FDA has done a fine job at regulating.  If there is just trace amounts of corn in any product it doesn't have to be disclosed at all!  It is really embarrassing when you visit someone and you have to always remember to bring your own toilet paper.  I really hate it when I am around any one with any scents or perfumes on.  The alcohol that carries the scent is made from corn.  It is nearly impossible to find soaps and shampoos without corn.  Vinegar, glycerin, alcohol, natural flavors, vanilla, citric acid, maltodextrin, sweeteners and diet sugars, and salt are just a few examples that are in virtually everything.  We even have to pay extra to have our medicines compounded.  We have to use the source ingredients without any corny fillers.  Please be more compassionate.  If any of us goes to the emergency room and we are given glucose we could die." - MissyAnn104

________________

"I have multiple food allergies and by far the one to corn is the worst! Why you ask? Just avoid corn! you say.
Yeah wouldn't that be nice but as you point out corn is so environmentally friendly replacing so many things that it is almost impossible. I can't even use my enhaler any more due the the "environmentally friendly" use of ethanol as the propellant now. Its illegal to use anything else the last I checked. Not to mention what trying to pump gas for my car does to me.
I could say so much more but I know it would do no good. Nothing would change. My life is so far from what it usd to be you would not even recognize it as a "happy ProductiveLife"." - wchamberlink

_____________________

"“Like people with any allergy, she will have to read the labels on any products she wants to consume or use. But, she can still lead a happy and productive life, despite that.”

What a ridiculous thing to say. Only someone that has never had to deal with an allergy to something as ubiquitous as corn could be so cavalier with such a loaded statement. If corn was disclosed on labels at all times, life would be much simpler for the corn allergic, but it would still not even be in the same ballpark with happy and productive. Everything is poison when you are allergic to corn. Other people with all their corny scented products, deli counters in the grocery store, gas stations (inside and out), hair salons, movie theaters, laundromats, offices, schools, even the houses of relatives can be intolerable. Try going on a date when you can’t eat at a restaurant or go to a movie. Try working in an office where microwave popcorn and hand sanitizers are every day obstacles. For that matter, try grocery shopping when they’re steaming seafood with corny seasonings or cleaning the floor and every handle of every shopping cart is wiped down with corny antibacterial wipes. Of course, you know how prevalent corn is in American life. You know that the economy of this country is irrevocably intertwined with the fate of GMO corn because this blog is all about corn propaganda. I noticed that Sudden Death Syndrome, superweeds and the ever increasing need for more chemicals to grow corn and soy crops aren’t mentioned on here.

We corn allergic may have it tough right now, but when the GMO crops fail (aren’t the stores of corn and soy at the lowest point in history right now because of crop failures?) we’ll be the only ones that know how to survive without all the corny “conveniences” upon which the rest of Americans is dependent. I have half a grassfed cow (custom butchered to avoid citric and lactic acids) and local vegetables in my freezer (specifically bought local to avoid corn waxes, gases and acid washes that are on almost all grocery store produce). What will you eat when the grocery store has no frozen dinners, breakfast cereal, canned pasta, sandwich meat, vitamin D milk or rotisserie chickens? Wouldn’t it be interesting to see you survive off the 18 items in my grocery store that are completely corn-free? (I”ll give you a hint: there’ll be no meat, dairy or wheat products at all and you better step lively in the produce section.)

Remember, no one can have it both ways. You can’t extol the virtues of having corn in every product in America in one breath and then suggest that corn allergic individuals only have to read labels for a happy life in the next breath. Who are you kidding?" - kristyreal

______________________

"Based on the tone of your article, it is obvious that you have completed however many days of research and stand by your beliefs.  The difficulty of the corn allergy, unlike other food allergies, is the unknown nature in which the allergy will manifest and the lack of discernible ability to pinpoint the culprit of the reaction.  This overall ignorance toward a corn allergy has not hope of change unless: 

1. A person with clout realizes they are allergic to corn and corn derivatives and gives money for research or sheds light on the allergy and the pervasiveness of corn (which you think is a good thing).

2. the corn industry doesn't have such a large hold and investment on the American food industry.

I'm sorry.   I don't agree with the comment "The fact that corn can be used to make a variety of products is a great thing..."  or the comment "...not unlike people who suffer from Celiac disease and are unable to eat anything with gluten in it. Like people with any allergy, she will have to read the labels on any products she wants to consume or use."

The reason I do not agree with your statements are the many hidden names of corn and the fact that corn and corn derivatives do not have to be labeled on ingredients lists, like gluten, soy, eggs etc.  Corn does not have to be labeled if it is used in any way to process a food, package a food, or used in medications, or IVs.

Most corn ingredients won't be labeled as "corn."  Case in point, I gave birth to my daughter last year, I told my OBGYN and the hospital staff that I am allergic to corn.  They even wrote it on my red bracelet.  I had to have an emergency cesarean, up until that moment I had no worries of being poisoned at the hospital.  They subsequently gave me an IV and medication (after 26 hours of labor and refusing said iv and medications) that contained corn...DEXTROSE to be exact.  I lost consciousness...they had difficulty reviving me.  I surmised, based on your logic, I should have stopped the medical staff to read the labels on the medications, since it's obviously my and, in the future, Maureen's daughter's job to make sure we don't die at the hospital.

I realize you "researched" your article before hitting the "Publish Now" button; however, I am certain you had NO idea how to properly research this allergy.  Your statements are based on ignorance.  You should try harder and be more diligent next time.  Perhaps you should consult Maureen.

Again, gluten must be labeled if any ingredient contains, was derived from, or MIGHT INCLUDE gluten, i.e. wheat, oats, barley, spelt
Soy must be labeled if any ingredient contains, was derived from, or MIGHT INCLUDE soy, even a no-brainer like tofu
Eggs must be labeled if any ingredient contains, was derived from, or MIGHT INCLUDE eggs...including a package of EGGS
Shellfish must be labeled if any ingredient contains, was derived from, or MIGHT INCLUDE shellfish...including shrimp and lobster
Fish must be labeled if any ingredient contains, was derived from, or MIGHT INCLUDE fish...including halibut, tilapia, salmon, etc.
Peanuts...Treenuts...Dairy....  Do you get my point?
Corn or corn derivatives, however, require NO labeling.  This is the list of corn and corn derivatives as it exists today.  Unless this is stopped Maureen's daughter will have to carry an encyclopedia with her to the grocery store or choose to not eat: (insert Conner's corn allergen list here)" - HelpImHungry

Food Allergy Misdiagnosis and Misinformed Doctors

For most people who have suffered for years only to find out later that a food allergy or corn allergy is the culprit of nearly all their suffering, there is a always a combination of two things that keep them from the correct diagnosis.

Misdiagnosis and Ignorant Doctors.

For many of the allergy symptoms there are "diseases" that doctors can diagnose them as having, and medications to give to help alleviate those symptoms. Often in these diseases, the medications are variants of steroids or anti-histamines, which help the allergic reaction which further the likelihood of the misdiagnosis. Some medications in these diseases merely manage the appearance of symptoms, such as anti-diarrheal, anti-nausea, anti-reflux, mood stabilizers.

Because there are a multitude of symptoms that come with allergic reactions, you can have a food allergy and never have your throat close or get hives. Unfortunately, many doctors are still misinformed about this and think that unless you get a clear case of hives or your throat closes shut, you can't possibly have a food allergy.

We've talked on this blog before, several times, about how tests are not the end-all-be-all of food allergy diagnosis. The most accurate tests are not 100% accurate.

What is 100% accurate if you're paying attention and you know all the symptoms that can be linked to food allergy reactions and watch for them, is the double blind food allergy intake test.  Where the patient is given food with their allergen in it, and again food without their allergen in it, and the person giving it to them doesn't know which food contains their allergen and which doesn't, nor does the patient.

Unfortunately, even in these cases.. with some doctors.. not all symptoms of allergic reaction are included by the doctor for medical diagnosis. 

The most common symptoms that I run across that are almost always missed as a food allergy reaction, especially in infants and children:

Reflux
Nausea
Failure to Thrive
Fear of Food
Distended/Bloated Belly
Digestive problems
Ear Infections
Sinus Infections
Trouble Swallowing
Asthmatic issues
ADD/Austism behavioral or developmental problems
Eczema

Recently, on our favorite corn-free forum, Delphi Forums - Avoiding Corn, there was a posting by a woman whose child has suffered needlessly for which she has tried in desperation to find a solution. [Read her full story here]

Her son went through the first year of his life with severe reflux, and failure to thrive. He wouldn't eat and developed an oral aversion, so the doctors put in a feeding tube to force feed him to keep him alive. His parents worked to train him to eat, but being so happy that he was actually eating, they didn't notice that he would only eat because that was what he was trained to do. (Much like training a child to eat pennies or an abused child being trained to accept the abuse.)

Reading her story was heart-wrenching for me, as I completely understand her child's predicament, and how well-meaning efforts to make him live were in reality the equivalent of the most cruel torture. As an infant, he tried in every way at his disposal to tell them that it was the food that was the problem, but no one understood.

She later stumbled into the discovery that her child was allergic to corn, as her attempts to give the child actual corn resulted in hives.  So she decided to remove corn products from his diet to test it, and saw him vastly improve in days and actually seek out food on his own.

Yet despite the improvement from avoidance, and his health worsening upon reintroduction of the food, his current doctor refuses to believe that corn is the problem. Because the doctor was trained to believe the (not always accurate) allergy tests, instead of the improvement in the patient.

We've become a nation more afraid that children won't get proper nutrition than we are for the child's actual health. Vegans remove foods successfully. Vegetarians do it successfully. People with peanut, seafood, milk, egg, wheat. and other allergies do it successfully. Yet there is this fear.

Luckily, with the advances in diagnosing Celiac and gluten-intolerance, doctors are more ready and able to look to foods as the culprit. Unfortunately, unless the tests back up the food challenge results, many doctors still consider removing any one food from a child's diet as bad parenting.

The problem is that there is really no one person to blame. It's how our doctors are being taught. The information or lack of it that they get about food allergies, often sponsored by the food companies themselves. Parents rely on their doctors to be experts, and want to believe that they can trust them to find the correct solution.

It's really a little known perfect storm.

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.