Category: Medications

Mast Cell Activation Syndrome

This blog is about corn allergy, but it’s no secret by now that I don’t “just” have a corn allergy. I also have a mast cell disorder, and that is likely the reason my corn reactions are so severe and sensitive. It is also the reason why I react to so many other things besides corn. More and more people with corn allergies are looking into mast cell disorders for themselves, so I figure it’s high time for me to discuss them here.

What Are Mast Cell Disorders?

Mast Cell Activation Disorders (MCAD) are abnormalities of your mast cells. Mast cells are a very important part of your immune system and are involved in your body’s defense against pathogens. They protect your body from invaders by releasing inflammatory factors including histamine, such as in an allergic reaction. When you have too many mast cells, or they are malformed or dysfunctional, you can have allergic reactivity without the same immunological pathways involved in allergies. There are two types of mast cell activation disorders: Mastocytosis, and Mast Cell Activation Syndrome (MCAS).

Continue reading “Mast Cell Activation Syndrome” →

Hospital and Medical Safety With a Corn Allergy

Learn something from this post? Feel free to show your appreciation with a tip! The info on my blog is always free, so you are never obligated. But it is always appreciated.
Buy Me a Coffee at ko-fi.com

Updated 2/21/2017bl

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.

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.

Negotiate Safe Meds

Get the NDC # for any medication they want to use. This is found on the package insert. The paper package insert has the inactive ingredients somewhere on it, but it is hard to find in all that tiny print. Rather than scouring the inserts, look the NDC # up on DailyMed and skip to the last section, “Ingredients and Appearance.” There should be a section on inactive ingredients which you can cross reference with the corn derivatives list. 

I’ve also made a google doc spreadsheet available containing some of my findings on medications. This list was using for open heart surgery for someone, so it isn’t exhaustive of every possible med you would ever want to use. It also was done basically in one night on an emergency basis, so it is really just my off-the-cuff response after eyeballing the ingredients list. However it is a better starting place than nowhere.

When negotiating safe medications, consider not discussing corn. Explain that you have a history of allergic reactions to “excipients and preservatives” in medications, and that you really need your meds to be preservative free for your safety.

This includes premade saline flushes for iv lines. I found that out the hard way when I was recently admitted to the hospital.

When You Can’t Negotiate 100% Safe Meds, Pre-Medicate

I recently had to have blood transfusions, and not only is there  corn in blood bags as well as plasma, but reactions to blood transfusions are common even in those without allergy problems. This was scary, but I didn’t have a choice. I needed blood. The hospital admitted me even though transfusions are typically an outpatient procedure, and we agreed on a premedication protocol before proceeding with any transfusions.

If you need to receive blood transfusions, plasma, or any other procedure that may cause you to react, or if you need to take a medication for which you cannot find a corn free form, you just have to take medication to help prevent severe reactions, and remain under observation so that any reactions can be treated.

You will want to consult with your doctor on the right premedication protocol for you. I use a version of what The Mastocytosis Society recommends. I do have MCAS, however those who have “just” allergies and not mast cell disease can follow mast cell protocols with quite a bit of success.  That protocol is:

  • Corticosteroids, either intravenous 2 hours beforehand (if  this needs to be done right away), or orally starting 2 days beforehand (if you have time to plan).
    • If you receive an injection of steroids before a procedure, you need a taper of steroids to begin after the injection wears off to account for biphasic reaction or further irritation from the medication or procedure.
    • The length of the taper will depend on the procedure and your particular reactivity. Consult with your doctor.
    • For me personally, my preferred steroid injection is solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol). I find it to be far more effective than prednisone. Dexamethasone might be a good option, but I am unable to take it due to my g6pd deficiency.
  • Intravenous or intramuscular benadryl  25-50 mg 1 hour before and 25-50mg IV, IM, or orally every 4-6 hours after  until chance of reaction is passed. (This may be several days depending on the procedure or medication.)
    • This needs to be intravenous or intramuscular if at all possible because it is much more effective than oral.
    • Hospira brand is safest for me diphenhydramine hcl for injection is safest for me.
    • If you are concerned about having a reaction to the benadryl or an ingredient in it, wait until the steroids have kicked in, and choose intramuscular over intravenous as it will “mute” the reaction somewhat.
    • You may be able to use another strong H1 antihistamine such as hydroxyzine if you cannot use benadryl. Consult with your doctor.
  • Oral, intravenous, or intramusculer H2 antihistamine (pepcid 40mg or zantac 150mg) 1 hour before and every 4-6 hours after until chance of reaction has passed.
    • This increases the effectiveness of the benadryl (or other h1 antihistamine).
    • This is less of a big deal to do IV or IM, and can be oral. Meaning if you can’t find a safe injectable version, ask the hospital staff to allow you to take your own H2 if you have one.

All meds should of course be prervative free and corn free.

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 freezer 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 *with* head strap accessory.
  • 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.)
  • 1x 3M Half Facepiece Respirator with  the  3M 60926 Multi Gas Filter Cartridges.
  • 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)
  • 3 days worth of all daily & rescue medications.  (The hospital will not want to allow you to take your own medications but if you use the instructions above to check for corn in the medications they want to administer, and cannot identify a corn-free option, they may allow you to take your own if you calmly and rationally explain to them that you are likely to react to the excipients and preservatives in the medications they have on hand.) 

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

Learn something from this post? Feel free to show your appreciation with a tip! The info on my blog is always free, so you are never obligated. But it is always appreciated.
Buy Me a Coffee at ko-fi.com

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

Corn Free Xyzal, Finally!

I just received an email from my compounding pharmacist out of the blue that he was able to order some Xyzal for me and that it’ll be in in two weeks! His timing couldn’t be better, as I am dealing with some pretty horrific seasonal allergies right now.

And that’s really all I had to say. I’m on something of an unofficial hiatus right now, taking a bit of a breather after a summer of intense preserving. Because I am allergic to pretty much every vegetable that grows between October and May, I had to spend June-September preserving enough food for one adult to eat for 7 months. That’s, um, a lot of food. No cheating and going to the grocery store- if it ain’t in my freezer or growing in a pot in my living room, I can’t eat it. Well, other than pears, apples, oranges, clams, and oysters. Those are the only foods I can get safe nearly year round.

But the details on that is for another post, when I’ve had a bit more time to rest and recover. Just wanted to share my victory! If you’re still trying to find corn-free non-drowsy antihistamines, just know that it IS possible!

Ask Corn Allergy Girl: Finding a Compounding Pharmacy

The Question

Hello,

I recently developed an allergy to ALL of my prescription medications. I take several of them and they are medications that I desperately need. Everytime I take them I have itching. I researched all of the ingredients and found that they all contain the same fillers & inactive ingredients. The common ingredient is magnesium stearate, but I’m not sure if it is the specific culprit. There are so many. I am having trouble finding substitutes that do not have all of the same exact fillers or any fillers for that matter! This is so frustrating! I don’t know what to do. Even OTC meds have all the same crap. I have prescriptions that need to be filled right now, but I am afraid to. My pharmacist thinks I’m crazy and we got into an argument over it. I live in a rural area where there aren’t any compounding pharmacies. Do you know of a reputable national compounding pharmacy that uses pure medication without fillers? I am going to an allergist next week. I hope she believes me & is will to try a REPUTABLE compounding pharmacy that uses pure medication without using crushed pills. Please I would appreciate any suggestions.

Thank you!
Sheri

Some Background: There’s Corn In Medications?

If you look at the inactive ingredients of just about any prescription medication, chances are you will find at *least* one item from the corn allergens list, very likely corn starch. What to do then? Sometimes you may be able to find a version of the medication that is either corn free or has little enough corn that you can tolerate it. If not, you may need to have some of your meds custom-made for you with ingredients you tolerate. There are pharmacies called compounding pharmacies that can do this for you.

My Response to the Question

I have been exactly here and it’s scary and frustrating.

First, are you on the Facebook Corn Allergy group and/or the Delphi Avoiding Corn Forums? If not, join one or both of them immediately. You need some support, and there may even be a member of one of those groups who is in your state and already has a pharmacy they are working with.

There are a couple of reputable national compounding pharmacies. College Pharmacy is one. However the “big guys” that can ship to every single state rarely use custom filler, and I find it highly likely that you will need to provide your pharmacy with a custom filler you know you tolerate. If not now, you probably will later. So rather than go for a national compounding pharmacy, it would be better if you can find someone more local to you via the Pharmacy Compounding Accreditation Board. (Choose “PCAB Compounding Pharmacy” from the dropdown if in the USA, or “Canadian PCAB Certificiaton” if in Canada.)

If I were you, I would use that registry to find someone near you, either in your state or in a neighboring state, and ask them:

1) Do they make their custom prescriptions out of the pure drug, without fillers, and mix in their own fillers on site if fillers are needed? (Some “compounding” pharmacies get the drug already diluted with corny fillers, and this will not work for us.)
2) If fillers are required, are they able to use a filler that YOU provide, if you are unable to tolerate any of the fillers they stock?
3) If you do not tolerate the soap they use to clean the capsule machine (many use Dawn which is corny), would they be able to use a different soap for you?
4) If you do not tolerate the gloves they use to handle the meds, are they able to switch to a different type?

The answers to all of the above should be yes in order for you to do business with a pharmacy. Even when they answer all your questions correctly, be prepared that the first time you fill a script, it may not be successful, so don’t go ordering a 90-day supply to begin with.

Note that I personally do not need to have them use a custom soap on their capsule machines, however my pharmacy is willing to do so if needed and that is comforting to me. At the time of writing I have them use Karlin’s Finest Baking Soda for a filler and Letco brand gelatin capsules. They don’t use custom soap on their capsule machines but they do refrain from stuffing their bottles with cotton and I have asked them to not use packing peanuts when mailing my prescriptions.

Getting Medications Compounded on News for Corn Avoiders

My Additional Notes on Getting Medications Compounded

Corn Free Asthma Treatment

What’s corny about asthma inhalers?

The propellant in modern HFA puffer-style inhalers almost always contains ethanol from corn.

There are several steroid or combination steroid-and-topical-anti inflammatory diskus inhalers that don’t use a propellant at all, but rather contain dry powder that you use the power of your inhaled breath to pull into yoyur lungs. Some preventative diskus inhalers are: Advair Diskus, Asmanex, and Flovent Diskus.

Note that so far all diskus inhalers contain lactose, so the severely dairy allergic are out of luck here.

However steroid inhalers are only useful for preventing an asthma attack.. they won’t treat one that is already happening.

What do I do if I’m already having an attack?

Your best bet would be the Ventolin brand HFA inhaler. It contains contains albuterol sulfate, but the propellant is not corn ethanol, it’s tetrafluoroethane (HFA 134a). The Xopenex HFA inhaler also uses this propellant but contains other exipients such as oleic acid and dehydrated alcohol which is most likely from corn. Ventolin has no other ingredients. I use the Ventolin HFA and sometimes I react to it just a little, so I don’t think it’s entirely corn free, but so far the benefit has outweighed the negative outcomes. Other inhalers including the popular ProAir HFA made my throat close.

Update March 2016: I’ve just discovered that ProAir is now making a non propellant albuterol inhaler that works like the steroid inhalers mentioned above. The only ingredients are the albuterol and lactose: ProAir Respiclick

If you can’t tolerate that, your best option is to get a nebulizer, which is a device that does the propelling for you. Then you just put the powdered drug which can be compounded corn free into the chamber and get the medication delivered. (Some nebulizer powders may be corn free off-the-shelf, check inactive ingredients.) There are pocket nebulizers for carrying with you however they are still somewhat bulky.

Update on Compounding Xyzal and Zyrtec

Hi all, I’ve been quiet, busily getting the last of the summer/early fall produced preserved while I can, but I just wanted to update you with the compounded antihistamine situation.

So Xyzal and Zyrtec *can* be compounded, BUT the sourcing is turning out to be more complicated than I want it to be. My pharmacist, after telling me that he could get me Xyzal in a 25mg quantity from a reseller, emailed me yesterday to tell me that it was backordered and not available at this time, but “could be in the future.”

I DO know that it is possible to get these drugs from PCCA, the problem is getting it in reasonable quantities. If you have a pharmacist that is able to get you either Xyzal or Zyrtec in reasonable quantities and compound them into corn-free capsules for you, and they can either fill a script with custom filler and ship to Washington state, or can repackage and resell to a pharmacy in Washington state, please let me know, because I’d really like to get a corn free Xyzal or Zyrtec.

Corn Free Medication: Getting Prescriptions Compounded

Compounding pharmacies are pharmacies that get the pure active ingredients for a medication and put them together into custom formulations for you. Since corn products are in so many medications, a compounding pharmacy is often the only way to get a corn-free version of a medication. Rather than repeat good information that’s already been given, I’m going to direct you to an excellent blog post on getting medications compounded corn free and then add my own notes to it:

Getting Medications Compounded on News for Corn Avoiders

My Additional Notes

  • Your doctor may not know how to write a compounding prescription. Here is a link on how to do so to print out. Basically, they need to write “Compounded medication. Free from corn, [other allergens].” Then the *generic* name of the medication, and the amount and prescribing instructions. As long as they write compounded, though, your pharmacy should be able to call them and get any details worked out.
  • Some insurances cover compounding prescriptions with no problems, some won’t cover them at all, and some only cover if the drug is in their formulary, meaning it would normally be a precription. So compounded meds like acetaminophen or Benadryl are often not covered because they are usually over the counter. You’ll just have to talk with your insurance. In general compounding pharmacies do not bill insurance for you, so you do have to pay up front and then submit later.
  • Call several pharmacies until you find one that is willing to work with you. Explain that you need everything done just right because you react to a number of preservatives, excipients, and sweeteners. If they are disbelieving, move on. Ask about whether you can bring in your own filler to use that you know you tolerate, since you may react to all the fillers they use normally. If they are hesitant, move on.
  • Some compounding pharmacies charge more than others. If you have a few that seem like they can work with you, ask them the price for a 90 day supply of the first drug that you want (probably Benadryl, since there is no corn free version available off the shelf) and use that as a comparison point.
  • When you fill your first prescription, less is more. Go small because if you react, the pharmacy will probably not give you your money back. Maybe they will, but I wouldn’t count on it. With compounding unfortunately you can’t really fill just 1 or 2 pills for just a few dollars, as they have to calibrate the machines and all that jazz for 1 pill or for 100. So usually there is a minimum charge for that, and then a discount for quantity. So for example, a 90 day supply may end up being not much more expensive than a 30 day supply, but a 10 day supply could cost the same as a 30 day. Usually the price breaking point where you are paying a decent amount per pill is about 30 days. Or that’s been my experience.
  • If you are getting a capsule with a filler included in addition to the medication, be sure the filler is safe for you. Lots of times pharmacists try to insist that microcrystalline celllulose and lactose monhydrate are corn free. Many corn allergics react to them all the same. (Note: They may also be safe for you, it’s just not impossible to react to them. You will need to make sure.) The gelatin or veggie capsules may be corny, even if the manufacturer states that they are not. If it is possible, see if you can get a sample of the filler and capsules they want to use, without the actual meds, to trial to make sure you tolerate them. If you can’t tolerate any fillers they stock, they should let you bring in your own. Or really just start out with bringing in your own to reduce variables.
  • Many medications can be compounded without a filler. Do that when possible. Benadryl usually requires a filler because the amount of active ingredient needed is too small for the machine to measure. Some pharmacists will hand-stuff the pills without the filler but very very few.
  • If you are someone who is really having a lot of trouble finding a filler you tolerate, due to multiple sensitivities or an extremely sensitive corn allergy, you may need to go to some effort to find a pharmacy who is willing to make some pills for you without filler. Normally for very small doses like 100mg or less (so that would be most antihistamines) people say that a pill “can’t” be made without a filler. What they mean is that it can’t be made EFFICIENTLY. When using a capsule machine, one mixes up enough med+ filler to just exactly fill each capsule with the right dose and then does all the pills at once. If one were to sit there and hand stuff each individual pill, they could do it without the filler. Now finding someone who is willing to do this may be hard, but is technically possible. People have accomplished it. So if you need to, and aHere is a youtube video showing how pills are made by one compounder.
  • In addition to the capsules, medication, and filler, watch out for them stuffing cotton into the bottle to keep the pills from rattling around. I swear the cotton my last pharmacy used was corny somehow. Also watch out for whether they ship their meds with packign peanuts in the box. Those are made from corn starch.
  • There are some pharmacies that say they do compounding but do not actually order the pure medications. They get their medications from a distributor that actually already has excipients, fillers, and inactive ingredients in it. McKesson one such company- they distribute powder-form drugs with fillers already in it at specific concentrations, and the fillers are often corny. When you contact a compounding pharmacy make sure that they are getting the PURE medications.
  • Note that some pure medications are corny. Acetaminophen is made with acetic acid, which can be from corn. Antibiotics are cultured on corn sugar. Any mineral that ends with “citrate” or “lactate” will be that mineral + citric acid or lactic acid from corn. If you need the drug you need the drug, but be aware that the pure meds themselves can cause a reaction.

Preventing and Treating Allergic Reactions:

Buy Me a Coffee at ko-fi.com

How I Treat Reactions

Updated 12/2017:  I’ve edited this a bit to be more generalized because my specific methods have had to change due to my MCAS and G6PDD. 

Obviously I do my best to make safe decisions and not react. That’s what this blog is all about. But there are circumstances out of my control pretty often, especially since I have dangerous reactions to airborne corn, and honestly yeah, I do just screw up. My diet is pretty limited right now so I *have* to try new things. I am usually very careful and when a food fails I only deal with a very mild reaction before I call it quits, but sometimes I mess up, and sometimes the food is SO corny that trying only small amount causes a major reaction.

Here are some general things to try if you do react. This is loosely based on The Mastocytosis Society protocol, which even though it is for mast cell disease, can easily be applied to “regular” allergic reactions as well.

Note that all of my medications need to be compounded. This is due to corn derivatives found in many premade medications. Manufacturers and pharmacies may say that these derivatives cannot cause a corn reaction because the “proteins have been processed out”, but it has been demonstrated by those with corn allergies over and over that they DO react to these derivatives. Further, cross contamination during manufacture can cause an issue for the most sensitive even if the ingredients themselves are not sourced from corn. Add in multiple sensitivities, and you will probably have a very hard time with most excipients and inactive ingredients in medications. Here’s more info on how to find out the inactive ingredients in your meds.

The “magic formula” for treating reactions is:

  • An H1 antihistamine.  First generation antihistamines such as benadryl, or hydroxyzine would be the best bet for a strong reaction or a reaction involving neurological or mood changes, since these cross the blood-brainb arrier.  Typical is 25-50 mg for both. The max dose for hydroxyzine is higher than benadryl, but benadryl has some qualities that make it the prime choice for a reaction if it can be tolerated. More information on getting corn-free benadryl. Second generation antihistamines such as ceterizine (zyrtec), levocetirizine (xyzal), fexofenadine (allegra) may be a good choice for a less strong reaction
  • An H2 inhibitor, such as ranitidine (zantac) or famotidine (pepcid). This increases the effectiveness of the H1.
  • A mast cell stabillizer, such as cromolyn sodium or quercetin.  This *may* help prevent rebound reactions.
  • A steroid, such as methylprednisolone, prednisone, or dexmethasone. These should be used rarely and sparingly as side effects such as Addison’s disease and Cushing’s syndrome are a very real risk with steroid use.

Important: If you are having an anaphylactic reaction, simply taking these meds is not enough.  No antihistamine will stop anaphylaxis once it starts. The only thing that treats anaphylaxis is epinephrine. It is common hospital practice to adminster benadryl and “wait and see,” but this is NOT the correct treatment and can and has led to deaths.

If you are in doubt, epi. If you epi, always go to the hospital. 

Mayo Clinic Article on how to treat anaphylaxis


Manitoba, Canada public health department info in treating anaphylaxis

A Simple handout on how to recognize and treat anaphylaxis

An overview of the effects of anaphylaxis on the body

Rebound Reactions

When you have an allergic reaction, your body is flooded with histamines which run around creating inflammation all over your body. The actual symptoms of the reactions are due to your various cells’ response to the histamine. Antihistamines like benadryl simply block the receptors on your various cells that would notice and respond to the histamine. That means that when they wear off, if there is still histamine in your system, your cells will start responding again. This is known as a rebound.

I don’t have any scientific evidence of this, but it seems logical that a mast cell stabilizer may help to reduce the chance of a rebound reaction. Mast cell stabilizers actually help prevent the release of histamine in the first place, which *should* help prevent rebound reactions as the antihistamines wear off. I have noticed that it helps me.

Detoxing

After a reaction it will usually take me at least a day to recover, sometimes up to 10 days if it was a bad one. If I had to epi and go to the ER, I could be toxxed out for *weeks*. My tongue will burn every time I eat something and I will just feel like I’m mild-to-medium reacting constantly, or about to react. I call it “feeling full-buckety.” There’s no real cure for this other than time and lots of water, but there are a few things I do to help move the toxins out of my system faster.

How I Detox After A Reaction

  •  Bentonite clay baths or foot soaks in clay from Living Clay Company. I have only tried the pure bentonite clay (sold as the “detox clay powder”) and not any other products. I am on their mailing list and wait until they have free shipping promotions and then order large quantities at a time. I rarely have time for a full bath but I find that the foot soaks are 80% as effective as a full bath and easy to do often.
  • Bentonite Clay taken internally, with LOTS of water, to help absorb toxins/allergens and move them through the system faster.  I find this works better than activated charcoal at detoxing after a reaction, but I am mentioning both options.
  • Activated Charcoal, taken internally, for the same purpose as the bentonite clay. Again, lots of water to flush it through your system!  I am no longer recommending a specific brand of activated charcoal because the manufacturers keep changing what they do. You’ll need to do some research and find something that works for you.
  • Epsom salt baths and foot soaks- I am sulfur sensitive so I don’t do this anymore but it does help many. Dr Teal’s  unscented epsom salts are available at Kroger, Costco, Target, and on Amazon, and are safe for most.

A Note on Prevention

As i mentioned, antihistamines block the receptors that stimulate your mast cells to release histamines. Therefore blocking those receptors does not reduce the histamines already in your system, nor does it stop the inflammatory processes already happening from histamines that have already found a cell to stimulate. Thus it is better used to *prevent* reactions. Obviously avoiding triggers is the best bet, but something else I do is to take both antihistamines and mast cell stabilizers in advance when I know I am going into a dicey situation. Now, I don’t mean that I take antihistamines and then eat something bad. That’s stupid and dangerous. I just mean that if I think I am going somewhere where I could have an airborne exposure, (like Costco on a weekend when all the food samples are out)  or if I am in a situation where small children will be climbing all over me and possibly trying to stick hands and objects in my mouth, I take some appropriate precautions.

Before I go in to a potentially allergenic situation, I take:

  • 5 mg levocetrizine (xyzal)
  • 150mg zantac

I can still take up to 100mg of hydroxyzine on top of this. (It’s very sedating so I stick with 50mg or less typically). I avoid benadryl due to g6pdd one could also take up to 50mg of benadryl as well.

A Note on Zantac: Antacids to treat allergic reactions??!

When I have gone to the ER for an allergic reaction, they have given me two intravenous injections: Benadryl (diphenhydramine), and Zantac (ranitidine). The first time I got an injection of Zantac, I was totally confused. Isn’t that a medication for acid reflux?

Well, yes it is, but the mechanism by which it does that is by blocking (antagonizing) histamine receptors.  Compare to proton pump inhibitors such as Prilosec (omeprazole).  Prilosec actually stops the production of stomach acid, while Zantac stops the signals for gastric acid secretion *and* allergic reactions from being noticed.

H1 and H2 blockers taken together are significantly more effective in treating an allergic reaction than either one taken on their own. 

Because of this, a number of folks with anaphylactic food allergies take a daily preventative H1 and H2 blocker.  I’m one of them. I don’t hope to be on this kind of medication for the rest of my life. For one thing, H2 blockers have a number of effects on vitamin and mineral absorption over the long timer, including interfering with absorption of vitamin B12. Also, taking drugs just masks symptoms, and I’d much rather find the cause of the problem and heal. But I’m totally okay with doing it right now to reduce the possibility of a life-threatening reaction.

Daily Medications- when you can’t avoid your allergens

I encourage you to avoid all of the allergens you can avoid. But if you can’t, such as if your allergens are in the air, it may be wise to take medication daily to help reduce the possibility of a severe/anaphylactic reaction from an unexpected exposure.

Typical daily allergy meds are:

  • A non-drowsy H1 antihistamine such as levocetirizine (xyzal), cetirizine (zyrtec), fexofenadine (allegra), or loratadine (claritin). In many cases, you can actually safely take more than the label recommended amount of these meds. Check with your pharmacist.
  • An h2 antihistamine such as ranitidine (zantac) or famotidine (pepcid).
  • A mast cell stabilizer such as quercetin, nettle, or cromolyn sodium.

The only pharmaceutical medication I currently use daily is a prescription mast cell stabilizer, antihistamine, and leukotrine inhibiter called ketotifen fumarate. It helps me so much that I’ve quit taking the cromolyn and don’t need any other daily antihistamines. Ketotifen does have some side effects, including sedation and weight gain, so it is not a first choice medication for me for those reasons. However it has really allowed me  more freedom to exist in the world without fearing for my life from a reaction to what someone else decides to eat or wear.

During heavy environmental allergy season, I also take:

  • 10mg levocetirizine (xyzal), compounded in a gelatin capsule daily.
  • 150mg ranitidine, compounded in a gelatin capsule, no filler, twice daily

If I am traveling or know I will be exposed to a lot of triggers, I go ahead and take a prophylactic hydroxyzine in the morning and at night. The hydroxyzine is compounded and I take 25mg at the same time as the ranitidine, morning and night.  More if needed. More on what I do when I travel.

About getting Xyzal compounded.

Buy Me a Coffee at ko-fi.com