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.

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.

Ask Corn Allergy Girl: Water Filtration

The Question

I got a Berkey water filtration system and seem to be having trouble with the water. I saw on a post somewhere – and I thought it might be one of yours – that you should get the ceramic filters, not the black ones. I’m just wondering why. I’ve made two calls to Berkey. Both times they doubted me. The gal I talked to absolutely refused to believe there could be corn in, around, through or in any way associated with the black filter. I don’t even understand what would make the black filters a problem, but not the ceramic. Do you know anything about this?

– Darcy

[I’ve edited the question a bit to withhold some identifying information.]

A Little Background: There’s Corn In Water?

Yes, there is. Here’s the Hidden Corn entry on water. Like many other chemicals the additives and disinfectants in drinking water can be derived from corn (citric acid especially) or can be in a corn-based carrier to help them dissolve. Then, when it comes to water filtration systems, information is often proprietary so we don’t know for sure *what* is corny about it, we only know that the corn allergic react. My best guess is that the activated charcoal in some water filters could be from corn, or could have been “activated” using a corn based acid. Additionally filters that add minerals back in to the water will do so via corn-based carrier chemicals. *And*, I don’t have a reference for this, but there are reports of antimicrobial polymers such as antimicrobial toilet seats causing BIG contact reactions with corn allergics. The housing of the water filter could be made from an antimicrobial polymer, and that polymer would likely be corny.

Now the Answer

Continue reading “Ask Corn Allergy Girl: Water Filtration”

Tips on Saving Money at the Farmer’s Market

Eating the way I have to is expensive, and I don’t have any choice but to find a way to afford it. I am financially lucky compared to many, and I still have a difficult time affording it. Over the summer as I’ve been stockpiling food for the winter, I’ve found a few ways to cut costs and thought I would pass on what I’ve learned.

  • Ask about buying large quantities. Farmers will often cut you significant deals if you are buying a 25lb box instead of just a couple of pounds. Of course you’ll have to find ways to preserve and store that quantity.
  • Show up late in the day for discounts on items that the farmers don’t want to pack home. Showing up late may cause you to lose out on the fast-selling items though, so be aware of that before you make this decision.
  • Ask about the “seconds” or the “uglies.” These are items that are physically blemished but often perfectly edible. Often these are not out for display and are kept under or behind the counter somewhere.
  • See if you can work out a trade. I have had more than one vendor tell me that if I showed up early to help them unload the truck, he’d cut me a deal on the produce I bought. I didn’t end up taking them up on it, but I don’t think they were joking. If you have a marketable skill like website design, you could look at trading that kind of work for food, as well.
  • Keep a friendly, polite, open line of communication with your farmers. Being a good and frequent customer can get you some discounts, but if you don’t speak with your vendor enough for them to know you and remember you, they may not realize what a good customer you are.

If you have SNAP/EBT benefits, there are many farmer’s markets that accept EBT cards. Here is a list of Farmer’s Markets that accept them. (This is the official Food and Nutrition Service document, and is a Microsoft  Word document. If you don’t have Word, I will try to keep this Google Doc version updated.)

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.

Eating Seasonally: Prepare for Flu Season now!

Elderberries are in season on the Pacific NW and may be in your area as well! If, like me, you’re too sensitive to traces and cross contamination to tolerate any of the prepackaged elderberry syrups or prepackaged dried elderberries, now is the time to stock up on the wild foraged stuff and freeze or dehydrate to make into syrup for the flu season. Not familiar with elderberries and why I’d want them for the winter?

Where to Get Them

What we have growing wild and native in the area is blue elderberry. There may be some folks growing black elderberry in the area, but I haven’t found them. Let me know if you know of any in the Western Washington area or even down in to Oregon. If you live outside of the Pacific NW, you may have a different species available to you. The most common species seems to be American Elder, which has a strong folk tradition of medicinal use, but please do your own research and don’t just go taking herbs on my say so.

Only black elderberry (sambucus nigra) has been officially studied for its medicinal effects but I am taking a chance on blue elderberry being as good for you since it’s what I have access to. There’s at least enough folk wisdom referenced about the use of blue elderberry for medicinal purposes to make me feel comfortable doing so. Foraged and Found Edibles at the Seattle Farmer’s market has them right now and hopefully will for a couple more weeks. I emailed ahead and asked them for 13lbs to pick up at the market and he had a box just all prepped for me to pick up when I arrived.

How to Process Elderberries

Note that the stems and unripe berries are toxic, so you will want to carefully pick over your berries and remove those. What I do is wash them and place them still on the stems on baking sheets in my freezer. Then when they’re frozen I take a fork and pull the berries off the stems and remove as many of the stems as I can. I flash freeze again since the berries have melted a bit while I do that, then pick over to get the last of the stems and green berries out and then put into quart bags to freeze. Some stems still make it into the bags so I will rinse them and sift yet again before using.

You could also dehydrate the berries. I just chose to freeze mine.

How to Use and How Much to Store

Here is the recipe I use to make elderberry syrup. 1 cup of berries should make 1.5 cup sof syrup, and 1.5 cups of syrup will make about 5-6 days of doses for one person at the recommended 1 tsp every 2-3 hours.  My 13 lbs of berries made about 8.5 quarts without the stems so that’s about 170 days of flu-level elderberry syrup doses, give or take. Should be plenty for two for the winter, heheh.

Continue reading “Eating Seasonally: Prepare for Flu Season now!”

To Epi or Not to Epi?

If you haven’t read about Natalie Giorgi’s tragic death due to an allergic reaction already, catch up here. It’s a sobering story: her parents did everything right, yet she still died.


This article by Dr. Mark Greenwald
states that the problem is that the guidelines for epipen use are incorrect. His opinion is that if a patient has a known potential for anaphylaxis and a known or suspected exposure to the allergen, epi should be given, even if symptoms have not presented. He holds that the “wait and see” approach, despite being what is advised by the medical community, is what killed Natalie.

I don’t have much more to say about it at this time. I’ll just link you to the article to read. With most articles I advise that folks don’t read the comments because of the rampant stupid, but the ones I read from this article were actually as informative as the article itself. I didn’t read them all though, so my apologies if you scroll to the bottom and someone has said something just awful.

Tragic Loss of Sacramento Teen Reveals Flaws in Anaphylaxis Guidelines

Don’t Panic: A Beginners’ Guide to Corn Allergy

So you’re allergic to corn.

First: Are you SURE you are allergic to corn? People often forge ahead with this as an assumption and in some cases, it might be best to question it, at least for a minute. As you will realize as you read the rest of this post, avoiding corn is not as simple as cutting a few foods from your diet. Corn is not only a food, it is a food additive, preservative, disinfectant, lubricant, emulsifier, anti-caking agent, and more. Not everyone has to avoid everything derived from corn, but for some reason more people have to avoid more derivatives than you’d ever expect.

If you’ve had an adverse reaction to a food, you should definitely avoid that food in the future. But if the food had many ingredients besides corn, it might be worth taking some time to think critically about whether the corn in the food was the problem or something else.

So before you start turning your life upside down: What gave you your diagnosis? Was it a scratch test? Those have false positives. Was it a blood test? Those don’t usually have false positives, but it could happen. Did you do a food challenge? What was the food you challenged? Any chance it was a possible allergen contaminant in the food other than corn?

Okay, so you’re SURE it’s corn that you’re allergic to. Now what?

The steps for dealing with a corn allergy are about the same no matter how severe your reactions are. But if you are having severe reactions, you need to follow sort of an accelerated schedule and get yourself out of crisis ASAP.

Symptoms of severe reactions include:

  • tight, hoarse, trouble breathing/
    swallowing
  • shortness of breath, wheezing, repetitive
    cough
  • Significant swelling of the tongue, lips
  • becoming pale, blue, faint, having a weak pulse, being dizzy
  • rash/hives over more than 25% of the body
  • widespread redness/flushing
  • loss of consciousness (including feelings of excessive sleepiness that you just can’t fight- getting to lay down before you pass out still counts as passing out!)
  • loss of motor coordination
  • extreme swelling of the eyes, lips, or anywhere else in the body
  • prolonged and or painful diarrhea/intestinal cramping
  • prolonged vomiting
  •  Feeling something bad is about to
    happen, anxiety, confusion

Read more about the signs of anaphylaxis here on the Food Allergy and Anaphylaxis Network.  In particular, please take a look at, and carry with you, this simple handout on how to recognize and treat anaphylaxis. Here is another overview of the effects of anaphylaxis on the body. If you are having these kinds of reactions, you need to make drastic changes right NOW, get as corn free as possible to begin. Then maybe you can see how much you can tolerate adding in from the “corn lite” options. People with less severe reactions can sort of take their time instead of diving in head first.

Who This Guide Is For

This guide is written for people who are reacting a lot or reacting severely, because that’s the situation I came from, but I think it can contain good advice for others.

Even if you aren’t currently in crisis, I don’t suggest that you start out by assuming that you aren’t very sensitive and don’t need to make many changes. Rather, I strongly suggest you aim for going completely corn free within 6 months, and *then* see how well you do with derivatives and traces. The reason I suggest this is that there are a number of symptoms people wouldn’t typically associate with an allergy or intolerance such as joint pain, mild GI distress, acid reflux, “random” mild rashes or itching, eye pain, fatigue, bouts of sleepiness, blood sugar highs and lows, and eczema, that can disappear with the elimination of corn, but that you wouldn’t realize are a reaction until you eliminate the offending food for a while and then reintroduce. All of these symptoms are indications of inflammation that are doing long term damage to your body, so it is in your best interest to eliminate those sources of inflammation so that you can heal.

Learn the Basics

The following article is a really good overview on the spectrum of allergies and sensitivities. Please read it right away to give yourself a good grounding in the basics before beginning your corn free journey: Inflammation – Allergies and Sensitivities on WomenToWomen.

Get Support

Find a community of people who have already done this. I suggest the Corn Allergy and Intolerance group on Facebook because it saved my life literally in 2012, but it’s also grown quite a lot since I joined, and more members means more posts from other new people.  I strongly believe that communicating with other patients can help you learn more about your own situation- there is no way I would have made the progress I have with either my food sensitivities or my other conditions without learning from others what did and didn’t work for them.  But keep in mind: no matter where you get support, that there is no shortcut for studying, learning, and using your best judgement.  If someone tells you that something is corn free, and it sounds to good to be true, probably err on the side of caution.

Stay Safe

  1. Figure out how to safely treat reactions.
  2. If you have the kind of severe reactions listed above, get a prescription for an EpiPen. If you have reactions that aren’t necessarily severe but are definitely a “true allergy” meaning hives, rashes, asthma, and other IgE symptoms, you may want to consider getting an EpiPen just in case. A bit more on “true allergies” vs intolerances. If your usual doctor won’t give you one, try the walk-in clinic. If they won’t give you one, skip directly to the “Get Your Doctor On Board” step and find someone who will write you a prescription. Learn when to use your epipen. The EpiPen 2-pak comes with a “training” pen and instructions on how to use. Read up on it before you need them and train at least one family member on how to use it as well.
  3. Read this emergency medicine info. Bookmark the mobile site and use the information to prepare your own ER docs.
  4. Don’t assume that if you do not have a true “allergy”, you cannot have a severe or life threatening situation as a result of your corn sensitivity: there have been some rare incidences of IgG, the immunoglobulin that causes “food intolerances”, causing anaphylaxis:  https://www.ncbi.nlm.nih.gov/pubmed/21029722/
  5. It is possible for food to do lasting or even immediately life-threatening harm without allergies being involved.  The following are not corn, but illustrate some ways that food can harm you other than allergy:
    1. Sulfite sensitivity is not mediated by IgE but can be deadly.
    2. Celiac disease is an autoimmune response to food and can do lifelong irreparable damage to your body.
    3. G6PD deficiency causes red blood cells to be destroyed in the presence of certain food or meds. This can be deadly and in some extreme cases people have died from airborne exposure to a trigger before they could be given blood transfusions.

Continue reading “Don’t Panic: A Beginners’ Guide to Corn Allergy”