Propylene Glycol / Reader Submissions

One reader’s incredible journey of discovering her Propylene Glycol Allergy

Cynthia wrote in to me yesterday and we’ve been chatting through e-mail ever since. Check out her amazing story. She figured out her PG allergy all by herself!

“I am a 33 year old female with a very long history of GI problems and strange reactions to random things. As a child, I was diagnosed with a betadine allergy (but not iodine, which caused every doctor to screw up his or her face!), a “sensitive stomach”, and I knew most medications made me feel icky.

Three years ago I was diagnosed with Addison’s Disease, an autoimmune condition where the adrenal glands do not produce the stress hormone cortisol. The lifelong treatment is corticosteroids. In the beginning of my treatment, my GI problems disappeared. I thought I had all the answers. But I did not get the overall improvement the doctors expected. For three more years, I waivered.

Six months ago my stomach went bezerk. I spent more time in the bathroom than out. After a week, I went to the doctor, where they initiated a ton of tests and gave me a shot of depomedrol (prednisone-based corticosteroid to prevent Addisonian Crisis). I had never had depo before. It made me feel better, but suddenly I had pink raccoon eyes and a swollen nose. I thought I had caught a cold in the waiting room.

My problem continued to worsen. I made excellent friends with a GI doctor, had every test in the book, and eventually spent 8 days in the hospital. Stress dosing the Addison’s with corticosteroids helped me feel better. In hindsight, that and the high doses of phenergan (an anti-nausea med that is also an anti-histimine) suppressed my immune response to an allergen.

Several more months passed, and I was worse. I had accepted I would not live without periodic IV fluids, and even with them, my heart would not be able to take the continued strain of dehydration forever. At some point, this mysterious stomach ailment would kill me.

I finally a tried a gluten-free diet just to see. I improved greatly within three days. I thought I had found my answer! Celiac disease that didn’t show up on the tests. No…not quite…but it was a fantastic starting point. Weeks later, I had too many unexplained allergy attacks. So I sat down with a list of items, researched their ingredients, and played least common denomenator. Propylene glycol? Never heard of it. I looked it up on Wikipedia. Suddenly my entire life made sense! Later that day I had an allergic reaction, both facial and ingestion, to a banana. I cried, thinking my genius discovery was now out the window. Until I googled “propylene glycol banana”…turns out, they spray produce with this stuff to ripen it before sale! In order to avoid it, buy organic.

I replaced all my cosmetics and hair products. After buying all natural soap, I discovered that soap no longer burned when I washed. It has all my life, but I thought that was normal. I practically live at Whole Foods. I read every label. I discontinued most of my medications. I went from over 30 pills per day down to five. I found a compounding pharmacy. My doctors are stunned, my family is amazed. I am a new person. I have NEVER felt this fabulous! I still have Addison’s Disease, but now it is a managable condition.

My latest hurdle is dental work. I have extensive dental problems, but now I know why. Everything at the dentist contains PG. It took them three days of intense research to find enough items to do any work on me.

I have just starting finding people online who share my experiences. I am very grateful to make new friends who understand and can hopefully impart some knowledge on a newbie.

Thank you for the time you devote to posting this information. For every person who writes you, there are sure to be many more who do not but still benefit.

Cynthia”

9 thoughts on “One reader’s incredible journey of discovering her Propylene Glycol Allergy

  1. Here’s some more info below that Cynthia was so generous to share with everyone!

    Food has been a trial. But I have found some great stuff. I have to be super careful about ingestion, because that about killed me. The skin allergy is nothing compared to food.

    Candy – avoid gum with artificial sweeteners. Altoids are okay. There is a brand of candy called Unreal that is awesome. Reese’s cups are okay, but miniatures are not. They are made differently, so read all labels, even if you think it is ok!

    OTC drugs – you have to watch these closely. Generics may be ok, brand names not, or vice versa. Zantac 150, Claritin ReadiTabs, Wal-Zyr D tablets, Pure vitamins (I currently take D and calcium), Walgreens artificial tears, Walgreens eye itch relief, Campho-Phenique, A&D Ointment, Bayer Advanced aspirin coated tablets. Gel caps, capsules are bad. Look for tablets. Propylene Glycol is the active ingredient in Miralax and colonoscopy prep. Even minuscule amounts have a major laxative effect on me. I generally know within ten minutes if I have ingested some.

    IV diazepam (Valium) has so much PG, it has been documented in medical literature to cause adverse reactions. Every form of Benadryl I have researched also contains it. Most prescriptions have it as an inactive ingredient, so watch closely and find a good compounding pharmacy.

    Eating organic is the only way to do it. Fruits and veggies can be sprayed before sale to ripen them, so if you shop at a normal grocery store, be careful to get sealed organic produce. I don’t know for sure, but I imagine if organic produce is right next to sprayed, it could rub off!

    Coffee is a biggie for me. I must have it. Many coffees, especially flavored and blends, are treated with PG at the bean stage. Something about extracting more flavor. Go with organic. Green Mountain has a few organic coffees for K-cup brewers. I have gotten very ill from Starbucks coffees, except their espresso. My attempt to contact them to ask about PG use was stonewalled, so obviously they don’t want to advertise their use of it. Google “coffee propylene glycol”. It is terrifying.

    Go organic with sour cream and coffee creamer. I have had bad luck with non-organic, even when they don’t list it as an ingredient. My understanding is that depending on what stage of the manufacturing process it is used, PG does not have to be listed as an ingredient. (Coffee is anime example!)

    Avoid non-organic ranch dressing. Cheesecake is usually made with sour cream.

    The coating on M&Ms is bad. Watch for “shiny” or “glossy”.

    As long as I avoid the obvious foods, I have been able to eat out at some restaurants. A few favorites are Outback, Red Robin, Chic-fil-A (avoid chicken nuggets). I lived on fruit smoothies from McDonald’s for months when I was sick, but I didn’t know at the time why they were okay. We recently went to Lake Tahoe, and I ate really well at several local places. There is a lot of natural and organic food there. Avoid cheese sauce, too. That fake orange stuff will get you!

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  2. Hi Cynthia,
    I too am allergic to propylene glycol and I think all glycols. I am really at my wits end. It presents itself as muscle inflammation in my joints on my left side. I also become lethargic, dizzy and suffer from severe brain fog. I really do not know what to do. The doctors just look at me like I am crazy. Please email me at andrews192@aol.com so we can discuss our allergy.

    Thank you,

    Tosha

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    • Hi Tosha! What sort of doctors have you seen? And WOW, I’m severely allergic to PG as well but as far as I can tell, it only affects my skin and digestion. How strange that yours only affects your left side! Hang in there girl – you deserve props for dealing with this! And you’re not crazy – I’m beginning to think the use of PG is indeed crazy, though. Tonight I’m going to post a sheet the specialist gave me which lists a whole bunch of foods (listing the specific brand and type of product) that have PG in them. It will give you a good idea of what to keep an eye out for. I love that we can all connect on here!! :-)

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  6. I am finding this website so helpful that I am going to start my own blog to document my (so-far) mild withdrawal from topical steroids. There is like NO information on what does and doesn’t contain PG, and since being diagnosed with this allergy a few weeks ago, I am extremely frustrated. I wish it were as easy to find information as it is about gluten or MSG. I have even begun brainstorming ideas to create a general PG allergy website. If I have to go through every product, one at a time, and call every company, I will. Thanks to The Allergista and Cynthia! I am glad to have even a few people that can help!

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  7. Though my story isn’t as extreme as hers, much of the storyline is similar. Thank you for such a clear explanation to the PG allergy. I’ve shared your story in hopes that those who care will read it to better understand the world in which we live.

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