Share Your Story!

After you've read the "Start Here" post, come on over here and introduce yourself. Some things to get you started:

How did you discover you had an allergy or sensitivity to glycols, or what makes you suspect that you do?

How long have you been dealing with it?

What's the most useful thing you've learned to help you cope?

Are you just getting started?

What brought you here?

How can we help?

14 Replies

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  • Hi,

    I am Mike. I don't have a confirmed allergy, in fact every test the allergist has performed negative. However, they could only perform skin patch test for glycols and none of my symptoms are skin-related.

    I definitely have a problem with polypropylene mesh. Time and time again I get extremely disturbing symptoms, including:

    - pain in my nose and sinuses

    - pain in the roof of my mouth

    - I feel incredibly irritable

    - blue flashes in my eyes

    - red eyes

    - nose is dry and sore

    I was having these problems on an off for ten years, but I could never draw the link. Then one day, I bought a memory-foam mattress. And my symptoms became terrible after one day. After two weeks, I was constantly trying to understand what caused it.

    It couldn't possibly be the mattress? So I started sleeping on the sofa, and 4 days later the symptoms had gone. I got rid of the mattress immediately.

    Just recently I bought a pair of Beats Solo 3 headphones. And my symptoms started going wild again. Surely it can't be the headphones? Oh my god - yes it can. The headphones have a memory foam patch in them.

    Another problem I have is a gap in my teeth. So I tried to get a plastic denture. Even if I wear the denture for 5 minutes I get an incredible pain across my nose. Three days later I then get an orange nasal discharge as the pressure alleviates.

    Over the years I've noticed flare-ups in my symptoms regularly, and there is always a plastic-based or polypropylene product in there somewhere. Bed duvets and pillows, for example. I have to spend so much time trying to find 100% cotton products.

    Fortunately, I don't have a bad reaction to carpets which are made from polypropylene. It appears there is some especially evil about polypropylene mesh and memory foam.

    I also have a problem eating foods, using toothpastes, shower gels, shampoos etc. So I try to avoid as much as possible and eat a restricted diet of rice and meat (not fat) where possible, and I brush my teeth with water only.

    My current dilema is dental. I need to cover the ugly gap in my teeth, but I'm scared to have titanium implants

    I came to this forum in the hope that maybe, just maybe, after all these years of seeing doctors and searching around the internet, maybe I'll find that one little piece of information that helps me to find out what my problem is and get a diagnosis.

    I'll never be cured and I'll be crying myself to sleep for the rest of my life, but dear god I have to know what is going on inside my body causing all these problems. Please don't torture me in this way.

    Over the past ten years, I've learned a hell of lot, through trial and error, maybe I can help other people and ease their suffering if anyone has similar problems.

    Hope you enjoyed my story. Thanks for reading.

  • Thanks for sharing your story! You might want to see if you can find exactly which ingredients in food, toothpaste, soap and shampoo you react to. If you can find some thing s you know you don't react to and build from there, you might have more options.

    As far as the mesh and foam, the more you know about the ones you reacted to the easier it will be to know which things are safe and which aren't.

    I have titanium implants in both my knees and in four of my teeth with no issues, but I don't react to mesh or foam.

    Have you seen these posts on the website? They might help:

    allergic2glycols.wordpress....

    allergic2glycols.wordpress....

    allergic2glycols.wordpress....

    allergic2glycols.wordpress....

    allergic2glycols.wordpress....

    allergic2glycols.wordpress....

    Please keep us updated on what you find. Try to keep your chin up and know you are not alone!

    Amber

  • Mike - have you tried Colgate Whitening Liquid Gel (linked below)? I have been using it and none of the ingredients cross with any synonyms for glycol on the "Household Products Database" (I like to search glycol on that database, then use the "Find" command from my internet browser and type in each ingredient in the product to be sure none of them are glycol in disguise).

    amazon.com/Colgate-Whitenin...

  • Thank you for the suggestion. I have tried many toothpastes over the years, including 'natural' ones, but the results are always the same. But I will give your suggestion a try :)

  • Welcome to the group, Mike! I know you will find Amber's resources very helpful. It sounds like you're confused about your allergy because you don't have a formal diagnosis. You are correct, however, in thinking that you are having a chemical sensitivity/allergy to the glycols. Has your doctor done a prick test for PEG? I know they sometimes do them in the hospital before procedures like colonoscopies which use Miralax as a prep (100% PEG).

    I would just like to interject a few things. Have you looked into going to a biological dentist? He/she may be more knowledgeable about how you can have your teeth fixed in a way that won't cause you harm.

    Also, it's very important that you don't limit your diet too much, except to avoid all processed foods. You want to eat lots of good "real" food---food in its natural state. That means high quality protein (grass-fed beef, organic chicken/turkey, wild caught fish, nuts, seeds); lots of vegetables and fruits; and the good fats---coconut oil; olive oil; avocadoes, etc. I'm a firm believer in the connection between a healthy gut microbiome (which is where 80% of our immune system is) and our ability to detox which, in order, allows us to become less reactive to our allergens.

    As far as personal products are concerned, you can make some yourself, but there are also some safe store brands out there. Personally, I like to do "oil pulling". People are in to it now because it helps whiten teeth naturally, but I like it because it cuts down the bacteria in my mouth. You take a tablespoon of coconut oil in your mouth once a day and swish it for about 20 minutes. I usually do it while I'm getting ready in the morning. Don't swallow it and don't spit it in the sink (will clog the drain). Rinse your mouth afterwards. I make my own toothpaste (baking soda, salt, peppermint oil/extract); floss with "Gentle Floss" (bought at health food stores); and rinse once a day with warm salt water. My DIY deodorant is: 1/3 cup baking soda; 1/2 cup cornstarch; 5 Tbsps. coconut oil; 16 drops tea tree essential oil (or less if using a purer oil). I buy my shampoo at Walgreen's. It's called "Shea Moisture Raw Shea Chamomile and Argan Oil Baby Head-to-Toe Wash and Shampoo" found in the baby aisle. It has frankincense and myrrh in it and smells terrific!

    Amber is working on setting up a file on this site for posting information to share. Until that is ready, I want to offer you (or anyone else on this site) some of the papers I've written that you may be interested in. The main one is called "Living With a Propylene Glycol/Polyethylene Glycol Allergy", but I also have one about the allergy-gut connection; Functional Medicine; etc. Let me know if you want me to e-mail them to you. Write me at kerrykuzak@yahoo.com. Please write "PG Allergy" in the RE: section.

  • Hi Kerry,

    Thank you for your detailed response. I am certain that if I ever do find a diagnosis or a cure, it will be through a kind person like yourself taking the time to offer their advice. That's why I'm here.

    I've asked my local allergy testing specialist for the PEG skin prick and he said it's not possible. I've been tested with glycol path tests on my back, and I've had lots of other skin prick tests for other things, but he says there is no glycol prick test. If anyone has any links to proof, I can email that to him and ask him to try and acquire one.

    What you're saying about food is completely true. I really would love to be able to eat a healthy, balanced diet. Unfortunately, doing that will mean my symptoms quickly get out of control - headaches, bloating, skin rashes etc. Every single fruit and vegetable makes me worse in just one meal.

    I'm not sure if foods are a direct problem. I feel that something is causing an imbalance in my body, and the food comes in on top and exacerbates the problem. Whatever the problem is, it doesn't show on any of the many tests I've had over the past ten years. Blood tests, stool tests, allergy tests, you name it.

    I haven't given up, but after all the years, I can't see how things are ever going to get any better. I feel like I've tried everything with regards to diet, supplements, diagnostics...

  • Hi again, Mike! Please excuse me if you think I'm overstepping my bounds by asking things, but I sincerely want you to figure out your health issues. It sounds to me like you've gone the standard medical route with allergists, gastroenterologists, etc. Have you ever considered seeing a naturopathic doctor or integrative medicine doctor? They are much more in tune with nutrition which plans a huge role in our immune system and health. I have suffered from candida overgrowth which is a yeast that lives in the small intestine. I have also had "Leaky Gut Syndrome". In my case, it resulted from 10 years of antibiotic use for acne and 11 years of a proton pump inhibitor for my acid reflex. Both these things destroy the good bacteria in the gut where 80% of our immune system lies. There are MANY symptoms of the intestinal permeability of Leaky Gut which occurs when the intestinal lining becomes too porous and allows toxins and proteins to flow through the intestinal wall and into our body. It causes reactions such as skin disorders, depression, anxiety, aches, pains, food allergies, autoimmune diseases and multiple chemical sensitivity to name a few. Leaky Gut causes lots of inflammation and allows for malabsorption and nutritional deficiencies (iron, B12, magnesium, zinc, etc.) Our organs are not getting what they need to do their work---especially the liver's ability to detox. The toxicity in our world is tremendous these days with chemicals, heavy metals, fluoride, and pollution of the air, water and soil. When we can't detox properly, we suffer a whole slew of problems.

    Last year, I went on the Dr. Axe Healing Leaky Gut diet with very good results. Basically, you heal the gut with the consumption of bone broth and avoid the "trigger" foods of gluten, sugar and dairy. I'm in a support group associated with the problem and learn lots of new things daily. There are people in the group who have lots of issues with food sensitivities (like nightshades or histamine producing foods) and suffer from things like parasites, yeast and fungus. Traditional medicine doesn't seem to test for these things routinely, but they are a real problem in this world. Anyway, I also see a Nutrition Response Testing practitioner on a regular basis to assess what my body needs through muscle testing. She has been right on about my needs for the B vitamins and gentle detox aids. I'm 65 now and feel so much better than I did 15 years ago when I had digestive distress, sleep issues, acne, arthritis....

    So, I don't mean to go on and on, but a new avenue of approach may help you if you haven't considered it before. Please email me at kerrykuzak@yahoo.com if you want any of my information sent to you.

  • Hi Kerry,

    You're welcome to make suggestions, and yes, I followed a lot of those naturopath ideas about 8 - 10 years ago. For me, nothing worked.

    The problem I have with Candida and Leaky Gut, is that they are not acknowledged by mainstream medicine because there is no evidence to support them and no way to diagnose them as far as I am aware.

    In my opinion, Candida, Leaky Gut, etc are just a scam, praying on vulnerable people like us who have unknown health problems that our doctors cannot diagnose. I spent a lot of money on them and nothing worked - it only made me worse.

    There is nothing that makes me feel better. Not one herb, ointment or lotion. Everything makes me worse. The only thing I can do is put fewer things into my body or in contact with my body both natural and chemical things.

    I'm desperate to find a cure or diagnosis. I'm desperate to have some hope. But Candida, Leaky Gut, Lyme's disease, parasites, etc... that is false hope. I've already spend hundreds of dollars trying all of the cures and magic potions for those illnesses, and the special diets, and none of it worked. Now I keep well clear of anything that does not have reasonable scientific support.

  • I'm so sorry you haven't had any luck whatsoever, Mike. I truly feel you need to find the right practitioner, though. Leaky Gut is acknowledged by main stream medicine, but they don't have a plan to deal with it like naturopathic doctors do. Anyway, keep your options open and RESEARCH, research, research. I don't know your age and where you live, but I personally know a lot of young people who are hurting because of the accelerated vaccination schedule that has occurred during the last 25 years; exposure to heavy metals; and our poor food supply (GMOs, glyphosate). Our bodies can only take so much before they rebel.

    Sending positive thoughts your way!!

  • Hi Mike,

    My son's allergist can to a prick test with almost anything. She asked us to bring in any fruits or chemicals we were concerned about and she did those tests right there with the stuff we brought in, as well as doing the standard panel that allergists already have in the office.

    You might get a second opinion from an allergist that is more open to the possibilities he hasn't yet heard of.

    There are also some resources on the website that you can take in to your doc if you think the problem is that he doesn't believe it's possible to be allergic to glycols.

    We are kind of like the canaries in the coal mine, paving the way for others who come behind us.

    Here's a link to a paper written by a physician about our situation:

    allergic2glycols.wordpress....

    Amber

  • Thanks. I'll take a read. A diagnosis would change everything for me.

  • Hi I'm Emily, mid thirties. Diagnosed at age 12 with a confirmed positive reaction on a contact dermatitis allergy test (they added " dipropylene glycol" when they administered the T.R.U.E allergen patch test). They added PG to my test because my hands had just blown up double their normal size when the restaurant I was bussing tables at changed the soap used to wipe the tables down. From age 12 - 25 I didn't understand that - I had thought that the addition of PG was a control on the test - not part of the test! I'm also allergic to some other topical chemicals used in producing natural and man-made rubber, a chemical used to make glues, and nickel. I have a sinus allergy to mold and have recurring sinus polyps treated with surgery three times and counting. I also have asthma (diagnosed about 10 years ago - my childhood doctor wasn't very good).

    For me my symptoms are especially topical:

    red, raised, bumpy, swollen rash in the general area of exposure (and hands, and other areas that have broken out repeatedly). Severe itchiness, sometimes crusting and eventually flaking. Contact dermatitis.

    I also regularly notice my hands swell up even if they were not exposed to it - if for instance it was toothpaste, still my hands swell (not too seriously, but enough to be uncomfortable, and itchy).

    The spot where they patch tested my back seems to also flare in this same way, when another area of the body has been exposed to glycol.

    The inside of my mouth and nose get really itchy - possibly not linked to glycol (as mold allergy can do this too, fruits, wine, etc can have mold spores).

    I think there may be an asthma link too - when I'm broken out particularly badly, I tend to have more asthmatic problems (my asthma is mild and is controlled 80% of the time without a maintenance inhaler).

    The most helpful thing that I've learned to cope is to check the inactive ingredients in the topical meds given for an allergic breakout - clobetosol is in a base of glycol so it relieves symptoms, and then a day later it's worse than ever.

    I'm currently struggling to find a health care professional who can explain how likely it is for me to be having internal / systemic inflammation due to ingested medicines that use small amounts of glycol. I assume that if my hands break out from washing the cup used to measure baby Tylenol (base of glycol), then surely my insides must have trouble ingesting it when it is in my medications. But typical allergists don't understand topical allergies, and dermatologists don't understand typical (non dermatological) allergies. Googling and reading articles about this is what brought me to this page (the initial blog).

  • Wow, you are really dealing with a lot, Emily. I can tell you're a wise young woman by your willingness to find answers! My daughter's name is Emily too and she's just a few years older than you. My Emily has Hashimoto's which is quite challenging. I, however, am much like you. I get contact dermatitis with exposure to the glycols. I want to share with you a few things I have learned during the last 4 years of my search for answers about this PG/PEG allergy.

    The first thing is I try to live as naturally as possible so as to avoid as many chemicals as possible. This chemical allergy of ours shows that our bodies are on toxic overload. We don't want to add to the environmental burden that we're under just going about our daily lives. So...cleaning products are all natural: mostly vinegar and water and hydrogen peroxide (bleaches things like grout pretty good/safely). Cosmetics are as natural as I can get---mostly mineral based. I make many personal care products including toothpaste, mouthwash, dishwasher detergent, laundry detergent, etc. I really love the soaps I get through the Vermont Soap Co. (online) The "Soapman" there is chemically sensitive himself, so he is really careful with his ingredients. I use their Castile soap for dish soap and their bar soaps for everything else.

    The skin is a funny organ. It truly has a "memory" and once you've broken out in an area, it continues to break out there, in addition to any new spots on your body. I've been having good luck with the use of essential oils. I can give you a recipe if you are interested. I try to stay away from all steroids because of what you have noticed with Clobetosal. It works well for awhile, but it is also hard on the adrenal glands. And yes, there is definitely the reality of cross-reactivity to lots of things. I'm so happy you're looking at labels and checking the ingredients to know possible links to cross reactors. I even wear white cotton gloves to the grocery store because of having to touch the cart handle (which some people wipe with antibacterial wipes) and the produce, some of which has the potential of being sprayed with PG (especially things coming from outside the country). Besides your mold allergy, it's possible you may also be reacting to fruits like grapes which are heavily sprayed with PG when they are on the vine and also the wine made from them.

    It's my belief that most of us with allergies need to work on improving our gut microbiome where the majority of our immune system is located. We also need to detox which may benefit areas of blockage like sinuses. Functional Medicine/Integrative Medicine doctors are much more in touch with these ideas than conventional medicine. Please e-mail me at: kerrykuzak@yahoo.com if you want me to send you any of my papers regarding allergy, the gut, and Functional Medicine.

  • Hi Emily,

    Oh, goodness, what a load to carry! I am so sorry.

    I have managed to live with minimal outbreaks by avoiding ALL glycols, even in the smallest amounts. I am my pharmacy's favorite pest, checking the manufacturer of all my prescriptions every time I pick them up, and asking for product inserts for every new prescription. I have three pharmacies I use, because each uses a different supplier and I never know what the inactives will be if they suddenly switch to a new manufacturer of the drug.

    Not easy, but it has kept me mostly hive and breakout free since I started looking at EVERYTHING I put in or on my body and avoiding all glycols.

    I hope you can find relief, Emily. It's hard at first to get used to avoiding glycols completely, but it has certainly worked for me.

    Let us know what works for you.

    Best,

    Amber