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?
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:
chickenlittleink.com/allerg...
chickenlittleink.com/allerg...
chickenlittleink.com/allerg...
chickenlittleink.com/allerg...
chickenlittleink.com/allerg...
chickenlittleink.com/allerg...
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).
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:
chickenlittleink.com/allerg...
Amber
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
Hi,
I'm Pernilla, in my mid-forties and I come from Sweden. I've recently been tested for allergy to the macrogols(polyethylene glycol) by injecting the substance under my skin. My arm immediately turned red, but yet the test was inconclusive, since I didn't show a ten times stronger reaction to a ten times stronger injection. On the other hand pieces are falling to places and they all leads back to this rare allergy. So far, I haven't found a single person in Sweden in the same situation as I. My doctor says this type of testing is very new.
I am multi-allergic and have some confirmed allergies to pharmacies, grass, cats and some food. I have for several years struggled with eczema, hives, burning sensations in hands, feet and head, rashes and other strange reactions, treating the symptomps but not knowing the cause. After spending time at hospital in January 2017 for diverticulit, I had antibiotics intravenously I got a terrible head ache and my hand and face started to slowly swallow and turn red. At home, I started taking some laxatives with macrogols I got a bigger reaction. Then I finally was tested for polyethylene glycol allergy.
I have been trying to strip the chemicals in my life down to a minimum. I use alepposoap and lemon for my hair, shea butter and coconut oil for my body, tooth powder for my teeth and a hand made all natural deodorant. I make my own hair products. Changing my medication, but can't find any tear substitute for very dry eyes I can use. That problem is for a lot of my other medication as well. My problem is, my doctor isn't aware of all the cross reactions to all the glycols and sugar alcohols etc. So not much help there. Since 3 months back I have an ungoing reaction that I can't stop, despite taking 4 antihistamines a day. One step at a time. Enjoying the days when I feel better.
Then there is food. What do you eat? I am trying eating as organic and ecological as possible, but it's hard to find safe alternatives.
The colonoscopy I was supposed to do 1-2 months ago, I am afraid to go forward with, before I or my doctor can help me find some safe alternatives. It feels like my life is on hold until I sort this out. I try to spend time with my family and friends, coping with my job and health issues at the same time. Yet, it's good to finally know the cause of my allergy. It's a relief to have found this forum. I would be very thankful for all the help I can get.
Thanks for reading.
Pernilla
Really sorry for you. For the colonoscopy, the are alternative for the preparation. I had use it without problem.
Thank you for your tricks. I was searching for something to put on the skin. I will try the sheas butter and the oil, its a good idea.
Good luck
Hi Pernilla! I am so sorry I missed your posting. I don't know why I didn't get a notification. Anyway, welcome to the group even though I am extremely sorry you have a PEG allergy. From the reactions you cited, I don't think there's any doubt you are allergic to PEG and probably all the glycols. You're doing wonderfully well avoiding chemicals in your personal care products! You're probably being careful with cleaning products as well. The more natural, the better. I basically only use vinegar, baking soda and hydrogen peroxide.
Food is always difficult. There isn't much in the way of processed foods that are safe from the glycols. Eating organic is terrific! I'm fine with preparing food at home and usually bring my own food to gatherings too since I get a lot of dermatitis reactions with any exposures.
Have you tried a fish oil supplement for your dry eyes? My husband has that condition and says the fish oil helps a bit. (He also takes prescription meds too.)
I have not had a colonoscopy because of my PG/PEG allergy. I do a yearly fecal test instead.
Please post again if you have any questions or just want to talk. IMO avoidance of all the glycols will be necessary to get your reactions under control and not needing to be on antihistimine.
Kerry
I came to this website in hope for help. My husband has had an Anaphylactic shock to a vascular closure devise used to seal the artery of which he had a heart cath preformed. They never told us they were using this device and it contains water and polyethylene glycol. He almost died and was in the hospital 3 days. The doctor called the Drug manufacture and had to ask what was in this devise, they told him same thing as Miralax. My husband has on his allergy list Miralax. The Doctor notified the FDA and the hospital has began an investigation. The Doctor ask if he can use this for journal article. This happen in October 2017, since then the manufacture has changed it's website and pamphlets and launched an approved new devise, same thing but claims its better. The FDA has not yet released their investigation for the end of quarter 2017. The Doctor said to me that he did find a heart defect that was causing my husband pain and that if he would have need a stent he would have died and they wouldn't have know why because the stents are covered with polyethylene glycol. The Doctor also told me to go home and get rid of everything polyethylene glycol. They stopped all his medicine and was going to send him home with an eppy pen until they seen that it to has polyethylene glycol in it. It's in everything over the counter and prescriptions, Tylenol, Benadryl, Dawn, Tide, I even got rid of polyester curtains and sheets. The Doctor said the next day that his phone is ringing off the hook. I called a couple of Lawyers and nobody seems interested, maybe I'm not talking to them right. I am afraid that many people will be injured or died because of lack of allergy testing and my husband quality of life is poor. We are traveling 3 hours to get patch tested. Any help you can give me, will be a blessing, God Bless, Jacquie
Ouf its terrible!
I work in a hospital, and im sure that its not really safe for people like us. The peg is not a "popular" allergy. If i want to know if a medecin contains peg, i have to read the big paper in the box. There is no way to know easily if a product contain peg or not.
I discuss with a pharmacian of the hospital. He recommand me to wear by jewel medicalert. He told me : like that, when you will become really not well, they will know its an allergy!
I hope to stay with good health and dont need stent or something like that.
For the epipen, mine dont contain peg but the allergist told me to use it anyway with peg or not because the epinephrin in will make the effect for all the allergen.
I really hope your husband get better. Take care of you
Nancy
Thanks for your reply!
I feel overwhelmed over the past couple of years. With my research PEG is everywhere, what get me the most this year is the food and vitamins. I don't know what to eat anymore. I believe it's the underlining cause of cancer in people from years of eating plastic. My husband is in full body pain everyday, headaches, breathing problems, sometimes crying, he has been through many test and no help. My son has reactions too. He's gifted Asperger's picky of what he eats. Immediately he will get flu like symptoms after eating something he always ate. Something changed it's in the flour they use to make the food.
It's hard. Note: Don't use or eat anything they advertise.
My husband was an RN, loved the medical field and helping people, it's hard to see him this way.
Jacquie
It does not sound like your husband has improved much in the last couple of years. I am so sorry you are dealing with his poor health. It is so discouraging. Have you, however, considered investigating some holistic/integrative medicine practitioners to find the root cause of his ailments? We do not become allergic to a substance unless our bodies cannot detox from them properly. The gut/brain connection is very real. The inflammation in our bodies is a direct result of an imbalance of gut bacteria where about 80% of our immune system resides. We need to heal our Leaky Gut, support the organs through the needed vitamins/minerals/micro-minerals that our bodies are lacking because of an inadequate food supply and our lack of ability to absorb some of these nutrients because of damage to our guts. Detoxification pathways may be compromised because of genetics and/or epigenetics. Conventional health care professionals do not deal with the "whole" body in order to find the underlying cause(s) of our chronic illnesses (things such as Lyme disease and its co-bacteria, parasites and yeast overgrowth, etc. ) In order for your husband to achieve a better quality of life, it might be necessary to take a new path, instead of traditional medicine, to achieve better results. Our chemical allergy alone requires that we live quite differently than we have in the past---abandon any kinds of processed foods (eat organic whole foods; avoid gluten, dairy and sugar which are highly inflammatory to the body); use natural cleaning and personal care products; avoid most pharmaceuticals (there are many natural vitamins, herbs and other supplements available which work just as well and without the side-effects of our common OTC drugs); and try to reduce the stress in our lives. It's a whole new way of thinking and living, but I have found MUCH improved health through the guidance of my naturopath and holistic health care professionals. I wish you, your husband and son the very best of luck in your journey!
Thanks Kerry,
We have gone the holistic approach with a neuro masotheraispt. He did Kentheseiology, brain cranials, keyleation heavy medal detox, vitamin supplements, adjusted his diet, after his 2nd back surgery for 3 years and after his 2nd anaphylactic, it seem to help the body pain but it was short lived, then came the severe anaphylactic episode with Polyethelyene Glycol, then to find out his allergies to fruits and vegetables and a whole list of natural and synthetic chemicals, bee glue, pine and the list goes on. Then to find out that these chemicals are in the vitamin supplements, food, prescriptions, aroma therapy, everything we touch or use in our house, and maybe that's why the holistic approach didn't work long and he was still getting sick. There is no answer and no money left, they took it all, we are the guinea pigs, the testers that throw the money to them, in hope that someone has the answer, and then come to realize that everybody did the best they could and for that I'm Thankful.
Thank you for your words of encouragement, continue your great work helping others. For us there's not much more we can do, pray and help others the best we can. This is our suffering and Our riches are in Heaven! We are thankful for the moments when he does feel good.
Jacquie
You and your husband have certainly tried a enormous amount of alternative therapies. I am extremely sorry to hear that they have been of limited help to him. It sounds like he is dealing with some very serious and painful issues. I admire your positive attitude and wish you both continued strength. Sending prayers your way...
Just as a side comment...the wheat supply has changed. It is sprayed with glyphosate right before harvest in order to dry it out. It's damaging everyone's gut.
Oh, Jacquie, I'm so sorry for all you both have gone through. It sounds like you have tried just about everything with no improvement and I'll bet you are terribly worn out. Although I have not been in your shoes, I have been to the point of desperation and ready to give up on everything.
I really did this:
My life was so hopeless that I went out in the yard and dug a big hole and climbed in it. I was done, and I figured if I made it really clear that I was ready to leave, that I would be able to just quit. After about five minutes in the hole, it started to rain. Then my dog crawled in and started licking my face. Needless to say, that plan didn't work either. I can laugh about it now, but I had tried everything to make my life work, including two days of digging a hole big enough to bury myself in, and I just couldn't make anything work. I was done.
Eventually I decided that since I had given up and had no future plans, I may as well try something that wouldn't work. I was bored, I had time, and nothing to lose.
So I made a list. I put everything I could possibly think of that I could do to feel better, no matter how outlandish it sounded or how impossible it was. The only rule was that I couldn't judge, and if it showed up in my mind, I had to write it. Every idea someone had told me, stupid, impractical or not. If it came to me, I just wrote it down. Pages of it. I still have it somewhere.
When I was done, I looked it over and put a check by anything I thought I might actually be able to do, even if it didn't work.
And it turns out there were some things on that list that weren't bad ideas, and some that I tried didn't fix things, but they led me to things that did help. And some of those things eventually led me to setting up this blog.
But I had to get to sheer hopelessness to find them.
We don't know each other, Jacquie, but what I do know is that you have enough smarts to be able to write an understandable post, you have love for your husband, and a strong desire to help you both get better. I'm not suggesting that you do what I did, but I am hoping you will find your way to safety, good food you can eat, and as much health as possible.
When you're feeling ready, I also hope that you are able to call on your inner strength to try again, and keep trying until you find some relief and some support.
In the meantime, here are two places I’ve found with some good tools, and enough free stuff to get started, or inspired:
TheTappingSolution.com has some free resources for learning to use tapping as an effective way to clear stress and worry. I found out about this when an attorney friend told me that our local courts required public defenders to learn it as a stress relief technique. I use it now and it works.
Barbara Sher (BarbaraSher.com) believes that you don’t have to ‘improve’ yourself, or feel good, or ‘think positively’ to get what you need and/or want. What a revelation!
Listen to her Ted talk, read about her Online Idea Party and see if you can help someone or if someone can help you, or read “**How to Get What You Really Want, Even if you Have no Goals, No Character, and You’re Often in a Lousy Mood,” all free. That last little booklet changed my perspective on a lot of things and I wish I’d found it years ago. I might not have ended up in that hole. . .
Please check back in and tell us how you are doing if you can.
Sending you and your sweet husband love and strength,
Amber
(PS:** The title of that book makes me laugh, and although I do believe I have some character, and some goals, I am often in an lousy mood. Unlike what you hear in most places, you don't have to change who you are or how you feel to use her tools, and I love that!)
Oh, Jacquie, I am so sorry! What an ordeal you've both had.
This discussion group evolved out of my blog, allergic2glycols.com and there are some resources and information over there that might help.
When you go to the home page at allergic2glycols.com there are several posts listed in the right sidebar about how to cope with this.
One of the most important things to know about glycols is that because they are considered 'safe,' doctors, pharmacists, technicians, nurses - none of these folks will be expecting a reaction from polyethylene glycol, propylene glycol, caprylyl glycol - they don't know it's there, it's not on the label because it's not an 'active ingredient,' (except in the case of things like Miralax). They don't know because no one has told them. It's not their fault. These compounds have been used safely for years and years and years and until recently, no one knew there were people like us.
Also, there are HUNDREDS of names for glycols. Medical professionals don't understand yet that they can't just read the label for you and if it doesn't say "polyethylene glycol," you're safe. With names like "macrogol" and "Ceteareth" and PEG-2110, we are not yet at a place in time where we can rely on doctors and pharmacists to check everything for us.
Also, because glycols are considered 'safe,' they can be added and subtracted from any medicine, cosmetic, food, or product without notice. That means you and your husband will have to become experts at recognizing the different names for glycols.
Ingredients change in even the cleanest products. DO NOT USE ANYONE'S LIST OF "SAFE" or "GLYCOL-FREE" PRODUCTS WITHOUT READING EVERY LABEL, EVERY TIME.
It's difficult, time consuming, but it is possible to live with this allergy.
I hope you'll be able to find some helpful info at allergic2glycols.com, and the folks on the discussion board here are all very supportive. They've been through a lot and can offer lots of wisdom and support. Ask questions, share what is going on, and make sure to update us about your husband's situation.
Very best of luck,
Amber
Here's a link to a list of glycol names: chickenlittleink.com/allerg...
There's a paper written by an allergy doctor that you can bring to your doctor for more information. It's here:
Thanks for replying. I did start with your website and it help me to understand and put things in order on how to talk to the medical community, doctors, nurses, pharmacist. Very informative. Thank You!
I have compiled a folder that I have researched over 200 drugs that my husband has taken over 10 years and found the substance and multiple substances containing polymers and I take it with me where ever we go. Thanks to your website. The doctor stated to me this is probably why My husband is not getting better. I told the doctor my husband has been poisoned. He had no reply just shook his head and agreed.
Jacquie
I tried to purchase the Dr.s article you suggested and it states: The patientACCESS program is no longer available. Please contact the publisher directly to request access to this article.e Doctor article. I sent and e-mail to the doctor to purchase the article, waiting for response.
Jacquie
She e-mailed me the full article!
Where can i get the Doctor's email. I sure need a copy to take to my Doctor to get tested for PEG. Do they still charge?
Thanks
Steve
Just found and downloaded the PDF
Hi. I will be brief because I do not speak English, but I am very happy to be able to communicate with people also allergic to glycol. I received the clinical diagnosis in 2016 when I turned 38. I have symptoms since I was a child and never a doctor associated them. All my symptoms were always treated in isolation and usually with medications that made me sick. When I was 35 years old I was dissatisfied with my skin and after several feeding restriction experiments, I went into peeling sessions, faced with acne treatment medications that burned my skin so much, and put on makeup to hide it. In a short time I was so sensitive to everything that I started another investigation and struggled to put in a box everything that bothered my skin, eyes and throat. Fill two boxes with cleaning products and cosmetics and try to compare the components to discover what they had in common. I would never imagine that a synthetic glycerin could do so badly.
My diagnosis was allergic dermatitis from glycol, neomycin, cobalt and nickel, but the sensitivities that it develops are extended to all irritating chemicals such as chlorine, ammonia, thinner, ethanol, etc. My symptoms: skin of the face burning of pustulas come; I instantly lose my voice if the allergen is concentrated in the air and then I have mucus in my throat; my eyes burn and I cry, sometimes I unwind conjunctivitis; My hands and feet peel and sometimes I feel hives. Not as practically nothing processed. For cleaning use soda, alcohol, vinegar, hydrogen peroxide, lauryl-based detergent and coconut soap. As cosmetics I use vegetable oils, yervas and mineral makeup. For the hair I follow the nopoo technique. Lately I am getting some cosmetics without glycol derivatives but I use them moderately. What most alludes me to the skin the physiological serum and aloe vera (I have a full planter).
I forgot to mention one more thing that deflates my skin is to make an argila mask with natural yogurt.
How do you make this argila mask? Thank you for all your helpful information!
Hi all, I'm new to this group and after over a year of dealing with severe dyshidrotic eczema or dyshidrosis, I might finally have some answers although, I am not 100% sure since allergy to PEG doesn't seem to affect people that way (based on my little reading) but so far, it seems to be the best lead.
Here is my story: I slowly developed deep itchy blisters on the sole of one foot and more recently, on the palms and sides of my fingers and on the other foot. It got very severe and led to infection on 2 occasions, preventing me from walking. I don't have a really good doctor and cannot change as there are just not many around but she gave me corticosteroid cream and is swearing by it. To her, it is eczema, there is no known cause and no cure so I have to deal with it! Sure enough, the cream is not working and is actually making things worst. After insisting for months, I finally got an allergy test done (which she was very reluctant to give me) and surprise, surprise, I'm severely allergic to PEG. As you know, it is in a lot of things, including that corticosteroid cream so no wonder it was not working! Benadryl seems also to make matter worst! Which is strange because I never had problem with Benadryl before!
Symptoms became the worst after a glass of wine or port wine, sometimes having flare ups up to 3 days later but more recently, just a few hours after drinking it. Following the result of the allergy test, I stop all drinking of alcohol and sure enough, my condition has improved tremendously. I got to read more about PEG and it is of course in a lot of alcoholic beverages as well. I've been trying to change my solid and liquid diets for PEG free ones so I'm looking for any tips, suggestions and advice you can give me! Thanks a lot!
Hi Mskin,
I can tell you that Benadryl (diphenhydramine) often contains PEG, and I searched for years before I found a manufacturer that made it without PEG. Most cortisone creams also contain PEG, so the very thing you are using to make it better is actually aggravating it.
Because it's not an 'active ingredient,' the assumption is that every cream or capsule with the same dosage should act the same way, but the inactives, for us, make all the difference.
And active ingredients can be changed anytime by any manufacturer without notice, so your only option is to read every ingredient label every single time you buy it.
Getting product inserts from the pharmacy for prescriptions or from the manufacturer are essential, although unlike over the counter (OTC) medications, prescription drug formulas are not changed as often, thankfully.
You might check the ingredients in any prescriptions or OTC things you are taking or using, including soap, conditioner, lotion, capsules or tablets to see if there's PEG in any of them. Some of us have discovered that we started itching as a result of thing we were taking internally, and that may be where your initial rash started.
I have heard that some alcoholic beverages have glycols used in the manufacturing process, but I don't drink, so I haven't experienced that issue. In that case, I would guess that reading the label wouldn't help, since it's not enough to be considered significant - except for people like us!
Please share your experience with us as you get better at dealing with all this. Check out the website at chickenlittleink.com/allerg... for specific tips some of us have found useful. You can find ways to deal with this and live well - it takes work, but it is possible!
All the best,
Amber
Hi im from canada. Speaking french so sorry for my unperfected english.
I have a diagnostic of allergy to PEG.
I made a react anaphylaxy with lax-a-day, with injection in my shoulder of depomedrol and with oraqix. The doctor find fastly and the second test (injection under skin) was positive +++++.
Now, he told me to reduce exposition because i had recently too much reaction and im too sensitive to peg.
I began to check where is the peg and i was surprise to find it in many product i use without reaction like mouthwash, toothpasth.
However, I put all that in the garbage.
My most terrible react was with oraqix (2 kind of poloxamer in "others ingredients"
I think i dont have allergy to all product with peg but dont know if it depend of the quantity or something else. I dont take chance anyway, the last react was freaking!
Im happy to find ressources, theres not a lot!
This allergy is not easy to manage.
Each person is different with allergy but its helpfull to share our tricks and knowledge on the subject.
I learn this : bio dont equal no peg so be carefull with "natural product" 
Thank you for your support
Nancy
Hi Nancy,
It can be hard to find products without glycols because there are different names for them. Some different names are “macrogols” “ceteareth” “steareth” “ethanediol” “propanediol” and “hydroxyethanol.”
You can find a longer list of names on the website here:
chickenlittleink.com/allerg...
Ask questions and we will do our best to help any way we can!
Regards,
amber
Hi. I'm Lynne. I had a burning bladder and a group in yahoo clued me into PEG side effects. I drank lemonaide..3 months of burning pain. urologist didn't know about PEG or side effects. Now I'm older Have high BP. PEG is in my BP med. I can't find a BP med that doesn't have it. I hate to go on directics (sp?) as I have stage 3 kidney. But the itching back/blisters have stumped 2 dermatologists and now an allergist...who is running tests as this can be a sign of other things...anyway I'd LOVE to get a BP med without these glycols! Any ideas?
Nice to meet you all. If any of the yahoo parents are here HI! and thanks!
Hi Lynne,
Sorry to hear you've been having such trouble!
I don't know which BP med you're on but I take Losartan. Some generics have glycols, some don't, so if your doc thinks it's a good match, you might be able to find a pharmacy that carries a version of Losartan without glycols. Take a look at the posts listed below to learn how to do that:
There's a page on the blog with one way to manage prescriptions when you have allergies. It's here: chickenlittleink.com/allerg...
To really know what is in your prescriptions, you need to learn about the NDC#. Here's a post about how to do that: chickenlittleink.com/allerg...
And here's a list of names for glycols:
chickenlittleink.com/allerg...
But it sounds like you haven't yet found out exactly what you're allergic to, so when you do, the info on the blog can help you find a way to live with it.
Hang in there and please let us know what you discover!
Amber
THANKS Linabella! I will follow the links. I have a boatload of allergies to meds...but PEG is a real winner....my bladder burned for 3 months! I don't know if that's an allergy or the crystals deposited in my bladder was the problem. Who cares....I can't take it Thanks much. And I see my allergist again...what tests are for PEG and it's cohort (what is it...it's in the J&J vaccines...polysorbate 80 I believe)? Thanks.
Thanks Amber! So you have to read all the ingredients to see if ANY of these synonyms are there? WOW that will take awhile! Is that how you do it? Look at the insert and go through every item listed to see if it's there?
it gets much easier with practice. After you look at a list of ingredients enough times, you start getting a feel for what’s OK, what’s not and what’s questionable. At first you will have to look up everything, but eventually you’ll get it. If there are things you use or take that you know are ok, you can keep a list of those ingredients that you know you don’t have to worry about.
How were you all diagnosed?
Hello everyone, I am here because after carefully documenting patterns in my body's reactions, I believe I have a strong sensitivity to glycols. I have always had sensitive, reactive skin, but could never really pinpoint any particular cause. Things were much better when I was living in Europe and using environmentally friendly, more natural products, but even then I would occasionally be sensitive and itchy.
Last year, when everyone started wearing masks to protect from Covid, and I did the same, I started getting rashes. At first, I blamed it on poison ivy (were my dogs bringing it in? I'm careful not to touch plants), then thought it could be some kind of mite, except that no one else in my house had any symptoms. The rashes have sort of come and gone, and because my skin has always been sensitive, I've just coped as best I can.
Everything came to a head after my first Covid vaccine. Shortly after, I had small blisters start to form. It looked like bug bites, and that's what the doctor gave me medication to deal with when I consulted. Except that the bug bites "spread", becoming rashes that covered probably 50% of my skin. Itchy, painful rashes. But the doctor said it was not related to the vaccine, so off I went for the second shot. And the rashes, that were healing slowly, flared and spread further. Now, I have rashes over even more of my skin, and this time, a lot on my neck, ears, my scalp...
And so has started a retroactive exploration of WHAT is causing the problem. PEGs keep coming back. In my laundry detergent, that I breathe from my mask all day (I am a teacher). On my skin from my clothes (for years I've been saying it feels like invisible bugs are in my clothes, just waiting to bite me, but no one else in my household is affected). And now, injected directly into my body.
The most logical explanation is that because PEGs are everywhere, the levels in my body are compounded from different sources, and I need to go back to green and even better than before, so that's where I am today. I stopped using any "bug bite cream," the itching lessened some. I switched my cloth mask for a disposable one, and the itching is less prevalent. I have been choosing loose fitting clothing, less contact from clothing that is full of PEGs from my detergent, and the rash is a little less intolerable. The next step is to learn to identify what products have or don't have PEGs, what products I can and can't tolerate, and figure out how to keep my house and textiles clean without poisoning myself and my family.
Next step, if all of this helps me feel better, will be to seek a doctor who can document all this. Doctors, I have found, don't listen. PEGs allergy is supposedly "very rare", but the more I speak with others, the more I hear them saying, oh yeah, I can't use that, or I sometimes get vertigo when I am exposed to ____. I suspect that these invisible chemicals are an issue for many people, but so prevalent that it's hard to tell until something really spotlights the issue.
I am SOOOOOOOO grateful to have found this group. It feels so daunting to have to reconsider every product I use. It's such a help to have support from others going through similar situations.
Best,
FiddleFaery7
Hi, I don’t officially know for sure that I’m allergic to glycols but I highly suspect it. There are 8 drugs that I have had allergic reactions to. All but 1 has PEG. Most also have polysorbate 80 and a couple also have propylene glycol. There are also some skincare products that I react to that have PEG & PG in them.
Mostly I have some lip swelling, throat swelling with constant clearing of throat needed and major hives. The only way to get rid of the hives is with a steroid pak.
Because of all this I am really scared to get the vaccine. I also have autoimmune issues.
I’m not sure what my next step is, but I’m concerned about the potential mandates and would like to have a medical exemption if possible. I’ve already had Covid-19 and did just fine. I’ve had colds that made me feel worse. Unfortunately I know that’s not the case for so many.
Hi, I first had a mysterious allergic reaction to Depo Provera, a birth control injection in 1998. I began sneezing uncontrollably and broke out in hives all over my torso before I even got to my car. I tend to break out in hives mysteriously on occasion but couldn’t make any connections. In 2013-ish my daughter was prescribed Miralax and I thought I would give that a try for “good bowels” one night and broke out in pretty serious hives all over my legs. That reaction was really the key for eventually putting everything together. In 2017 I had to go to the emergency room because I was quite sick with the flu and had taken Advil Liquid Caps and my lips began to swell, which was quite scary. Until this last year I thought I had a bunch of unrelated allergies to random products. It wasn’t until I heard reports of people being allergic to the COVID-19 vaccines and I wanted to know as much as I could about why. I ran across an article that said experts believed it was the Polyethylene Glycol causing the reactions and I knew that Miralax was mostly just Polyethylene Glycol and I was definitely allergic to Miralax. Then I began to look at all the things on the list I give to the doctor that I’m allergic to (including the Depo Provera) and they all have this one ingredient in common. It’s been a huge relief on one hand because I have no doubt that I’m allergic to it but on the other hand it makes life a little complicated. I was able to get the JnJ vaccine and had no bad reactions other than a good immune response and am incredibly grateful that I figured out I was allergic to PG before getting a vaccine. I’m not used to checking everything for PG yet and recently have had 2 sets of hives, one for a medication I was taking for several months with no reactions (and didn’t check the ingredients until I broke out in hives), and second, some gummy vitamins advertised on the internet that do not say anything about PG on the label but I am having a slight reaction and suspect that the “natural flavors” may have a hidden PG ingredient. It’s definitely been a journey and I will be bringing it up with my doctor at my next appointment. It’s nice to know I’m not alone with this.
You are not alone - and it takes some time to learn how to manage it safely, but it's worth it!
