PEG allergy, new to this and struggling with an allergist who doesn't know what PEG is?

[River-daughter]

Hi, I'm new to this after having a reaction to PEG in a shot. The allergist (it took me ages to find one in my area) assured me when I called that they could test and consult for PEG allergies, but opened the actual appointment by saying I was their first ever patient with this allergy-- and then went on to tell me that they couldn't test for it, and that polyethylene glycol isn't PEG so I could get the current mRNA shots (not true, I thought?). The doctor went on to look up everything I asked during the appointment, and ended by saying they had no idea of the answers to any of my questions but assured me it wasn't genetic because it was a drug allergy. I don't know what to think at this point.

I wasn't offered a follow-up, but was told to call the office after I got the vaccine to tell them "how I did." They did prescribe me an EpiPen, which is good, but I feel so let down. (I have no plans to get an mRNA vaccine at this point, and the J&J is out in my area, so that won't be happening any time soon.)

I guess I'm a bit on my own for now, so I've been trying to eliminate PEG from my life in any way I can. I've already found some personal care and makeup brands (Tom's of Maine, Ilia, Juice Beauty, Hand in Hand, Billie Body Brand) that openly state they do not use any PEGs in their products, but it's been a whole thing trying to email back and forth with larger companies that do not seem to know exactly what their own products contain. Nor am I confident that their own information is entirely accurate, given all the out-sourcing they do and the constant formula updates. I've taken to attaching a document with PEG synonyms from ChemIndustries to my inquiry emails, in the hopes that it'll at least help them provide accurate information. Finding feminine hygiene products has been the most difficult part so far, and I'm still stuck on shampoo/conditioner/bodywash products. Any pointers or suggestions would be much appreciated!

I'm looking for a new allergist, but nobody seems to know a thing about PEG allergies. I have so little (almost no) information on the foods that PEG is in, but I've been trying to learn. I do live near a compounding pharmacy so I have hope that with time I'll figure everything out. Anyone else been in the same boat? Does it ever get easier? Thanks all.

[Rissa_L]

Hi! I had a severe reaction to the covid vaccine and it’s been about 2 months and I haven’t found many answers either. But I did end up starving myself of nutrients since than.. I ended up going to the hospital a month after for low potassium and other things. They told me that the vaccine has nothing to do with foods but now I’m back home with a eating disorder I never thought I’d have because my reaction made me think I’m allergic to foods too. Weird isn’t it? But I don’t know if anything in the vaccine would have anyrhing to do with food... but anyways I’m on the same boat as u to finding an allergist. I’m in the NY/NJ area and it’s very hard. I haven’t even found a compound pharmacist so that’s good you have one by you. And thanks for listing some make up brands because I actually struggle too with finding hygiene products for women! If you find anything please let me know! We can email or message on this website. Also, as for shampoo and soaps I been using some baby shampoo for my hair and Aveeno for my body. If that helps. A lot of baby products are meant for sensitive skin so usually the harsh chemicals Arent there. I hope you find all the answers you need soon. Also if u need anyone to talk to or if you want to research things together I’m here.

[Rissa_L in reply to Rissa_L]

Also, random question but since your reaction to a shot, I don’t want to assume it was a covid vaccine shot but r u able to eat normally with no problems?

[River-daughter in reply to Rissa_L]

Rissa, I'm so sorry to hear about your ordeal. It really is hard at first. <3 It wasn't a Covid shot, it was actually PEG-asparagenase chemotherapy for me. I developed a rash/hives after receiving it, but it was never clarified that I was actually allergic to the PEG in the shot. So I assumed I'd reacted to the actual chemo drug and carried on using my current products. Because of that, I was very sick in waves for years without knowing why and eventually had my throat start to close up after taking an over the counter medication containing PEG. At this point I saw an allergist, and I'm extremely lucky not to have had an anaphylactic reaction yet.

I was afraid at first of running across food/meds containing PEG by accident, especially because it appeared my reactions were getting more severe over time. In particular, ingesting it made me VERY sick, for days. It completely incapacitated me for a week or more at a time.

Due to this, I did avoid all but whole foods for a couple of days out of fear, but soon learned to read labels using a search for PEG on ChemIndustries' website, which lists all the synonyms for PEG. I've copied and pasted the list to my computer, have an EpiPen and am now confident that running ingredients through a quick "find" search on my list can help me find something suitable. The compounding pharmacy near me can make me any medication they can get ingredients for as long as I have a doctor's note/prescription, which adds to my confidence.

When I eat out, I avoid sauces and other overly-processed items just in case. For fast food I have personally found that Chik-fil-A regular nuggets, waffle fries, Chik-fil-A sauce, lemonade and frosted coffee do not make me react. I've checked their ingredients list, and they appear to be PEG-free at the time of writing. I generally stick to that when I'm out and caught short, but the experience may of course differ for you. Pessario's pepperoni pizza (and a few other items there) are fine for me too. I don't think PEG isn't in many foods, but PG (propylene glycol) is. I do not appear to be allergic to PG, only PEG.

I'm very lucky in that my allergy seems to be only to PEG at this point, although I'm still trying to find somewhere to get tested to rule anything else out. But I find that when I avoid PEG in my products, food, etc. my health has completely bounced back. It's like night and day. I had always put my poor health down to the years of chemo I received taking their toll on my body, but I feel like my old self again after finding this out, so I now know that wasn't the case.

Allergies can be extremely stressful, and we can all use support every now and then. Have you had your allergy diagnosed? I know a lot of places can't test for PEG, but I've heard John Hopkins (and I know Mayo Clinic) can test for it. I know Mayo doesn't accept all insurance, so it can be expensive if you're on a plan they can't bill. If you're struggling, have you tried talking to a dietician? They can probably help you out with putting together a healthy and safe plan, working with your allergist or immunologist once you're diagnosed. It's something I'm looking in to myself as I need to up my iron and Vitamin B12, but the supplements are tricky for me because the ones I was taking contain PEG.

[kerrykuzak]

Write to me at [e-mail] if you would like a paper I wrote entitled "Living with a PG/PEG Allergy".

[River-daughter in reply to kerrykuzak]

Thank-you, I have emailed you! ☺️

[gothchiq]

In foods they tend to add propylene glycol, and then PEG into medicines and personal care products. Always read the labels, and avoid any type of pastries or cakes from bakeries or delis or boxed mixes because PG is in all the mixes and icings. I, too, have been shocked at how little doctors know about this increasingly common allergy. Avoid sodium or ammonium laureth sulfate in soaps and shampoos etc because that, too, is a type of glycol. (Source: EWG skin deep database, when you click on "synonyms" you can see that.)

[River-daughter in reply to gothchiq]

Thank-you! I have a PEG allergy, but don't know if it always comes with an allergy to PG as well. I know they're similar, but so far I don't seem to be reacting to anything with just PG (although it's hard to tell because I'm still weeding PEG out of my products- sometimes it isn't listed as an ingredient in pharmaceutical inks and coatings, for instance). A pharmacist told me that you can be allergic to either the polyethylene or the glycol, and I'm not sure at this point which it is for me. I'm trying to get tested; any info you have would be appreciated!

[Shiloh1]

First, PEG is polyethylene glycol. If you have determined that you are allergic to PEG, CDC guidance, last I looked, was your vaccination with Moderna or Phizer vaccines is contraindicated. The JnJ vaccine contains the structurally similar polysorbate 80 which, in some, is cross reactive.

Make sure your pharmacist knows about your allergy. I have had multiple doctors, even though they knew about my allergy, prescribe me meds containing PEG.

What will make it easier is finding the products you can use and sticking to those products.

A qualified allergist can confirm your allergy by skin prick test.

[River-daughter in reply to Shiloh1]

Thank-you, it's good to have confirmation. I'll keep looking for a qualified allergist; my search has led me to Mayo Clinic and John Hopkins at this point, as all my local allergists/immunologists seem to be unfamiliar with my allergy to the point I can't safely rely on their advice. Thanks so much!

[Shiloh1 in reply to River-daughter]

Dr. Adkinson atJohns Hopkins is a wonderful doctor very familiar with this allergy. I would highly encourage you to contact him. He is a good man and imminently qualified treat you. I would highly encourage you to contact him.

[River-daughter in reply to Shiloh1]

Thank you, I will contact him as you suggest!

[River-daughter]

I'm replying to my own comment with some of my favorite PEG-free brands and products. I don't react to any of the below, but my allergy appears to only be to PEG, not PG or other glycols. You may react if any of these products contain PG or other glycols. I have not checked these for anything but PEG.

(Note: Always check labels because formulations change.)

From my research and at the time of writing, the following five brands openly state they are PEG-free across the board and I do not react to any of the products I've listed; but you should always, always double-check!)

1) Tom's of Maine: (available on their own site, at most retailers and Amazon)

Beauty Bar soap in Lavender and Shea, and Orange Blossom

Antiperspirant/Deodorant in Coconut Lavender

Anti-plaque flat dental floss in Spearmint

Naturally Clean toothbrush

Fresh Mint Whole Care Anticavity Mouthwash

Whole Care Natural Toothpaste with Fluoride in Peppermint

2) Ilia Beauty: (available on their site and Amazon)

True Skin Serum Foundation (sheer to light coverage)

(This makeup brand makes other products too, but I haven't personally tried them or checked the labels, so can't say if they're reactive for me. The brand says they don't use PEGs. Always double check.)

3) Juice Beauty: (available at Ulta)

Phyto-pigments Flawless Serum Foundation (medium to full coverage)

Phyto-pigments Illuminating Primer

Phyto-pigments Perfecting Concealer

(They also make a ton of other makeup and skincare products, but I haven't tried these or checked the labels; the brand does say they don't use PEGs, but I always double check.)

4) My Billie

Razors and razor refills

Shaving cream

(They also carry lotion, dry shampoo, body wash, lip balm and makeup removing wipes, but I haven't tried these or checked the labels; the brand does state they don't use PEGs but I always double check.)

5) Hand in Hand Sustainable Suds:

Hand soap in Lavender and Mandarin Orange

(They also carry body lotion, body wash, bar soap, hand sanitizers and scrubs, but I haven't tried these or checked the labels; the brand states they don't use PEGs, but always double check!)

Hope this helps!

[Ang9259]

Sorry you are dealing with this allergy......it’s so frustrating. 😔 I am able to use Seventh Generation feminine products. Check them out and see if they would be safe for you!

[River-daughter in reply to Ang9259]

Thank-you so much. I went ahead and bought some, and can confirm that they don’t make me react. Much appreciated!

[Ang9259 in reply to River-daughter]

Happy to help! 😊 We are all figuring this out!