Becoming A Chemist And Frustrated!

[DinaB]

Hello all,

I don't post here often, but I am here regularly as I think most of you know more than some doctors. I believe in what I read here and take this site very seriously.

My one major complaint is that since I started having allergies and symptoms to allergies, I've done so much research I feel like I can be a chemist, or a nutritional expert of some kind. The most frustrating part is that once I feel I have it all worked out and KNOW what I can and cannot have, some little thing will creep into my world and cause all sorts of reactions - - leading me to become a detective again.

The FDA doesn't make it any easier either. If everything could just be labeled simply, we would not have to spend numerous hours researching and contacting manufacturers to dissect every ingredient where it originates from.

I was operated on last Tuesday. I spent two miserable days in the hospital itching, rashes and completely out of my mind. Turns out I was having a reaction to the anitbiotics as well as the pain killers. Every time I had to try a new pain killer, there was me or my husband looking it up online to make sure it was gluten/lactose/soy/egg free. I couldn't even have regular anesthesia because it contains egg and soy. I had to use an older anesthesia which takes a longer time to get out of your system and has lots of unpleasant side effects.

My husband had to bring a cooler of food as well as sheets and blankets for the hospital bed, as I also have a horrible fragrance allergy. Every time someone came in my room to take vitals they were swimming in perfume. Finally a note was posted on my door and the only people allowed in were my husband, doctor, and nurse -- all had to be perfume/cologne free.

Sorry for ranting and raving, but I am finding it thoroughly exhausting trying to keep my environment "free" of irritants. Every I turn around I find more and more things that cause a reaction to me. Do any of you find that the more you food and items you eliminate the more you become overly sensitive to things or is it just me?

What also worries me, as well as my family is what happens if I ever need to be hospitalized and NEED pain killers. I went through three and my doc gave up. I was in severe pain for three-four days cold turkey after major surgery...is this normal?

Truly frustrated and tired of playing a detective.

[lovegrov]

I truly feel for you and your problems, but you also have to realize that only a very tiny miniscule itsy-bitsy percentage of people are faced with what you're faced with. For instance, I can't eat gluten but have no allergies to anything else. Labeling every single ingredient as to exactly what goes into it and where it all comes from (both of which can change constantly) would cost manufacturers a good deal and raise the price of everything significantly. Some products would have to increase the size of the package simply to accommodate the label (or else you'd have to carry a magnifying glass). It's just not practical.

richard

[ravenwoodglass]

I just got off of a long phone call with a drug company making sure a script I was given was gluten free. I agree with you that the makers of food and drugs really need to label with more accuracy and hopefully someday that will be a reality. We need to know what is in our food and in our drugs and IMHO there is no reason why that should not be done. Makers need to know what is in the ingredients that are used in a product and those ingredients need to be disclosed. If they can use allergy labeling for eggs, soy, dairy, wheat etc. there is no reason that other gluten ingredients can not be disclosed. This is particularly important with drugs as IMHO far to many times the ingredients that cause side or adverse effects with drugs are not the drugs themselves but the binders and allergans that are used in them. I am sorry you went through this and I would suggest that you continue to research and try to get a list of painkillers and antibiotics that you will be able to tolerate and give them to your doctor and also carry it in your purse in case of emergency. In additon the FDA has an area on it's website to notify them of adverse reactions to drugs that people are given. You should go to that website and notify them of the reactions you had and the reason you had them. If everyone who was made ill by a binder or vehicle that was in a drug did that it might help them develop alternatives that less people would have those reactions to. I realize that different people react to different substances but even if they just got gluten out of our meds it would make a big difference.

[ang1e0251]

I wonder if a local compounding pharmacy could make you medicines you could tolerate. If you could work with your doctor while you are well to find a pain killer or two you could tolerate that was specially formulated just for you, it would go far helping you in an emergency.

[mamaw]

Hi Dina

I feel your pain!I can not have any narcotics as my throat sweels shut in minutes... gluten-free or not.

I have had two major surgereries plus one about 40 minutes long.... no narcotics. I can tolerate versaid ( not a narcotic) & that is it. I feel everything & know & feel every cut the doctor makes, the drilling & so on. I just pray & pray . I always tell the doctors to work fast & make no mistakes. I take no pain medicine after except for tylenol with codiene, which puts me to sleep. Other than that it is like drinking water. My recent last procedure the doc asks if I drink, I said no & he suggested I start!!!! Whiskey may have to become my best friend...........

I'm also one that can not tolerate hospital bed sheets, hives instantly. I never thought of taking my own I figure they would tell me they are not santized & wouldn't permit it. I will try if ever I need in a hospital again. Hoping not!

Our hospital has next to nothing for gluten-free & they don't care.. so we too carry a gluten-free food supply & water as I don't drink city water....they have allowed my husband to heat my gluten-free food in a micro....

I react to planet earth so I'm with you , no smoke, no perfume, no pumping gasoline. My husband calls me a sniffer dog as I can detect things way before anyone else...

I'm told there are a few of us super sensitive beings in the world!

blessings

mamaw

[DinaB]

Thanks everyone for posting and the ideas. I guess I've been in total denial about being "super sensitive" as it's another label I didn't want to give myself.

Something to make you laugh...I've been home from the hospital since last Thursday. I have to say the first days being home and not being on pain meds were the worst. However, feeling better and able to bend (stitches across abdomen) I decided to shave. Well, the maker of the razors decided to change it's "moisture strip" and add a vitamin oil to it. We order these razors in bulk as my husband shaves his head, and the cost is much cheaper to us. We never noticed the new packaging. Two days ago I developed a rash under my arms and down my legs. Going out of my mind. I realized yesterday when I went to open the new razors and they were marked "new" all over the place. Once I showered and reshaved I was fine.

The point is I know that companies are able to change their packaging at any time, BUT, if I didn't find out here on this site that Vitamin E is derived from wheat, I'd be beating my head against a wall still trying to figure out what is causing my symptoms.

All I am asking for is clear labeling. Is something is derived from wheat, then just say it!

[ravenwoodglass]

Thanks everyone for posting and the ideas. I guess I've been in total denial about being "super sensitive" as it's another label I didn't want to give myself.

Something to make you laugh...I've been home from the hospital since last Thursday. I have to say the first days being home and not being on pain meds were the worst. However, feeling better and able to bend (stitches across abdomen) I decided to shave. Well, the maker of the razors decided to change it's "moisture strip" and add a vitamin oil to it. We order these razors in bulk as my husband shaves his head, and the cost is much cheaper to us. We never noticed the new packaging. Two days ago I developed a rash under my arms and down my legs. Going out of my mind. I realized yesterday when I went to open the new razors and they were marked "new" all over the place. Once I showered and reshaved I was fine.

The point is I know that companies are able to change their packaging at any time, BUT, if I didn't find out here on this site that Vitamin E is derived from wheat, I'd be beating my head against a wall still trying to figure out what is causing my symptoms.

All I am asking for is clear labeling. Is something is derived from wheat, then just say it!

just a short note on the shaving products. I have had good luck by shaving immediately after I shower while the hairs are still soft and I don't have to use any shave cream at all.

[mysecretcurse]

I can relate a lot, especially to:

My one major complaint is that since I started having allergies and symptoms to allergies, I've done so much research I feel like I can be a chemist, or a nutritional expert of some kind. The most frustrating part is that once I feel I have it all worked out and KNOW what I can and cannot have, some little thing will creep into my world and cause all sorts of reactions - - leading me to become a detective again.

I'm going through this atm and have gone through it many times. It sucks so bad. For me, I always start thinking I am developing some other food intolerances and then nope, later on I usually find out there was gluten in something. Usually something that shouldn't have gluten in it at all. So annoying.

I really feel for you on the fragrance thing. You couldn't be around me, I love perfume. That must be really hard.

[DinaB]

I can relate a lot, especially to:

I'm going through this atm and have gone through it many times. It sucks so bad. For me, I always start thinking I am developing some other food intolerances and then nope, later on I usually find out there was gluten in something. Usually something that shouldn't have gluten in it at all. So annoying.

I really feel for you on the fragrance thing. You couldn't be around me, I love perfume. That must be really hard.

The fragrance thing came out of no where. I LOVE perfume! I love my hair to smell pretty, I love my clothes to be soft and smell nice. Everything we use smells like nothing. It is so sad and I hope it doesn't last long. I guess we all have our issues to deal with, but the one thing I appreciate is being able to log on here and see that I AM normal and there are plenty of people out there with my same issues.

Be well.

[RollingAlong]

Shortly after I went gluten-free, the allergist told me I was allergic to formaldehyde and phenols (ie fragrances.)

For what it is worth - In the last 6 months I started having more and more problems with fragrances, that is, the allergies seemed to be getting worse.

In the last month, I have become much less sensitive. I've only made 2 changes - more vitamin D (I had tested as a bit low) and taking probiotics.

hope this helps.

[DinaB]

Shortly after I went gluten-free, the allergist told me I was allergic to formaldehyde and phenols (ie fragrances.)

For what it is worth - In the last 6 months I started having more and more problems with fragrances, that is, the allergies seemed to be getting worse.

In the last month, I have become much less sensitive. I've only made 2 changes - more vitamin D (I had tested as a bit low) and taking probiotics.

hope this helps.

That is interesting about the Vitamin D. I will have to try that. However, I am allergic to yogurt and all probiotics. I tested against all of those chemicals and nothing came up. All of it is mostly inhaled.

[RollingAlong]

It would be interesting to know if the vitamin D plays a role for you. I hope you will post back to this thread. Good luck!

[DinaB]

It would be interesting to know if the vitamin D plays a role for you. I hope you will post back to this thread. Good luck!

I'm curious as to what kind you take. Since I have other allergies, it has to be free of Milk, Gluten, Egg, Soy, etc. I haven't had much luck finding vitamins at all. Lots of hidden ingredients.

[RollingAlong]

I have not checked these products for anything except gluten. I have used various combinations of these three:

Biotech Vitamin D3-50 (50,000 IU - 100 Caps)

Carlson Solar D Gems Vitamin D3 4,000 IU Soft Gels

Carlson Vitamin D Drops -- 2000 IU - 11 mL

I have read that some peope absorb the oil based forms of vitamin D better. I read this on the Heartscan blog. I've also read that you can take vitamin D only once a week and that's ok. So the 50k capsules aren't as crazy as they look at first. I read that at the Vitamin D Council website.

Good luck finding a product that works for you, vitamin-d wise, and I hope this helps with the fragrance sensitivities.

[ghostcat]

I wanted to respond to the pain killer part. When I was 17 I had major oral surgury (both my jaws were cut in half and it was approx 6 hour surgery? not sure it was a long time ago,) but I've always just vomited my brains out on pain killers. When I woke up in the hospitol they had a tube down my nose to my tummy to stop me from vomiting and had some pain killers in my IV, but again limited, to stop me from vomiting because my jaws were wired shut. When I went home, I had NO pain killers, jaws wired together. I actually do not remember the pain so much, overall I was pretty miserable....but I lived through it. That's just my experience anyway, you're not alone.

I do think Dr.'s overmedicate A LOT and I think the body has many natural ways of coping and healing. I know it's not a miracle cure or as good as the real thing (REAL DRUGS!), but I do put a lot of stock in things like meditation, natural alternatives and a positive mental attitude in dealing with pain. I think we're brain washed as patients to expect things from our own bodies and tune out what we're really feeling. In the last few years I had needed a root canal and of course, couldn't take pain killers and vomited my way through a few different antibiotics. They had to stop mid-way through drilling so I could puke! When they got me on an antibiotic that didn't make me sick (something they normally prescribe to cats? who knows....it seemed really old and obsolete? lol!) and they managed to drill into my tooth and relieve the pressure, I was fine and didn't even need a pain killer if I could have taken one. The local anastesia wore off and I was stuffing my face that night, but to hear it from the dentist......I should have been a lot of pain.

Hello all,

I don't post here often, but I am here regularly as I think most of you know more than some doctors. I believe in what I read here and take this site very seriously.

My one major complaint is that since I started having allergies and symptoms to allergies, I've done so much research I feel like I can be a chemist, or a nutritional expert of some kind. The most frustrating part is that once I feel I have it all worked out and KNOW what I can and cannot have, some little thing will creep into my world and cause all sorts of reactions - - leading me to become a detective again.

The FDA doesn't make it any easier either. If everything could just be labeled simply, we would not have to spend numerous hours researching and contacting manufacturers to dissect every ingredient where it originates from.

I was operated on last Tuesday. I spent two miserable days in the hospital itching, rashes and completely out of my mind. Turns out I was having a reaction to the anitbiotics as well as the pain killers. Every time I had to try a new pain killer, there was me or my husband looking it up online to make sure it was gluten/lactose/soy/egg free. I couldn't even have regular anesthesia because it contains egg and soy. I had to use an older anesthesia which takes a longer time to get out of your system and has lots of unpleasant side effects.

My husband had to bring a cooler of food as well as sheets and blankets for the hospital bed, as I also have a horrible fragrance allergy. Every time someone came in my room to take vitals they were swimming in perfume. Finally a note was posted on my door and the only people allowed in were my husband, doctor, and nurse -- all had to be perfume/cologne free.

Sorry for ranting and raving, but I am finding it thoroughly exhausting trying to keep my environment "free" of irritants. Every I turn around I find more and more things that cause a reaction to me. Do any of you find that the more you food and items you eliminate the more you become overly sensitive to things or is it just me?

What also worries me, as well as my family is what happens if I ever need to be hospitalized and NEED pain killers. I went through three and my doc gave up. I was in severe pain for three-four days cold turkey after major surgery...is this normal?

Truly frustrated and tired of playing a detective.

[lisa25]

I'm curious as to what kind you take. Since I have other allergies, it has to be free of Milk, Gluten, Egg, Soy, etc. I haven't had much luck finding vitamins at all. Lots of hidden ingredients.

I have been researching vitamins and found that Solgar's Vitamin D3 is free of yeast, soy, gluten, and dairy. It doesn't say free from egg, but doesn't look like it is in the ingredients unless it is disguised as something else. If you go to their website they have images of all their product's labels that lists what it is free of. I haven't tried these yet, but plan to.