Work Week Random Cc

[GlutenFreeManna]

It just makes me want to cry to know that there are others like me out there. Thank you for posting. I swear, sometimes I feel like others think I'm a looney tune because of how I have to avoid wheat at such an extreme level. (((((hugs to you for posting))))). Sometimes, in my presence, my husband and children will be trying to explain my wheat allergy to clueless people, and it is a little awkward to watch the confused faces of the listeners. My family's favorite example is to explain how wheat is in everything, like shampoo. I swear, nobody gets this. I should talk to my family and tell them to dumb it down to bread, cookies, pasta, cake...stuff like that. They will sort of get that. They usually ask in an excited voice "there's wheat in cake????" Oh the horror....LOL.

I am truly blessed that I have such a great family. My kids do not hestitate to ask people to put away things like cookies when we are in waiting rooms. My kids get a little aggressive about it! They are 12 and 13 years old, and are not afraid to confront people when it comes to my safety. God Bless them...LOL. Someday someone won't comply, and I'll have to explain to them that they really do not have to and there is nothing we can do about it. But, so far, everyone listens to them.

I'm leaving on my trip in the morning. I hope my new masks are in the mail today. my current one is getting old and worn. I'm pretty scared to board the aircraft, but my doc did give me a second epi-pen yesterday....so that helps.

Boy, your milk allergy sounds bad. So, you have to take the same precauctions with milk products as you do with wheat? That must be very very difficult. Milk is everywhere too. We are a milk and wheat nation. In fact, to people from other countries, we smell like sour milk or stinky cheese because of our consumption here. Crazy question. Since you are dairy free, can you smell the milk coming off of people? Especially when they are sweating?

Funny you should ask that, I can smell milk strongly only when I'm around a lot of children or when I walk by the cheese section. I just figured the kids were drinking milk a lot and that's why I smelled it. I've only had the dangerous allergy since Feb this year and I still crave cheese like crazy. It's so strange to crave somethign that could kill me. I tested it four different times when the allergy first got bad and even tested goats milk because I couldn't believe after eating it my entire life (30 years) I could really develop such a serious allergy to milk. Each time I ate it my throat started to swell shut within 20 minutes. Fortunately I was able to swallow enough benedryl I didn't need to go to the ER, but my dr said my reactions could get worse and gave me an epipen presciption just in case next time my throat swells closed faster than 20 minutes. I acidently put butter on a piece of corn bread once and only let it touch my lips before I realized what I had done. I spit out everything and washed my mouth really well and my lips still tingled and swelled up twice their normal size. Our house is now 100% dairy free to prevent that mistake. We skipped traveling to see family at Easter this year because of the milk allergy thing. I was so scared of acidentlly eating something with milk for a long time. Now I've sort of gotten used to it but I don't like to be around people eating things with lots of milk or cheese--like pizza. Kids eating pizza and then running around touching everything in sight is my nightmare. Gluten and dairy in one deadly touch!

I have not traveled since the milk allergy started but I'm going to have to eventually. I used to love to travel. I hope your trip is uneventful and you arrive safely without needign your epipen!

[T.H.]

GlutenFreeManna,

So sorry that ones getting you. So scary! Do you know which protein in milk you react to? And did your doctor mention latex to you? I have a friend whose son has a severe dairy allergy. They thought he started reacting to latex, too, and then found out that many latex products have casein added. Since you're reactions have worsened, I thought I'd pass that along.

There's just a little study here, of testing for casein in latex gloves

( Open Original Shared Link ).

Many here find they have sensitivities to other things than just gluten. It is worth investigating.

That is so true. I think sometimes that's one of the most frustrating things about being in this position - you just don't KNOW what the problem is, not in a way that we can test and point to it and say, 'See! This is what the issue is! Now we know. We can go home and know exactly what to do to be well and never worry about anything else.'

And if we can't know, I think people in our position are always having to, hmmm, be more vigilant, I suppose? Constantly checking and rechecking our assumptions and theories, because if we screw up, we're the ones who'll get sick.

We end up having to play self-diagnosis so much more, and with fewer tools, and the reactions can so easily be tangled up with each other, or resemble each other, that it seems to take so long to get it all sorted. And so many of these things can develop at any time, so even when we're feeling more comfortable, something new comes up (like GlutenFreeManna's dairy allergy, for example.) and bites us in the butt.

Part of me wonders if, someday, I'll turn around and find out that all I think turns out to be wrong. But, if that happens, I'm prepared for that, because I also know that I'm doing the best I can, but I only know so much.

I thought I had horrible allergies that were impeding my breathing, and it turned out to be that stupid vocal cord thing. Seriously - who would think that? I thought I was having allergies and intolerances to all sorts of foods, based on my reactions, and it turned out to be cross contamination by other allergens, sometimes, or by gluten sometimes. Once I started being able to tell the symptoms apart, and started avoiding as nearly as I could even the possibility of cc, then I healed and felt better.

And I figure that's what's important in the end. I'm so glad this thread was started, too, because allergies or cc avoidance or whatever - we're all having to avoid crap that no one else usually even worries about. For whatever reason, it makes us ill. And that matters, you know? At this point, I don't really care if someday, a scientist says: Oh, there's this little known protozoa that lives on wheat and can't be killed, ever, and some people react horribly to it. You're not reacting to wheat, you're reacting to this.

I'd have no problem with that, as long as my actions are keeping me healthy, you know what I mean? Because one thing that we here in this forum do well is pay attention to our bodies, IMHO. We have to make educated guesses about WHY we're reacting, but we definitely notice that we ARE reacting, and we do our best to track down what contact/situations/foods seem to cause it.

I totally agree with Trish_Trish - it's wonderful to not feel so alone. Being able to talk to someone who understands what it feels like to know that once you touch something, you'd better not touch your mouth unless you've washed it? That's so rare that it's really kind of a huge relief.

My husband really couldn't get it, how nerve wracking it can feel, especially if you are out of your house and have to get food. You start looking at old counters and plastic oven knobs and you're wanting to freaking just wear gloves, I swear!

I told him once: imagine gluten is poo, hon. Think about powdered poo in the air from the poo bakery, landing places you can't see throughout the store, kicked up when people walk by, on products they touch, on their hands that they touch keypads with, doorknobs with, computer keyboards with.

Think of that, and tell me how careful YOU'D be with putting you hand to your lips without washing it.

[YoloGx]

.....I think sometimes that's one of the most frustrating things about being in this position - you just don't KNOW what the problem is, not in a way that we can test and point to it and say, 'See! This is what the issue is! Now we know. We can go home and know exactly what to do to be well and never worry about anything else.'

And if we can't know, I think people in our position are always having to, hmmm, be more vigilant, I suppose? Constantly checking and rechecking our assumptions and theories, because if we screw up, we're the ones who'll get sick.

We end up having to play self-diagnosis so much more, and with fewer tools, and the reactions can so easily be tangled up with each other, or resemble each other, that it seems to take so long to get it all sorted....

.....I thought I was having allergies and intolerances to all sorts of foods, based on my reactions, and it turned out to be cross contamination by other allergens, sometimes, or by gluten sometimes....

I'm so glad this thread was started, too, because allergies or cc avoidance or whatever - we're all having to avoid crap that no one else usually even worries about. For whatever reason, it makes us ill. ....

I totally agree with Trish_Trish - it's wonderful to not feel so alone.....

(using poo as a metaphor for gluten dust:) Think about powdered poo in the air from the poo bakery, landing places you can't see throughout the store, kicked up when people walk by, on products they touch, on their hands that they touch keypads with, doorknobs with, computer keyboards with.

Think of that, and tell me how careful YOU'D be with putting you hand to your lips without washing it.

Hi Shauna,

Its nice to see you on this thread. I love your image about the pooh dust by the way!!

I started this thread due to my own frustration with increased sensitivity. Since early August I started getting glutened from CC far too frequently--my bf too! We are both far more vigilant now and for the first time in over a month we are having an actual weekend where we haven't been glutened from cross contamination! So the vigilance about where we put our hands and washing them umpteen times a day is paying off. Thankfully!!

I am meanwhile making other discoveries. I started taking this phenol solution I was given by my allergist in late July, and I now believe its been poisoning me. I have been off it two days and feel so very much better! It seems she thought that by having a small amount each day it would de-sensitize me. Instead it made me sick and more vulnerable to getting glutened as well as more likely to get problems from salicylates and heavy phenolic foods.

Instead I need to get more sulpher into my system. I started taking a sulpher homeopathic and it is helping me big time. Plus am now taking more epsom salt baths--which for me and people like me is a biggy.

I plan to send away for a No-fenol product which is supposed to really help alleviate this condition. It seems many of my "allergies" aren't really allergies, they are instead a reaction due to my not being able to process phenols--of which salicylates are a sub-group. The sulpher helps balance the body when this kind of condition exists.

One reason this condition is difficult to deal with is that it is one more below the radar--since the theory goes that only children get it. This apparently is not as uncommon a condition as I was led to believe--its just not dealt with very often by the medical establishment. And yes it often goes together with celiac or severe gluten intolerance.

While investigating all this, I ran into various products that also help make one less sensitive to gluten such as Glutenzyme. The thing to look for apparently is "DPPIV enzyme activity and at least 2 other types of protease enzymes to handle the protein component. Also need carb. enzymes such as amylase and glucoamylase. That plus a more broad spectrum enzyme product for all other foods tends to be quite effective in dealing with gluten."

I personally have to be careful of which enzymes I take due to the phenol problem, so I have to avoid plant enzymes. So today I got some porcine pancreatin with amylase, protease and lipase since it has helped me in the past (Pancreatin by NOw foods). I plan to send away for phenol absent enzymes. If anyone is interested wherefrom, just ask.

For those who want to handle milk products better, "lacto" by enzymedica is said to be a good starter enzyme. If you have near anaphalctyic shock however you might want to think twice about using that cure, eh?--lol!!

There are likely homeopathic remedies that could help reduce one's reactions to milk and gluten instead however--which I want to investigate--especially ones made with glycerin.

Certainly the homeopathic sulpher is proving to be very helpful for my phenol problem. I am starting to feel more like a person again and the eczema is reducing plus my sleep was sound these last two nights. A seeming miracle. Hurrah!! I actually woke up today and felt more alert than I have in a long long time.

As I find out more, I will post the results here.

Point being--many of us super sensitives can find help if we really look for it, even if it is like looking for the proverbial needle in the haystack.

[padma]

I use Pure and gentle baby wipes. They are fragrance and alcohol free. However, I didn

[GlutenFreeManna]

GlutenFreeManna,

So sorry that ones getting you. So scary! Do you know which protein in milk you react to? And did your doctor mention latex to you? I have a friend whose son has a severe dairy allergy. They thought he started reacting to latex, too, and then found out that many latex products have casein added. Since you're reactions have worsened, I thought I'd pass that along.

There's just a little study here, of testing for casein in latex gloves

( Open Original Shared Link ).

I don't know what protein in milk I'm reacting to, but I had severe reactions to yogurt, plain milk, butter, mozzarella cheese and goat's cheese. That's interesting about the latex, even before I had the severe reactions to milk I would break out in a red rash on my hands when I used latex gloves or in the hospital if they used something with latex on my skin I would have a red welt where it touched me for several days afterward. Now that I know that connection I will be even more careful not to come in contact with latex products. Thanks for mentioning it!

[padma]

this is one case where I would consider/plan to use a mask--a good one, not just a paper one, and forget the looks I'd get.

There are some excellent evaluations and discussion on The Canary Report about respirators and masks. There is a search box at the top corner where you can put the word mask and you'll get all the threads about them. I have one for driving around diesel fumes and on airplanes. It is a life saver. I haven't noticed I need one for gluten since I stay out of bakeries and pizza restaurants. If I think I might be exposed, I will not eat. After a few emergencies to the hospital in horrid pain, I decided to be have 100%, "zero tolerance" with gluten. I have had to totally quit eating anything "gluten free", except I CAN eat Mary's Crackers. I met her years ago at a Celiac conference and she is super sensitive, too, so she runs a tight ship.

Every time I am tempted, I pass (except I tried some chocolate recently that made me ill in about 20 minutes. Won't do that again.)

There is a hand sanitizer I buy from organiclivingtoday.net what has liquid oxygen, instead of the other toxic ingredients. It works great where ever I am to sanitize my hands and other surfaces.

I like the idea of gloves. The gloves would also keep one from putting fingers in the mouth.

It is possible that there are other things on public items that people are reacting to. People put so many chemicals on their bodies and those rub off on items, like those pens. Gas pumps of course are full of petroleum products. Just the fumes coming off the pump gets all over the handle, along with the window washing chemicals. Better to use some paper towels to make a barrier. I find the fumes stick to my clothes and hair and can make me feel ill.

Just some random ideas since everyone is trying to track down the things we react to.

[YoloGx]

There are some excellent evaluations and discussion on The Canary Report about respirators and masks. ....

There is a hand sanitizer I buy from organiclivingtoday.net what has liquid oxygen, instead of the other toxic ingredients. It works great where ever I am to sanitize my hands and other surfaces.

I like the idea of gloves. The gloves would also keep one from putting fingers in the mouth.

It is possible that there are other things on public items that people are reacting to. People put so many chemicals on their bodies and those rub off on items, like those pens. Gas pumps of course are full of petroleum products.....

Just some random ideas since everyone is trying to track down the things we react to.

Hi Padma. You make some very good points. I checked out the hand sanitizer you mentioned. Could you tell me what the ingredients are? They don't seem to be listed.

I doubt if the previously suggested baby wipes would be safe for me --since even though there is no alcohol, I react to the herbal ingredients due to salicylic acid sensitivity. Aloe for instance is one of the worst... And chamomile is hardly any better. Its hard to believe, but all too true. I used to be in effect an herbalist; however now I can't tolerate herbs due to the sals sensitivity.

Yet another idea I have had is to carry an extra 2 water bottles--one with soapy water and one with plain water just for hand clean up, along with designated paper towels in my car or truck. Since for me really the difficulty is going shopping for supplies and then wanting to take a drink of water. Lately I have been just stuffing the urge til I get back to work where I can wash up safely. If I had my own kit with me, it would help circumvent this dilemma.

Fortunately I don't get contact dermatitis from handling gluten as far as I can tell. So using the carts in a grocery store seem to be OK for me. However if I ever suspected it was a problem, I would just bring along my own cart. Why not?? People do. I have when I walk to the grocery store and want to buy several items at a time. I bought one a while back when I was still overcoming a whiplash I had plus weak elbow joints etc. This was before I figured out a variety of minerals I can take as well as nattokinase to counteract scar tissue (both from the accident as well as to the villi).

Yes the gloves, I keep thinking to myself, what kind to use? For me the problem is shaking folks hands. I suppose it would depend on the circumstances. I think of those thin white cotton ones, and maybe carry a bunch of them as well as a small bag to put the used ones into.

Its funny you mention the Canary Report. I should look into it. I used to be called "The Canary" at the art center in Oregon where I worked as a ceramics shop assistant and learned to work with clay. Anything I got sick from the other clay artists and potters took note--since it is known in ceramics that if you aren't careful, eventually you can get ill from the colorants or silicosis from the clay dust. For me it just happened a whole lot faster. My mentor told me I was actually lucky since my body told me what was wrong right away rather than adjusting to the poisons until years later when many would finally keel over.

Turns out he is right. There are so many toxic substances out there. We sensitives are on the forefront letting the rest of the populace know what could happen if they don't pay attention.

Meanwhile however I want to live a long and productive life--so I have always taken good care of myself. I have actually lived longer than some of my seemingly more healthy and resilient friends and associates. I have never let my sensitivities stop me from being as fully myself as I can be, whatever that entails, even if it h as meant slogging through some very difficult years being ill and suffering from a wide range of conditions I most fortunately have been able to overcome for the most part.

Besides gluten and salicylates I am discovering I am sensitive to phenols too. Both the sals and the phenols are often implicated in chemical sensitivity as well as a host of food sensitivities. Fortunately there are things I can do about it to become less reactive -- including taking homeopathics. Its a new learning curve for me, however they are really helping. Further I plan to order a No Fenol product to help out and am beginning to investigate phenol absent enzymes.

I now feel at age 62 I am in the process of reinventing myself again, and am finally taking a whole new lease on life. Its about time, eh?

[T.H.]

Yet another idea I have had is to carry an extra 2 water bottles--one with soapy water and one with plain water just for hand clean up.

I do that too! The kids and I automatically use it every time we get back in the car.

Yes the gloves, I keep thinking to myself, what kind to use? For me the problem is shaking folks hands. I suppose it would depend on the circumstances. I think of those thin white cotton ones, and maybe carry a bunch of them as well as a small bag to put the used ones into.

Yeah, cotton seems safest, doesn't it? I know a lot of the rubber ones have a starch coating on the inside, so I don't feel as safe with 'em. Also have banana allergies in the family, so the doc suggested I might try to keep my latex exposure to a minimum, since I developed some allergies already.

My mentor told me I was actually lucky since my body told me what was wrong right away rather than adjusting to the poisons until years later when many would finally keel over... I have actually lived longer than some of my seemingly more healthy and resilient friends and associates.

I think that's very true. I have a great aunt exactly like this in our family. She had life-threatening allergies when she was a child, and as a result, she has had to make most of her own food her entire life. She doesn't eat wheat, dairy, whole host of other things - she's probably rarely come into contact with gluten at all. She's always seemed very frail, in a lot of ways, with all she has to avoid. But at the same time, she's always very active, very involved in her life, enjoys the heck out of it. And everyone else of her generation in the family passed away much younger than she, often from things that now we're looking at as possible celiac related. Often cancers and organ problems that were decades before they should have been an issue. My aunt just keeps going, and now, we all are thinking that it might be because she's avoided all the things that seem to make most of us sick in the family.

The same organ issues and gut problems are happening now to most of our cousins and their kids. Teens with brain tumors that only show up in the elderly population. 30 something's whose hearts and gall bladders are having trouble. Kids who have stomach aches nearly every day. We mentioned the celiac disease to them and they were very enthused about checking on that, to see if it might be an issue. Went to the doctor to go be evaluated and ask for testing (close family - they all live in the same area, use the same doctor).

They are all overweight, and their doctor told them that they shouldn't be tested because there was 'no way' they could have celiac disease. And they trusted that and not one single one of them decided to be tested in the end as a result. Just kills me to think that a little faith in the doctor combined with a completely freaking ignorant doctor may result in their continuing to suffer. :-(

oh...and thanks you all for the mask suggestions! I didn't even think to go check at a hardware store, and that seems really obvious now.

[padma]

Hi Padma. You make some very good points. I checked out the hand sanitizer you mentioned. Could you tell me what the ingredients are? They don't seem to be listed.

I doubt if the previously suggested baby wipes would be safe for me --since even though there is no alcohol, I react to the herbal ingredients due to salicylic acid sensitivity. Aloe for instance is one of the worst... And chamomile is hardly any better. Its hard to believe, but all too true. I used to be in effect an herbalist; however now I can't tolerate herbs due to the sals sensitivity.

Yet another idea I have had is to carry an extra 2 water bottles--one with soapy water and one with plain water just for hand clean up, along with designated paper towels in my car or truck. Since for me really the difficulty is going shopping for supplies and then wanting to take a drink of water. Lately I have been just stuffing the urge til I get back to work where I can wash up safely. If I had my own kit with me, it would help circumvent this dilemma.

Fortunately I don't get contact dermatitis from handling gluten as far as I can tell. So using the carts in a grocery store seem to be OK for me. However if I ever suspected it was a problem, I would just bring along my own cart. Why not?? People do. I have when I walk to the grocery store and want to buy several items at a time. I bought one a while back when I was still overcoming a whiplash I had plus weak elbow joints etc. This was before I figured out a variety of minerals I can take as well as nattokinase to counteract scar tissue (both from the accident as well as to the villi).

Yes the gloves, I keep thinking to myself, what kind to use? For me the problem is shaking folks hands. I suppose it would depend on the circumstances. I think of those thin white cotton ones, and maybe carry a bunch of them as well as a small bag to put the used ones into.

Its funny you mention the Canary Report. I should look into it. I used to be called "The Canary" at the art center in Oregon where I worked as a ceramics shop assistant and learned to work with clay. Anything I got sick from the other clay artists and potters took note--since it is known in ceramics that if you aren't careful, eventually you can get ill from the colorants or silicosis from the clay dust. For me it just happened a whole lot faster. My mentor told me I was actually lucky since my body told me what was wrong right away rather than adjusting to the poisons until years later when many would finally keel over.

Turns out he is right. There are so many toxic substances out there. We sensitives are on the forefront letting the rest of the populace know what could happen if they don't pay attention.

Meanwhile however I want to live a long and productive life--so I have always taken good care of myself. I have actually lived longer than some of my seemingly more healthy and resilient friends and associates. I have never let my sensitivities stop me from being as fully myself as I can be, whatever that entails, even if it h as meant slogging through some very difficult years being ill and suffering from a wide range of conditions I most fortunately have been able to overcome for the most part.

Besides gluten and salicylates I am discovering I am sensitive to phenols too. Both the sals and the phenols are often implicated in chemical sensitivity as well as a host of food sensitivities. Fortunately there are things I can do about it to become less reactive -- including taking homeopathics. Its a new learning curve for me, however they are really helping. Further I plan to order a No Fenol product to help out and am beginning to investigate phenol absent enzymes.

I now feel at age 62 I am in the process of reinventing myself again, and am finally taking a whole new lease on life. Its about time, eh?

Hi. It took some research but here is the ingredient list I found: ToxicFree® Ingredients

Stabilized Oxygen, (Sodium Chlorite)* Infused in Distilled Water, Sodium Cocoyl Glutamate (Mild Cleanser).

*Stabilized, double bond, active oxygen. Created by processing Sodium Chloride (table salt). Free from synthetic stabilizers and preservatives.

I don't have the same sensitivities to salicylic acid like you do. I tolerate the products from that company and their products are made from many kinds of herbs. I break out from the more common chemicals used in "normal" skin care products. I have been feeling grateful to find something I can use that works well. I recently discovered the rash I get on my legs when I am exposed to chemicals and gluten is helped with their NaPCA spray. I tried it because nothing else was helping. It doesn't make it go away,but it does reduce the inflammation. This is not a medical claim, just my experience with it. My legs have been itching so badly lately with no let up of the breakouts. I know mine is mostly from chemical exposure. I haven't gotten into gluten in quite a while (except for the one piece of "gluten free" chocolate.)

Someone mentioned in an earlier post about taking products that "make us less sensitive to gluten". I don't think those products have been proven to reduce the damage from gluten. I wouldn't take them with gluten if my life depended on it.