How Sensitive Is "very Sensetive"?

[raisin]

What products are and are not safe always seems like such a debate here.

Some people can actually eat a crumb of wheat bread, while that would shock most of us. Some can tolerate up to 20ppm, many up to 10ppm, some as little as 5ppm.. But what about those of us who can't even tolerate <3 ppm?? It's not just labels and companies that have been pissing me off, but other celiacs! It's like no one takes minor CC seriously.

I'm always afraid people with that "you hypochondriac" attitude around me will do something (be it careless or to "make a point") to make me sick, especially when I eat out. It's nerve wracking. How do you cope with the anxiety? The attitudes? The deceitful labels?

[rumbles]

You are soooo not alone on this. I had someone invalidate one of my postings

on this board the other day because they felt that what I said would not

relate to new celiacs, and then questioned the validity of part of the info

that I posted (which was documented by others in other postings last

year). From my viewpoint, it was rude, hurtful and completely disrespectful

of me, and may have provided harmful info to the person that posted the

original question, if it turns out that they are one of us that are very

sensitive to gluten. I try my hardest to be sensitive to everyone else's

situation, and hope that my words never make anyone feel uncomfortable,

or lead them down a path that causes them to be glutened.

There's some really great people here, and some really great info, but every

so often, I run into someone that makes me wonder why I bother coming

back. Thanks for starting this topic, - I figured that there are others that

feel the same way, but never saw it mentioned.

[dilettantesteph]

I so agree with you!!

The ppm's aren't that relevant though. ppm means parts per million which is a concentration. What makes you sick is a certain amount of gluten. As little as 0.5 mg of gluten can make a celiac sick according to our local celiac specialist. At 20 ppm you get that from 25,000 mg or 25 g. A serving of cereal is about 30 g. Then again, if you only have a tiny bite of a 20 ppm food, you will be fine. If you eat pounds of a 1 ppm food you will still get sick. (Can you tell I was a science teacher?)

Both my son and I are very sensitive. Even at less than 5 ppm, a serving can contain more than 0.5 mg. For example with the Amy's pizza which made him sick over the weekend. (It tested positive in a home test, but could have been below the 5 ppm which Amy's tests to). Even at below 5 ppm, one third of those little pizzas will contain more than 0.5 mg. Amy's pizzas are made in a mixed facility. They have added a warning to the box which appeared on the next shopping trip I made after the one that made my son sick.

They don't want new people to get scared off the diet. I can understand that, but what about new people like us? I kept getting told that certain foods were safe which weren't safe for me or my son. Finally the Wegmans nutritionist told me that not all gluten free foods are safe for all people. I needed to watch out for foods processed in facilities that also processed wheat. Finally my son could stop missing school. Finally is could leave the house without having to worry about pooping in my pants.

How often in this forum do we hear from people who think that the gluten free diet isn't working for them? They are sure that they are eating gluten free and then you hear what they are eating and they aren't really completely gluten free at all.

So many less sensitive celiacs go on about how things couldn't possibly contain gluten because they can eat it. Us less sensitive people can't eat that stuff. And we aren't any more crazy than you are compared to those regular people who can eat all the gluten they want.

I have been called a hypochondriac right on this site. I have been told I am imagining my symptoms. This site should be for support. Maybe us more sensitive people need our own site. Or, maybe you less sensitive (to gluten) people could be a little more sensitive (emotionally).

Going back to very sensitive. I think it means 0.5 mg will initiate a gluten reaction. It means no gluten grain vinegars. It means no foods processed in a facility that processes gluten grains. It means no gluten grain alcohols. It means few wines due to contamination from barrels, the filtration process or the use of gluten grain derived yeast.

For those less sensitive people. Enjoy being able to eat foods low in gluten. I am not trying to scare you. I just want to be able to help other people who are sensitive like I am. I wish that I could have gotten this kind of help for myself a lot sooner than I did.

[marciab]

I'm one of those who is incredibly sensitive too. All I can think of when I hear others questioning this is that they don't have the reactions we do ... or they haven't learned what reactions they'e having to gluten. I know someone who knows he gets really moody from it but it's up to his wife to point it out ...

I get myoclonus and insomnia if I get glutenned and it's not something I want to experience regularly.

You'd think after reading about this a zillion times on this board, they'd get it though .. That's the beauty of the internet, we can share our stories and learn from each other ...

I would imagine too thought that they just don't want to give up those foods that are suspect and I can't blame them for that. Who doesn't want to eat Breyer's ice cream, Amy's, etc or going out to eat ?

But for many of us, there's no choice but to avoid all gluten.

I'm not waiting for the medical profession to catch up with all the info on this. Look at how long it took them to acknowledge where ulcers came from.

BTW. DPP-IV is helping a lot of people with cc .. not me so much, but I take it just in case ...

[solarglobe]

Hi,

As a relatively new kid to this (5 months) I understand the frustration of reading labels, changing shampoo brands, trying to de-gluten kitchens and all that. For me, just a crumb of gluten can set off my immune reaction.

The best explanation I heard about "how much is too much" is to compare gluten to dog poo (kinda gross I know but it works!) How much dog poo would you want in your food? Just a little doesn't hurt right? No way! You wouldn't want any -- not even a speck!

I go to church, and have had to request rice crackers for me (I supply them) instead of the usual white bread that is used for the weekly sacrament. This has caused a bit of clucking and head-shaking -- and I just ignore it. However, recently, one of the church members, who is a medical doctor!, said loudly, within earshot to a large group "a little bit of bread once a week isn't going to hurt a celiac!" Right. I wanted to invite him into the bathroom with me about an hour after I eat that "little piece of bread."

Good luck -- hang in there. It does get easier with practice.

[jerseyangel]

I hear you all, and I'm so sorry that some of you feel slighted. It's true that everyone experiences the symptoms of Celiac/GI differently, and as such you will get answers and comments that reflect individual experiences.

Personally, I'm exquisitely sensitive to minute amounts and the situation has not improved at all in over 3 1/2 years. I can't tolerate most packaged foods--whether they're labeled gluten-free or not.

I know how very difficult this is--I do best on whole foods in their natural state--meats, produce, etc. If I stick to those and the very few foods that I tolerate from dedicated manufacturers and even fewer from mainstream ones, I'm fine. The problem--for me--comes in when I deviate from this and try a "new" product.

If I'm lucky, I do fine and can then add this to my list of safe foods. More times than not, though, I react. I have unpleasant symptoms for a few days--and it takes me 2-3 weeks to get totally back to normal. Add to this, I also have several other food intolerances--also determined by an elimination diet

Hence, I tend to stick to things that--by trial and error over 3 years--I know I can handle. I wish I could offer a magic solution, but sometimes there is just no rhyme or reason to this. I never eat in restaurants, bring my own food when dining in other's homes, routinely call companies, read labels, and am lucky enough to have a family who, although my kitchen is not totally gluten-free, are very careful and are very familiar with the pitfalls of cross contamination.

I would be happy to start a "super sensitive" thread if that would be of any help....

[MaryJones2]

jerseyangel, that's a great idea! Your story could be my story.

[rumbles]

I think a super sensitive thread would be great! - I think we should have

our own subforum category. It won't change the insensitivity that goes

on in the other subforums, but at least it could be a safer place for those

of us that have the ability to demonstrate that gluten effects us at even

the smallest of amounts!

[marciab]

The downside to starting a seperate thread is that there are so many celiacs out there that don't think they qualify but they just don't know how gluten is affecting them. And, I have seen some that don't care since it's a minimal inconvenience for them. Something they can live with .. And trust me, if I could cheat, I would too ...

I see this in my support group every month ... And every month those of us who are very careful warn them about CC. Not that I think gluten avoidance is a cure all but this seems like a no brainer for a group of celiacs ...

You can't count on digestive issues from eating gluten because a lot of celiacs don't have them ... The Mayo Clinic just published an article last year saying that people with full blown celiac may not have any symptoms ... I may get constipated down the road but I'm not on the toilet immediately.

IMHO, If someone wants to know if minute amounts of gluten is affecting them, the only way would be to stop it completely for at least a year and then add it back. We know, via Dr. Hadjivassilou, that it can take a year to get the antibodies out of our brains ...

[jerseyangel]

I was thinking along the lines of a place for us SS'ers to exchange tips and things that worked/didn't work for us. I don't think we need a separate forum to do that. I'll go ahead and get a new thread up, and we'll see how it goes. Hopefully, kicking around some of these things will benefit us and help those who only come here to read.

[marciab]

That sounds like a good idea ... Maybe title it something like "Tips for those who want to avoid ALL gluten" ... Something that doesn't sound fanatical but realistic ... I would avoid the super sensitive label ... since it appears that too many celaics aren't aware of how minute amounts of gluten are affecting them so they'd skip over this .... (this is just my perspective) .. If I weren't so sensitive I'm sure I'd think we were fanatical too ...

[Gentleheart]

I think a special place for the super sensitive part of this family to talk would be very useful.

[rinne]

I am definitely in the super sensitive category, I realized that when I reacted after I put three drops of a homeopathic remedy under my tongue and with fifteen minutes reacted. I then found out that the alcohol for the remedy was grain based, this was not on the label.

I am baffled by those who will assure people that something is safe based on their less sensitive experience, I think it is helpful to continue to counteract that view for those who are new to the diet.

[Felidae]

This is a great thread. I have become super sensitive lately and it is driving me crazy. I have switched my flour brand. But, I'm now I thimk I'm having problems with the other brand. I haven't been on here for awhile but I'm back and it's great to see people supporting each other. I doubt that we all react to the exact same things, but hey it's great to talk to each other about it. This lifestyle can be such a pain sometimes. However, I'll never go back to eating gluten.

[raisin]

If "Some people are in denial, and won't read it," is the only down side, I'd have to agree the forum is a great idea. I'd love a place to discuss the highest level of safety of any products! the current subforums don't get me answers to some of the most seemingly simple CC questions..

Thread vrs forum depends on how many of us are actually here. I've seen many SS members, so a thread may get too flooded? A forum is just more neat and tidy.

[Kaycee]

I'm one of the supersensitives too. It took a long time to come right on the gluten free diet. Have now been on it for three years, and still have stomach issues.

My latest experience was cutting a normal pre-cooked sausages on the barbeque (it's summer here), to check if it was cooked, then touching it with my finger, and next I put that finger in my mouth! I coughed and spluttered and spat, but I still got caught. D the next day. I now tend to feel nauseous and throw up when having eaten gluten, not instantly but two or three hours later. More often than not, I cannot tell what gave me the problem, as none of the food I have eaten sticks out as being the problem, they aren't always major symptoms, but none the less very inconvenient. I'm like you jerseyangel, I can't tolerate too many packaged foods, even those gluten free products.

Another thing is that my blood tests still point to higher levels. My doctor was quite perturbed and expected them to be down to zero by now. they started off at over a hundred, and last time, about two years into the diet the levels were down to 20. the doctor then conceded that they probably never will get down to zero. Makes me wonder if he thinks I am eating gluten on the sly.

I'm all for a new thread. I just remember it took me forever to get here, and I'm still not 100% right. Once my son inferred it was all in my head. I did wonder for a while about that, until I had a meal out, I explained gluten-free, and they knew all about it, I got sick not long later. I had wondered about what looked like little bits of peanut on my salad, so I rang the next day inquiring only to be told it was in fact coucous. Only about a quarter of a teaspoon of the stuff, but I felt so ill.

Cathy

[rumbles]

If that was a charcoal barbeque, hopefully it was lump wood charcoal.

Charcoal briquettes are held together by . . . gluten.

[ive]

I am too one of the very sensitive celiacs. In my case sometimes it is hard to determine if I was glutened because I have very similar reactions to corn as well, my symptoms are mostly non-digestive, I get very depressed and tired. In addition to that I still do not feel well most of the time, I have other issues, so it is hard to determine whether I feel bad / depressed etc because I was glutened or it's just a bad day. Fortunately my husband is gluten-free as well and his symptoms are more obvious, so I usually look at how he feels if I am in doubt.

Just recently we had to change our baking flour supply. I had too much trust in one of the local companies that sells gluten-free flours and mixes. As it turned out, this company manufactures only some of their flours; they outsource the majority of their flours to other vendors and I do not think they make sure these outsourced flours are milled in a gluten-free environment. Of course, when I wrote to them I got a standard reply that they test all of their products and find them to be gluten-free, but this is not enough for me. It's too sad that I didn't figure it out earlier. People on this board did not have any problems with this brand; that's why I was in denial and was using these products for a year. I kept getting mysterios "glutenings / cornings". One time my husband started to have his glutening symtpoms after I made a new batch of gluten-free flour mix and opened a new box of potato starch from this local company and baked some cookies. That was the only new thing I baked / cooked so I started to investigate. From now on I am buying all my baking supplies from Authentic Foods, they mill all of their flours themselves. The flours are really good but expensive, the shipping to Canada is expensive too, but I feel like there is no other choice.

It's hard to be so sensitive. For now my strategy is to cook from scratch and buy products only from the trusted and tested by trial and error companies, like Jerseyangel does. I will not go to a restuarant any time soon; I was glutened by a straight iced Americana coffee in Starbucks. I will try to host all dinner parties at my house too.

[MaryJones2]

For now my strategy is to cook from scratch and buy products only from the trusted and tested by trial and error companies, like Jerseyangel does.

I do this too. This system works for me. It's really all about what my body tells me.

[happygirl]

If that was a charcoal barbeque, hopefully it was lump wood charcoal.

Charcoal briquettes are held together by . . . gluten.

Some of them may have been, or used to, but Kingsford no longer has gluten. Not all charcoal uses (or used) gluten.

[Kaycee]

I stay away from barbeques. Don't like them because of the cc problems. I was just checking the food, for the non gluten freers, that they were cooked. Reading all these posts over the last few years, I kinda feel that I would love the experience of a gluten free house. Something to dream about.

If that was a charcoal barbeque, hopefully it was lump wood charcoal.

Charcoal briquettes are held together by . . . gluten.

[raisin]

Many people talk about eating out anywhere, ever, as if it spells out certain doom. I hope it doesn't sound too presumptuous.. But it seems the difference between the celiacs who can and cannot eat out, is how assertive (while polite) they are willing to be with an establishment.. Rather than just blaming the establishments, shouldn't you take part of the blame?

[rumbles]

Thanks for the great info on Kingsford! - I stopped using them over a

year ago because they were making me sick, - I'm going to start using

them again!!

[dilettantesteph]

I couldn't stay healthy until we made our house gluten free. If we couldn't manage it without problems, with all our knowledge and personal experience, how could I ever expect someone working at a restaurant manage not to CC me? Bringing your own food seems to be the only way for low tolerance celiacs. The sooner we accept that, the faster we will get healthy. How is low tolerance instead of super sensitive?

[Gentleheart]

I couldn't stay healthy until we made our house gluten free. If we couldn't manage it without problems, with all our knowledge and personal experience, how could I ever expect someone working at a restaurant manage not to CC me? Bringing your own food seems to be the only way for low tolerance celiacs. The sooner we accept that, the faster we will get healthy. How is low tolerance instead of super sensitive?

I absolutely agree! I haven't seemed to get well no matter what I do, possibly because I still live in a household/kitchen full of gluten. If I look at it from the viewpoint of my family, I can certainly see the huge problem for them. That's a lot to sacrifice for anyone. But these are some of the very hard facts that could be shared and hashed out on this particiular thread in order for some of the super sensitive people to ever get well.

As far as restaurants are concerned, anyone who has ever worked behind the scenes at restaurants knows full well that when business gets fast and furious, THINGS happen and stuff is flying everywhere. I totally agree that if it is difficult for me to keep from getting contaminated in my own gluten kitchen, then how can I honestly expect a restaurant kitchen to do any better. It's not fair to them either. I'm beginning to believe that super sensitive gluten people just can't eat restaurant food. Maybe there will eventually emerge some dedicated gluten free restaurants that can be trusted, but I'm sure they will only be few and far between and mostly in the large metropolitan areas. The rest of us might just have to accept the fact that if we eat in a restaurant, we bring our own food. And I think we literally can't even eat in some restaurants at all, like the ones who particularly specialize in gluten foods - pizza, spaghetti, bread, etc. It's bound to permeate the air and all surfaces of the place. These are tough things to accept. But our goal is to get well. You gotta do what you gotta do.