"Super Sensitive" Celiacs.....

[Sailing Girl]

I AM SO SICK OF THIS!!!!!! (long long rant, sorry, but would love to get suggestions if anyone's got them)

Just about every time I eat out anywhere I get glutened or CC'd, no matter how careful I am (and believe me, I'm careful). So I'm extremely reluctant (as is everyone else on this thread) to let other people cook for me. Yesterday, after a long, long day of driving kids hither and yon, I made a completely safe meal for myself, DD, and five friends and then hauled it 20 miles to another friend's house -- paper plates, plastic utensils, salad dressing, and salt and pepper and all. This was both to do that friend a favor (he'd been working harder than me all day and his home was all torn up), and to make sure my daughter and I would remain unglutened.

We were all crammed in around a small table in a very, very small space. Everything was fine until my best friend (who knows pretty much every detail of my extreme intolerance to gluten) opened the package of wheat crackers he had brought and started passing them around. I had an instant vision of gluteny cracker hands handling all my nice gluten-free bowls, serving utensils, condiment bottles and salt and pepper shakers, not to mention cracker crumbs around my formerly gluten-free, perfectly safe meal -- and I got pretty upset with with my best friend (unfortunately in front of everyone at this small table).

The idea of those crackers ruined the evening for me -- even if the actual risk of CC was pretty low, I no longer could relax, safe in the knowledge that everything on the table was gluten-free. I had to be on guard against potential crumbs in my salad, and (once again) had to explain to DD why she couldn't have a piece of the cheese being passed around on the same plate with the crackers.

I don't know about you guys, but when there's gluten present near my food, I find I watch it a bit obsessively -- I've had too many mystery glutenings to be comfortable with gluten waving around in someone's hand a foot or two from me. I didn't have any fun at the gathering and felt very unappreciated, even though everyone enjoyed the food I'd brought and said so.

So on the way home, my best friend informed me that *all* my friends think I'm crazy to be taking such extreme steps to protect myself and DD from gluten (apparently he had conferred with our host when the two of them left the table at one point -- lovely). My best friend was angry with me for making a public scene over the crackers (and he was right -- I should have said something to him in private, but I was really upset at the time), and he said I'm taking this way too far. I told him he didn't have to live in my body, and that I'm sick and tired (literally) of losing entire chunks of weeks to fatigue and blah-ness because I've gotten CC'd yet again.

I'm confident I'm doing what I need to do to keep myself and my DD safe -- even if it seems extreme. He wants scientific evidence that a smudge of gluten on a wine bottle is harmful. I told him there isn't scientific evidence, only anecdotal evidence. And I also told him it's unlikely to be harmful ... unless the person who had been handling gluten touches the lip of the bottle or the rim of my glass. He scoffed at that, said it was an extremely low risk. Yes, it is a low risk, but it's still a risk.

He also said I'm holding friends to a higher standard than I hold restaurants. It's true, I am -- but only because when I go out to eat I've already pretty much accepted that I'm likely going to get CC'd and feel lousy the next day. That's why I don't go out to eat very much anymore. When I go to the effort of making a meal for everyone and hauling it somewhere, I want it to be safe. He said it's not fair to my friends to deprive them of crackers. I said it would be a courtesy to me to make sure they're not wheat crackers, especially when I've made the meal. He said that's unreasonable. This was a standoff.

He also wanted to know why I couldn't ingest small amounts of gluten to desensitize myself to the stuff. I explained to him (again) the difference between an allergy and an autoimmune reaction ... but I'd really appreciate it if anyone (who's still reading after all this blather) who has a good link to send him that lays out the difference.

He and I have had this conversation before. He's told me my friends all think I'm crazy before. He obviously thinks I'm crazy. He said I'm obsessing about this, and he's right -- but the more I obsessively eliminate every microscopic particle of gluten, the fewer days I have of feeling lousy. My parents also think I'm crazy. Maybe I need new friends and a new best friend/significant other who's got my back, instead of one who thinks I'm a crazy hypochondriac. Maybe I need to be more obvious about my reactions (they're no longer severe enough to send me to bed for three days, and I've learned to muddle through while feeling lousy ... so no one knows I'm glutened unless I point it out). He does believe that I react to gluten (gee, thanks), he just doesn't believe it's possible for me to react to such microscopic amounts ... and I don't know how I can persuade him that it happens.

I'm sorry for the length of this. I just needed to get it off my chest. I'd love opinions on whether I was right or wrong in this case. I know I was wrong to make a public scene, but I *do* think it was insensitive of him to bring wheat crackers. Was I wrong?

Also, if anyone has any ideas on how to make all my friends see that I'm not insane, I'd be grateful. Or, if after reading this you think I *am* insane, please point that out -- maybe I'd believe it coming from another super-sensitive.

Sailing Girl

[Sailing Girl]

Good morning again,

I wanted to let you all know I just tested Thai Kitchen's fish sauce using the EZ-Gluten Eliza test and it was a very faint positive (so 10 ppm or less). That's two Thai Kitchen products with trace glutens in them (dilettantestef reported the peanut sauce also was contaminated). However, the products almost certainly are safe for most Celiacs, and meet the 20ppm "gluten free" standard.

The positive test on the fish sauce explains my repeated symptoms after homemade Thai food <sigh>. At least I finally found the source (I thought it was the soy sauce until I switched from San-J to Eden but continued to have the same problem).

Anyone know of a safe fish sauce?

Sailing Girl

[dilettantesteph]

Sailing girl, thanks for the fish sauce test results. I had sadly decided to eliminate all Thai Kitchen from my diet. Too bad. Your confirmation makes me feel a bit less extreme. I think that as the gluten free diet becomes more popular it will be hard for gluten free companies to obtain good gluten free starting materials. Supply won't be able to keep up with demand and things will become more contaminated. The FDA ruling of 20 ppm isn't going to do us sensitives any favors.

As far as your rant goes, you aren't crazy. Or, if you are, I am just as crazy if not more so. I have to be to prevent my son and I from getting sick. I think you need a new best friend. Why should you have to present him with scientific evidence? He should believe you. How could he pass around wheat crackers like that? Your best friend should be giving you the support that you need, not making things harder.

[SGWhiskers]

Sailihng Girl,

For what they are worth, here are my opinions.

1) You are NOT crazy. I've not figured out the way to appear sane about this gluten thing to non-celiacs, but you are most definately not crazy.

2) You need to do whatever necessary to keep yourself and your daughter safe.

3) My philosophy is that this is my problem, not theirs, and if there is a way I can take extra precautions for myself and take some of the burden off others, all the better. It was pretty cool of your friend to let you make the meal.

4) It would have been nice of your friends to have been considerate of your feelings and kept the gluten in the pantry. It wasn't rude of them to pull it out though.

5) In that situation, I would have pulled out the crazy hat for 5 minutes, gathered all the food I thought I and my daughter would eat and the leftovers I wanted to take home and set them aside. I might have traded out the salt and pepper shakers if I was worried about them and maybe the serving bowls if I was worried washing wouldn't get them clean enough for me. Then I would let the party roll with the remaining food/wine all glutened up with cracker crumbs. Depending on the age of my daughter, I would also have asked the guests to wash before holding her. I've found even when I cook a gluten-free meal in my own home, I still pull my food aside early along with any suspected leftovers so that I don't have to watch and worry about CC from my guests. If the main dish runs a little low, I just get up and take some out of the leftover dish that I set across the room. This way, I don't worry, and my friends don't worry, and we can pretend everything is normal.

6) You may want to pack a lunch when you go out to eat. I've found that this accomplishes 2 things. I don't get sick, and my friends chuckle, but relize how seriously I take my health.

7) It sucks.

[happygirl]

Not that anyone needs to provide anyone with documentation about their medical issues (which is between them and their doctor):

"If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. "

Edited to take out the incorrect link and add link to text of article, which was printed in the Baltimore Examiner https://www.celiac.com/gluten-free/index.php?showtopic=54628

(thank you Janet)

[Darn210]

Open Original Shared Link

Ummmmm . . . . . . is it just me or did this link not work right???

[psawyer]

It's not just you, Janet. I think it was pasted from the visible form of another post, as it contains an ellipsis.

[MaryJones2]

Here's a copy of the text of the article:

https://www.celiac.com/gluten-free/index.php?showtopic=54628

[Sailing Girl]

Thank you, everyone, for your kind words and excellent advice.

I've calmed down a bunch since this morning, and come to a couple of conclusions:

1) No matter what anyone says, I obviously have to keep DD and me safe, and that involves continuing to do everything I've been doing.

2) It doesn't matter that my friends think I'm insane -- I know I'm not.

3) I definitely could have handled the situation last night better (SGWhiskers, your advice was so good -- "put on my crazy hat" indeed). But ya know -- I didn't get glutened, so the evening was a success in my book (who needs friends, anyway??)

Honestly, it boggles the mind that they think I'm being this, well, melodramatic and neurotic just for the fun of it or something. Do they honestly imagine I woke up one morning and said to myself, "Gee, I feel absolutely 100% perfect on the gluten-free diet and it's not even much of a challenge anymore, so I'll make an effort to eliminate absolutely all traces of gluten just for the fun of it"? If I won't eat something or drink something or touch something because I fear contamination, it's because I GET SICK IF I GET CONTAMINATED. Who cares if it's from gluten at 500ppm or 1ppm? Sick is sick, and I'm sick of being sick! No one questions the sanity of someone who says they're anaphylactic to peanuts so please keep that peanut butter far, far away -- so why do they have to question us?

Okay. Second rant over .

[GFinDC]

....

I'm confident I'm doing what I need to do to keep myself and my DD safe -- even if it seems extreme. He wants scientific evidence that a smudge of gluten on a wine bottle is harmful. I told him there isn't scientific evidence, only anecdotal evidence. And I also told him it's unlikely to be harmful ... unless the person who had been handling gluten touches the lip of the bottle or the rim of my glass. He scoffed at that, said it was an extremely low risk. Yes, it is a low risk, but it's still a risk.

.....

Sailing Girl

Hi Sailing Girl,

Maybe he could understand it better if he thinks about the gluten free standard that is being considered by the FDA. They are talking about a 20 ppm (parts per million) standard for gluten free products. If you think about 1 cracker divided into 1 million pieces and then 20 of those millionths being enough to make you sick, that is not a lot of cracker after all. That's not an exact way to think of it I guess but at least it gives him an idea of the amounts involved. That would be if the cracker was made of solid gluten, which they aren't of course. But it is still an awfully tiny little itty bitty smidgen of stuff.

I am not sure I can even imagine what a millionth of a cracker would look like really.

OK, I am not a scientist so maybe some one who understands these measurements can explain it better. I don't think there is proof that 20 ppm is safe either.

It's worthwhile trying to educate your fiends I think. Just because they don't always understand doesn't mean they can't learn. It can be hard to wrap the old noggin around the sensitivity issue. I know I didn't believe it a first myself until after I had been gluten-free a while. But I found out it was true from first hand experience.

[prayin4achange]

That is probably the most frustrating this for me. I know that I just don't feel right. They have tested me for all sorts of things, and everything comes back within range. Although when they tested me for vitamin D it came back "low normal" so she suggested I take a supplement. At least she doesn't think I'm crazy.

The irony is that for me, when I get glutened, I don't get D. If anything, I'm more likely to suffer from C. That really blew my doc away. My symptoms linger for somewhere around 8-10 days. I get a ferocious headache that thankfully lasts only a day, then I get what we have coined "the burn". Everything I eat hurts, doesn't matter what it is. So, I eat enough to make the hunger pain go away. That lasts for a few days, then I get reflux for a few days. Finally that wears off, but I'm tired for a few days.

All that from like an invisible crumb...

It's so sad to hear so many horrible stories from people. Honestly, I also have lots of C and barely ever D. The more I research though, the more it's proven D and C can both be symptoms of Celiac. All that you say sounds so similar to me. People always think im crazy, making too big a deal of it, or making excuses. It's hurtful and annoying. The longer I don't find the problem and don't fix it, the worse and worse I get. My mom has all the same problems I do, so, if i can figure out what's wrong with me.. I can help her too. I havent been officially diagnoised with celiac, but 2 people I know (one's husband has it, one has it herself) are almost positive I fit all the criteria and encouraged me to try to go gluten free. I also had a biopsy done before but even though i asked the doc to check for celiac they didn't. When I called the nurse to confirm she said they didnt check and the least expensive way to really find out is go gluten free and see the response. Considering I got really sick just a few days later doesnt really help in noticing if my symptoms are decreasing. Each year I get more and more senstive to things. But it's not JUST food. Im not really sure what food bother me yet. Unless I eat a seriously VERY basic and plain diet I hurt. I quit consuming milk and cheese and started soy milk instead, but i keep hearing soy is a big prob for people. Also, we eat at friend's houses all the time and I refrain from food with cheese, but milk's included in lots of things I'd never assume. Im also eat yogurt a lot bc I hear with the probiotics it's easier to digest, and Im having a HARD time eliminating ice cream. An allergist confirmed with a test I have a peanut allergy, but not anaphalactic (i wish i could spell and wasnt too lazy to look it up haha). any amount of fat more than a bit makes me really sick too.

Sorry this is so long!! Besides food i have extremely sensitive dry skin, diagnoised hypothyroid, bad hypoglycemia esp worst the past 2 yrs, lazy eye, a stigmatism, eczema on hands really bad, extremely dry scalp, lots of infections, and extreme sesitivity with all senses (smelling, brightness with sight, hearing, and tastes of food). Also have been diagnosed with depression and GERD. Unless i chew gum 24/7, which is leading to TMJ which ive had before, i get bad heartburns. I used to run competively but can barely walk without almost passing out. If i run even just 2 miles Im done for the whole day. Cant sleep well at night either cause ALWAYS have to urinate and always thirsty. Im in very normal range of weight and height and postitive im not pre-diabetic.

Once I get sick im sick for days too. I think going off gluten has helped my intense chest pains and stomach pains but I still have horrible bloating, fatigue, urge to urinate, and constipation. That is almost my whole story haha... anyone have any recommendations of other foods or things I can do to maybe help my problems?? Thanks so much.

Jenn

[dilettantesteph]

The store I go to stopped carrying my rice/soy milk blend. Does anyone have any recommendations that work well for sensitives?

[jerseyangel]

The store I go to stopped carrying my rice/soy milk blend. Does anyone have any recommendations that work well for sensitives?

I use Pacific Foods Rice Milks (Plain and Vanilla) and their almond milks with no problems. I've never used their soy since I'm intolerant to soy.

[ang1e0251]

[quote name='prayin4achange' date='Mar 23 2009, 09:49 AM' post='519715'

I quit consuming milk and cheese and started soy milk instead, but i keep hearing soy is a big prob for people. Also, we eat at friend's houses all the time and I refrain from food with cheese, but milk's included in lots of things I'd never assume. Im also eat yogurt a lot bc I hear with the probiotics it's easier to digest, and Im having a HARD time eliminating ice cream.

Sorry to contradict but you are not dairy free. You are eating yogurt and ice cream and maybe other foods with dairy. Some of your symptoms can be from the dairy. If I ate those products, I would not be able to leave the bathroom.

You eat at friends' houses a lot. There can be a lot of CC in that if you are very sensitive.

You would probably benefit from an elimination diet. There are many outlined on the Internet. If you are serious about getting well, that would be an excellant way to start.

[dilettantesteph]

I am really bummed out these days. It doesn't help that I got glutened. First, last week I found a contaminated Thai Kitchen product (less than 20 ppm gluten for those non sensitives), and then sailor girl found one too, so that confirms it, no more Thai Kitchen. That was one of my staples. Then Monday I went to the store and they no longer carry two items I eat every day. Now today I got glutened and started testing. That is in between doubling over from the stomach pain, and trips to the bathroom. I found that two other things I eat every day are slightly contaminated. I try to tell myself that it is a good thing because when I eliminate all these things my health is going to be so much better, but I hate it that my choices are going down so fast. I need to learn to make my own spicy sauces. I need to learn to cook better in general. I just wish I could go out to eat and not have to always cook myself. I wish that gluten grains had never been developed! At least my celiac son doesn't eat any of these things. I got a donut hole recipe here I hope it's good and will get me out of my funk. Hopefully I will feel well enough tomorrow to make it. It's tough sometimes.

[Mike M]

I am really bummed out these days. It doesn't help that I got glutened. First, last week I found a contaminated Thai Kitchen product (less than 20 ppm gluten for those non sensitives), and then sailor girl found one too, so that confirms it, no more Thai Kitchen. That was one of my staples. Then Monday I went to the store and they no longer carry two items I eat every day. Now today I got glutened and started testing. That is in between doubling over from the stomach pain, and trips to the bathroom. I found that two other things I eat every day are slightly contaminated. I try to tell myself that it is a good thing because when I eliminate all these things my health is going to be so much better, but I hate it that my choices are going down so fast. I need to learn to make my own spicy sauces. I need to learn to cook better in general. I just wish I could go out to eat and not have to always cook myself. I wish that gluten grains had never been developed! At least my celiac son doesn't eat any of these things. I got a donut hole recipe here I hope it's good and will get me out of my funk. Hopefully I will feel well enough tomorrow to make it. It's tough sometimes.

That is a bummer, sorry to hear about it. I just snapped out of my recent glutening yesterday. Every time I think to myself....What if I don't come out of it this time? So far, I always have, just has to run its course. Do you have a P.F. Chang's anywhere near you? I mean, it would be worth a road trip once in a while to give yourself a break and a treat in my opinion. I was talking to the manager at our local Bistro and he said he has some celiacs that drive an hour and a half to come to their location. Knock on wood, I have not been glutened yet eating there and I am sure it has been at least 15 times in the last 6 months and this is at three different locations. They take gluten free real serious and have a dedicated area in the kitchen with dedicated cookware and plates. Gluten free lettuce wraps and gluten free Chang's spicy chicken are my favorites. Hope you get to feeling better soon. Mike

[Sailing Girl]

I am really bummed out these days. It doesn't help that I got glutened. First, last week I found a contaminated Thai Kitchen product (less than 20 ppm gluten for those non sensitives), and then sailor girl found one too, so that confirms it, no more Thai Kitchen. That was one of my staples. Then Monday I went to the store and they no longer carry two items I eat every day. Now today I got glutened and started testing. That is in between doubling over from the stomach pain, and trips to the bathroom. I found that two other things I eat every day are slightly contaminated. I try to tell myself that it is a good thing because when I eliminate all these things my health is going to be so much better, but I hate it that my choices are going down so fast. I need to learn to make my own spicy sauces. I need to learn to cook better in general. I just wish I could go out to eat and not have to always cook myself. I wish that gluten grains had never been developed! At least my celiac son doesn't eat any of these things. I got a donut hole recipe here I hope it's good and will get me out of my funk. Hopefully I will feel well enough tomorrow to make it. It's tough sometimes.

Steph, I'm so sorry you got glutened and you're feeling so down. I agree with Mike's suggestion -- if there's a safe place to eat out (PF Changs), go get a nice not-home-cooked meal.

If you tell us what the things are that your store no longer carries, maybe we can help you replace them. I'm not sure what to do about the Thai Kitchen stuff, though -- I'm probably going to try to make my own curry spice base and fish sauce. I've got a Jamaican hot pepper sauce bottle in my cabinet that I'm planning to test as soon as my next set of test strips arrive, too -- maybe it will be negative. I'll share results.

Feel better soon!

Sailing Girl

[dilettantesteph]

Thanks guys. I looked up PF Changs and there is one pretty close. Generally Chinese food doesn't work that well for me since I am vegetarian, but maybe I'll give it a try anyway. It would be nice for my son.

It wasn't a bad glutening and I feel much improved already. It is just such a bummer not to have much to eat. It is just an acceptance thing. Also how is it that I am getting more sensitive still at 1.5 years?

[Mike M]

Thanks guys. I looked up PF Changs and there is one pretty close. Generally Chinese food doesn't work that well for me since I am vegetarian, but maybe I'll give it a try anyway. It would be nice for my son.

It wasn't a bad glutening and I feel much improved already. It is just such a bummer not to have much to eat. It is just an acceptance thing. Also how is it that I am getting more sensitive still at 1.5 years?

Oh man, I don't know how you can do the vegetarian deal, my hat goes off to you and everyone else that can pull this off. I just could not deal with it.

They also have a lot of gluten free vegan choices. If you go, be sure and ask for the "gluten free" menu. They actually have one. At ours, they serve gluten free on a different plate so there is no confusion.

Still getting more sensitive at 1.5 years.......Well, I think if we are the extra sensitive type and are still getting mild gluttenings on a somewhat regular basis (every week or two) the antibodies just are not going to go away. As of right now (knocking on wood real hard here) I seem to be getting less sensitive (dang I hope I did not jinx myself). All the best, Mike

[Lisa16]

Hi Steph!

I hope you are feeling better today!

Like you, I seem to be getting more sensitive of the gluten-free diet and have to keep eliminating stuff. I always thought maybe it was just that being constantly glutening masked the other sensitivities and that now the gluten is gone, I am noticing the other things. So far I have lost dairy (that is really a big one up here in MN), sulfites, nitrates, msg and now pistachios. Broke out in hives from them on more than one occasion, so off the list they go.

It is scary, but what it does do is force you into a healthier diet with fewer processed foods. Maybe it will help to look at it that way.

As for having to cook all the time, I will share a perspective I got from my boyfriend (English so needs a better word! He is in his 50s and we are on year 7!) who is from Sri Lanka. He said that food is one of the most basic and important things in our life and deserves a place of honor. So if it becomes more expensive and takes more time out of our days to prepare, that is okay because it keeps us from getting sick and enables us to live a good life. It seems silly, but there is a great truth in that which we, in this culture, seem to have forgotten. Our grandparents spent a large percentage of their time on food-prep. So here's to safe home cooking!

And Mike M-- I take my hat off to you for your even temper and tolerant nature on these boards. I have the greatest admiration for you!

Lisa

[Jestgar]

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

[Lisa16]

Yes, Jestgar-- you nailed it. I have gotten sick twice from Pf Chang's (2 different locations, both times mild and both times when they were very busy.) We have stopped eating there.

Once you get used to it, it really doesn't take that much longer to make your own soup or grind your own steaks to make ground beef and it is totally worth it for the peace of mind and the great fresh taste. But we seem to be culturally conditioned to think in terms of opening cans or freezer bags or peeling back foil to get our food. Trouble is, it is killing us. All of us.

BC (before celiac) I was the kind of person who never cooked. I bought the frozen dinners or opened cans or bozes and I thought I was doing great if I made my own sauce using something from a can and "jazzing" it up with spices.

If there is a silver lining at all, it is that I have learned to cook. I had to. And I am glad I did.

So I watch a little less tv and listen to the radio more (NPR). So my house smells like roasts or curries or fresh baked pies. I am a happier person and I spend a whole lot less time in the bathroom wretching out my guts. Cooking is now my passion.

Jestgar-- is your knee healed up? Are you happy you had the surgery? My mom is looking at it, but she is terrified it will fail.

[Jestgar]

BC (before celiac)

:lol:

The knee is doing great. It's a quick recovery - not back to perfect, but back to entirely usable.

Another woman here had the same surgery a week after mine and she's also very happy with her progress.

[ranger]

I do believe that I now belong in this catagory. I don't know if any of you read my post about being glutened by a coffee pot, so I'll fill you in. For about the last 3 years, I have gone with a friend to the local hospital to keep her company while she undergoes chemo. This is once a week and takes most of the day, so I have to eat there. At first, I grabbed food in the cafeteria (not good, but cheap) , and started to get sick everytime I went. Then, I found out that it was gluten, and started to order very carefully. I still got sick. So, I started to bring all my food from home. And still got sick. Last week, all I had from there was a cup of coffee- and got sick again! I realized that she picked up several donuts in a box nearby, and then pumped out a cup of coffee for herself, and then I pumped out a cup for me. Then, I started munching on some homeade gluten-free crackers that I had braught from home. I got cc'd from gluten so small that you couldn'd see it! Then, even I thaught I was crazy! Yesterday, I went back. I didn't even get coffe and I washed my hands before I touched my food, and I DIDN'T GET SICK! Yeah on one hand. I'm not crazy. Yech on the other. I have to be so diligent. I've always cooked most of my food from scratch, but I miss being able to pick up something or go out to eat when I'm just plain sick of cooking, so I know how you all feel about the restaurant situation. I am lucky to have a couple of places near that have gluten-free menues, but they're not cheap. Not like picking up a pizza, or picking up a bucket of chicken. I can make a pizza, or fry a chicken gluten-free, but it's not the same. But, not being sick all the time is so worth it! I've been gluten-free for 3 months now, and am feeling better everyday. Gone from 84lbs. to 95 lbs. Still not completely back, but so much better. And, I have learned so much from this sight! I would be lost and sick if it weren't for you guys! Thanks.

[jerseyangel]

Hi Ranger--welcome

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

Yeah, this works for me, too. I tend to make everything from scratch and use very few processed products. The ones I use, I found work for me by using trial and error. I do use things from Enjoy Life regularly.

I only add/try one new thing at a time, so I can gauge if I'll have a reaction. The problem with test strips (or any testing by batch in general) for me is that I've been fine with say, Lay's chips one time and not the next. It's impossible to say definitively whether a certain product is "safe" because the manufacturing process is slightly different each time. If the food tested was produced right after a run with gluten, even with strict cleaning of the equipment, it stands to reason that there would be more chance of cross contamination with it than a product made near the end of the run.

To me, it's not worth the risk of getting sick, so I steer clear rather than play Russian Roulette

I suppose you could test every time, but I would think that would get awfully expensive with the cost of the strips and the possibly wasted food. Plus, some of us may be sensitive to amounts that even the strips don't detect. If this works for others, great--truly, but it's not for me