Gluten-Free For Over A Year And Still In Desperate Of Help!

[naiiad]

It's been a while since I've posted here, but Ive been having some serious issues with adjusting to the gluten-free diet and it's been just destroying me.

Since I (self-diagnosed) my celiacs, it's been a bumpy ride. It's taken me a while to learn what I can and cannot eat. But after all this time, I'm starting to get a hang of what foods are safe and what aren't.

My big problem now is cross-contamination. It seems that my sensitivity to gluten has increased dramatically (I wonder if this is normal??). Where before cross-contamination wasn't an issue, now I'm getting reactions from coffee-shop cups (I now drink my coffee from a straw) and I almost always get reactions from poking through the family kitchen (it's really messy in there!) without washing my hands thoroughly. My family has been very supportive and has even "built" me my own kitchen space in the living room with a mini fridge and counters and all, but I still have to use the main kitchen for the stove and to get some essentials and I notice every time I'm not 100% careful I get a reaction. I try to only eat food (even toast) with clean cutlery. I wash my hands thoroughly before every meal. I rinse off all new food products before putting them in my fridge, and I don't let anyone near my cooking space. I realize that I need to stop using the main kitchen for anything, but it's really hard since it has the stove, main fridge, sink etc.

This whole thing just feels like madness. I`m trying really hard to keep my food clean but I`m obviously doing something wrong.

So, my question is: Is is normal to be this sensitive??? Sometimes I wonder if theres something else going on - I`ve never been tested, but all I know is that symptoms disappear when I`m on a 100% gluten-free diet with no chance of contamination and symptoms only immediately reappear when I`m exposed to gluten. Also I`m in desperate need of advice on how to keep my food safe in a rather messy household. So any and all advice would be greatly appreciated!

Thanks

[GlutenFreeManna]

It is common for celiacs to get more sensitive once they go 100% gluten free. That happened to me as well. You may need to make your house completely gluten free. I know in the past that whenever my husband brought gluten items in to the house I was more likely to be sick. Now, the only thing he is allowed to have is restaurant leftovers which he will take to work and heat up there. If for some reason your familt can't go gluten free at home perhaps you could do the reverse of what you have been doing. Make a designated gluten prep station in an area of the kitchen that you never have to touch. That way you will have less of a chance of getting something accidentally. Other people have made the compromise of only allowing gluten snacks like crackers but requiring they be eaten outside or in a specific room where they don't go very often.

ETA: also make sur eyour family knows when you are getting sick from cc. If you are not telling them they can't do anythign to change their eating/food prep habits. If they already see how often you get sick then they may be more likely to agree to a gluten free household.

[Edo]

I've been gluten free a little over a year now too. I used to live in an apartment which we kept gluten free, but now I'm in a household with a gluten-full kitchen. I too built my own little gluten free kitchen, outside my room in the garage (my own fridge/freezer, storage, preparation area, and a hot plate). I use the main kitchen sink to wash dishes, but I never touch anything there with my hands or let my stuff come into contact with anything. All they touch is water and I turn the water on and off with my wrist/forearm. I don't share anything that the gluten-eaters use, and I wash my hands often. I haven't had any CC symptoms yet.

As you say, the solution seems to be to separate your things more. Maybe a hot plate is in order for you too, and storing all your things separately. If you don't have your own cookware, dishes, and cutlery, you may need to get some. If some things of yours have to remain in the main kitchen, designate a certain shelf or cupboard just for you. And have your own shelf in the main fridge. Top shelves are preferable so no gluten can fall onto your stuff. And then of course let people know what not to touch. I hope things get better for you soon!

[over50]

  On 3/3/2011 at 6:48 PM, Edo said:

I've been gluten free a little over a year now too. I used to live in an apartment which we kept gluten free, but now I'm in a household with a gluten-full kitchen. I too built my own little gluten free kitchen, outside my room in the garage (my own fridge/freezer, storage, preparation area, and a hot plate). I use the main kitchen sink to wash dishes, but I never touch anything there with my hands or let my stuff come into contact with anything. All they touch is water and I turn the water on and off with my wrist/forearm. I don't share anything that the gluten-eaters use, and I wash my hands often. I haven't had any CC symptoms yet.

As you say, the solution seems to be to separate your things more. Maybe a hot plate is in order for you too, and storing all your things separately. If you don't have your own cookware, dishes, and cutlery, you may need to get some. If some things of yours have to remain in the main kitchen, designate a certain shelf or cupboard just for you. And have your own shelf in the main fridge. Top shelves are preferable so no gluten can fall onto your stuff. And then of course let people know what not to touch. I hope things get better for you soon!

over50

I have been gluten-free for 8 months and find myself still being intolerant of a lot more foods than before being diagnosed. It seems to be the name of the game...sigh...

My question is do you have your own (new) toaster and not the family one? and the other thought is that when you go out to a coffee shop you don't know what the cups have been in contact with, so even a straw may not be sufficient for you. Perhaps you need to take your own cup with you and just get it filled that way you know nothing is cc. This whole situation just takes time and difficult though it is, patience! For my part being older means that the healing will take longer, in your case if you are young quite likely you will be able to ingest other foods in a shorter period of time. Good luck, and if you can afford to get tested it does help to know definitively what indeed is wrong with your system.

[naiiad]

It`s such a relief to know that what I`m going through is not uncommon! I guess going gluten-free was hard in the first place, and now I feel like I`m going through all of that again trying to accommodate my higher sensitivity levels and its so frustrating.

Thank you all so much for the great tips. Unfortunately, it`s impossible for my family to go gluten-free themselves due to high gluten-free food prices. However, they are extremely supportive and try their best to accommodate me and take precautions. My parents are willing to buy me a bigger fridge so I don`t have to use the main one at all, I`m considering getting a hotplate, and I already have my very own toaster oven. This is all so overwhelming, but I think that once I learn to keep what I put in my mouth 100% separate, I`ll stop getting reactions.

And @over50 I've started drinking my Starbucks coffee through those stirring straws. I bet I look kind of silly but that way I don't have any problems, and drinking out of a straw is kind of fun anyway heh.

Thanks again everyone for your response, I'm feeling more confident about handling this.

[Takala]

Three things can be going on.

One, you are unwittingly getting cross contaminated from something you think is safe, and might even be labeled as "gluten free."

We ate out at a restaurant that has a gluten free menu and that we've eaten out successfully at many times before, and once they served me a different tea than I ordered (it was flavored when I requested plain) and another time the tea cup was just sticky and scummy and we sent it back for a new one without pouring anything. Yech! At another famous coffee chain they've also served me the wrong tea that I know that flavored brand did have gluten in it, after I requested PLAIN, and I sniffed it before I drank it, smelled the spice, then looked at the tag, wrong kind again, so I don't go to them anymore. It's not like they were busy, the counter person just wasn't paying attention. I've gotten ferocious migraines from supposedly safe tea drinks which the company websites say are gluten free, from something in either the tea or the allegedly safe milk substitute. I've also gotten nailed badly at a no name coffee shop from a coffee drink, when it changed ownership.

These companies do not guarantee that whatever they are running through their coffee grinders are gluten free, nor will they guarantee the actual status of their flavorings, nor are they doing more than rinsing sometimes between batches. I have learned that if I want something with caffeine, out of the house, to stick to tea, plain, and insist on seeing the actual brand/type and smelling it before tasting. Or bring my own coffee (dried granules) and have them add hot water. I keep packets of sweetener in my purse. Or bring my own diet soda, or purchase a can or bottle. The only way I'll risk regular coffee is if I don't HAVE to do anything the next day, and if I've grilled the maker on just what they've done with it. Oddly, decaf tends to be a bit less risky because who drinks flavored decaf compared to regular. Disposable cups or the go- travel cup you bring, is your friend. Is this eccentric ? Are you kidding ? Have you seen the restrooms and kitchens in some of these places, and nobody understands germ theory ?

And I'm not a super sensitive person, re eating and drinking. It's just that for most beverage servers, they just don't know and don't understand the consequences. There is one bookstore chain where everybody has been lovely and made sure my "plain" tea request worked. THEY get my repeat business !

So, point being, you may be looking at the wrong source of cross contamination, if it's your house vs. The Restaurant. You could have a single food item messing you up. ( I've ruined a batch of several breads that all had the same non safe milk substitute put in them - to say I was annoyed would be putting it mildly. ) I gave up and use water for baking liquid now, mostly. It was on this site I find out that they used barley in the processing. I was not happy.

You may also want to try avoiding soy and seeing what happens.

Second, For your house, I would take a look at getting your own hotplate (be absolutely sure to never leave it alone, and always unplug it after you are finished cooking the item) and your own toaster. Your own toaster oven can be used to bake small things, besides being easier to clean, as well as the small, personal microwave can make bun in a cup gluten free quick breads, in little ramekins or cereal bowls. Small microwaves have gotten inexpensive. Also, be sure to be using your own pans if there are any that are non - stick surface, or if you are using something like bakeware where you just cannot scrub it out all the way, like a loaf pan. Ditto cast iron needs to be dedicated gluten free. With that, also, the sponge you use to wash the dishes with, the cutting board, the tupperware plastic storage if you use that, all need to be gluten free dedicated for your stuff.

Also, I would be laying down fresh paper towels in the microwave for my stuff, if I were sharing that with glutenoids. I think a roll of paper towels is one of the most useful things in the arsenal against cross contamination.

If you have indoor pets, you may want to put them on wheat free food. I have an indoor dog who is very, very allergic to wheat - I'm actually more worried about his cross reactions than mine, he gets spectacularly sick, whines, and scratches himself silly, and this meant the cat and the other dogs all went on wheat free gluten free food to keep it away from him. But this is one of those droolly breeds, and I'm not wanting gluten slobber on the floor that I have to then wipe up, either, and I don't want it getting licked on me. There's a lot of stuff like this, that people don't think of. I was at the vet with the allergic dog, and the woman next to me has some sort of toy breed that she says also has allergies and that she has to keep on anti- histamines to control. I am talking about the homemade rice/poultry based diet I feed if I can't find the brand of dog food that works, and talking about how well that's gone. So the little dog comes out from the back treatment area, and she, the owner, takes a generic biscuit out of the bowl on the counter and gives it to the dog !!! I'm thinking, oh, no, no wonder this dog has problems, surely she has no idea what is in that biscuit, and she just told me the dog can't eat x, y, and z.

If you have sensitive skin, you may also want to explore going to a non gluten containing personal soap and shampoo. I know that officially there is not supposed to be a problem, but unofficially, for some of us, we are in deep trouble with gluten, oat, or even soy bearing shampoos or conditioners in terms of what our skin does with them any time they come near our mucous membranes. Eye makeup - oh, my (see mineral makeups - a miracle for some of us with really sensitive eyes. ) Pure apple cider vinegar mixed one to seven with water is a great hair rinse. A tiny dab of pure shea butter or coconut oil is a great hair conditioner. Safe bar soap can be used for a shampoo bar, in a pinch. ( Again, for those of us with allergic pets, do not wash an allergic dog with shampoo that has the forbidden ingredient, unless you like vet bills or can keep the dog from ever licking itself again. Going to a safe shampoo is a "two -fer." )

Since you mentioned you were breaking out in the kitchen, I'd thought I'd mention this, as one of the things we've done is to go to very plain natural type dish soaps and un scented laundry detergents. I'm not the only one in my family that has had these topical reactions. Sometimes using the harsh soap in a public restroom, that is really perfumey, will start a mild skin reaction, so I make sure to rinse extra, extra well.

[dilettantesteph]

It isn't uncommon. It happened to me too, and keeps on happening. Whenever I think it won't go any further, it does. It can be quite a challenge. I do feel healthier than I have in over 30 years though.

[kate1]

  On 3/3/2011 at 8:20 PM, naiiad said:

It`s such a relief to know that what I`m going through is not uncommon! I guess going gluten-free was hard in the first place, and now I feel like I`m going through all of that again trying to accommodate my higher sensitivity levels and its so frustrating.

Thank you all so much for the great tips. Unfortunately, it`s impossible for my family to go gluten-free themselves due to high gluten-free food prices. However, they are extremely supportive and try their best to accommodate me and take precautions. My parents are willing to buy me a bigger fridge so I don`t have to use the main one at all, I`m considering getting a hotplate, and I already have my very own toaster oven. This is all so overwhelming, but I think that once I learn to keep what I put in my mouth 100% separate, I`ll stop getting reactions.

And @over50 I've started drinking my Starbucks coffee through those stirring straws. I bet I look kind of silly but that way I don't have any problems, and drinking out of a straw is kind of fun anyway heh.

Thanks again everyone for your response, I'm feeling more confident about handling this.

You may have an issue with dairy....theres a lot of milk in a latte from starbucks.

Some other coffees in other coffee shops I avoid as the the machine mixes with the whitener can have gluten. i have tea no milk to be safe.

Sounds like you are really careful at home i would look for cc out of the house,

I rarely eat out for that reason.

[TotalKnowledge]

I have been gluten free for around 2ish years. The first year was certainly harder than the second. Its all old hat now.

You most certainly become more sensitive to small amounts of gluten after cutting it out of your diet. Cross contamination is a huge issue. I haven't been glutenend lately, but it happens from time to time.

I can tell a difference though when I get a small trace amount, and if I accidentally eat a substantial amount. The trace amount makes me feel bad, a substantial amount makes me feel terrible.