Need Someone Who Knows What They're Talking About

[jennennyc]

Hi everyone -

This is my first time here, so here's a little background on my situation:

I have been continually sick/run down for about 4 years now. I have been diagnosed and then un-diagnosed with IBS, CFS, fibromyalgia, mono, hypothyroid, hormone imbalances, anemia and all kinds of nutritional defficiencies, but everything is always just "slightly low" and never enough to point to a problem. After all these tests, I have been bled dry (both literally and monetarily!) and cannot afford or stomach the idea of shopping around for a new doctor for the nth time, getting blood tests, biopsies, etc. SO, at the suggestion of my acupuncturist and two friends who are celiacs and had similar health problems, I started a gluten-elimination diet last Friday to try and figure out if gluten could be the cause of my problems.

So, I would like to hear from some of you who may have been through this already to answer a few questions:

1. How long does it usually take to work? (I was told to try it for 2 weeks - is that long enough?)

2. Will it still work if I am accidentally exposed to trace amounts of gluten? Or do I have to start over if that happens?(for example, I went to a restaurant where there was nothing for me to eat, so I had a garden burger and took the bun off --- then I learned that many veggie burgers contain gluten!)

3. Any other tips or advice from anyone else who did a diagnosis through elimination diet?

Thanks in advance for any help you can give me. I'm really hoping I'll be back to feeling 24 instead of 94 soon.

[Poppi]

  jennennyc said:

1. How long does it usually take to work? (I was told to try it for 2 weeks - is that long enough?)

It can take a few days or it can take months. Everyone heals at a different pace. I think most people find some improvement in the first couple of weeks though.

  jennennyc said:

2. Will it still work if I am accidentally exposed to trace amounts of gluten? Or do I have to start over if that happens?(for example, I went to a restaurant where there was nothing for me to eat, so I had a garden burger and took the bun off --- then I learned that many veggie burgers contain gluten!)

Nope. Even if that garden burger patty had been 100% gluten free it was contaminated with the bun. If you had fries then they were probably fried in a contaminated fryer. It's all or nothing if you want to see results. I am sick right now because a few days ago I touched my son's graham cracker with one finger and then forgot to wash my hands before eating my own snack and licking marshmallow off my fingers.

  jennennyc said:

3. Any other tips or advice from anyone else who did a diagnosis through elimination diet?

Patience. With yourselves and others. The easiest thing to do for the first weeks and months is to go to a whole foods diet. Eat things that are naturally gluten free like meats, vegetables, fruit, dairy products (if you can digest dairy) and eggs. When you do add new foods add one at a time and wait a couple of days to make sure it doesn't make you feel horrible.

Don't eat out. For the first little while just don't do it. It's not worth it.

Chin up and remember that if this works it'll be a whole new life for you and that is worth the inconvenience.

[domesticactivist]

Hi there,

There is a chance you will see results that quickly just avoiding gluten, but for many people it takes longer. Also, you need to really, truly avoid gluten! That means even trace amounts. As gluten has been out of your diet a while, you will probably become more aware of it when you get "glutened."

Here is a post on my blog which explains how to really go gluten-free. I hope it helps!

All the meal and food ideas on our blog are gluten-free as well.

[jennennyc]

  On 6/21/2011 at 9:04 PM, Poppi said:

Nope. Even if that garden burger patty had been 100% gluten free it was contaminated with the bun. If you had fries then they were probably fried in a contaminated fryer. It's all or nothing if you want to see results. I am sick right now because a few days ago I touched my son's graham cracker with one finger and then forgot to wash my hands before eating my own snack and licking marshmallow off my fingers.

Wow... I don't know if it's even possible for me to be that vigilant! I live in a small apartment with my boyfriend. We have no room to cook separate meals, and he doesn't want to go gluten-free with me (I don't blame him!), so it gets complicated. As I'm sure many others already know, avoiding contamination is tricky with limited space, time and money. I guess I'll have to try harder, though.

  On 6/21/2011 at 9:04 PM, Poppi said:

Patience. With yourselves and others. The easiest thing to do for the first weeks and months is to go to a whole foods diet. Eat things that are naturally gluten free like meats, vegetables, fruit, dairy products (if you can digest dairy) and eggs. When you do add new foods add one at a time and wait a couple of days to make sure it doesn't make you feel horrible.

Don't eat out. For the first little while just don't do it. It's not worth it.

Chin up and remember that if this works it'll be a whole new life for you and that is worth the inconvenience.

Thank you. I really appreciate your help and encouragement. Hopefully I will be able to be more careful about it and see if it really makes a difference. I will try to abstain from eating out for a while (which is quite a challenge for lazy me...), but my birthday is coming up soon, and I will also be travelling very soon - any suggestions for that? How do I eat gluten-free when I am travelling and unable to cook for myself or even have a place for my groceries?

Thanks again. You've definitely given me a lot to think about.

[jennennyc]

  On 6/21/2011 at 9:33 PM, domesticactivist said:

Hi there,

There is a chance you will see results that quickly just avoiding gluten, but for many people it takes longer. Also, you need to really, truly avoid gluten! That means even trace amounts. As gluten has been out of your diet a while, you will probably become more aware of it when you get "glutened."

Here is a post on my blog which explains how to really go gluten-free. I hope it helps!

All the meal and food ideas on our blog are gluten-free as well.

Just finished reading it - very helpful, thank you. However, I am concerned because I can't currently afford to through out all of my contaminated kitchen items (most of them were donated used from family and friends already!)

Also, any advice on how to deal if making your whole household gluten-free isn't an option?

Thanks,

Jenny

[Hawthorn]

  On 6/21/2011 at 9:48 PM, jennennyc said:

Just finished reading it - very helpful, thank you. However, I am concerned because I can't currently afford to through out all of my contaminated kitchen items (most of them were donated used from family and friends already!)

Also, any advice on how to deal if making your whole household gluten-free isn't an option?

Thanks,

Jenny

Hey jenny

I couldn't afford to ditch kitchen items either. A compromise that worked well for me was getting rid of the wooden things. They absolutely must go. It's impossible to get those gluten free. Pans etc were cleaned out thoroughly with alchohol. Doesn't need to be the pricey stuff, but I heard that alchohol will get rid of the gluten traces and I had no problems from things treated in this way. I did buy a seperate chopping board, and cutlery set (make sure these are easily identifiable as different)

My whole household is not Gluten free. I'm not going to lie, it's tough sometimes - I have children and they don't sometimes consider where they are shaking crumbs

As I am the main cook of the household, all meals prepared for the family are gluten free, with the occasional exception. In the case of whipping up a batch of wheat pasta, we are careful to 'alchohol' the pans/spoons used.

I was a keen baker pre gluten free. I found that this just wasn't working though, and so no Gluten flour comes into the house now. It's just so easy for flour dust to get in the air and settle over everything.

I store potatoes/onions in covered tubs now. Breadcrumbs are another one that like to fall into everything, so anything that is open now and to be used by you should be kept covered.

Be scrupulous about handwashing....particularly if you are like me and fingers absentmindedly find their way to your mouth.

Request that gluten eaters wash their hands well after eating, and certainly before using shared items such as a computer, tv remote, that kind of thing.

You have to be incredibly careful in the kitchen. Anything that gets touched by gluteny fingers is a possible risk to you. Think, fridge handles, faucets/taps, cupboard doors.

If you can, keep your gluten free food stuff above the level of the gluten food stuff. You use the top shelf of the fridge etc. That way, there is far less chance of something dropping onto your food.

I have a seperate cupboard in which I keep my cutlery, cup, plates, glass - that way there is no chance of someone touching these whilst getting a plate for that freshly made sandwich.

Be aware of cloths used to clean down surfaces too. If used on a glutened surface, straight into the wash - or use the disposable paper type.

All of this probably sounds really huge to you right now. I was completely overwhelmed by it. I suspect all of that may sound a little extreme too, but for myself, even tiny tiny amounts can cause me to blow up like a balloon. I got glutened once by a handwash with wheatgerm oil in it

When I first started with this, my family were like, 'oh no way are we giving up gluten, not a chance'. After seeing the effect tiny amounts have on me, they all volunteered to go gluten free. I am on a gluten challenge at the moment, so it's not an issue currently. After that, we will see.

To be successful at this it is my belief that it takes work from everyone involved. Your boyfriend may not want to go gluten free with you, but he must be extra careful, otherwise it will drive you insane worrying about gluten traces. If he takes care of his end, it makes it a lot easier on you.

It does take time and patience initially. Silly things like making your boyfriend a pasta meal and testing to see if it's 'al dente' by tasting it (done that one) or tasting a sauce you are making to check seasoning that may contain wheat flour (done that one too), or have one of the kids in my case, slap a piece of bread down right next to that nice salad you were slicing......or eat a biscuit then pinch a piece of cucumber right out of that salad bowl.

Keep seperate margarine/spreads. It's pretty much impossible to avoid cross contamination with these things. Jelly, peanut butter. Anything you would scoop something out of pretty much.

There are probably things I'm missing here but it's late and I'm kinda sleepy. If you're anything like me you will probably have a lot of 'doh' moments initially but it does start to become second nature and you will see things yourself that may be an issue as you become more aware.

Good luck and I really hope that it helps with your health problems

[sa1937]

  On 6/22/2011 at 12:13 AM, Hawthorn said:

I couldn't afford to ditch kitchen items either. A compromise that worked well for me was getting rid of the wooden things. They absolutely must go. It's impossible to get those gluten free. Pans etc were cleaned out thoroughly with alchohol. Doesn't need to be the pricey stuff, but I heard that alchohol will get rid of the gluten traces and I had no problems from things treated in this way. I did buy a seperate chopping board, and cutlery set (make sure these are easily identifiable as different)

Actually scrubbing with soap and water will get things clean. I've never heard of using alcohol before although it could give you very sterile gluten.

I just used common sense going through my kitchen...if I could get it clean, I kept it. If not, out it went. Of course, I have since splurged and bought a bunch of new things because I felt I deserved it.

[jennennyc]

Oh goodness... thanks everyone. I am a bit overwhelmed by all of this fear of cross-contamination. I'm having a hard enough time just avoiding the obvious forms of gluten. Since I'm fairly recently out of college, I'm not exactly used to cooking and planning meals, so not reaching for pizza or granola bars or frozen lasagna when I'm hungry is a *huge* adjustment in and of itself.

It is good to hear I don't have to throw everything out, though. And luckily I don't have much wooden stuff to begin with! (It's mostly just cheap plastic and a few hand-me-down pots and pans). Did any of you have trouble learning to plan meals and come up with easy gluten-free meals? My boyfriend is a sweetheart and does most of the cooking, but I have a hard time getting him to just remember to read ingredients, never mind checking for contamination, so I think I'm going to have to start doing all the grocery shopping and cooking all of my own meals, which is really hard with constant fatigue. I usually have to sit down and take several breaks at the grocery store, and I get dizzy and sometimes even faint while I'm standing in front of the stove cooking, which is kind of scary.

I know a lot of you have probably been through something similar, but I'm so overwhelmed and disheartened by all the things I can't have and can't do, and I'm not even sure this is possible for me. ...and even if it is... what if it's all for nothing? What if it doesn't work?

[GlutenFreeManna]

If you don't want to get new stuff you can just avoid using the stuff that could be cc risks. For example, use the oven and bake with foil or parchemnt paper down on your old pans (if you have nonstick--stainless steel can be srcubbed if it's not too beat up). If you have a wooden or plastic cutting board with scratches put down a piece of paper towel or wax paper or cut on aplate instead of using the cutting board. Don't use the toaster. If you do get gluten-free bread and need to toast it you can try putting it under the broiler in then oven (on foil). If all this works then you can consider gettign all the new dedicated gluten-free equipment you will need. Here's an example of a really simple meal:

Baked chicken seasoned however you like--make a large batch so you have leftovers

Plain frozen steamer veggies made in the microwave (green beans, corn, peas, carrots, broccoli, snap peas, spinach, whatever you like)--you can get the kind that steams in the bag so it's easy

Baked potato made in the oven or microwave.

Some other main dishes that are easy to bake are: fish, steak, pork chops. There are lots of gluten-free marinades, sauces liek BBQ or seasonings you can play with. Just start searching for recipes.

Some other side dishes: Plain rice. it's easy to make on the stove as long as you measure the water and keep an eye on it but many people like rice cookers. You might want to invest in one just to make it easy for you to cook up a big batch of rice.

Sweet Potatoes--bake just like a plain potato.

Salads and homemade soups are pretty easy and inexpensive too. And don't forget about fruit. Most canned fruit will be fine if you can't afford fresh. Actually I've never seen gltuen in canned fruit but do chekc the lables anyway as it will help you get in the habit.

some other no-cook snack ideas-- rice cakes with peanut butter, raw veggies with hummus or whatever dip you like, yogurt, tortilla chips and salsa, popcorn, etc. There are tons of snacks that are just naturally gluten-free and easy to make without having to replace your cookware.

Check out the "what's for dinner" thread to see what people are eating.

[suziq0805]

  On 6/21/2011 at 9:48 PM, jennennyc said:

Just finished reading it - very helpful, thank you. However, I am concerned because I can't currently afford to through out all of my contaminated kitchen items (most of them were donated used from family and friends already!)

Also, any advice on how to deal if making your whole household gluten-free isn't an option?

Thanks,

Jenny

I completely understand not wanting to spend a lot replacing stuff. Not sure how tight your budget is, but I just went to walmart and bought a few basics. A cooking utensil set that was only a couple dollars (it came with 2 cooking spoons and 2 turners), a cutting board, measuring cup and some ziploc containers for leftovers. Instead of buying the more expensive tupperware containers I just decided to get the Ziploc ones because they are microwaveable and dishwasher safe too and much cheaper...for $10 I could get a number of containers in a couple different sizes. We just bought a new cookware set because I'm going gluten-free to see if I feel better (not diagnosed with celiac or intolerance) and my son needs to be gluten-free. I wanted new cookware to make sure I could avoid accidental gluten exposure. There are some cheaper sets out there if your budget allows. Putting foil over baking pans is a great idea too. Our house is not gluten-free so here are some things we've done:

-Separate cooking utensils (and different colors)

-Gluten-free foods and gluten foods are not stored together....gluten-free is stored above gluten if they share a cabinet to avoid crumbs falling to the shelf below

-Gluten-free dishes are washed before dishes that contain gluten

-Gluten-free food is cooked above gluten food in the oven

-Once you switch to eating gluten-free it's easy to just buy gluten free options of your favorite foods...candy, cookies, and such. You may spend a lot of $$ trying different foods so sticking to whole foods instead of processed is a great way to start.

-Search online for recipies. I'm looking for a cookbook but have found that many are full of recipies that I would never use! I also am not much of a cook...my mom cooked a lot of processed foods so I'm just learning how to really cook. Rice is cheap though!!

-Look to see if you community has a celiac support group

-Don't just shop in the gluten-free section of the store...I learned the hard way that there are many gluten-free "regular" foods. For example....I almost bought really expensive yogurt and spaggheti sauce until I realized that common brands are actually gluten-free. The first few times I went grocery shopping it was overwhelming, but it does get easier!!

-I recently came across an app for my ipod called "is that gluten-free". It lists tons of gluten-free foods. I've used it a few times while shopping, and so far it seems to be accurate.

[Harpgirl]

I second what most have said here, but just wanted to add (because I love yogurt ) Glutenfreemanna suggested yogurt as a snack, but becareful of Activia. It says on the label, "Manufactured in a plant processing wheat." Yoplait is good, it even says "gluten-free" on the label.

[Korwyn]

  On 6/22/2011 at 12:36 AM, sa1937 said:

Actually scrubbing with soap and water will get things clean. I've never heard of using alcohol before although it could give you very sterile gluten.

I just used common sense going through my kitchen...if I could get it clean, I kept it. If not, out it went. Of course, I have since splurged and bought a bunch of new things because I felt I deserved it.

Scrubbing some things with soap and water did not work for me. We had to replace our cutting boards, non-stick cookware, and baking stones. No matter how hard I tried to get them clean, I kept getting sick. It wasn't until I stopped using them that I stopped having diarrhea, when I went back to using them (even after multiple rounds of scrubbing/soap/water/boiling water/dishwasher/etc) I started having symptoms again.

[sa1937]

  On 6/22/2011 at 9:07 PM, Korwyn said:

Scrubbing some things with soap and water did not work for me. We had to replace our cutting boards, non-stick cookware, and baking stones. No matter how hard I tried to get them clean, I kept getting sick. It wasn't until I stopped using them that I stopped having diarrhea, when I went back to using them (even after multiple rounds of scrubbing/soap/water/boiling water/dishwasher/etc) I started having symptoms again.

If I could get it clean, I kept it. If not, out it went. Actually I did replace a lot of things like you also did...new cutting boards, new wooden spoons, new nonstick cookware, new toaster, etc., etc. I ditched a lot of Tupperware that I knew I'd never get clean. So obviously those are things that I'd have never gotten clean with soap and water.

[Harpgirl]

  On 6/22/2011 at 9:27 PM, sa1937 said:

If I could get it clean, I kept it. If not, out it went. Actually I did replace a lot of things like you also did...new cutting boards, new wooden spoons, new nonstick cookware, new toaster, etc., etc. I ditched a lot of Tupperware that I knew I'd never get clean. So obviously those are things that I'd have never gotten clean with soap and water.

Tupperware! Maybe that's how I got glutened. I just polished off the other half of a watermelon that's been sitting in tupperware that we on occation would use to store spaghetti. Grrr. I've been glossing over the kitchen. I guess I need to get a bit more detailed.

[sa1937]

  On 6/22/2011 at 10:06 PM, Harpgirl said:

Tupperware! Maybe that's how I got glutened. I just polished off the other half of a watermelon that's been sitting in tupperware that we on occation would use to store spaghetti. Grrr. I've been glossing over the kitchen. I guess I need to get a bit more detailed.

I did keep a bit of Tupperware if it was in good condition. Sadly, my favorite Tupperware mixing bowls got tossed, as well as the Tupperware colander I liked so well. While my flour canister wasn't Tupperware, I taped it shut and threw it out as I didn't want to deal with even touching the flour or having it in the air. I felt kind of off after cleaning out my pantry...gave my DIL a big box of groceries since they're not gluten-free.

And as I replaced things, I did it gradually except for those things I needed right away (like wooden spoons, colander, etc.) Heck, I'm still buying. And I love parchment paper and aluminum foil.