Starting To Feel Like I'll Never Get Better..

[SamAlexPesk]

I've been gluten free for almost a year. At first I didn't take it seriously and would "cheat" a lot, treating it more like a diet rather then a disease. I don't do that anymore, I try very hard to live completely gluten free. I just don't understand..I still feel lousy 99% of the time. The only time I've felt better for a entire day was a week I went raw to try it out. I'm considering going completely raw, I feel like it's my only option. At this point I'm willing to try anything to feel better. I was wondering how important is it to have my own appliances, pots, pans, utencils? We're in the process of moving into a new house, so my family was going to wait a bit to buy me my own stuff. I'm starting to think the CC is really getting to me and it's not worth the wait. Any advice?

[Rya]

It sounds like there are a few possibilities for why you feel lousy, and I think we can help you get to an answer.

First, a red flag went off when you said something about CC. Since you've been gluten-free, have you been in a kitchen with gluten? That alone could explain the lousiness, especially if you are very sensitive to gluten. So many people on this forum, myself included, have tried to live in a kitchen with gluten and run into CC issues. Not to say it's impossible, but very very difficult. Lots have come to creative compromises that let the whole family be happy, if you scroll back a few posts to "how gluten-free is your household" you'll find some great ideas.

Second, have you bought any new products lately (toothpaste, body wash, a family member's lotion, etc) that may contain gluten? These things can sneak in easily.

Third, you may be sensitive or allergic to more than gluten, which is possible since you said you felt better on a raw diet. (Might I ask what that entails?)

So, some things to think about. All is not lost yet!

[katifer]

i have been gluten-free for about a year now too---found out a couple months ago that sugar cane makes me feel just as horrible as gluten does---i struglge to not have it but honestly i feel great when i dont have it.just another idea. O and our house is Gluten free....

[GFinDC]

So you felt good for 1 week on raw diet? Why not go back to tha tdiet and see if it helps? It sounds like that would be a pretty good elimination diet also. I don;t know if you are familiar with the elimination diet idea, but it is a good way to find food intolerances. One way is to start from a core of safe foods, then slowly add additional test foods in one at a time. No more than 1 new food every other day is a good plan. Keep a food diary and if you find a problem food, drop it out of the diet. Then keep going and adding foods one at a time as before. There is a possibility that you have more than 1 food allergy so you don't want to stop at the first one you find. Don't forget that vitamins, medicines, and toothpaste are all suspects in the diet just like foods. A good simple core diet would be rice with veggies. Maybe rice and peas to start. You are basically doing food intolerance detective work. So take it slow and add things slowly. Too many suspects can confuse even the best detective!

[oceangirl]

Unfortunately, with this disease there is a huge learning curve. Yes, your house may need to be gluten-free or certainly more strict than it is now. Try keeping a food log with how you feel each day. Write everything down that goes in your mouth along with any changes to personal products. This can be quite illuminating. 3 years later I'm still doing this because it's helped me SO much. (Now it's just a habit)

Good luck and feel better, and, yes, it can take awhile...

lisa

[SamAlexPesk]

Thank you for replying! I guess my kitchen is pretty full of gluten, though I keep my food seperate from everyone elses. I live with my Mom, Dad and 3 sisters who are all gluten loving people..haha. I must admit they all try verrry verry hard to make sure they dont CC anything, they know how ill I get when it has happen. I'm very lucky my Mom is absolutely amazing, shes always makes me a gluten free version of whatever they are eating..shes a great cook. I do however use the same appliances, pots, pans, grill and utencils as they do..I'm starting to think that could be the big problem.

I actually went out last night and bought all new gluten free products, and a shower caddy so I don't have to worry about everyone else in my family using them.

The raw diet I did basically consisted of seeds, nuts, dried fruit, fresh fruit, lettuce, balsamic vinegar & oil. I kept it very basic. I must say within 2 or 3 days I could really notice the changes. I wasn't bloated like I usually am, and wasn't running to the bathroom every hour. It was hard to stick to though. We have a beach house where the regular is burgers, steak, and pretty much anything else cooked on the grill. The summer is pretty much over, so I'm thinking after this weekend I might go raw again to see if it helps

[jewi0008]

So you felt good for 1 week on raw diet? Why not go back to tha tdiet and see if it helps? It sounds like that would be a pretty good elimination diet also. I don;t know if you are familiar with the elimination diet idea, but it is a good way to find food intolerances. One way is to start from a core of safe foods, then slowly add additional test foods in one at a time. No more than 1 new food every other day is a good plan. Keep a food diary and if you find a problem food, drop it out of the diet. Then keep going and adding foods one at a time as before. There is a possibility that you have more than 1 food allergy so you don't want to stop at the first one you find. Don't forget that vitamins, medicines, and toothpaste are all suspects in the diet just like foods. A good simple core diet would be rice with veggies. Maybe rice and peas to start. You are basically doing food intolerance detective work. So take it slow and add things slowly. Too many suspects can confuse even the best detective!

Ok...this is EXACTLY what I need to do, too! I can't figure out what's wrong with me BUT I do know that I once did a raw, detox diet and on the 13th day everything was gone and I felt phenomenal. I was eating a LOT of different types of food then. Now I just want to cut it to the bare necessities, eliminate and try to figure out what does not like me. Instead of starting with rice and veggies, could I start with Quinoa and veggies? And should we limit to only a handful of veggies to begin with? (Where is a list of the SAFE core foods?!) Any advice for us would be great...and to the person who put up the post - if you want to do this with me - pm me...maybe we can figure it out together!

[GFinDC]

The core foods should be chosen by each individual to suit their needs. The Quinoa sounds fine if that's your preference. The idea is to have something you can depend on food wise. Then add an item at a time and track your reactions. I suggest eliminating goitrogens first off, they are foods that interfere with your thyroid function. You might want to eliminate nightshades also, as some people have intolerances to them. Potatoes and tomatoes there may be few others that are nightshades. I don't have a problem with nightshade so I don't have a good list.

Your safe foods are the ones you choose yourself by adding them one at a time to your diet. Unless you have a negative reaction in which case you remove that food. If you get glutened you can retreat, or regroup or whatever you want to call it by resuming your core foods, quinoa and veggies or rice and veggies, or whatever you have chosen.

The wheat barley. and rye are the ones that are totally off limits.

These goitrogenic foods should be out to start but you can add them if they don't bother you. I'd wait until a little ways down the diet road before adding these goitrogens, since you may have a thyroid problem and not realize it.

Open Original Shared Link

Goitrogenic foods

Certain foods have been identified as goitrogenic. These foods include:

* Soybeans (and soybean products such as tofu)

* Pine nuts

* Peanuts

* Millet

* Strawberries

* Peaches

* Spinach

* Bamboo shoots

* Radishes

* Horseradish

* Vegetables in the genus Brassica

o Bok choy

o Broccoli

o Broccolini (Asparations)

o Brussels sprouts

o Cabbage

o Canola

o Cauliflower

o Chinese cabbage

o Choy sum

o Collard greens

o Kai-lan (Chinese broccoli)

o Kale

o Kohlrabi

o Mizuna

o Mustard greens

o Rapeseed (yu choy)

o Rapini

o Rutabagas

o Tatsoi

o Turnips

[tmb]

sam, you said,

the regular is burgers, steak, and pretty much anything else cooked on the grill.

I assume you know that burgers might not be pure meat but will have gluten products mixed in, if you are eating these as well.

[jerseyangel]

I'm very lucky my Mom is absolutely amazing, shes always makes me a gluten free version of whatever they are eating..shes a great cook. I do however use the same appliances, pots, pans, grill and utencils as they do..I'm starting to think that could be the big problem.

Your mom sounds great!

A couple things stand out for me--if your foods are being prepared at the same time as the gluten eaters', it's quite possible that you are getting CC'd. You need to have your foods touch only clean pans that are either stainless steel scrubbed clean or unscratched non-stick. Remember that if both gluten and non-gluten foods are being prepared, not to use the same utensils for both--and of course the gluten-free foods should be made first.

You need separate wooden spoons, collander, toaster--these can't be cleaned thoroughly enough of gluten to be shared. When your foods are being prepared, the cook must wash their hands after handling gluten containing foods. Always use a clean plate under your foods--don't use the countertop.

You also need your own butter/peanut butter/mayo, etc--or buy the squeeze varieties. Condiments are easily contaminated by dipping a knife that has just touched regular bread.

On the grill, use foil under your meats and don't use the same utensil that was used on the other's meats. A sauce or seasonning that contained gluten could remain on the grill and contaminate your food.

Use a separate kitchen towel. Sponges can harbor gluten along with who knows what. I use dishcloths and throw them in the wash at least once a day.

It sounds to me that your raw diet helped because there was no CC risk--your seeds, dried fruits and simple salads wouldn't have come in contact with any contaminated pots, pans or knives so it may not be because it was a raw diet, it may be that you were not being CC'd while you were eating that way.

It's tricky at first to get this all straight, but once you do it becomes automatic A lot of it is common sense--gluten is a sticky substance that has to be washed off. Heat doesn't kill it, and you can't just brush it off your hands.

Also, make sure that any medications or vitamins you take are gluten-free. Check on the source of the vitamin E/tocopherals (these can be sourced from wheat)if you see that on a label. Go through your personal care products --especially lip procucts--and make sure they're safe--you can call the manufacturer and they'll tell you or ask here and we'll help. If your mom uses hand lotion and she handles your foods, her's needs to be gluten-free too.

[AndrewNYC]

Success on the raw diet could be because you lack digestive enzymes. Also look into other food allergies like these people say. Maybe fructose intolerance.