What Am, Or Am I Not Doing Right!?!

[Mal]

Seriously,

im sick of this :-X, i was diagnosed a month ago....and i STILL get sick, i eat something - it comes right back out, and now i have heart burn, WITH WATER EVEN!!! im sick of this, if im still getting sick, im at the point right now where im about to say EFF this, and i want gluten - if im going to get sick anyway, whats the difference, all of this gluten free junk is RETCHID!!!! i dont know how u ppl live, i cant stand this, and i feel like my body is starting to grow immune to my pain killers for my joint issues...i cant win!!!!

what do i do - i want to give up now - im DONE!!!

GAHHHHHHHH

[Ursa Major]

Mallory, have you tried eliminating dairy? It could cause all of those problems you still have. As could soy or a number of other things.

Your joint pains could be caused by other intolerances, too. Mine sure were, they're gone now unless I cheat and eat something like rice pasta (which I did the other day, and I suffered for it).

Check my links on salicylates and lectins (in my signature). The lectins cause the joint pains (and gluten is a lectin) and the salicylates cause the generalized muscle and skin pain as well as sore throat, and both cause heartburn. The lectins all cause gastrointestinal problems for me.

So, you may have to try an elimination diet to figure out what is causing you to still be sick.

[tarnalberry]

how do we people live? by eating foods that we like that don't make us sick.

the real question is how long it took us to figure out what those were.

you say you were dx'ed a month ago, so you've been eating gluten-free for a month. a couple of questions pop to mind:

1) have you been certain to eliminate ALL sources of gluten from your diet? including oats, shared condiment jars, shared toasters, barley malt in cereal, wheat in soy sauce, contamination on shared wooden spoons, cross-contamination on counters, fillers in medications, etc?

2) have you noticed absolutely NO changes at all?

3) have you identified any other intolerances?

4) have you found enough foods that you do like (meats, eggs, nuts, beans, fruits, vegetables, rice, quinoa, etc.), that aren't the nasty tasting replacements that you don't like, that you are getting enough food and nutrients into your body?

[darlindeb25]

Besides, a huge factor here is that your body in one months time has not had enough time to rid itself of all gluten--it takes time, some people get relieve right away in some form, yet still do have episodes for some time. Might there be cross contamination issues? Maybe a vitamin or medicine you are taking that contains gluten, shampoo, lotion, etc.

Do not give up yet--ok. We are always here for support.

[shayesmom]

  Mal said:

Seriously,

im sick of this :-X, i was diagnosed a month ago....and i STILL get sick, i eat something - it comes right back out, and now i have heart burn, WITH WATER EVEN!!! im sick of this, if im still getting sick, im at the point right now where im about to say EFF this, and i want gluten - if im going to get sick anyway, whats the difference, all of this gluten free junk is RETCHID!!!! i dont know how u ppl live, i cant stand this, and i feel like my body is starting to grow immune to my pain killers for my joint issues...i cant win!!!!

what do i do - i want to give up now - im DONE!!!

GAHHHHHHHH

After a month of diet, it would be surprising (to me) that you aren't noticing any difference at all. I know that everyone is different and some people can take up to 2 years to get better...but NO difference?

It may help if you double-checked all you are coming into contact with. Verify all your foods are gluten-free (including any rice mixes you may have). Wash down all your countertops, refrigerator shelves and other cooking surfaces. Check all your cookware (as teflon with scratches can harbor gluten) and throw out old wooden spoons and replace them with new ones. Then get in your bathroom, check your soaps, shampoos (THIS was a big problem here), hairspray and make-up....especially lipstick. Your comment on getting heartburn after drinking water makes me wonder about lipstick. But most importantly, call your pharmacist and find out if your prescriptions are gluten-free. You may be getting a daily dose of gluten and not even know it (and don't think that your doctor would "know better", because most wouldn't).

Once you've done all of that, if you've been 100% gluten-free and are still feeling awful, get a notebook and start writing down what you are eating and drinking. Keep a food journal for a few days and then start an elimination diet. I agree with Ursula that dairy could be a problem. There are many foods which promote inflammation and could cause problems. Most of the arthritis sufferers that I know who have used diet successfully to eliminate pain have had multiple food intolerances. The top problems seem to be gluten, dairy, soy, corn, potatoes, tomatoes, peppers, eggplant and even orange juice (commercial) and yeasts. It may just be that you have multiple intolerances going on and that you need to address these as well.

As for the taste issues with gluten-free foods. Yes, there are some out there which are awful, but there are also some that are better than their gluten-filled counterparts. My dh still eats gluten (as he's not a celiac) and he loves the Glutino pretzels more than regular. He also loves Pamela's pancake mix better than the homemade pancakes his grandma used to make. For junk foods, he also enjoys Tings!, Veggie Chips and we still can have Tostitos, Lay's original and Frito's. Dh also now enjoys eating at home more than eating out....and I do not have ANY gluten foods in my house. Nor do I have dairy or eggs and soy is very limited (pretzels and a few products with soy lecithin). I have made my own trail mix with Rice Crunch'Ems cereal, some gluten-free pretzels and cashews. Just sprinkle a bit of olive oil on them, add an Italian herb mix, coat them evenly and bake for about 30 minutes. The results are a tasty Chex Mix variation that not only satisfies a junk food craving, but when crushed up, makes an AWESOME coating for baked or fried chicken.

The best advice I can give you is hang in there. The first few months of this diet are very rocky and are full of points where you just want to give up and stick with what you know (and what's convenient). We've all been there. But it does get better. And after a year on the diet, you aren't going to be thinking about it this way. It takes time to create new habits. And it takes a bit more time after that to re-train your palette and begin to crave the gluten-free foods as opposed to the gluten-filled ones you've been eating for a lifetime. That doesn't happen overnight. We all can sympathize with your frustration. Let us know how we can help. You aren't alone in this.

[Guest nini]

hang in there... it took me 6 months before I noticed ANY improvement and 2 years before I felt a lot better... Stick to foods that are naturally gluten-free, avoid the substitute products for a while until you find some you like. There are a lot of nasty ones out there, but there are even more really good ones, and the choices now are even better than when I started this almost 4 years ago.

I also had to eliminate dairy at first so I felt like my choices were really limited, but the truth is there is a lot you can eat. Focus on that.

Like Steak and Baked Potatoes, Tacos with ground beef (I season mine with Publix brand taco seasoning but you can use mc cormicks chili powder, some garlic powder and salt and pepper... and Ortega Taco Shells or Mission Taco Shells (they are labled gluten-free) Galaxy makes a rice cheese that has only a minimal amt of dairy in it and it melts well, Salads with either baked chicken, tuna or ham on them... oil and vinegar was what I stuck with until I could add dairy back in... , Oh lets see, asian stir fries with veggies, chicken, beef, or pork, LaChoy soy sauce and steamed rice, or LaChoy sweet and sour sauce... Baked chicken or pork chops...

[StrongerToday]

While I noticed an improvement after a month or so (no brain fog, actually had some energy) it was still almost a year before I regular/solid poops. I still have heartburn, but I figure that's just me. It's better then what it used to be.

But if you're having joint issues, look into other intolerences too. Start keeping a food diary, nothing what/when you ate and then in another column write down "reactions" and at how time and how they are occuring. You might also want to consider an elimination diet - eat just a few plain foods (chicken, rice, etc.) for a week, then add in one food at a time every four days. If you have a reaction you'll easily be able to spot what food gave it toyou.

It gets better I promise!