Confused

[clockworkjoce]

i've had stomach problems and health issues like anemia and rashes for years. my grandmother is a celiac, so on a whim i went on the gluten-free diet thinking maybe this is it. well, after the first month i felt incredible and that horrible bloating went away, the rashes are subsiding, and as far as the anemia goes i'm feeling less tired and a bit more energetic.

about two weeks into my new diet, i was (a word i learned here) glutened and became violently ill (vomiting, etc.). so i feel as though i more than likely have the disease, but my problem is that i don't have insurance and it will be a long time (months) before i will get health insurance so i can't go and get tested. i intend to get tested when it is a possibility, but for now it's a really strange place to be--not really knowing. have other people gone through something like this? any advice?

[CarlaB]

Welcome to the board. Dietary response is good proof and all the proof you really need. If something makes you sick, why eat it? The bad thing is, if you feel you need testing, you cannot go gluten-free until afterward. But if you go gluten-free now, you can get gene tests later if you're really curious.

[kbtoyssni]

I think you've already done enough testing to prove you have celiac disease. As Carla mentioned, once you go gluten-free and your body starts healing, any blood tests or biopsies you get won't be positive. You have to be eating gluten to have antibodies and/or intestinal damage.

I diagnosed myself from a positive dietary response. I did get a blood test done, but I'd already been gluten-free for too long and it didn't come back positive for celiac. And that's just fine with me because I feel better than I have in nearly a decade. An "official" diagnosis of me either having celiac or not having it wouldn't change the fact that I will stay gluten-free for the rest of my life because the diet has made such a postive impact on my life.

[mamaw]

I too agree if the diet made you feel better then do the diet & when insurance comes your way do the genetic testing....it sounds like your chances of having celiac or an intolerence is fairly clear from wha tyou stated.....

Don't make yourself worse by eating the gluten.....

good luck

mamaw

[tracey*]

I'm also in the boat of 'not wanting to go back to gluten just to test'. I couldn't bear it if I did.

I do feel strange that I don't know whether I am coeliac or not, but I don't feel bad about the decision I made to avoid the foods that made me sick. Why go back to foods that I know I don't mix well with?

Good luck

[clockworkjoce]

  mamaw said:

I too agree if the diet made you feel better then do the diet & when insurance comes your way do the genetic testing....it sounds like your chances of having celiac or an intolerence is fairly clear from wha tyou stated.....

Don't make yourself worse by eating the gluten.....

good luck

mamaw

thanks for replying, i think these are all things i need to hear. i really appreciate being welcomed into this community. right now, i'm beginning to realize the impact this disease has on your life and how much it really alters it. i have to admit, as melodramatic as it sounds, i feel a sense of loss and it is very hard to communicate these feelings to non-celiacs. i love food, and miss things like care-free dining out and all of the social interaction that goes along with that. i don't want to have to neurotically (sp?) stand watch over everything i consume, and have to explain it over and over again to people who don't understand or sometimes don't care about the impact of an exposure. in short, i'm very grateful there's a network of people out there that can help me understand this disease and how to deal with it.

[tracey*]

clockworkjoce, I feel the same way! I've only been here for a week and I really feel 100% better about what's going on and what I need to do for myself. I feel like my family and friends don't really 'get it' but everyone here does

[clockworkjoce]

  tracey* said:

clockworkjoce, I feel the same way! I've only been here for a week and I really feel 100% better about what's going on and what I need to do for myself. I feel like my family and friends don't really 'get it' but everyone here does

i'm glad (that might not be the right word) that others are going through the same stuff. and, off topic, i visited your blog, which is very very cool. kudos!

[tracey*]

  clockworkjoce said:

i'm glad (that might not be the right word) that others are going through the same stuff. and, off topic, i visited your blog, which is very very cool. kudos!

thanks for visiting blogging makes me happy, and it's helped with trying to decipher all this allergy/intolerance stuff. i didn't realise just how many times i've written "so i'm sick again".

[par18]

  clockworkjoce said:

i've had stomach problems and health issues like anemia and rashes for years. my grandmother is a celiac, so on a whim i went on the gluten-free diet thinking maybe this is it. well, after the first month i felt incredible and that horrible bloating went away, the rashes are subsiding, and as far as the anemia goes i'm feeling less tired and a bit more energetic.

about two weeks into my new diet, i was (a word i learned here) glutened and became violently ill (vomiting, etc.). so i feel as though i more than likely have the disease, but my problem is that i don't have insurance and it will be a long time (months) before i will get health insurance so i can't go and get tested. i intend to get tested when it is a possibility, but for now it's a really strange place to be--not really knowing. have other people gone through something like this? any advice?

I can't help but feel that good old common sense has a way of overcoming those things that sometimes seem so diffucult to understand. Just stay on the diet unless you feel it does not help. Your body is trying to tell you something very important. Listen to it! This is one case in which it should be "body over mind" and not the other way around.

Tom

[IrishKelly]

  clockworkjoce said:

i've had stomach problems and health issues like anemia and rashes for years. my grandmother is a celiac, so on a whim i went on the gluten-free diet thinking maybe this is it. well, after the first month i felt incredible and that horrible bloating went away, the rashes are subsiding, and as far as the anemia goes i'm feeling less tired and a bit more energetic.

about two weeks into my new diet, i was (a word i learned here) glutened and became violently ill (vomiting, etc.). so i feel as though i more than likely have the disease, but my problem is that i don't have insurance and it will be a long time (months) before i will get health insurance so i can't go and get tested. i intend to get tested when it is a possibility, but for now it's a really strange place to be--not really knowing. have other people gone through something like this? any advice?

I have insurance and the only test my holistic dr. gave me was the blood test which came back negative...and before he gave me the blood test he told me it could come back negative but that didn't mean that i didn't have a glutent intolerance. If you ask most of us on here, you will see that the absolute best test is by trying the diet, and if you have a positive reaction you'll already have your answer. That actually is the best test available, because the blood tests and the biopsies can definitely give false negative results!! And i also found that after starting my gluten-free diet i am now waaayyyyy more sensitive after digesting gluten, i will now throw up and get the shivers. If your grandmother has it and it is hereditary, and you have positive reults to the diet, well then there's your answer