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What To Do?
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OK well I am supose to go back on normal food for a month so i can get a blood test and get an accurate testing.Ive been clinal dx .Some how yesterday I got gulten in me and was really sick and I just thoguth to myself this is what im going to be for like a month i cant do this to myself,WHy do I have to prove something to people i dont know.I know how I feel and i know what makes me sick .If you were me would u tell them u wouldnt do it ? as long as i know thats all that matters right?

thanks

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Yuck....how long have you been gluten-free, again? What tests have you had done? If you've had a biopsy, then I don't see why you would need a blood test, as well....if you haven't, I guess it's your choice if you want to put up with some pain and know for sure....or stay gluten-free and never know for sure. In addition, when you go back to gluten after being gluten-free, you'll get worse symptoms than before when you were consistently gluten-free. I'm not entirely sure what you're testing for...if you are sure that you have it and are willing to follow the diet for life, then there's no need to run 10 different tests to be sure that you have it. I agree with you on that point....when I got the blood test and they told me to stay on gluten for the scope to be sure, I was fine with that because I hadn't begun a gluten-free diet, anyway, so another week wouldn't hurt me.....but after making progress....to purposely retrogress into a sick state.....I kind of agree with you.

-celiac3270

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I ve been gulten free for 3 months.I already had one blood test done but the dietistion told me the doctor did the wrong test and she only did one i was surpose to have 2 done.Ive only had that 1 blood test than they put me gluten-free.It showed up neg. caz I was on gulten when I got the test done.I told the doc that and she wouldnt retest me she said there was probly gulten in me .The dietishion wants me to get the blood test done so than i can get a biosy faster.I dont know why they didnt do that when i wasnt on the diet.If i go back to eating normal it will ruin my whole summer.

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I know....that's a long time gluten-free to go back and mess it all up :o ....if it's just a nutritionist that wants you to get the tests done, maybe talk to your doctor and the rest of your family, although in the end, I guess, the decision should be up to you....you're the one who'd have to live like this....I think it's pretty conclusive that you have celiac disease, especially since you have symptoms of it......but it's up to you in the end.

-celiac3270

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And the REALLY bad news is that most experts don't consider one month enough for an accurate diagnosis. More like 2-3 months.

If you're certain celiac is the problem and you don't know of a reason that you need an official, official diagnosis, I'd just stay gluten-free.

richard

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i plan on just going gluten freea nd trying it- haivng been told that I wasn't underweight though I have a bloated belly and thus can't possibly have anything but IBS, no celiac... but I do get worse when I eat gluten.. I have a largely gluten free diet naturally because of that... so going completely gluten free won't bee too hard- just gotta get to the store.

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Well my dad wants a dx my mom wants me to do what ever I feel is right and the doctor well the doc is convinced that I have celiac but wants me to get tested.But I want to do whatever is right I just dont know what the right thing is because when I get gulten in me i know i wont be able to do it i will fall down hill and everything i did for the last 3 months was for nothing.Yes i heard that it takes awhile for the damage to show up i shouldnt of even been on this diet yet caz that alone screws it up i heard.Im pretty sure its celiac .I have to go to the dietishion wed. and she wants to talk to me if i tell her i wont do it than it kind looks like i dont want help but if i do tell her i will do it i will be miserable.My best friend thinks i should and keeps fight with me and is telling me that im not going ot get better if i dont listen but if i get tested it doesnt help me i just know 4 sure.

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It's your decision.....like your mom said....do what you feel is right...

if i tell her i wont do it than it kind looks like i dont want help but if i do tell her i will do it i will be miserable.My best friend thinks i should and keeps fight with me and is telling me that im not going ot get better if i dont listen but if i get tested it doesnt help me i just know 4 sure.

I see what you mean about saying "no".....and obviously, I can see your point about going back on the diet :( . The symptoms might be worse going back on the diet than they were before...I think I've already said this in another post.

As for your best friend, she shouldn't influence you in any way. First off, this is your decision and you know more about celiac disease and what you need to do than they do. In addition, and most importantly, your best friend doesn't have to live with symptoms, so it's easy for her to say that you should get tested. Finally, you'll get better even without knowing for sure...like you said, all it does is tell you for sure, so if you don't care about that....I don't see why you'd need to go back on the diet. However, if you want to ever find out for sure, then you should do it now when you're not completely healed, rather than, in a few years, deciding to see for sure -- better to go off track in the beginning. Your decision -- I'm not going to give you any answer because your best friend shouldn't influence your decision, but neither should I. Good luck.

-celiac3270

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Please also remember: the diet itself is a test for sensitivity and celiac. I got so much better just by staying gluten-free, that my doctor refused to do any more tests. She said eating gluten just for a test would do unnecessary harm to my body. Your dietician should not be pressuring you to have additional testing. If your doctor is satisfied that you have celiac, and you are better on a gluten-free diet, then that should be all there is to it. Your friend should be supporting your decision, whichever way you go.

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thanks for the replys

I know my best friend should surport what ever I do but she always thinks that the doc is right and they always arent.My best friend doesnt really know my symptoms I just told her I throw up ,but its much more than that .Yeah did notice that i got sicker than usual when I made a mistake.The dietitshion is great shes the only one doing something 4 me the doc isnt that great .I dont want it to look like she did this research for nothing. Shes the one who put me on the diet. Im going to ask her what she thinks.I did get way much better when i was on the diet too I could acutally go places with out worrying and I could eat it was great. Does being gluten-free than going bac on normal food effect it?I think im going to go out and eat something anything i want and see what happens ...i know what will happen i just want to see if i would be able to do this for a month might help me make my decision.

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I wouldn't do that if I knew for sure I had celiac disease. What about enterolabs.com. A simple stool test that's MORE reliable than anyother testing. Doesn't matter that you've been gluten-free. Hugs, Carol B (still waiting for her test results from them)

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I think im going to go out and eat something anything i want and see what happens ...i know what will happen i just want to see if i would be able to do this for a month might help me make my decision.

How'd it go? (Eating whatever you wanted)...if Kalo's suggestion is true (if the stool test would work), that would be a good alternative, although, I don't know how much a doctor/nutritionist would like it.... <_< ....from what I've heard, they don't like things from Enterolab (I've never had any tests done there).

-celiac3270

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Did not go well at all.I ate a chicken terriki sub from sub way and I was really sick.I threw up like 4 times ,got really weak,diareeha(took imodium ).I drank alot of water and it started to make me feel alittle better.But I mean I knew that was going to happen .I dont wanna live like that I know I cant do that everyday.SO I think I know what my decision is weather they surport me or not.I dont think I am unless the dietishion can convice me of why I should.Thanks kalo ill look into it dunno if my parents will go for it tho

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Yuck...sorry to hear about that, but at least it reinforces your suspicions....I think it's pretty obvious that you have it. Personally, if I were in your situation, I don't think I'd do it either. If I were under a month into the diet, I might, since the progress would've been minimal, anyway, but at this point, there's no way I'd go back....I think you're making the right decision. Besides, I think it's your doctor's opinion that's important, not the dietician's.....good luck on this and convincing your parents to try Enterolabs.

-celiac3270

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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