My Family Is Insisting I Get Tested

[positivenrgfairy]

I know gluten makes me sick and depressed. I may be intolerant and I may have celiac disease, i don't honestly know, but i know that i have to eat gluten again and feel like sh$# for the test to even work and i don't want to put my body through all that.

any advice on how to get tested, find a doctor, or deal with reintroducing gluten into your diet?

is it worth it? what difference does it make?

also if anyone can recommend a doctor in austin, texas please let me know.

[tarnalberry]

I'm assuming that you're under 18 if you're saying that your parents are making you get tested. (Otherwise, they can't make you!)

I'd ask them "why do you want me to feel bad?" When they say they don't believe you have it and want proof, suggest that they record your symptoms when you go back on gluten - every morning, have one of your parents right down how you felt the day before ("diarrhea 4 times, stomach ache after breakfast and lunch, exhausted by 6pm, etc."). Do that a week before, and during the time you're on gluten. Further the suggestion to "if I feel worse than I do now, for two weeks, you'll stop this test and let me feel good again". Do not, at any time during those two weeks, whine or go on to them about your symptoms; they'll hear them every morning when you record them.

Honestly, if you can make them complicit in hurting you, well... parents usually don't intentionally want to damage their kids, so they may be a little more likely.

Other options include finding a doctor who specializes in celiac (call, ask the staff) and asking him/her what your options are. If you do go back to eating gluten for a test, make sure it's 3 servings of gluten a day for 3 months - you don't want to risk the higher chances (still present even after all that) of a false negative if you're family won't believe you already.

[positivenrgfairy]

I am 27 years old, thank you very much. I didn't say they are making me; I said they are insisting. and i didn't say "my parents" I said my family. It is mostly my brother who has lost friends because they self diagnosed themselves with something but it was actually something else, like cancer.

and my questions was is it worth it?

thanks.

[soulcurrent]

My doctor is really really nice, and after a single visit with him I had my diagnosis. His staff is also really nice. When I called to get my biopsy results the nurse stayed on the phone with me while I freaked out and was reassuring and made the whole thing seem a lot less scary. He also practices at multiple locations throughout the city.

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[ravenwoodglass]

I am 27 years old, thank you very much. I didn't say they are making me; I said they are insisting. and i didn't say "my parents" I said my family. It is mostly my brother who has lost friends because they self diagnosed themselves with something but it was actually something else, like cancer.

and my questions was is it worth it?

thanks.

For me the gluten challenge was not only worthless it make me to sick to even get to the endoscopy. You brother sounds loving and conerned but if you point out the impovement in your health and promise him that if you do continue to have symptoms after a while on the diet you will rule out other things that might set his mind at ease. If he is doubting you have celiac you could do a short challenge while visiting him for a while and let he see himself what it does to you. Another possiblity of course is that he is having symptoms himself and is fearful of the difficulty with this diet when folks first start. You could also think of doing Enterolab testing if you haven't been gluten-free for very long you wouldn't have to do a challenge for the tests.

[tarnalberry]

I am 27 years old, thank you very much. I didn't say they are making me; I said they are insisting. and i didn't say "my parents" I said my family. It is mostly my brother who has lost friends because they self diagnosed themselves with something but it was actually something else, like cancer.

and my questions was is it worth it?

thanks.

no offense was meant, really. we've had some teenagers on here in that situation before, and your post said insisting and then went on to imply that you were going to be doing this because of that. I'm sorry my response go you all flustered - it apparently didn't even apply to you, so was imminently ignorable.

if you're 27, they can't make you do a thing, so it's just a matter of whether they're arguments are worthwhile/strong enough to convince you to change your mind on being gluten free. if you have any signs that suggest it *might* be something else, or if you think it's worth it to make your brother feel better (and there's no reason that isn't a valid response), then you get further testing. but it's a tradeoff between him feeling better and you feeling worse. maybe it's worthwhile to do the tradeoff, maybe not.

I did a single day gluten challenge. that was worthwhile to me to confirm, yup, gluten. but I can't imagine three months being worthwhile - for me, in my situation. but I didn't have to convince anyone else. they can test for other things (chrons, cancer, etc.) without you going back on gluten.

of course, all of this depends on whether or not you have any symptoms to warrant testing for some of those things - if you're brother is worried you have cancer based on his past experience, but you don't have any real symptoms of cancer, a doctor is highly unlikely to do any testing for cancer. (well, maybe if you paid out of pocket? that'd get pricey)

[positivenrgfairy]

I'm sorry. I didn't mean to get b%$@#y; I know you meant well. not that it is a good excuse to be rude, but things are hard right now, as I'm sure many people on this board, yourself included, can relate to. so again, I apologize for my tone.

It would be a tradeoff. Basically, my siblings are suggesting that either I get tested for celiac disease, or I go ahead and get tested for all this other stuff just to rule it out. but I have pretty classic symptoms, ranging from emotional to gastrointestinal, to skin rash. as far as I know, my symptoms don't point to anything else, and I know he is just looking out for me, and that I should probably go see a doctor anyway, but from what I have read, even the blood test will be false if you don't eat enough gluten.

without health insurance, all that testing seems even farther out of reach.

[Nancym]

If you don't have health insurance then I'd do a dietary trial and call it a day. If your symptoms get better, then you know what you need to do.

There's no guarantee that testing is going to resolve all your questions anyway. Lots of people go through many painful, very expensive tests and never get an accurate diagnosis of anything. I had one doctor get very obsessed over the small amounts of blood in my urine. She ordered a bunch of really nasty tests... later on I found that most cases of this they never find the cause of and so it isn't really anything to be concerned over. *sigh*

If I were you I would give the diet a good try, be very conscientious about it. If, after you've had a nice long time to heal, you still feel awful then you might need to tweak the diet some (might have other food intolerances) or you should look into having the doctors check you for cancer, colitis or whatever else might be the issue. Hopefully by then you'll have health insurance.

[positivenrgfairy]

thats just the thing- I've already been gluten-free for a month or so and except for the occasional XC, I feel a million times better, which is why i think its silly to go through months of painful and invasive tests when i am 99% sure that gluten is the problem.

Just for the 1%, I'm going to do some more food trials. could someone explain to me what they did? I would also like to eat something that is wheat free but not gluten free to be sure that i'm not having a wheat allergy. any suggestions?

I have done this a few times already, but i guess it couldn't hurt to try again...

[carsondcat]

I'm not sure what testing they do here that take months maybe you're talking about the length of time you have to be back on gluten to get tested..... A blood test and biopsy for my celiac disease diagnosis. My thoughts on this would be as soulcurrent suggests, see the Dr ask their advice and really if your family are that insistent because they love you and are worried for you ask them to help you with the expense.... then everybodies minds would be put at ease and maybe yours as well.

[mushroom]

Just for the 1%, I'm going to do some more food trials. could someone explain to me what they did? I would also like to eat something that is wheat free but not gluten free to be sure that i'm not having a wheat allergy. any suggestions?

.

I would suggest making a soup with barley in it. You can buy bags of soup mixes, split peas, lentils, barley, etc. Barley would be the only gluten. Good luck.

[tarnalberry]

you could also pick up a package of ryvita crackers (get a variety that just has rye flour - they have a range, some have other things) and have those (with cheese if you know you can do dairy).

[Jestgar]

thats just the thing- I've already been gluten-free for a month or so and except for the occasional XC, I feel a million times better, which is why i think its silly to go through months of painful and invasive tests when i am 99% sure that gluten is the problem.

Just for the 1%, I'm going to do some more food trials. could someone explain to me what they did? I would also like to eat something that is wheat free but not gluten free to be sure that i'm not having a wheat allergy. any suggestions?

I have done this a few times already, but i guess it couldn't hurt to try again...

If you are better after changing your diet, what is there to test for? If you somehow had chosen not to eat wheat for other reasons (Atkin's, for example) and knew nothing about Celiac or gluten intolerance, would he still be wanting you to get tested for *something* ?

If you have no symptoms, you have nothing to test for.

[carsondcat]

If you are better after changing your diet, what is there to test for? If you somehow had chosen not to eat wheat for other reasons (Atkin's, for example) and knew nothing about Celiac or gluten intolerance, would he still be wanting you to get tested for *something* ?

If you have no symptoms, you have nothing to test for.

I don't want to bang the drum on this, but i will you don't know if there is a food allergy/intolerance issue, it could be a co-incidence that they are asymptomatic now. but I don't know and you don't know jestgar, I am not a GI expert, is it right to ignore symptoms of something just because you are asymptomatic at the moment, it could be a coincidence... We all know that truly it's not right to ignore a problem. Can you definitively say yes Celiacs, IBS. Diverticulitis, Chrons, or no a wheat allergy, I know I can't...

At the end of the day 'positivenrgfairy' you are 27 years old and you will read the posts and be just as confused as ever, however ultimately the choice is yours, just make it an informed choice, thats all I'm concerned about....

[Mtndog]

I am 27 years old, thank you very much. I didn't say they are making me; I said they are insisting. and i didn't say "my parents" I said my family. It is mostly my brother who has lost friends because they self diagnosed themselves with something but it was actually something else, like cancer.

and my questions was is it worth it?

thanks.

If you have been gluten-free for a month and are feeling that much better, I would not eat gluten for another month or so and see if any of your symptoms return. If they do, then you'll know something else, which may or may not be celiac or gluten-related, COULD be wrong.

Have you had a regular check up with blood work lately? I know you don't have health insurance but you can probably get a relatively reasonable exam with bloodwork. This might calm your brother down.

I had multiple tests- CT scan, bloodwork, upper GI, colonoscopy and everything came back negative (I had been gluten-free for over two months). When I ate gluten for 10 days (I was supposed to do two weeks) I got so sick I quit. The biopsy came back negative but I didn't care. I knew it made me sick.

I was finally diagnosed by gene test and medical history by a doctor at a celiac center in Boston. She wouldn't make me do a gluten challenge because she knew how sick it made me. Doctors like that are rare- I got lucky!

[ravenwoodglass]

thats just the thing- I've already been gluten-free for a month or so and except for the occasional XC, I feel a million times better, which is why i think its silly to go through months of painful and invasive tests when i am 99% sure that gluten is the problem.

Just for the 1%, I'm going to do some more food trials. could someone explain to me what they did? I would also like to eat something that is wheat free but not gluten free to be sure that i'm not having a wheat allergy. any suggestions?

I have done this a few times already, but i guess it couldn't hurt to try again...

I think you already have your answer. The suggestion to challenge with the barley and rye was a good one. Get the crackers and have them 3 times a day for a week. If you haven't seen symptoms go ahead and keep them in. Then add barley to a soup that you make that you have eaten with no problems or in another form and do the same thing.

If you are feeling so much better gluten free it is not likely a coincidence. Especially since you have no insurance right now if your feeling good you don't need a doctors permission to stay gluten free, or anyone else's.

[tarnalberry]

I gotta say, if you're not experiencing symptoms while gluten free.... I'm not sure why your brother would think you have cancer. It's not like the gluten free diet cures cancer! (Well, I understand - with his past experience, it's a fear, and he's worried about you. It's just an unfounded fear, I would think. But, I am not a doctor. ) And with not having insurance... I'd want a reason for paying out for a bunch of medical tests and "feeling fine" is not a reason...

Good luck making a decision. I know it's not easy to figure something like this one out.

[Jestgar]

I don't want to bang the drum on this, but i will you don't know if there is a food allergy/intolerance issue, it could be a co-incidence that they are asymptomatic now.

I tend to believe that you are the best resource for understanding your body. I also don't believe in testing for something when you don't have a problem. If gluten-free over several weeks doesn't clear up all symptoms, then other tests should be considered.

Or do food testing as others have suggested. That just wouldn't work for me.

[positivenrgfairy]

I agree It seems silly. but I am pretty new to the whole thing. I get cross contaminated so often that now im really paranoid that it is something else, or at least an additional food allergy)

I met my brother half way, and I made an appointment with a holistic healer who is also a registered nurse. After we talk, if she thinks it's necessary to get a biopsy then I'll go get one.

until then, im going to have to forge ahead.

thanks everyone, always, for your support.

[ravenwoodglass]

I agree It seems silly. but I am pretty new to the whole thing. I get cross contaminated so often that now im really paranoid that it is something else, or at least an additional food allergy)

I met my brother half way, and I made an appointment with a holistic healer who is also a registered nurse. After we talk, if she thinks it's necessary to get a biopsy then I'll go get one.

until then, im going to have to forge ahead.

thanks everyone, always, for your support.

Just keep in mind that if you decide to get the endo you need to go back on a full gluten diet for about 3 months first.