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    Do you have questions about celiac disease or the gluten-free diet?

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After three whole weeks of waiting for my doc to post my lab results (she tested 4 of the 5 things...everything but the total serum. plus one of the thyroid hormones) I called her office. Guess what? They've been in for quite a long time. Guess they wanted to string me along for the heck of it.

My doc's (PCP) nurse said "Everything came back normal." I then asked for the actual values, and the only one she could give me was for the thyroid test (124). I asked "So you don't have any values/reference ranges for the antibodies?" and she said there were none; it just says "normal." I asked if there was a way I could get a hold of the numbers, and she said she didn't think so.

I hung up on her.

So that's it?!? I can't even get my freakin' values from my own blood?? I'm so...furious. Completely at my wit's end.

It almost makes me feel like a fraud. I've been gluten-free for a month now (a week before the tests) and I'm finally starting to feel a lot better. No bloating, able to have bm's, no dibilating stomach pain, my acid refluz is a lot better...yet they say everything's fine. I'm so sick and tired of dealing with different doctors' bs, so I don't want to have to go through any other tests.

I know my brother who has also had numerous GI issues did very well on a candida diet...maybe my solution is staying gluten free. I'm just very analytical; I like to have hard evidence (numbers)...but I will just listen to my body, as it seems like the only other thing I can do.

Maybe for Christmas I'll get enough money to break down and buy my own test from York or Enterolabs just to see. I don't know. I'm very dissapointed.

I feel... :(:angry::o:unsure::ph34r:

I think that about covers it!

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Guest DanceswithWolves

What's so interesting on this board is how so-oooo many posters experience the same attitude that plays along with the "negative" results.

I smell conspiracy or cover-up...sorry.

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I can relate to your comment on wanting proof from tests. I used to feel that way...then it hit me does it really matter? Do what makes your body feel better. Every lab is different and you could get different results from each one. It is very frusterating and I think everyone on this board understands!! Just eat what your body wants. I tested negative for celiac but yet, evertime I have gluten I have a severe reaction to it. Like you said just listen to your body!! :)

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I can relate to your comment on wanting proof from tests. I used to feel that way...then it hit me does it really matter? Do what makes your body feel better. Every lab is different and you could get different results from each one. It is very frusterating and I think everyone on this board understands!! Just eat what your body wants. I tested negative for celiac but yet, evertime I have gluten I have a severe reaction to it. Like you said just listen to your body!! :)

Certianly listening to your body is wise counsel. BUT - if you have children or family members who have health issues they won't listen to your opinion or experience. Only tests and numbers convince those who do not want to be convinced. As for young children - if you have any - it is so important to know whether there is a genetic factor at work here that could affect their health. Claire

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After three whole weeks of waiting for my doc to post my lab results (she tested 4 of the 5 things...everything but the total serum. plus one of the thyroid hormones) I called her office. Guess what? They've been in for quite a long time. Guess they wanted to string me along for the heck of it.

My doc's (PCP) nurse said "Everything came back normal." I then asked for the actual values, and the only one she could give me was for the thyroid test (124). I asked "So you don't have any values/reference ranges for the antibodies?" and she said there were none; it just says "normal." I asked if there was a way I could get a hold of the numbers, and she said she didn't think so.

I hung up on her.

So that's it?!? I can't even get my freakin' values from my own blood?? I'm so...furious. Completely at my wit's end.

It almost makes me feel like a fraud. I've been gluten-free for a month now (a week before the tests) and I'm finally starting to feel a lot better. No bloating, able to have bm's, no dibilating stomach pain, my acid refluz is a lot better...yet they say everything's fine. I'm so sick and tired of dealing with different doctors' bs, so I don't want to have to go through any other tests.

I would encourage you to ask, not for the numbers, but for a copy of the test, via mail or fax. Say it's for the sake of complete medical records, if you have to.

But be prepared that it really does just say "normal". I got that, and being the scientist I am, also thought, "wth? I want the numbers!" Well, after a long run around with the doctor's office (who did just get me the numbers right away) and calling the lab, it turns out that not only is it next to impossible to get information out of the lab on your own bloodwork ("we have to go through the doctor"), but they may not have even taken a quantitative reading if the levels were below a certain value. (Depending on *how* they test, they may be able to tell that a result is below a certain value without knowing the value.) So the measurement may not even have been taken. One of the reasons why "your mileage may vary" with blood tests depending on the lab doing them.

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Thanks for the replies! It's nice to know others have been this, done that, and it's great to hear from your experiences.

I agree, I will go with what my body wants. I don't have kids yet, and won't for a few years (ideally), but I agree, it is something worth knowing hard facts about when that time comes. The issue of some people not taking my reasonings seriously are part of my anxiety about none of this unfolding right. But I can tell them to just shove it, lol! No, most importantly I know I have the support of my parents and boyfriend, which is the best since they are the most important people in my life.

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in my blood tests, some results had numbers, along with reference numbers for high and low values, and others just had "Positive" or "Negative"

but the only way that I know that is becuase i always ask for copies to be sent to me.

i didn't used to do that. but now, yes, every test, please send me a copy.

good luck

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Claire-I'd like to respond to your post, since it was directed to me. Yes, I do have two kids, but I still don't need a Dr.s or lab confirmation on the fact that gluten is affecting us.In my opinion(after much research, gluten is harmful to us all) and will stick to gluten free for life. What my children do as adults will be out of my control. They know gluten is bad and eat gluten free at home.

I don't need to explain my choice of food to anyone. I've told people I have an allergy to wheat and I've NEVER had anyone question it. I don't feel the need to go into great detail about my eating habits. My family knows and are understanding, even though they never heard of it, until it happened to me.

Even though I do have a diagnosis from the lab, doesn't mean I walk around with the results to "PROVE" that I have it. I know the results and we eat to keep ourselves healthy. As far as anyone else goes, "they can shove it" as someone said!!

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Claire-I'd like to respond to your post, since it was directed to me. Yes, I do have two kids, but I still don't need a Dr.s or lab confirmation on the fact that gluten is affecting us.In my opinion(after much research, gluten is harmful to us all) and will stick to gluten free for life. What my children do as adults will be out of my control. They know gluten is bad and eat gluten free at home.

I don't need to explain my choice of food to anyone. I've told people I have an allergy to wheat and I've NEVER had anyone question it. I don't feel the need to go into great detail about my eating habits. My family knows and are understanding, even though they never heard of it, until it happened to me.

Even though I do have a diagnosis from the lab, doesn't mean I walk around with the results to "PROVE" that I have it. I know the results and we eat to keep ourselves healthy. As far as anyone else goes, "they can shove it" as someone said!!

I agree with you traveljunkie, but some people are too weak to take an action like this without permission even if you find your own evidence of an intolerance to a food. Claire does have reason with her comment regarding having an idea of the likelihood of coeliac in your children.

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thats odd... My doctor made an appointment to go over the results then sat down and explained what all the numbers meant. You should really get a copy, by law they have to give it to you. Good luck.

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Hi Brad, and welcome to the forum! :)

I agree, my two boys do not eat gluten, and being of Italian heritage, I understand we are at high risk for gluten intolerance. I do not require them to be officially tested, as I was, because we all have gone gluten free and have noticed great improvement in our health. We have also gone dairy free, but still eat the occasional cheese.

Charlene

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I already know that you are Italian and that group is of high risk, but you really should stop eating cheese! Casein is very damaging to your health, not to mention the horrors of cheese production such as the chemical (rennet) which is taken from the stomach of baby cattle. Eliminating this food will help your healing process.

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I only want to add that it doesn't matter about kids, because you can always decide to feed them gluten containing foods for a while (unless they have an obvious reaction) and have them tested when quite little. Since you decide on all your kid's health issues/testing as long as they are dependent on you, you can make that decision. I even forced my 14-year-old to get her blood taken the other day, because she has possible celiac disease symptoms, and refuses to give the diet a try without proof that she needs to. So, in two to three weeks we'll know either way.

I agree, forget about the stupid doctors and go with what you know is right for you! I don't have an official diagnosis either, because as soon as I figured out it was celiac disease making me desperately ill all summer (the doctors were clueless) I went off gluten, with incredible improvements within a day. And two weeks later my doctor agreed that testing was not needed, the improvement on the diet was enough evidence. And I say, it should be for you as well.

Edited by Ursula

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There are some strong opinions being voiced here - which is what one expects on a forum.

This post is primarily in response to traveljunkie's post to me. Ursala also may find something of interest here.

Those who are familiar with my posts know that I do not have any great love for doctors but as a health care professional (not active) I do know that doctors, nurses and therapists need and appreciate a complete medical record on the patients they treat. God knows doctors mess things up enough without having to work with less than complete information. Most all of us here know that doctors don't usually take our word for it.

A new doctor or a specialist is unlikely to accept any self diagnosis no matter how right you are. Having your health status and that of your children ' on record' is simply in your best interest and theirs'.

traveljunkie - I am surprised that you took such offense at my post. This is a forum. Most people here come looking for feedback. That's what you were getting. Obviously it was not welcome.

I am currently awaiting test results for a very serious genetic disorder. My current doctors are research neurologists at NIH. On my last visit there two of them said essentially the same thing to me - "even if you don't have this test for yourself, have it for your children."

What applies to my particular issue is not specific to that disorder alone but to all genetic disorders. Knowing what's in your personal genetic grab bag allows you to present a clear picture to any doctor or specialist who is treating you or your family members for anything at any time now or in in the future. I have grown children who are currently being treated for things I am certain they do not have. They are presenting symptoms that are being misread because the medical picture is incomplete. My test results may well clarify that situation.

This forum is meant to help people. The members here do give and receive. Most do both very well.

Brad - thanks for the supporting comment. Claire

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Certianly listening to your body is wise counsel. BUT - if you have children or family members who have health issues they won't listen to your opinion or experience. Only tests and numbers convince those who do not want to be convinced. As for young children - if you have any - it is so important to know whether there is a genetic factor at work here that could affect their health. Claire

Claire- I do not take offense to you personally, just this quote is confusing," only tests and numbers convince those who do not want to be convinced." My understanding of your quote was the only way to get people to believe and support you are to have proof from a doctor. In your most resent post you talk about getting doctors to diagnosis and accept gluten intolerance. I completely agree with that. Most doctors do not believe celiac is a common disease and it can be VERY frusterating dealing with them without a diagnosis from a lab. But, where the misunderstanding came is that, I do believe we were talking about family, co-workers, friends, etc. For that you surely don't need a peice of paper stating what our Iga's are to explain our eating choices.

Hope that settles our miscommunication. Of course, I take my children's health seriously, but like I said before, what they do as adults will be up to them. I feed them gluten free food while there at home, and they know there at risk to many serious diseases, if they do not continue the diet. That is all I can do as a parent. I was diagnosed through enterolab and tested negative through a blood test. I see no point in having my children tested through enterolab and the extra expense, when I have a positive sensitivity to gluten. My oldest is a strict vegan, and takes his health very serious. In the future they may get tested but at this time.

:)

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Claire- I do not take offense to you personally, just this quote is confusing," only tests and numbers convince those who do not want to be convinced." My understanding of your quote was the only way to get people to believe and support you are to have proof from a doctor. In your most resent post you talk about getting doctors to diagnosis and accept gluten intolerance. I completely agree with that. Most doctors do not believe celiac is a common disease and it can be VERY frusterating dealing with them without a diagnosis from a lab. But, where the misunderstanding came is that, I do believe we were talking about family, co-workers, friends, etc. For that you surely don't need a peice of paper stating what our Iga's are to explain our eating choices.

Hope that settles our miscommunication. Of course, I take my children's health seriously, but like I said before, what they do as adults will be up to them. I feed them gluten free food while there at home, and they know there at risk to many serious diseases, if they do not continue the diet. That is all I can do as a parent. I was diagnosed through enterolab and tested negative through a blood test. I see no point in having my children tested through enterolab and the extra expense, when I have a positive sensitivity to gluten. My oldest is a strict vegan, and takes his health very serious. In the future they may get tested but at this time.

:)

I guess what one 'needs' to be taken seriously by family depends on the family. I know that I have at least a couple of children who will not accept anything short of a positive diagnosis of a genetic disorder - and maybe not then! I wasn't suggesting that you needed to 'prove' anything to your friends. I do have big concerns about doctors treating patients - in this case my girls - for things I don't believe they have. If more 'evidence' is forthcoming maybe we can get it straightened out. That was part of my comments about 'proof'.

I have some reservations on the blood tests .I am not sure the local lab people have the experience needed to determine accurate results. I disproved Celiac with a genetic test. It won't prove Celiac but if positive in the presence of symptoms one can be quite certain. I am convinced that my friend's husband has Celiac but an EMA (?) was negative. A genetic test will tell whether or not he COULD have celiac - not whether he actually does.

I personally have used tests for a process of elimination - taking one thing after another off the table. We just might find an answer this way.

Thanks for the reply. Claire

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