Going To Request More Tests....

[taynichaf]

Two times my blood tests came back negative. I recently had a biopsy that came back negative, but they found GERD and a hiatal hernia.

 

For some reason, my doctors will not test the full panel and I just don't get why!

 

Being gluten free for just a few days I can already start to see changes.... I have MANY symptoms of celiac, and now i'm just starting to think that I'm an early celiac... So I am going back to the doctors tomorrow and pleading that they test the full panel for my own sanity! Along with my thyroid levels and to see if im hypoglycemic...

 

Any advice/tips? I know I might just have NCGS but I will not let this go until they run the full tests... And I want to quit eating gluten already!

 

Are there any other tests that I should ask for???

 

Thank you.

[taynichaf]

Also, i want to do all the testing right away..how long do i have to fast for loe blood sugar? andwill fasting mess with my celiac tests?

[KristinIrwin]

I had a positive ttg and then had a biopsy. I was told on the phone that I had a negative biopsy and then when I looked at the pathology report WEEKS later it said I had slight gerd and an increase in intraepithilial lymphocytes and that a full celiac panel was needed to truly exclude celiac disease. (My first doctor was awful) Then, my celiac panel was positive for 3 things and I was diagnosed by someone new! My villi damage was missed in my biopsy. You should ask to see your pathology report, that's always a good idea!

What parts of the panel did you have done previously? I'm so sorry they won't run everything- doctors can be so annoying.

You could have NCGI, but you could still consider getting the whole panel. Because if I hadn't, I wouldn't know that I have celiac!

Good luck with your health and I hope you get answers as soon as possible!

Kristin

[dek38]

Two times my blood tests came back negative. I recently had a biopsy that came back negative, but they found GERD and a hiatal hernia.

 

For some reason, my doctors will not test the full panel and I just don't get why!

 

Being gluten free for just a few days I can already start to see changes.... I have MANY symptoms of celiac, and now i'm just starting to think that I'm an early celiac... So I am going back to the doctors tomorrow and pleading that they test the full panel for my own sanity! Along with my thyroid levels and to see if im hypoglycemic...

 

Any advice/tips? I know I might just have NCGS but I will not let this go until they run the full tests... And I want to quit eating gluten already!

 

Are there any other tests that I should ask for???

 

Thank you.

Have you been loosing weight?  I eat more than enough and loose weight, as you can see off my pic I was quite well built, but now my muscles have gone and I just have a sticking out gut.

Has for tests I have just had a Celiac blood test (Not sure what the tested for, and also an Endoscopy with no biopsy).  Not sure what other tests you can get, I think it is just blood and biopsy.

[taynichaf]

Have you been loosing weight?  I eat more than enough and loose weight, as you can see off my pic I was quite well built, but now my muscles have gone and I just have a sticking out gut.

Has for tests I have just had a Celiac blood test (Not sure what the tested for, and also an Endoscopy with no biopsy).  Not sure what other tests you can get, I think it is just blood and biopsy.

Ok thanks!

 

And nope.. Actually, I gain weight when I eat gluten.. But when I stop eating it I can drop 5 pounds within a week, and that week I ate glouten free cookies and other junk. So it's not just the healthy food making me lose!

[taynichaf]

I had a positive ttg and then had a biopsy. I was told on the phone that I had a negative biopsy and then when I looked at the pathology report WEEKS later it said I had slight gerd and an increase in intraepithilial lymphocytes and that a full celiac panel was needed to truly exclude celiac disease. (My first doctor was awful) Then, my celiac panel was positive for 3 things and I was diagnosed by someone new! My villi damage was missed in my biopsy. You should ask to see your pathology report, that's always a good idea!

What parts of the panel did you have done previously? I'm so sorry they won't run everything- doctors can be so annoying.

You could have NCGI, but you could still consider getting the whole panel. Because if I hadn't, I wouldn't know that I have celiac!

Good luck with your health and I hope you get answers as soon as possible!

Kristin

Yuppp.. Thats why I want to get tested again! And I don't even know which tests they ran... I think only the A ones... lol.

 

I know, now if THESE tests show negative for celiac, I will believe it is ruled out, and that I have NCGI. Which I plan to eat gluten free for the rest of my life anyways, so thats why I am so stressed! I want to be able to feel better already, but these doctors arnt helping much!

 

Thanks

[Deaminated Marcus]

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

[taynichaf]

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Okay. I just really don't know how to get test codes... I have no idea what blood labs are even avaiable around here. But I will try and look it up right now.

[kareng]

Yuppp.. Thats why I want to get tested again! And I don't even know which tests they ran... I think only the A ones... lol.

 

I know, now if THESE tests show negative for celiac, I will believe it is ruled out, and that I have NCGI. Which I plan to eat gluten free for the rest of my life anyways, so thats why I am so stressed! I want to be able to feel better already, but these doctors arnt helping much!

 

Thanks

 

 

Why don't you get a copy and see what they ran and what the results were? 

[taynichaf]

Why don't you get a copy and see what they ran and what the results were? 

I do have copies of the tests... somewhere ha. But i'll find them and bring them to my doctor app.

[taynichaf]

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Yeaahhh.. I can't find anything like this.. PRAY THAT I GET A DOCTOR THAT WILL LISTEN TO ME, PLEASE!

[kareng]

Yeaahhh.. I can't find anything like this.. PRAY THAT I GET A DOCTOR THAT WILL LISTEN TO ME, PLEASE!

  

Could you look up "laboratories" in your yellow pages phone book or online?

That would be step one.

 

Worst case scenario, write down the tests you want and make sure they are written on the blood test requisition sheet you get back

but you still have to go to a lab that does those same tests.

 

I saw an immunologist for another problem and I mentioned about my possible Celiac

and she wrote to my PCP recommending the obsolete AGA celiac tests.

Even my PCP wanted me to do the AGA tests and didn't know about the better DGP tests.

You can't count on doctors knowing this stuff.

How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

[taynichaf]

Could you look up "laboratories" in your yellow pages phone book or online?

That would be step one.

 

Worst case scenario, write down the tests you want and make sure they are written on the blood test requisition sheet you get back

but you still have to go to a lab that does those same tests.

 

I saw an immunologist for another problem and I mentioned about my possible Celiac

and she wrote to my PCP recommending the obsolete AGA celiac tests.

Even my PCP wanted me to do the AGA tests and didn't know about the better DGP tests.

You can't count on doctors knowing this stuff.

I did... Either I just can't find the info on blood testing or it just isnt there ha. Well... I have the list of tests printed out, along with a list of symptoms.. so hopefully I'm good to go. Ahhhhhh I really hope this doctor listens to meeee.

[taynichaf]

  

How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

Ohh pooop... I hope they do! I actually had the same test like within the same month for this... I'm pretty sure insurance covered it.. SP hopefully they'll cover this last one! Because my current insurance ends tomorrow... and thats when my doctors appointment it..

[powerofpositivethinking]

taynichaf,

 

correct me if I'm wrong kareng  , but I think what kareng is saying is please post your initial results from your blood tests on the forum, so that others can take a look at them.  the forum members are soooooo much more knowledgeable than any doctor I've seen so far.  please find your results, post exactly what it says on your lab report, complete with your results and the reference ranges that particular lab uses, and then members can comment on them.  it will be so much more helpful than just hearing that your tests were negative.  we need to know specifically which tests were run, if you want our help 

 

  
How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

 

 

I do have copies of the tests... somewhere ha. But i'll find them and bring them to my doctor app.

 

your best bet on this one, is to call up your insurance company and ask which labs they cover.  My insurance only covers LabCorp based tests or any test from a hospital lab.  if you don't find out this information, you could be stuck with a very large bill because you didn't do your homework.  

 

also to look up tests and codes, I know on the LabCorp site, I have to go into the Health Care Provider section instead of the Patient section, so that I am able to access the specific codes for that lab.  here is a link to the panel I was given:

Open Original Shared Link

 

I did... Either I just can't find the info on blood testing or it just isnt there ha. Well... I have the list of tests printed out, along with a list of symptoms.. so hopefully I'm good to go. Ahhhhhh I really hope this doctor listens to meeee.

 

 

again, please go find your initial blood work paper, and post your results exactly as they appear on the lab report complete with reference ranges, so that we can help 

[kareng]

taynichaf,

 

correct me if I'm wrong kareng  , but I think what kareng is saying is please post your initial results from your blood tests on the forum, so that others can take a look at them.  the forum members are soooooo much more knowledgeable than any doctor I've seen so far.  please find your results, post exactly what it says on your lab report, complete with your results and the reference ranges that particular lab uses, and then members can comment on them.  it will be so much more helpful than just hearing that your tests were negative.  we need to know specifically which tests were run, if you want our help 

 

 

 

 

your best bet on this one, is to call up your insurance company and ask which labs they cover.  My insurance only covers LabCorp based tests or any test from a hospital lab.  if you don't find out this information, you could be stuck with a very large bill because you didn't do your homework.  

 

also to look up tests and codes, I know on the LabCorp site, I have to go into the Health Care Provider section instead of the Patient section, so that I am able to access the specific codes for that lab.  here is a link to the panel I was given:

Open Original Shared Link

 

 

 

again, please go find your initial blood work paper, and post your results exactly as they appear on the lab report complete with reference ranges, so that we can help 

That is a good idea but not really what I'm saying. She has posts all over the forum about not being tested correctly, not being diagnosed with anything, and needing more tests. But, it sounds like she has had lots of tests and some real diagnoses. She doesn't understand them or maybe isn't trying to understand them? It appears that she just wants a Celiac diagnosis and is ignoring the other things the doctors have found.

Not trying to be harsh. She can't find her previous tests and doesn't know what was tested. She has a hernia but doesn't know what that is and doesn't appear to want to know what it is if its not part of Celiac disease. Lots of people are trying to help her but she is making that hard to do.

[taynichaf]

That is a good idea but not really what I'm saying. She has posts all over the forum about not being tested correctly, not being diagnosed with anything, and needing more tests. But, it sounds like she has had lots of tests and some real diagnoses. She doesn't understand them or maybe isn't trying to understand them? It appears that she just wants a Celiac diagnosis and is ignoring the other things the doctors have found.

Not trying to be harsh. She can't find her previous tests and doesn't know what was tested. She has a hernia but doesn't know what that is and doesn't appear to want to know what it is if its not part of Celiac disease. Lots of people are trying to help her but she is making that hard to do.

I can't think straight and im overly stressed. So if people are actually helping me, I guess I just cant see it.

 

I just didnt know hiatal hernia was a big deal because it cant be reveresed, and the doctor just gave me papers and sent me home... My mom was told about it when I was out I guess, but she hasnt done sh*t about informing me.... She just says they suggest this and this... I tell her I dont have any money for it and she says shed buy them, but she never does. She doesnt care at all about this, so thats probably why I didnt think it was a big deal.

 

At first I really wanted to celiac diagnoses, but now I dont even care. I know gluten causes problems for me, and I just feel like I need to have all the tests to rule it out, because I want to go gluten free, but I dont want to think about how I never got these other tests in the future.

 

Thank you for trying to help, but posting something like this just stresses me out even more.

[kareng]

I can't think straight and im overly stressed. So if people are actually helping me, I guess I just cant see it.

 

I just didnt know hiatal hernia was a big deal because it cant be reveresed, and the doctor just gave me papers and sent me home... My mom was told about it when I was out I guess, but she hasnt done sh*t about informing me.... She just says they suggest this and this... I tell her I dont have any money for it and she says shed buy them, but she never does. She doesnt care at all about this, so thats probably why I didnt think it was a big deal.

 

At first I really wanted to celiac diagnoses, but now I dont even care. I know gluten causes problems for me, and I just feel like I need to have all the tests to rule it out, because I want to go gluten free, but I dont want to think about how I never got these other tests in the future.

 

Thank you for trying to help, but posting something like this just stresses me out even more.

I'm not trying to stress you. I think my son is about your age. He is 20. He was pretty sick this year at college. He had to speak with doctors and ask questions and get things in writing as I couldn't be there. He would call me and tell me what he was told. But he did it himself. He knows what his diagnoses were and what they mean. He knows what treatment he had to do or take. When it wasn't working, he went back and asked more questions.

I'm trying to get you to slow down, get your info together, maybe do a little research on it, write down your questions or what tests you might have missed having.

People on here are trying to help you. Saying that they aren't is a bit mean. Why do you think people have been trying to answer your questions? People want to know what tests you have had and the results....not to stress you out, but to help you.

[powerofpositivethinking]

thanks for setting me straight, kareng 

 

taynichaf,

 

i'm sorry to hear you're stressed out, and I hope things improve!  at this point since you were unable to get the DGP test, be proactive, and remove ALL gluten.  you are in charge of your own health, and I hope that your family comes around to support you.  if you take it seriously most likely others will.  

 

ps-I have not personally tried this remedy myself, and the internet is a blessing and a curse, but when I was researching hiatal hernia after my diagnosis, i came across this natural remedy.  

Open Original Shared Link

 

research your diagnoses, and if after doing your research you still don't understand, then ask questions.  you've got to do your part 

 

if you aren't in charge of your health no one else will be.  get a copy of all tests, and put them into a binder.  be proactive, and good luck with the gluten-free diet!

 

That is a good idea but not really what I'm saying. She has posts all over the forum about not being tested correctly, not being diagnosed with anything, and needing more tests. But, it sounds like she has had lots of tests and some real diagnoses. She doesn't understand them or maybe isn't trying to understand them? It appears that she just wants a Celiac diagnosis and is ignoring the other things the doctors have found.

Not trying to be harsh. She can't find her previous tests and doesn't know what was tested. She has a hernia but doesn't know what that is and doesn't appear to want to know what it is if its not part of Celiac disease. Lots of people are trying to help her but she is making that hard to do.

[taynichaf]

I'm not trying to stress you. I think my son is about your age. He is 20. He was pretty sick this year at college. He had to speak with doctors and ask questions and get things in writing as I couldn't be there. He would call me and tell me what he was told. But he did it himself. He knows what his diagnoses were and what they mean. He knows what treatment he had to do or take. When it wasn't working, he went back and asked more questions.

I'm trying to get you to slow down, get your info together, maybe do a little research on it, write down your questions or what tests you might have missed having.

People on here are trying to help you. Saying that they aren't is a bit mean. Why do you think people have been trying to answer your questions? People want to know what tests you have had and the results....not to stress you out, but to help you.

Sorry, like I said I am just very stressed... I had to quit my job and move in with my mom, so I just feel like there is a lot I cant do for myself since I dont have any money. I wanted the diagnoses so bad, so that my mom would finally believe me... Shes the one that has to buy me groceries and all that stuff... But it's hard to even ask for help because she thinks im ridiculous and is just a stressed out b*tch any time I talk to her.

 

I made an appointment with the doctor that did my endo, and I dont think that I can get in until July. It's not that i'm not listening to what everyone is saying, I just dont know HOW to do what they are saying. I am clueless no matter how much research I do... And every time I think I got this figured out, something else comes up.

 

I dont think I said no one on here has been helping me, but if I did I did not mean that. All the help I have gotten so far has been from members of this cite, and I am extremely grateful for that.

 

Again I am sorry.. Eating gluten hasnt done much to help control my stress or anxiety :/

[taynichaf]

thanks for setting me straight, kareng 

 

taynichaf,

 

i'm sorry to hear you're stressed out, and I hope things improve!  at this point since you were unable to get the DGP test, be proactive, and remove ALL gluten.  you are in charge of your own health, and I hope that your family comes around to support you.  if you take it seriously most likely others will.  

 

ps-I have not personally tried this remedy myself, and the internet is a blessing and a curse, but when I was researching hiatal hernia after my diagnosis, i came across this natural remedy.  

Open Original Shared Link

 

research your diagnoses, and if after doing your research you still don't understand, then ask questions.  you've got to do your part 

 

if you aren't in charge of your health no one else will be.  get a copy of all tests, and put them into a binder.  be proactive, and good luck with the gluten-free diet!

Thank you for the link... I am going to do my research on all this now since I realize its more serious than I thought.

 

Now, I plan on being gluten free... I don't think I'll be able to be as strict as everyone says because it will just start arguments with my mom :/ So, I'm just going to start by eating gluten free, then hopefully my shampoos and eveyrthing will run out soon, that way I can go with my mom and buy new ones that I know are gluten free... Once I move out, I WILL be very strict though.

 

I have copies of my tests in a folder actually I'm hoping that once my mom sees changes in me with eating gluten free she'll start to believe me.. But I don't know with her.. Shes the least supportive person I know and it SUCKS to have your mom be that wayyy..

 

Ohh, the only test I am missing so far is my egd that was just done, but they actually are supposed to just mail me the results... Do you think that they will not send eveything you guys are saying I need?

 

 

Thanks

[kareng]

Sorry, like I said I am just very stressed... I had to quit my job and move in with my mom, so I just feel like there is a lot I cant do for myself since I dont have any money. I wanted the diagnoses so bad, so that my mom would finally believe me... Shes the one that has to buy me groceries and all that stuff... But it's hard to even ask for help because she thinks im ridiculous and is just a stressed out b*tch any time I talk to her.

 

I made an appointment with the doctor that did my endo, and I dont think that I can get in until July. It's not that i'm not listening to what everyone is saying, I just dont know HOW to do what they are saying. I am clueless no matter how much research I do... And every time I think I got this figured out, something else comes up.

 

I dont think I said no one on here has been helping me, but if I did I did not mean that. All the help I have gotten so far has been from members of this cite, and I am extremely grateful for that.

 

Again I am sorry.. Eating gluten hasnt done much to help control my stress or anxiety :/

Ok, Hon. I'm going to work with you like you are one of my boys and help you get it together, OK?

I have to do something now but ...I think you need a plan of action. A few things to work on. I would suggest the first thing to do would be get copies of any lab tests in the last year or maybe two. Get copies of any procedures, X-rays, ct scans, etc. Get the pathology report and the procedure report from your endoscopy. Put it all in a binder or a big envelope. Something to keep them safe.

When you get them, you can post what labs for Celiac you had and the pathology report. Then you can get some suggestions of where to go from there.

How does that sound? It's the weekend, so you have 2 days to relax and make some plans.

[taynichaf]

Ok, Hon. I'm going to work with you like you are one of my boys and help you get it together, OK?

I have to do something now but ...I think you need a plan of action. A few things to work on. I would suggest the first thing to do would be get copies of any lab tests in the last year or maybe two. Get copies of any procedures, X-rays, ct scans, etc. Get the pathology report and the procedure report from your endoscopy. Put it all in a binder or a big envelope. Something to keep them safe.

When you get them, you can post what labs for Celiac you had and the pathology report. Then you can get some suggestions of where to go from there.

How does that sound? It's the weekend, so you have 2 days to relax and make some plans.

Sounds perfect, thank you so much!

 

I'll make that my homework next week to call and get all my tests.. because I have had A LOT of stuff done in the last year lol. But I will start with that. Thanks again.

[kareng]

Sounds perfect, thank you so much!

 

I'll make that my homework next week to call and get all my tests.. because I have had A LOT of stuff done in the last year lol. But I will start with that. Thanks again.

And maybe a few loads of laundry and clean your bathroom?

[powerofpositivethinking]

Be as diligent as you can    there have been a lot of great changes for me going gluten-free, and some my Mom noticed are that my eye contact is better, my temper is not as easy to flare, I am more calm in general, and my anxiety has lessened  When I was talking to my Mom about these things, she said something to the tune of, "Maybe that's why you've always had a temper."  I kid you not when I say that when I was born the doctor told my Mom, "This one has a temper," because I came out crying, kicking, screaming and I was one of those babies that had my eyes wide open ready to take on the world.  No time for sleeping    now don't get pictures in your head of me throwing things  , but I've always had a shorter temper fuse than my siblings, and without gluten, I am so much more relaxed.  As an elementary teacher, I have always had a lot of patience for children because they don't know any better and it's my job to teach them, it's the adults that throw me for a loop 

 

although I don't live with my parents, I am still trying to get them to understand better.  here's something I posted in another thread:

 

I was visiting family this weekend, and my Dad had made cookies and asked if I wanted any.  I asked if they had flour, and he thought he was being funny by saying he used gluten-free flour...except they have no gluten-free flour     the probability of cross contamination, even if he did use gluten-free flour, is very high in my parent's house.  Since I don't live with them, I cannot expect that they rearrange their house every time I come to visit because that's not fair to them.  Since I'm still really new to gluten-free living, I find it easiest to eat whole foods, or prepackaged gluten free foods that I purchase and open myself when I visit them.

 

I tried not to get too upset, and instead the newest edition of Simply Gluten-Free came to the rescue.  There's an article in it about Bob's Red Mill's facilities, and the importance of keeping everything separate to prevent cross contamination including their buffer room.  I asked my Dad to read the article, which he did, and then he asked if he could pay me for the magazine, so that he can keep it and read the other articles in it.  I told him he could keep it, but I'd need it back the next time I see them     I can't expect them to be mind readers, so hopefully it will help.  

 

Little vent-My Mom is another story.  She tries to be helpful, except I've asked if she cannot loudly proclaim in the grocery store, "Do you see any of your gluten foods?"   I bite my tongue because I want to say, yes I see PLENTY of gluten foods, but I need gluten-free.  Do you think next time we're near the diet coke, I should loudly exclaim, "Do you see any of your aspartame beverages?"  end rant

 

I wish my Mom would get herself tested, but I can't control what she does.  I get frustrated, and that's only when I go to visit, so I can only imagine how difficult it is for you.   do the best that you can, and I am hopeful that your Mom will see the positive changes in you too!  have a great weekend 

 

 

I have copies of my tests in a folder actually I'm hoping that once my mom sees changes in me with eating gluten free she'll start to believe me.. But I don't know with her.. Shes the least supportive person I know and it SUCKS to have your mom be that wayyy..

 

Ohh, the only test I am missing so far is my egd that was just done, but they actually are supposed to just mail me the results... Do you think that they will not send eveything you guys are saying I need?

 

 

Thanks