How Many Of You

[k2626]

Had negative blood work but positive biopsy? Is it true if you are not really eating gluten befor your labs it may come out negative?

This is the only thing that I now think could be causing my stinging/zapping migratory pains, buzzing, horitzontal ridges in my nails, muscle twitching all over, GERD and occassional pancreas inflammation. All other things (TONS of scans, labs) have been clear.

[tictax707]

I had inconclusive blood work but a positive biopsy. In fact I had zippo in terms of ANY positive on ANY test, but I was so ridiculously sick and had been for weeks that it was the only thing left that hadn't been tested. And yes, it's true that not eating gluten can make your labs turn out negative. My Dr. tested me like this on purpose earlier this year (I've been gluten free 8 years now) and bam-o, I was negative.

[Reba32]

if the biopsy comes up positive, then you have Celiac disease. Blood work can come up negative for a number of reasons, which is why they still have to do biopsies.

[Nor-TX]

I came up negative on the biopsy, and the doctor refused to pursue it further. I started on a gluten free diet around November and then she refused to do blood tests until I went back to eating gluten. I refused because I was finally starting to feel better after being so sick for so long.

[jenngolightly]

Had negative blood work but positive biopsy? Is it true if you are not really eating gluten befor your labs it may come out negative?

This is the only thing that I now think could be causing my stinging/zapping migratory pains, buzzing, horitzontal ridges in my nails, muscle twitching all over, GERD and occassional pancreas inflammation. All other things (TONS of scans, labs) have been clear.

After reading so many horror stories on this forum, you're lucky that your doctor even ordered a biopsy after you came up with negative blood work! Be thankful you have such a thorough doctor. I hope you have a great relationship with her for years to come.

[tictax707]

Nor_TX, can you get a new doctor? Seriously. You need to have someone who is in your corner. That's bull-hooey that the dr. won't follow up, at least without you making yourself miserable and probably doing untold amount of damage to your system.

[Nor-TX]

Nor_TX, can you get a new doctor? Seriously. You need to have someone who is in your corner. That's bull-hooey that the dr. won't follow up, at least without you making yourself miserable and probably doing untold amount of damage to your system.

[Nor-TX]

TicTax707,

GI's in this city are basically in 2 huge conglomerates. Once you see one doctor in a conglomerate, you can't see another one. I burned my bridge with Conglomerate #1 when I left because the doctor told me the pain was in my head and I was causing my discomfort and would only give me 6 Asacol per day. I went to conglomerate #2 and the doctor there is not a snuggly type person. I have been with her for 5 years and I know not to expect long answers, returned phone calls or follow-ups. It's just a way of life. I see her once a year, she does a colonoscopy and gives me a year's worth of Asacol. She told me that my biopsy did not show Celiac and that was the definitive answer. When I told her I wanted the blood test she insisted it was not viable. I went gluten free and then when I pressed her again she said I would have to eat gluten for 2 weeks. I can't go back to conglomerate #1 because I would not be allowed to see another doctor. These 2 conglomerates operate the only Remicade infusion centers in this area. I am kinda stuck here. I am doing lots of research and investigation into my own health and with all the issues I have. I could see a GI who is not connected with these two conglomerates but would have to find another infusion center... not an option.

I am doing pretty good with gluten free, dairy free, raw fruit and veggie free, IBS friendly diet. My resolves slips from time to time and I crave foods I can't have and I feel that life should be kinder, but there are others who are much worse off than I and for that I am thankful. Have a great hubby who is supportive. Just feel sorry for myself sometimes.

[MagpieWrites]

Had a negative on the bloodwork -

My idiot doctors had me go OFF gluten as soon as the celiac question came up... and two weeks later called to tell me "Oh, yeah. You have to eat gluten for the bloodwork we are scheduling for you. You haven't stopped already, right?" Their justification for the screw up? Even though the doctor had gone on at length about all the dangers of eating gluten if it was celiac, even after I said I was so tired of being ill all the time that I was willing to do ANYTHING, he figured that even with me saying I was going to go home and clean out my house - he figured it would be too hard to manage and I wouldn't really bother giving it up until after the blood test and biopsy. Even though I had been TOLD to stop eating it at once. He figured I would "fit in with the normal American style and be too lazy to do the work to get healthy." :blink:

No. I did NOT invert the man's cranium into his posterior... I figured it was already pretty firmly wedged there!

So, the bloodwork was a washout and I was even called the morning of the biopsy and asked if I "really was going to bother going through with the test". Yup.

And when the doctor came out to my husband after? "Huh. Looks like it IS celiac, afterall."

Got the official results about a week later. Haven't gone back to the doctor since. Or looked back either!

And now that I have THAT little rant out of my system... (sorry about that. Apparently, I'm still a wee bit annoyed almost a year later.)

If you feel this is the answer - either PUSH for the biopsy (can't believe I had to do that. Who decides they want a hose shoved up their backside on a whim? I mean really. If I was asking for pain killers I could see. But I had to shove for THAT? ) or give yourself a month and go gluten free. If you feel better, maybe that is all the answer you need. Either way, hugs.

[tictax707]

TicTax707,

GI's in this city are basically in 2 huge conglomerates. Once you see one doctor in a conglomerate, you can't see another one. I burned my bridge with Conglomerate #1 when I left because the doctor told me the pain was in my head and I was causing my discomfort and would only give me 6 Asacol per day. I went to conglomerate #2 and the doctor there is not a snuggly type person. I have been with her for 5 years and I know not to expect long answers, returned phone calls or follow-ups. It's just a way of life. I see her once a year, she does a colonoscopy and gives me a year's worth of Asacol. She told me that my biopsy did not show Celiac and that was the definitive answer. When I told her I wanted the blood test she insisted it was not viable. I went gluten free and then when I pressed her again she said I would have to eat gluten for 2 weeks. I can't go back to conglomerate #1 because I would not be allowed to see another doctor. These 2 conglomerates operate the only Remicade infusion centers in this area. I am kinda stuck here. I am doing lots of research and investigation into my own health and with all the issues I have. I could see a GI who is not connected with these two conglomerates but would have to find another infusion center... not an option.

I am doing pretty good with gluten free, dairy free, raw fruit and veggie free, IBS friendly diet. My resolves slips from time to time and I crave foods I can't have and I feel that life should be kinder, but there are others who are much worse off than I and for that I am thankful. Have a great hubby who is supportive. Just feel sorry for myself sometimes.

Oh man. That does really sound like you are stuck between a rock and a hard place. Stupid insurance rules. Ultimately you are doing the right thing anyway, even if you actually had a good doctor. Nobody can watch out for your health like you can, so doing your own research is for the best. I am glad you have found a way to get by, and have a good support system.

[kayo]

Nor_Tx that just blows!

Are you on Remicade for your RA or is it for your GI issues? I'm wondering if there's an RA center you can go to for your Remicade which would relieve you from the conglomerates?

I once had a doc that I didn't care for. Got stuck with her when my doc retired. Saw her twice and we just did not click. So I said I wanted to see someone else and asked for an appt. The receptionist told me I couldn't see another doctor because they doctors don't like when the patients switch around. I lost it, I said I don't give a f* what the doctors feel, I'm here for my health and I've been coming here for longer than you have been alive so I will do what I damn please.

I have no idea where that came from but it seemed to erupt like a volcano all the way from my toes and out my ears. I'm surprised there wasn't steam! I'm an easy going polite kinda gal who but when it comes to my health I want the best and I just couldn't take it anymore. Soooo sick of doctors and their precious egos. Needless to say I got the appt. I was the 'squeaky wheel' that day.

So if you need to blow your top to be heard and get what you need, and deserve, do so. You are your best advocate.

I'm all for being assertive with a side of polite but sometimes we need to be dang pushy!

[Nor-TX]

Nor_Tx that just blows!

Are you on Remicade for your RA or is it for your GI issues? I'm wondering if there's an RA center you can go to for your Remicade which would relieve you from the conglomerates?

I once had a doc that I didn't care for. Got stuck with her when my doc retired. Saw her twice and we just did not click. So I said I wanted to see someone else and asked for an appt. The receptionist told me I couldn't see another doctor because they doctors don't like when the patients switch around. I lost it, I said I don't give a f* what the doctors feel, I'm here for my health and I've been coming here for longer than you have been alive so I will do what I damn please.

I have no idea where that came from but it seemed to erupt like a volcano all the way from my toes and out my ears. I'm surprised there wasn't steam! I'm an easy going polite kinda gal who but when it comes to my health I want the best and I just couldn't take it anymore. Soooo sick of doctors and their precious egos. Needless to say I got the appt. I was the 'squeaky wheel' that day.

So if you need to blow your top to be heard and get what you need, and deserve, do so. You are your best advocate.

I'm all for being assertive with a side of polite but sometimes we need to be dang pushy!

Kayo,

I do go to a RA place for my Remicade. He is also part of Conglomerate #2. The GI approves the infusions, the RA doctor oversees them and the nurse administers them. Everyone gets a piece of the 8,000.00 Isn't life good?

[tarnalberry]

you might consider finding a doctor outside of your city. yes, two hour drives to see a doctor are nothing short of inconvenient, but sometimes necessary. (I just use two hours as an example because that's how far away one of my doctors was - 90 miles each way.)