Aauggghhhhhhh Doctors!

[moonunit]

Okay, I know, there are lots of vents on this board, but I need to add this one.

Blood test positive, biopsy negative, gastro a complete jerk who decided prior to the biopsy that positive blood work meant nothing and didn't need to take a history to tell that I didn't have celiac disease. Has someone call me to tell me that I need to meet with my primary care if I want my test results (the same primary care that he said "didn't know what she was talking about" when she said my test came back positive.)

I discover that only the AGA IgA and IgG were done, not the full blood panel. I print out the page from the Columbia University Celiac Disease Center to bring with me to the primary care. I walk in, ready to tell her that the gastro was biased from the start and solicit her help in getting some answers.

Apparently, my primary care has now drunk the kool-aid and changes her answer that the blood work doesn't matter, only the biopsy matters. I showed her the printout and said that the four tests weren't all done, and she literally took her pen and CROSSED OUT the other three, and said "you know how the Internet is..." This was information from one of the top celiac disease research centers in the United States! She added that if she had known I would have the biopsy, she would never have ordered any blood work at all, because I didn't need it.

I have looked at my numbers -- one comes back in the "negative" range, and one is in the "positive" range. She told me it was a "borderline" positive, but according to the key on the page she handed me, under 25 = negative, 25.1-29.9 = equivocal, and 30.0 and up = positive. So yeah, I had 33.3, which isn't huge, but it IS positive. She told me "yes, but it goes up to 100, so you barely register."

Fine. Biopsy normal, stool sample normal, upper x-ray normal. For this AND Crohn's, which is what my gastro told me I had. So I ask my primary care "okay, you're saying I don't have either of these diseases. What is causing my symptoms, then?" She says, according to this you have "functional diarrhea," which means that "medical science cannot come up with a cause for your problem."

"But the good news is you don't have to go on the gluten-free diet!" AAUUGGHHHHHHH!

She also repeatedly told me that I didn't have any symptoms of celiac disease. Guess the functional diarrhea, the steatorrhea, the gas, the rash, the aching joints, and all that stuff aren't symptoms. She did offer up that I "must have good genes" because my cholesterol was off-the-charts low. That's a symptom too, isn't it? I didn't bother to mention it to her after her little cross-out theatrics.

She gave me the sad head-shaking smile "you're a hypochondriac" look as I got angrier and angrier, and we left it as "we don't know what is causing your problem, go back and meet with your gastro in two months."

After much discussion with my husband (poor guy got the brunt of my ire), we decided rather than go to the celiac experts in our area, of which there are many, I will go on the diet for three months as a trial run. Unlike these doctors, I am still INVESTIGATING what I may have, and while I think it's likely that I have celiac disease, I'm not going to disregard the possibility that I may not. If I go on the diet and feel better, then I can decide whether I want to just leave it at that, or seek further assistance in getting a definitive diagnosis. I'd love to know for sure, but that doesn't seem to be in the cards for me right now.

Thanks for letting me vent -- I really appreciate all the support I've seen on this board, for me as well as others! It's been a long and frustrating road, one I hope is finally setting out in the right direction now...

[penguin]

Well, that blows. Positive bloodwork is positive bloodwork. If it was just the IgG that was positive, it could have been because of Chron's, but since that was ruled out, here we are. Idiots.

I can't believe she crossed out the other three! WHAT BS!!! She's trying to cover her ass because she ordered an incomplete panel. I guess she went to PoDunk Med School because she couldn't get into Columbia.

Go gluten-free and find new doctors. Sheesh. Sorry you had to deal with that

[RoseNNJ]

If you feel better being gluten-free as I do... Screw the Doctors!

[nettiebeads]

From what I've read, the biopsy isn't the gold standard. And false negatives abound anyhow. I agree with your decision to try the gluten-free diet for three months. I was dx'd by diet alone 9 years ago and that was good enough for my dr then and my current dr has no problems with the fact that I've never been scoped, tested or anything. It's your body and your health; not that crappy dr's. First do no harm, but in refusing to help....I understand your frustration. I do so hope that the diet gives you the answers you need. Just beware of hidden sources of gluten and cross contamination.

Annette

[Guest nini]

oh man, that's just ridiculous! I can't believe she crossed out the other 3... OMG... "you know how the internet is" BS (sorry.) A renouned Celiac expert has repeatedly said that you need that complete panel in order to tell what is going on, I am so fed up with Dr.s that don't know what they are talking about, pretending like they do. IF YOU DON'T KNOW, SAY SO!!!! Don't fake it til ya make it, that crap don't fly with me.

what's this about "if I'd known you were going to get the biopsy I wouldn't have done blood tests???" what is that??? STUPID!

The biopsy can only rule it IN if positive, it can NEVER EVER rule it out... you are very very smart to try the diet and see how you feel...

Good luck with it all and {{{{{{{{{{HUGS}}}}}}}}}}}}}}} you need it after that!

[plantime]

Hey, vent away! My doc told me not to believe what I read on the internet, as it is all a bunch of hype. I figured it wouldn't hurt me to try the diet, and I was sick any way, so I went for it. I am glad you decided to try the diet test, it is how I knew for sure long before I had a biopsy. After 3 months on the gluten-free diet, try eating one slice of bread or some cream of wheat (just a little bit!) to test for the symptoms. Of course, if you notice a drastic improvement on the gluten-free diet, don't try the bread thing! I hope you do find the answers you are looking for.

[moonunit]

Thanks, you all are great. I'm just so mad! Why are doctors allowed to do this? Shouldn't there be some penalty for a doctor handing you a positive lab paper and saying "you don't have this disease"?

I'm not saying a class-action lawsuit is necessary or anything (not that it didn't cross my mind as I was fuming on the way home) but this is going to happen to the next person who sees her, and the next, and the next... I want to help it to stop, but I don't know how. I mean, shoot, awareness clearly isn't the answer when the top experts in the country are crossed off with the flick of a pen. She's not the only doctor like this, we all know that. It's an epidemic, not just the disease but the stubbornness of the medical community.

WHAT can be done?!

[Rusla]

Believe me I know where you are coming from on this. I went through this with so many doctors not just on this disease but on the Hashimoto's as well and pernicious anemia. Vent away when they blather to me about this and that, I tell them I have had my body much longer than they have been admiring it so, who knows better how I feel me or them.

Time to book appointments with our veterinarians.

[debbiewil]

Time to book appointments with our veterinarians.

Oh, Rusla, I soooo agree! There are several different vets in the group practice I take my cats to, and there isn't ONE of them who isn't more caring, concerned and better than any doctor I've seen in the past ten years. The vets take the time to check everything, ask me about any concerns, offer suggestions and alternate possibilities if one thing isn't working, and not just on health problems, but on behavorial issues also. I've told them all several times that they can be my doctors anytime, but they say the law doesn't allow it.

Debbie

[debmidge]

Aauggghhhhhhh! I recognize that scream anywhere! It's the roar of the celiac when it's not been diagnosed correctly. At first scientists played down that connection and then conceded after they had to hear it too many times.

[Canadian Karen]

What really bothers me is how doctors are still going by the biopsy as the "gold standard". When they do the biopsy, you may very well have significant damage, but if they happen to snatch little parts of the wall that aren't affected, the damage won't show! Its kinda like someone having a patchy DH rash on their back and telling someone, "Okay, close your eyes and snatch 4 or 5 little parts off my back (with the claw thingy instrument!). It's hit or miss as to whether they actually grab any DH affected parts or not...... same goes for the intestinal biopsy - it's all it or miss.......

GRRRRRR!

Hugs.

Karen

[Carriefaith]

I'm sorry

I think that you are making the right choice my going gluten free after everything that you have been through. The fact that you had a positive blood test says something. Which test came back positive?

You could get a gene test done to see if you have one of the celiac genes. I read on here not to long ago that a doctor dignosed someone with celiac disease based on a positive gene test ... and a positive dietary response?... a positive blood test?... or symptoms? (I don't remember which one aided in the diagnosis with the gene test). But the point is that you could get an offical diagnosis with the gene test and other positive tests. I know that enterolab does the gene test. Open Original Shared Link

I would consider changing doctors, if possible.

[ravenwoodglass]

And people wonder why we as a group hve such a problem with doctors!!!!!! Get your records from this jerk, go gluten-free and find another doctor.

[moonunit]

Now that I've had a chance to look at my lab work without being afraid I'd catch the paper on fire with my eyes glaring at it so hard...

The Gliadin Antibody IgA came back 33.3. The Gliadin Antibody IgG was 3.2. The biopsy was done on two samples, or the lab reported receiving two tissue fragments, anyway. (I've read that 15 is what you need, but apparently I was "difficult" under anesthesia and they had to rush the biopsy. I guess that's rare, because the gastro, the nurse AND the primary care all mentioned it and acted as though they suspected I had fought them on purpose! Naturally I remember nothing, since it was that amnesia drug they gave me.)

When I asked, having not looked at this paperwork yet, whether multiple samples were taken to biopsy, she underlined the part under "microscopic" where it says "one slide examined microscopically including multiple level sections." I guess she figures that looking really hard at one sample is the same as looking at samples across the intestine?

My Alk P'Tase number was out of range, but the doc just underlined it and didn't say why or whether it meant anything. I think that has to do with liver function but I am NOT sure. My LDL cholesterol was 81, which is apparently astounding, considering the amount of junk food I eat. Other than that, everything was within the ranges, looks like.

So there you go. The more I read, the more I think maybe it's a sensitivity or early enough stages of the disease to not involve total villous atrophy. But here I am awake because I couldn't sleep thinking about the meeting and her stupid pen underlining her stuff and crossing out mine. It really makes me want to type up a list of facts with references and drop it off for her to read or something... but I know she'd throw it away without looking at it. I don't know how to just get past the anger that a doctor could be so blatantly ignorant and so smug at the same time. That's my biggest hurdle right now.

Thanks again for all the comments. It helps so much to not be alone!

[Guest Babbia]

One more story to add....I had to go to a walk-in clinic recently for a UTI. I asked the doc there if there was a connection with the UTI and celiac.....he responded by saying that I can't have celiac cause I look very healthy!

Hahahahahaha

I smirked and kept my medical knowledge to myself.

[Carriefaith]

Here is some information on the the test that came back positive:

ANTI - GLIADIN ANTIBODY, IgA : Gliadin IgA is an enzyme-linked immunosorbent assay (ELISA) for the detection of Gliadin IgA antibodies in human serum. Detection of these antibodies is an aid in the diagnosis of certain gluten sensitive enteropathies such as celiac disease and herpetiformis. Celiac disease or gluten sensitivity enteropathy is a chronic condition whose main features include inflammation and characteristic histological “flattening” of intestinal mucosa resulting in a malabsorption syndrome.

Open Original Shared Link disease=1

Since they only took two biopsy samples during the endoscopy, they could have missed villi damage.

[eleep]

I completely empathize with your anger and frustration here -- I had a similar kind of experience at the end of January (many people seem to have had the same). I also just went on the diet and I'm really glad I did. Was thinking about doing a trial pasta experiment to see if I get a reaction, but I've had one restaurant-based accidental glutening experience and I think I know enough not to play science experiment with my body anymore.

[slpinsd]

Aw man, we can all empathize with you. I'm pretty sure I don't have the full blown villious atrophy either, but we can still have Celiac! I hope the diet works for you-it has for me (except for mysterious glutenings!) I had a horrible appointment with an endocrinologist a few months ago. I wrote a 4 page letter to him, explaining and backing up what I stated with research-refuting his lack of knowledge- and I asked for my money back for the visit. It worked. I never heard a word from him again except for the $10 check I got in the mail. You could try that? And oh yeah- SWITCH your primary, and write her a letter explaining that you are firing her and why. Back it up with medical research and speak to her like she is a GI Kindergartner and you are the teacher. (no- I'm not passionate about this!) She'll be eating her words when you put it all on paper like that. You also might want to send a copy to the Medical Group Office- or someone else higher up. My doc thinks she saw intestinal damage, biopsy negative, blood work BARELY positive as well. But positive IS POSITIVE!