Doctors! Grrr....

[jswog]

So I had a colonoscopy/endoscopy with biopsy two weeks ago and my follow-up appointment was today. Well, apparently the doctor couldn't be 'bothered' to do the correct biopsy, DESPITE having very specifically requested Celiac testing with the nurse practitioner during my initial appointment with her. He did biopsies of the esophagas and stomach, but NOTHING in the small intestine! Shockingly (sarcasm), they did find esophageal damage from acid reflux. Duh! I'd already TOLD them that! But he didn't SEE any damage to the small intestine, so he decided not to biopsy that. But isn't the whole point of a biopsy is that the damage is MICROSCOPIC????? And when I talked to the NP about my dietary changes/elimination diet, she actually had to ASK what an elimination diet was! I mean, seriously, this whole stinking procedure was a waste of time and money! And she gave me 'permission' to 'keep doing what I'm doing' because she saw very distinct symptom relief (including the noted weight loss that she mentioned to me as soon as she walked into the exam room). I think I should be getting paid instead of them for the diagnostics!

OK, done with the vent... Now for my questions...

So where do I go from here? What would you do? Given the symptom relief, etc., I'm totally, throughly convinced that I DO IN FACT have Celiac Disease. Do I need to go back to my GP and get a new referral to a different GI who will actually LISTEN to me and take me SERIOUSLY? This may entail a 3-4 hour drive as I'm in the middle of nowhere Texas. My husband is VERY supportive and only wants me to get better. He's VERY willing to make that kind of drive if it will mean finding a doctor who can help. Do I just 'self-diagnose', call myself Celiac, and drive on with my newfound gluten-free diet?

So frusterated with the medical community right about now...

[kareng]

I think you need to write a letter to your insurance company ( & a copy to the doctor) explaining that the endoscopy was done incorrectly & didn't look for the disease it was intended to look for. Insurance won't pay for another endo when you just had one! If it was done at a hospital - send a copy of the letter to the billing Dept and the Medical Staff Department ( send one to the Chief Finacial Officer, too).

Write your letter. Do not send it right away. Give it to someone else to read. You will probably only get one chance to make your point so we want it right.

This is very important:

Get copies of any blood work, office visits, Operation report & path reports before you send the letter. Do not give the doc a chance to add some nonsense to cover his butt & fees.

This is if you want a diagnosis by endo.

[mushroom]

You have every right to be frustrated, but unfortunately it happens all too frequently

You are rather between a rock and a hard place now. You have been gluten free for a period of time, and it helps. It helps because you are no longer making the autoimmune antibodies and your small intestine is healing. Healing means that if they repeat the procedure you may have healed enough that the findings will be negative even if they would have been positive before. BUT, and this is a big but, they would not necessarily have been positive. Non-celiac gluten intolerance is even more prevalent than celiac. You can have negative biopsy with positive blood work. Or positive biopsy with negative blood work. Or both positive. Or both negative

Only you can decide what to do at this point. In order to be sure of positive findings (if you turn out to be positive) you would have to go back to eating gluten for two to three months before testing, and you may not want to do that. You have to decide whether you can live with a self-diagnosis and just feel better, or still want to pursue a doctor diagnosis.

[cahill]

So I had a colonoscopy/endoscopy with biopsy two weeks ago and my follow-up appointment was today. Well, apparently the doctor couldn't be 'bothered' to do the correct biopsy, DESPITE having very specifically requested Celiac testing with the nurse practitioner during my initial appointment with her. He did biopsies of the esophagas and stomach, but NOTHING in the small intestine! Shockingly (sarcasm), they did find esophageal damage from acid reflux. Duh! I'd already TOLD them that! But he didn't SEE any damage to the small intestine, so he decided not to biopsy that. But isn't the whole point of a biopsy is that the damage is MICROSCOPIC????? And when I talked to the NP about my dietary changes/elimination diet, she actually had to ASK what an elimination diet was! I mean, seriously, this whole stinking procedure was a waste of time and money! And she gave me 'permission' to 'keep doing what I'm doing' because she saw very distinct symptom relief (including the noted weight loss that she mentioned to me as soon as she walked into the exam room). I think I should be getting paid instead of them for the diagnostics!

OK, done with the vent... Now for my questions...

So where do I go from here? What would you do? Given the symptom relief, etc., I'm totally, throughly convinced that I DO IN FACT have Celiac Disease. Do I need to go back to my GP and get a new referral to a different GI who will actually LISTEN to me and take me SERIOUSLY? This may entail a 3-4 hour drive as I'm in the middle of nowhere Texas. My husband is VERY supportive and only wants me to get better. He's VERY willing to make that kind of drive if it will mean finding a doctor who can help. Do I just 'self-diagnose', call myself Celiac, and drive on with my newfound gluten-free diet?

So frusterated with the medical community right about now...

Almost exactly what happened when I had my endoscopy , The DOC did not see anything ( with the naked eye ) so he did not take any biopsys .

What you do now depends on a couple of things;

do you NEED an "official " diagnoses to be/stay gluten free??

are there symptoms that could be caused by other things??

What I did ( because I wanted to excluded ANY other causes) was have a colonoscopy (which you have already done) and saw a GI doc to rule out other things.

I was "lucky" . I saw a GI doc that actually looked at and read the 4 inch pile of test results I handed him .Test results that had been accumulated over 40 year of misdiagnoses, including CT scans, test results from my neurologist and allergist, MRI scans, spinal tap for MS,DEXA scans and blood work( which include a positive ANA, postive for Hashimotos, reduced renal function and liver issues )and I told him of the positive resulted I had had being gluten free.

He looked at me and said you have celiac's.

ya think

[Takala]

Well.... Welcome to the Unofficial 5% of the Population ~

First get written copies of all your test results.

Then contact a lawyer, and see if you can get this person who couldn't follow your requests onto some sort of **** list.... like a peer review board.... do what Karen said, but have the lawyer write the letter(s). You don't want to sue this idiot, just let it be known that you don't find it acceptable behavior to refuse to perform the test you medically had need of, because this is going to screw your diagnosis, up and screw you up with your insurance. BUT, these U.S. docs all have sorts of referral kickback agreements with each other, so just how do you get along with your GP, is he/she a good person who will stop referring patients to this rip off artist, or another one of these types that is blowing you off, you may not want to stay with them, either. On the other hand, you don't want to get medically blacklisted. And you don't want the insurance companies sticking you with the bill if they are obligated to pay.

I had a variation of what happened with this (my state of non official diagnosis) because the doctor that was running the tests was doing them very slowly in an order which was the most beneficial to her reimbursement processes, but was sending me on a wild goose chase and when I finally got test results back from going to her office when she was not there and making them cough 'em up, and saw what they were, I ended up making another appt (they also were canceling them on me) to discuss this, and she bald faced lied to me about it, "nothing there" re the spine problem, implied I was a head case, then walked out of the room ! - pity I didn't have a hidden camera on me. I have told this story to several medical professionals, and they just give me this sad look, like they know they've heard the stories before, but they don't try to refute it.

Get the test results first, because you may end up getting a nastygram from the medical office saying "no more appointments for you !"

Since I knew I responded to diet, I self diagnosed on that, based on symptoms, family history, ethnic background, and the holes in my brain the scan showed, and the bone damage the scans showed.... I'm at least gluten intolerant, and had a lot of neurological damage, much of which has somehow healed, don't read the crap that says it cannot happen, it's possible. I was grain free for a while, and it took several years, but at least I don't use a cane to walk with (except maybe steep hill hiking) anymore. And those lifelong kidney problems went away, too.

That's good you're having symptom relief from the diet, and they "gave you permission" to keep doing what you're doing. (eye roll.....)

You can always get an otc genetic test if you're curious about if you're carrying the genes predisposing you to it.

[jswog]

That's good you're having symptom relief from the diet, and they "gave you permission" to keep doing what you're doing. (eye roll.....)

Thank you for the laugh! I really needed that!

You can always get an otc genetic test if you're curious about if you're carrying the genes predisposing you to it.