Frustrating Experiece With Waffling Doctors

[jnh380]

Ok, just need to vent. I am currently with Kaiser and I my history of this diagnosis is as follows:

1. Primary doc orders TTG test, comes back positive. She told me it is possible celiac, tells me to avoid gluten and refers me to GI department.

2. GI doc calls me for 5 minute phone call and orders a endoscopy.

3. Different GI doc performs endoscopy, tells me she suspects she wont find anything

4. First GI doc calls me to tell me they did not find "Classic finding of celiac" on biopsy.

5. I get the report myself, and it states that they found "focal partial villous blunting, the significance of which is unknown"

6. After a strongly worder email, first GI doc then says I maybe could have a "mild" form of celiac, refers me to dietician.

7. First dietician calls me, luckily she has Celiac so is really knowledgeable. Sets up appointment for a different dietitican.

8. Second dietician is clueless and refers me to a pamphlet she got at a celiac conference last year. otherwise she has nothing valuable to tell me.

9. First dietician calls me again, says, "oh, i dont think you have celiac. Wait. let me look at your test results. oh, maybe you do have it. either way you should have your primary doctor put in your chart gluten intolerance" so that if I am hospitalized, they wont try to feed me wheat.

Between the 5 different medical professionals, all i get is wishy washy, maybe yes maybe not answers. None of them has taken any time to actually listen to me and see the whole picture of my symptoms and now succesful early recovery on a gluten free diet. If one of them actually had more than 5 minutes to spend with me they could put it all together like i have. Positive TTG, Biopsy findings, Elevated liver tests, low Vitamin D test, chronic diarhea, gas, heartburn, canker sores, brain fog, anxiety, depression, peripheral neuropathy, etc... and now 6 weeks gluten free and i am starting to feel like my old self again.

I am just frustrated!!

[mushroom]

But at least you know you have it, even if they don't I have noticed this is a common pattern with Kaiser - they only ever run the tTG (and total IgA) but none of the other celiac tests, they never diagnose when it's positive, they seldom even order endoscopy (you were lucky there), and they don't recognize biopsy findings as being significant. It is such a puzzlement why they would not wish you to have celiac disease because then they could just say, "You have celiac, eat gluten free, and don't bother us." (which seems to be their goal). Did they check for any other nutritional deficiencies besides D? Maybe this is what they do not want to do... You should, at a minimum, have your B12, iron/ferritin, potassium and magnesium checked, and have a thyroid panel (TSH, free T3 and free T4.)

By the way, most dieticians are not much help with celiac, if that makes you feel any better

[Takala]

Kaiser is all about their statistics. If they don't diagnose, they can claim they have a healthier than average clientele (on which they need to spend LESS money). This sets them up to obtain bids during open hunting, er, open enrollment season for health insurance. "Lookie, we have healthy people we're cheap to use for your insurance!" At the same time, if they frustrate those with options, those people will leave this HMO to save their own lives, and that makes their client pool statistically "healthier," again. This is how insurance companies pass around patients with chronic conditions, like they're radioactive.

Now, let's look at your tests- positive tTg blood, and villous blunting, intestine lining. That, with your symptoms, is how the medical world currently diagnoses celiac disease.

Good for you in ferreting out this information. (My task is nearly completed here, another "save" from years of misery. )

The first dietician is telling you what to do. You will need to pressure the PCP to put this in your official HMO records that you have met the diagnostic criteria for celiac disease in the USA in the year 2012. Indeed, you are following standard medical advice as found in the latest medical research, which can be accessed at the NIH, and have started a gluten free diet. And you're seeing results. Congratulations!

This is assuming you don't want Kaiser to try to kill you later by "losing" your records. They tend to do that. Once it's there, you can make copies of it - indeed, save the info on the villous blunting and tTg ! But don't let them get away with not acknowledging officially that you had met diagnostic criteria.

It is simple. You look at the PCP, and you ask, what are you doing to update my records so the latest correct information is there, that I am celiac, so I am not mis- treated in the future?

If he/she (the PCP) refuses to do this, then the state your reside in does have places to lodge complaints against medical malpractice.

[jeanzdyn]

my gastroenterologist actually said to me, "we think that maybe you have celiac sprue". That was the diagnosis from my colonoscopy and endoscopy. I was not surprised to hear that, but I found it troubling that he said "we think" and "maybe".

Anyway, like I say, I was not surprised. Also, being gluten free has relieved most of my symptoms.

However, I have had symptoms of gluten intolerance and celiac disease since 1979. I realize this after visiting this forum and reading the symptoms others list here. I have spent over 25 years walking into doctors offices with a list of symptoms that seemed to have little connection to each other, until now. For most of my life doctors have been telling me that everyone has problems and there is nothing wrong with me.

I just thank God that I was never so sick that I was unable to work, live or function.

For 2 years, in the early 1990's I had chronic diarrhea and no health insurance --that is the sickest I have ever been, and I had to self-diagnose and figure out what to do about it all by myself.

At that time cutting back on breads and adding acidophilus to my 'diet' was all I did, and it worked. Over the years I have made dietary changes that have more or less held my symptoms "at bay". As for my self-diagnoses I have looked into everything from hypoglycemia to sjogrens syndrome and then some. The only thing doctors have ever seemed interested in is testing my thyroid (always normal) and testing for anemia (always negative).

I believe that I have had celiac disease for a long, long time, and that it may even be genetic.

I learned long ago to not trust in everything doctors tell me.

They just don't know enough about celiac disease. I take what the doctor says with 'a grain of salt' -as well as what I read on the Internet.

I am thankful for all of you, here at the celiac.com forum. Thanks for all the advice and commiseration.