Is My Doctor An Idiot?

[katethegreat]

New here to the forums, and have gotten a lot of good information from all of you. I am now making my virgin post, need your opinions on my situation.

For as long as I can remember, have never really liked bread or sandwiches, would forgo dessert for another helping of rice or mashed potatoes, cookies and cakes were just not my thing. In spite of this, have always have an upset stomach, diarrhea at the drop of a hat. Thought it was just nerves. Last year, sold our house, moved (next door to my parents, yikes), our oldest started kindergarten, potty training youngest..... LOTS of stress. Started having bad stomachaches, hartburn that would not go away, eating Tums every day, lots of gas (hubby was fond of that), uncomfortable bloating, headaches, lethargy, etc. Sent to Gastro Doc, very anemic, low blood count, thought I had ulcer...Upper GI, no ulcer, just irritated. More tests, regular GP says "maybe it is Celiac disease, lets test". Blood test, I think ttg, very high (positive is 7, mine was 15). Great, have Celiacs. Have been on the gluten-free diet now for 4 months and felt better from the second day on it.

Now to the good part. Gastro wants to do biopsy. Guess what the result is? Negative. And then his "I'd like to think I am a doctor and I know everything" nurse tells me, over the phone, that they don't think I have Celiacs disease bc of the negative biopsy. WHAAAA??? Okay, maybe she is just overstepping her ranks here. Then talk to the doc, he says the SAME THING. Is he mad? Or am I?

Hell, even I know that since I have been on a gluten free diet for four months the odds of getting a positive on the biopsy are slim to none! I am just at my wits end, and barely managing to keep from eating all the glutinous goodies I can get my hands on!!

Hope you guys can give me your opinion!

[CarlaB]

Welcome!

Yep, your doctor's an idiot. Why would any GI who knows anything about celiac disease do a biopsy on someone who's been gluten-free for four months???

With a positive blood test and postive dietary response, I think you have your answer.

I'm sure eating all those glutenous goodies would make your symptoms return. If you feel you must do a gluten challenge, then do one. If it puts your mind at ease, it might be worth it.

[Teacher1958]

Most doctors don't know jack about celiac disease. I have to give my doctor information on it. She's clueless. She didn't even know that it affects the small intestine, not the colon. Eventually, I want to see if my insurance would cover a visit to Columbia in NYC, but I'm too busy right now. I just feel like most doctors don't have a clue. By the way, TUMS have gluten in them, even the ones that aren't supposed to. They actually make the gas worse! Avoid gluten at all costs. If it looks like a duck, walks like a duck, and quacks like a duck, it's a duck!

[katethegreat]

That is what I thought too, but I also do not have a lot of fancy letters after my name, so I gave him the benefit of the doubt.

Yeah, was just joking about gorging on glutinous goodies, have been so strict that if there was even a question about it being "tainted" I would just go hungry....so ain't gonna screw it up now.

Thanks for the advice, just so frustrated and know that the hubby is tired of all my nonsense.

[Ursa Major]

If you had a positive blood test and positive response to the diet, what is your husband's problem? Is he not happy that you are finally starting to feel better?

Your gas could very well be due to dairy as well as gluten. Almost all people with celiac disease can't tolerate dairy at first, and many are intolerant to casein and can never have it again. Gas is one of the most obvious symptoms of a dairy intolerance.

So, my advice is, eliminate dairy and stop using tums. And forget about that idiot doctor, he doesn't have a clue about celiac disease.

[hathor]

Yes

Honestly, don't we have enough of these threads that folks begin to realize the possibility?

There are lots of diseases out there; no one can be expert on all of them. But he should have done a little research before he put you to the trouble of an endoscopy. Now he may actually know that the test is meaningless for you ... but you aren't going to get him to acknowledge this now unless he is extraordinarily honest.

If it were me, I would probably find the most informative article or text I could find about the need for having lots of gluten for some time prior to an endoscopy and how quickly folks can heal. I would then send it to your doctor with a FYI notation and the information that you will be seeking medical advice from someone else now ... obviously. "Just so that future patients of yours aren't put through meaningless testing," etc.

Plus, some times enough samples are not taken & damage is missed ... and some times the samples are not examined closely enough. Positive blood testing & a good, quick response to going gluten-free are enough for a diagnosis.

Maybe I'm just a snot. But if this happened to me I would be furious. What if you had had an adverse reaction to the anesthesia, etc.? Wow, I'm getting mad and it didn't even happen to me For me, I might even report him to the licensing authorities, the insurance company, or sue. Or all three (Yes, I'm a lawyer. My husband is, too ... he would probably insist we sue )

Well, I'm obviously on a roll. I better stop. You need less stress, not more. Just know this ... you are right, and he is wrong. You are feeling better & that is a wonderful thing. Stay with that and realize you don't need the doctor's permission to continue not eating gluten. Official celiac or no, you can just keep doing what makes you feel better. Relax, eat foods that are good for you, heal.

I hope your hubby's problem isn't that he thinks the doctor is right but that he agrees with you that the doctor is wrong!

If you still have any symptoms, going dairy free (including stuff with added casein, that you might not identify this way) is a good idea. You might even try this if you are feeling really good. Who knows, you might surprise yourself and feel even better.

[happygirl]

kate:

I had a very, very similar situation. positive blood tests, and the idiot GI told me to start the diet before my biopsy. My biopsy was....negative. .

I hate it that there are so many doctors like this out there...but there are. I would recommend finding a knowledgable GI doctor and talk to him about it, if you have more concerns. You can post on the board, or contact a local support group for a list of drs.

Best of luck, and welcome to the board!

[katethegreat]

Yes

Honestly, don't we have enough of these threads that folks begin to realize the possibility?

There are lots of diseases out there; no one can be expert on all of them. But he should have done a little research before he put you to the trouble of an endoscopy. Now he may actually know that the test is meaningless for you ... but you aren't going to get him to acknowledge this now unless he is extraordinarily honest.

If it were me, I would probably find the most informative article or text I could find about the need for having lots of gluten for some time prior to an endoscopy and how quickly folks can heal. I would then send it to your doctor with a FYI notation and the information that you will be seeking medical advice from someone else now ... obviously. "Just so that future patients of yours aren't put through meaningless testing," etc.

Plus, some times enough samples are not taken & damage is missed ... and some times the samples are not examined closely enough. Positive blood testing & a good, quick response to going gluten-free are enough for a diagnosis.

Maybe I'm just a snot. But if this happened to me I would be furious. What if you had had an adverse reaction to the anesthesia, etc.? Wow, I'm getting mad and it didn't even happen to me For me, I might even report him to the licensing authorities, the insurance company, or sue. Or all three (Yes, I'm a lawyer. My husband is, too ... he would probably insist we sue )

Well, I'm obviously on a roll. I better stop. You need less stress, not more. Just know this ... you are right, and he is wrong. You are feeling better & that is a wonderful thing. Stay with that and realize you don't need the doctor's permission to continue not eating gluten. Official celiac or no, you can just keep doing what makes you feel better. Relax, eat foods that are good for you, heal.

I hope your hubby's problem isn't that he thinks the doctor is right but that he agrees with you that the doctor is wrong!

If you still have any symptoms, going dairy free (including stuff with added casein, that you might not identify this way) is a good idea. You might even try this if you are feeling really good. Who knows, you might surprise yourself and feel even better.

I know that there are a lot of posts on this particular subject, thanks for answering yet another one! I am so glad to hear others echo my and my husband's sentiments, seems like people give doctors this god-like status, when they just follow a basic script and test till they can't test anymore. Where is the intuitive doctoring?

And let me tell you, I was very upset and still am at the instant backpedaling of the GI doc. I did ask him how many patients he has with celiac disease and he said 12, and this is probably out of 3,000 patients so....I think I may be changing GI docs.

Have thought about lactose intolerance...never have liked milk and don't get a whole lot right now, going to try to cut out one thing at a time (don't know if I could take gluten-free and DF at the same time right now).

Don't worry, hubby very supportive, I just feel bad about all the b%$@#in I have been doing lately bemoaning my diet and 'tarded GI doc. I know he gets tired of it, cause I sure do.

Thanks again for the info and support, some days this is the hardest thing in the world to deal with....and I have two kids, one of whom is nicknamed "destructor"!!

Kate

[kevieb]

kate---this is an easy one. since your doc tested with a Ttg test, and you have now been gluten free for 4 months, ask for a repeat Ttg test. when the results come back lower, i don't know how your GI could still tell you that you don't have celiac disease. i can't believe that the gi didn't think of that one himself????

[par18]

Stay on the diet. Find another doctor.

Tom

[mamabear]

Kate,

There is no doubt you have a GI doc who does not keep up with the literature!

Unfortunately this is far too common here in the USA . My niece had her EGD and colonoscopy done(East TN) BEFORE they got her serologies back, and since "It looked normal" ,he didn't biopsy anything!!!Then they had to call and tell her she had celiac disease based on the bloodwork.

Then a GI here in town refused to biopsy someone who had negative serologies "because celiacs don't have any symptoms" !!!!!!!!!!!

I liked KevieB's suggestion to continue to follow the diet..but I'd wait until I was 6 months off gluten before repeating the bloodwork.

And yes, DH's REALLY want us on the diet!!!!