Grrr! I Hate Doctors!

[vthuskies]

After waiting 6 weeks to get in to see a new GI, I finally had my appt yesterday. I saw another GI in June (symptoms started in April) and he just said I have IBS, take Imodium, and move on. Since then I have become lactose intolerant and B12 deficient. I had the Enterolab tests run and they were positive for gluten sensitivity (see my siggy for more info about that).

So I went for my appt really excited about meeting the new GI (I found his name on the local celiac support group website). I met with the resident doctor first who was very thorough about getting my history, symptoms, etc. I showed him my Enterolab results, which he wrote down. He listened to my grumbly stomach, etc. He seemed surprised that I hadn't had an endoscopy already? Then I waited 20 mins alone in the room while he consulted with the GI. So the GI comes in and immediately says that he agrees with the first doc, that I have IBS or a "functional bowel problem" that may never resolve and I may have chronic D for the rest of my life. WTF????? I said that was not an acceptable diagnosis and I refuse to live like that. I didn't have an infection/bug when my symptoms started, it was just D and stomach aches after I ate. He also totally dismissed the Enterolab results saying that you can't find antibodies in the stool and he had no idea what they were actually testing.

I think to humor me (or to spite me), he recommended doing an endoscopy AND colonoscopy They also reran the celiac panel since my GP didn't do the complete test. Also tested my thyroid. The Endo and Colo are set for the 27th. I'm terrified and wondering if it's worth it all. But I'm one of those people that will doubt the Enterolab results if I don't do these tests and would be more likely to go off a gluten-free diet if I didn't have an official diagnosis.

Help! I'm scared and frustrated. Why do doctors have to act like they know your body better than you do? He was so resistant to the idea of celiac. He said that a lot of people have those symtpoms, blah, blah, blah. Why can't I find a nice doctor who will take me seriously?????

[lizard00]

My first GI was like that. He wouldn't even order an endo, though. Which, at that point, I would've done. He told me that I had cut ALL carbs out of my diet and what did I expect to happen? I think he thought that I was some stupid girl who was trying to lose weight and did some crazy diet that screwed my insides up. Even after I told him twice about my family history, AND that I ate grains and was probably eating better than I ever have. Oh yeah, and to even have Celiac, you have to have the gene for it. (Insinuating that I didn't... jokes on him!)

Moral of the story: He was my FIRST GI, which means I moved on. The second guy I went to my GP gave me his name, and their office even made the appointment. He was totally on board the second I walked in. Didn't make me do any further testing, except the gene test.

IMO, and many others here, my doc and I are teammates. And my docs feel the same way. If you think this guy is a good GI, then stick with him and do the testing. If you think he's fallen under the "Deity Complex", then ditch him and move on to another one. That being said, the first GI ordered a test, and stuck it out for the purpose of the test. Thankfully he sent me the results in the mail and I never had to see him again.

A lot of things could be seen in the endo, and if it were me, I would stick it out at least for the test, and then go from there. And then if your results come back positive, you have your answer. And see how he reacts and make your decision based on that.

[cat3883]

I really dont get some of these doctors. Studies show that 97% of the people that have celiac go undiagnosed. No wonder. Most doctors think we couldnt have it. Well for crying out loud they need to listen to their patients and run the doggone test. My family physician listens and he picked up on my symptoms. He ran the bloodwork and when it came back his office made an appointment for a GI. I met with him and he is just as wonderful as my family physician. I am very lucky. I have read on this forum how some have docs that dont take the time to listen. How sad. My GI ran the genetic test and I am positive for both genes. I told him I really dont feel bad but he says I do feel bad I just dont realize it because I have probably had this for many years. You need to find a GI that you connect to because this is a lifelong journey. You will need to keep seeing them the rest of your life even if it is once or twice a year. Good luck.

[debmidge]

So the GI comes in and immediately says that he agrees with the first doc, that I have IBS or a "functional bowel problem" that may never resolve and I may have chronic D for the rest of my life. WTF????? I said that was not an acceptable diagnosis and I refuse to live like that. I didn't have an infection/bug when my symptoms started, it was just D and stomach aches after I ate. He also totally dismissed the Enterolab results saying that you can't find antibodies in the stool and he had no idea what they were actually testing.

This sounds reasonable. GI is not going to commit himself until more tests are run. Please elaborate on :

" I didn't have an infection/bug when my symptoms started, it was just D and stomach aches after I ate. "

Is he saying that you did not have an infection/bug to "trigger" celiac OR is he saying something else?

I think to humor me (or to spite me), he recommended doing an endoscopy AND colonoscopy They also reran the celiac panel since my GP didn't do the complete test. Also tested my thyroid. The Endo and Colo are set for the 27th. I'm terrified and wondering if it's worth it all. But I'm one of those people that will doubt the Enterolab results if I don't do these tests and would be more likely to go off a gluten-free diet if I didn't have an official diagnosis.

A GI would be considered incompetent if he did not run endoscopy and colonoscopy - you probably need the endosocopy more than the colonoscopy but if you're over a certain age you need it anyway. The thyroid has to be tested because a "fast" one can cause diarrhea. I think it's worth it to do these tests and the GI

will have more information and perhaps be able to give you a better diagnosis. (I do not have celiac, my husband does - see his info below in my signature line, but I had terrible diarrhea in 2007 and it was from my gallbladder going bad and a mild case of IBS.

Help! I'm scared and frustrated. Why do doctors have to act like they know your body better than you do? He was so resistant to the idea of celiac. He said that a lot of people have those symtpoms, blah, blah, blah. Why can't I find a nice doctor who will take me seriously?????

See what the tests say...then judge the doctor

[vthuskies]

Thank you guys for your replies. I really needed to vent. Guess my expectation were too high after waiting that long to see someone.

" I didn't have an infection/bug when my symptoms started, it was just D and stomach aches after I ate. "

Is he saying that you did not have an infection/bug to "trigger" celiac OR is he saying something else?

He was saying that I probably had some sort of infection that lead to my symptoms and changed the way my bowel is functioning. He says that he doesn't think I have celiac and that my bowels are just not working correctly for some other reason and there's nothing they can really do about that.

I'm glad he reran the blood tests and that he's doing the endoscopy. But I'm really unsure about the colonoscopy. I know you don't need that for a celiac diagnosis. His rationale is that B12 is absorbed really far down in the small intestine, near the entrance to the large intestine, so he's going to see if he can see if that portion is inflamed. He said that the B12 deficiency is not a symptom of celiac, although pretty much all of the literature I've read lists it a a symptom. I really don't understand why he thinks I definitely don't have celiac!?!?!

[nora-n]

My daughter was quite deficient in B-12 (she was diagnosed around that time)

I did a quick-quck seardh on pubmed and this came up, there should be many more:

Open Original Shared Link

nora

[leadmeastray88]

He said that the B12 deficiency is not a symptom of celiac, although pretty much all of the literature I've read lists it a a symptom. I really don't understand why he thinks I definitely don't have celiac!?!?!

Yeah, don't believe that for a second.

Me being B12 deficient is what helped lead my GP to Celiac.

Don't be too hard on your gastro, like people here have said it's so hard to find a doctor who will actually listen nevermind actually run the tests - and he is running the tests for you so I think you should wait and see what happens. No you don't need a colonoscopy for a Celiac diagnosis but it'll definitely rule out other things.

If you think your doc really doesn't believe you and then you get a positive biopsy, then you can rub his face in it. But until then, you're VERY lucky you have a gastro who's doing this for you!

I know its frustrating but keep yourself optimistic and you will get better!

[MOOSEHEAD]

My doctor is Dr. Prince Shah (really.. no kidding) in Gilroy, Ca. After my third appointment he suspected Celiac. I did a genetic (just blood) test from Prometheus Labs in San Diego, that show i was 31 times more likely to have the disease than normal folks, even though my blood panel was negative. They claimed to me on the phone they are the only lab in the country that currently does that test. Of course my insurance will not cover the costs (1300 dollars) but they will allow you to make payments. He did an endoscopy/colonoscopy to confirm, found nothing, but recommended trying a gluten-free diet for a few weeks. I feel great, after only one week. So keep trying to find a new doctor. I think from the research I've done that the technology/ research done on gluten sensitivity and celiac disease hasn't caught up to alot of doctors yet. I got lucky. But any lab can send your blood to that lab. Hope this helps.

[lizard00]

My doctor is Dr. Prince Shah (really.. no kidding) in Gilroy, Ca. After my third appointment he suspected Celiac. I did a genetic (just blood) test from Prometheus Labs in San Diego, that show i was 31 times more likely to have the disease than normal folks, even though my blood panel was negative. They claimed to me on the phone they are the only lab in the country that currently does that test. Of course my insurance will not cover the costs (1300 dollars) but they will allow you to make payments. He did an endoscopy/colonoscopy to confirm, found nothing, but recommended trying a gluten-free diet for a few weeks. I feel great, after only one week. So keep trying to find a new doctor. I think from the research I've done that the technology/ research done on gluten sensitivity and celiac disease hasn't caught up to alot of doctors yet. I got lucky. But any lab can send your blood to that lab. Hope this helps.

Um... on a side note. Did your insurance flat out refuse to pay Prometheus? I am going back and forth with them right now for the test did they did in May. My insurance isn't refusing to pay (at this point), but I am getting bills from Prometheus now and there is NO claim history with my insurance from them. Not sure why they're dragging their feet in sending it over...

And yeah, that is not exactly the truth. Kimball does genetic testing, along with a few others.

[vthuskies]

Just wanted to post an update since it's been a couple of weeks since my endo and colonoscopy were done. The GI said he didn't find anything obvious, but he did take some biopsies (still waiting for the results).

I've been gluten-free since that day 10/27/08. Most of my gi symptoms went away within the first few days. I was still having D, but it was less severe. Now 2+ weeks into it, all of my gi symptoms are gone! The only lingering problem is my energy level. I'm forcing myself to exercise in hopes that it will help me improve. I'm also still getting B12 injections monthly. They will recheck my levels next month.

It's amazing what a difference going gluten-free has made! No more bloated tummy, gas, stomachaches, heartburn, it's all gone! I don't care that I don't have an "official" diagnosis. The Enterolab results and dietary response speak for themselves. I'm so happy to feel more like myself again.

[lizard00]

I'm so glad to hear you're feeling better.

It took me a few months before I felt like I got my energy back. I forced myself to exercise, too, hoping it would work. When I saw my GP a few months into it, and told her I still was feeling tired, we went through the whole exercising thing, and she told me that even though I couldn't tell a difference, if I hadn't been working out I would've felt 10X worse. So, stick with it. It'll pay off.

But somewhere around 6 months, I realized that I didn't need naps in the day anymore. That was quite a day!!