First Trip To The Gastro Didn't Go So Well

[Seamuskitty]

I went to the local Gastroenterologist today.

I don't think the doctor and I hit it off. I will not mention his name in this post. I am sure he is a fine doctor for most gastro issues.

The doctor made me nervous. He seemed defensive. It was odd. He was an older man and kind of jumpy. In my opinion he just seemed uncomfortable with the Celiac scenario and with ME even thinking it was Celiac! Maybe I was defensive and impatient. Maybe I don't feel good because I ate gluten over the weekend in anticipation of being told I had to eat gluten in order to do a biopsy!

Maybe I am 10 steps ahead of this doctor and I just want him to catch up???

He said my blood test results were not clear enough (I posted them in another thread about "weakly postitive". I reminded him that I took the blood test while on a gluten-free diet.

He said that the antibodies could be caused by other things and that the only way to know if it was Celiac was to do a biopsy. He discounted the bloodwork quite a bit, making it seem like anyone's test would look like that. He said a false positive is possible.

I am not sure if it was me or not but it seemed like he wasn't listening to anything I said. I had to repeat that I got sick after eating wheat and only after eating wheat. And that I felt better when I didn't. When I repeated it, he said I hadn't made it clear.

He told me there was no such thing as a gluten-free diet. Gluten is in everything. Its impossible to get away from...I just looked at him funny when he said that...I had the same look when he said that most women of a certain age

are lactose intolerant. It was like a strange argument that reached an awkward point where he was sputtering and I just had to say, "What's the matter Dr.??" It was very very uncomfortable.

He did say the only way to diagnose definitively is to do an endoscopy after eating gluten for a certain amount of time. He told me to go eat some wheat for 10 days or so. He didn't tell me how much because he said it would be up to me how sick I wanted to make myself. He was sympathetic about me not making myself too sick. He did say that it wouldn't matter how much I ate since it was a sensitivity to the smallest amount. So the doctor is familiar with Celiac Disease.

I left there thinking that I didn't want this doctor treating me because of his bedside manor alone..or because of a personality conflict. I didn't think I was difficult. We just didn't communicate very well at all.

I am thinking of turning around and making another appointment with one of the doctors recommended by the local Celiac support group. I was hoping this doctor would be able to get the job done but I am just not sure. I just don't feel right. Does that make sense?

I am pretty aggravated. I feel like I want to go into a cave and hide until this is over. Unfortunately, I have to come out and get some help!

Sorry for the rant. I guess its just my turn to go through this familiar doctor "dance"...

I am going to call another doctor tomorrow. I do want to have a biopsy to be absolutely sure. I think I need that. So I ate two pieces of wheat toast a half hour ago. I started to itch 10 minutes after I ate it. Should be an interesting night. Yeehaw!

Julie

[OptimisticMom42]

Hi,

I'm so sorry you are feeling frustrated and upset by your experience with the dr. I'm just wondering what you had hoped for from this dr. Maybe defining your expectations with us will help you be calm during your next incounter with the medical world.

[mushroom]

I went to the local Gastroenterologist today.

I don't think the doctor and I hit it off. I will not mention his name in this post. I am sure he is a fine doctor for most gastro issues.

The doctor made me nervous. He seemed defensive. It was odd. He was an older man and kind of jumpy. In my opinion he just seemed uncomfortable with the Celiac scenario and with ME even thinking it was Celiac! Maybe I was defensive and impatient. Maybe I don't feel good because I ate gluten over the weekend in anticipation of being told I had to eat gluten in order to do a biopsy!

Maybe I am 10 steps ahead of this doctor and I just want him to catch up???

He said my blood test results were not clear enough (I posted them in another thread about "weakly postitive". I reminded him that I took the blood test while on a gluten-free diet.

He said that the antibodies could be caused by other things and that the only way to know if it was Celiac was to do a biopsy. He discounted the bloodwork quite a bit, making it seem like anyone's test would look like that. He said a false positive is possible.

I am not sure if it was me or not but it seemed like he wasn't listening to anything I said. I had to repeat that I got sick after eating wheat and only after eating wheat. And that I felt better when I didn't. When I repeated it, he said I hadn't made it clear.

He told me there was no such thing as a gluten-free diet. Gluten is in everything. Its impossible to get away from...I just looked at him funny when he said that...I had the same look when he said that most women of a certain age

are lactose intolerant. It was like a strange argument that reached an awkward point where he was sputtering and I just had to say, "What's the matter Dr.??" It was very very uncomfortable.

He did say the only way to diagnose definitively is to do an endoscopy after eating gluten for a certain amount of time. He told me to go eat some wheat for 10 days or so. He didn't tell me how much because he said it would be up to me how sick I wanted to make myself. He was sympathetic about me not making myself too sick. He did say that it wouldn't matter how much I ate since it was a sensitivity to the smallest amount. So the doctor is familiar with Celiac Disease.

I left there thinking that I didn't want this doctor treating me because of his bedside manor alone..or because of a personality conflict. I didn't think I was difficult. We just didn't communicate very well at all.

I am thinking of turning around and making another appointment with one of the doctors recommended by the local Celiac support group. I was hoping this doctor would be able to get the job done but I am just not sure. I just don't feel right. Does that make sense?

I am pretty aggravated. I feel like I want to go into a cave and hide until this is over. Unfortunately, I have to come out and get some help!

Sorry for the rant. I guess its just my turn to go through this familiar doctor "dance"...

I am going to call another doctor tomorrow. I do want to have a biopsy to be absolutely sure. I think I need that. So I ate two pieces of wheat toast a half hour ago. I started to itch 10 minutes after I ate it. Should be an interesting night. Yeehaw!

Julie

What an exssperating visit. No wonder you are aggravated. I myself would like to hit him over the head.

As I recall it was your tTG that was "weakly" positive. I am no expert, but it is my understanding that the tTG is quite specific for celiac. And it's like a pregnancy test--yes or no, not maybe. And there are many false negative biopsies if they don't choose the right places. And yeah, the gluten free diet is not a walk in the park, but tens of thousands of people have proven it can be done forevvins sake. As for women of "a certain age" being lactose intolerant, yeah, those that have gone on for years with undiagnosed celiac I suspect.

I certainly wouldn't want this man treating me I hope you get a good referral from your support group.

[Seamuskitty]

Hi,

I'm so sorry you are feeling frustrated and upset by your experience with the dr. I'm just wondering what you had hoped for from this dr. Maybe defining your expectations with us will help you be calm during your next incounter with the medical world.

Hi OptimisticMom42,

I was calm until the doctor began to sputter! I've never seen one do that before!!

My expectations were to have the doctor listen carefully to my symptoms, to be aware of the symptoms of Celiac Disease and to figure out if I have it. I expected him to hang tough and not to get flustered when I asked questions or questioned his interpretation of the blood test. I expected him to know that there actually is gluten-free food out that people eat every day because gluten makes people with Celiac Disease sick.

He simply did not listen to me when I spoke and he did not seem to be on the same page as doctors who have educated themselves about Celiac Disease or have done research.

I found myself in this doctor's office because I was referred to someone who is not prepared to help me. I will now go to someone who can.

I am the patient and I get to choose who I pay to treat me.

[Seamuskitty]

What an exssperating visit. No wonder you are aggravated. I myself would like to hit him over the head.

As I recall it was your tTG that was "weakly" positive. I am no expert, but it is my understanding that the tTG is quite specific for celiac. And it's like a pregnancy test--yes or no, not maybe. And there are many false negative biopsies if they don't choose the right places. And yeah, the gluten free diet is not a walk in the park, but tens of thousands of people have proven it can be done forevvins sake. As for women of "a certain age" being lactose intolerant, yeah, those that have gone on for years with undiagnosed celiac I suspect.

I certainly wouldn't want this man treating me I hope you get a good referral from your support group.

Thanks mushroom.

I am all set to call another doctor tomorrow. I think I will feel better taken care of if I go to someone that has been recommended by someone else. I was really hoping not to have to find a doctor in Charlotte. I was hoping to find one closer to where I live but there just isn't anyone here that anyone knows.

Yup I was annoyed and stunned. I have never had such an uncomfortable office visit ever. And I have gone to doctors for Meniere's which is an unusual condition. When I went to the local ENT doctor, he knew he couldn't treat it and had to refer me to an ENT that had experience with Meniere's. There are only a couple of doctors in NC who can properly diagnose and treat it. That process was not uncomfortable. No one's professional feelings were hurt because one doctor wasn't an expert! It was a simple logical process.

What happened to me today was just bizarre. I didn't want to hit him over the head but I kind of wanted to make him cry a little...it was going to be him or me, and it sure wasn't going to be ME!!

[psawyer]

Julie, what an awful experience. Find another doctor. There are good ones out there.

The good ones are the ones who will listen to you and discuss things with you. The bad ones don't listen and talk to/at you (one-way communication).

I have encountered both types, and while the good outnumber the bad (in my experience), there are still a lot of the latter. Your doctor works for you. Don't be afraid to leave and go elsewhere if you are unhappy with the care you are getting (and paying for).

[jerseyangel]

Hi Julie,

I'm sorry that happened to you. As Peter said, there are good doctors out there. I've had 3 gastros since this whole thing started (we've moved twice).

I had one like yours, and two fabulous ones. I think going with a doctor recommended to you by your support group is a good idea. You deserve a doctor who you can feel comfortable with, listens to you, and is willing to work with you to figure out exactly what's going on.

Best of luck

[lizard00]

I had a bad first gastro experience, too. And I would also agree that you should go to a doctor recommended by your celiac group. They are the ones that usually know better, and since almost all of us have been treated that way by at least one doc...

My doctor told me I had to have the gene to have celiac, and looked at me like I couldn't possibly have it. He ordered a CT Scan, and when I asked him why he ordered that instead of an EGD, he just kind of looked at me with that sh!t eating grin and gave me some crazy answer. I left there with a rx for a laxative and an anti-diarrheal...

I didn't go back to him and a couple of months later, my GP recommended another doc, and I absolutely love him. He told me how prevalent celiac is proving to be, and how it can cause so many things. I couldn't believe the difference in what he seemed to know vs the other one.

Keep looking, you'll find a good one!

[OptimisticMom42]

I'm finding that I have to call ahead to make sure that the first of your expectations (that they know what celiacs is) is met before going in. I found that the staff at my local emergency room don't know, don't care, and are to arrogant to listen.

The emergency room dr told my bipolar and very likely celiac (at that time) 17yr old son that "meds are not the answer, go home and stop acting like that" He was taken by ambulance to another hospital where he was admitted and stayed for a week.

Another time I called because the instructions on the box of exlax says if it doesn't work contact a dr. Two doses on top of Miralax didn't work........the nurse was so rude on the phone that I stayed home and waited it out.

I did speak with the administration of the hospital about the ER DR's statement to my son. They seemed to take it seriously and have not pushed me to pay the bill for that evening. I will pay it but in my own good time.

I should probably call and speak to the administration about celiacs and the need for educated staff but I'm afraid that to many complaints will make me look bad and they will just write me off as as an attention seeker.

[Foxfire62]

Blood panel could show false negative. It's not a 100% diagnosis. The only way is through biopsies of the duodenum, and for an official diagnosis, yes, you would need to be on a gluten diet for awhile.

If you're not comfortable with this person, do change doctors. One that is well versed in celiac disease is recommened. Lactose/soy intolerance does happen and supposedly can go away. I know that my lactose intolerance has improved since last year.

Good luck!

[Seamuskitty]

I went ahead and called another doctor, one that is hightly recommended by the local support group...

I will have to wait until mid-July. Plenty of time to eat gluten and make myself really sick...

Oh crap!