Frustration with Forgetful Dr.

jgivens · Post by **jgivens** » Wed Feb 06, 2013 7:29 pm

Maybe my gastroenterologist has brain fog! I am soooo irritated. When we talked last month, he was very interested in the Enterolab testing and we even talked about the IgA deficiency and the importance of testing that before I got the Enterolab testing. He wanted to wait a month to see if there was improvement and to read more about the Enterolab. At the time I wanted to say, "Look, time is precious to me and I really don't want to guess at what I can put in my mouth for another month--could we just do it now?!" I wish now that I had.

Last Friday I called the office and talked to his nurse about getting an order for the testing. Yesterday I heard back from him (thru her) that he wants to refer me to a food allergist! Has he forgotten everything we talked about?? When I asked the nurse about it, she said that she did not know or understand the testing, but she could ask him. Then, I wondered aloud if he was sending me to the food allergist to get the IgA deficiency test. I will hope that is the case, because the nurse thought that might be possible. So now, I have another wait til next Thursday to see the allergist. Thankfully, I know this guy and I know he is fairly commonsense and flexible. I will take Dr. Fine's essay with me and Tex's book.

AAARRRGGGHHH! Has anyone else seen a food allergist? I would assume that they are all about elimination diets. I am running out of patience with feeling bad a lot of the time. This is simply NOT fun, but I'm betting you all know that.

Post by **tex** » Wed Feb 06, 2013 10:33 pm

Jane,

Your PCP could have done the test for selective IgA deficiency. Allergists are all about blood tests and skin tests to track down allergens that cause IgE reactions. (They don't believe in stool tests). I could certainly be wrong, but unless your allergist is listed on our very short list of allergists familiar with mast cell issues associated with MC, he will almost surely waste your time and money. If he has received training at Brigham and Women's hospital, under he direction of Dr. Mariana Castells, then he definitely might be helpful.

Tex

jgivens · Post by **jgivens** » Thu Feb 07, 2013 6:13 am

You just confirmed everything I was afraid of, Tex! When I asked my internist to order the IgA test back at the beginning of Jan., he said he'd rather my gastroenterologist did it because he (the internist) would not understand the results!! I was too polite to say, "Well, I would and that's all that matters, isn't it?"

I may call the gastroenterologist's nurse back today and ask to either speak directly to the Dr or ask her to find out WHAT his reasoning is for the foot dragging and waste of my time. I do really wonder if these GI specialists had to experience the gut pain and the frustration of not knowing what is making us sick for even just a few days, if they'd continue to put barriers in our way of getting well! Why are they so reluctant to do what we need and want? Is it fear of loss of control and maybe learning something they didn't know? Are they afraid of the insurance company?

I have been a nurse for 35 years and am used to talking to Drs and suggesting things to stroke their egos and make them think they came up with the idea, but I am really, really tired of it!

mzh · Post by **mzh** » Thu Feb 07, 2013 8:20 am

I'm not a nurse, Jane, but I empathize with what you said 100%. So true. Incidentally, I had to educate my PCP on the difference between Vitamin D3 vs D2. And he had just been to a course on treating D deficiency. The "experts" are teaching docs so many wrong things, it's scary. Luckily, my PCP doesn't have a big ego; he really listened to what I told him.

Post by **tex** » Thu Feb 07, 2013 11:23 am

Jane,

That's my biggest beef about the attitudes of GI specialists in general — they just don't appear to be concerned about the comfort (or even certain health risks) of their patients. They basically tell their patients to go home and live in the bathroom for a month or 2 and learn to put up with the pain and discomfort, until the specialist gets around to deciding to devote a few minutes of their time to actually offering some help.

And your point about finessing an advantageous decision from a doctor by persuading them that they came up with the idea is right on target. If it isn't their idea, many of them will oppose it no matter how valuable it might be, because their ego is stronger than their compassion for their patients. And that is probably the root of the problem — their ego is stronger than their compassion for their patients.

Good luck, whatever you decide to do.

Tex

Leah · Post by **Leah** » Thu Feb 07, 2013 6:09 pm

So sorry Jane! I had to go through the blood allergy tests also, but luckily didn't have to wait to get it done ( even though I knew it was a waste of time). ANd the results were back quickly. Unfortunately, my insurance wouldn't pay for the Enterolab testing, so paid $700 just to find out I am IgA deficient! UGGGH.
I feel for you. This time be persistent and get the IgA test done quickly. It's just a blood test. hang in there

Leah

Carriagehouse · Post by **Carriagehouse** » Thu Feb 07, 2013 11:47 pm

Jane! I feel your frustration! I vote for speaking up. I went through blood allergy testing and saliva/urine testing at the request of my ND, to the tune of $500 not covered by insurance. AS SHE WAS GETTING READY TO GIVE ME THE RESULTS, she said, "I really wouldn't put too much weight on this. These tests can be very inaccurate." What? Then why did she recommend I do them? The allergy tests said I have issues with tuna (I don't) and the saliva tests appear to be a vehicle for her to sell me more supplements - they listed the precise supplement next to each result. I declined. I'm convinced that Enterolab and/or elimination diet are the way to go. I still need to get the selective IgA deficiency blood test, but I'm suffering doctor appointment overload right now ..... maybe next month. Good luck with your GI and let us know the outcome.

Leah · Post by **Leah** » Fri Feb 08, 2013 10:17 am

Leslie, will your doctor be willing to just order the IgA blood test without seeing him/her? Then you would just have to go get your blood drawn. ... Feeling any better today?

Leah

birdlover3 · Post by **birdlover3** » Fri Feb 08, 2013 11:53 am

Carriagehouse wrote:Jane! I feel your frustration! I vote for speaking up. I went through blood allergy testing and saliva/urine testing at the request of my ND, to the tune of $500 not covered by insurance. AS SHE WAS GETTING READY TO GIVE ME THE RESULTS, she said, "I really wouldn't put too much weight on this. These tests can be very inaccurate." What? Then why did she recommend I do them? The allergy tests said I have issues with tuna (I don't) and the saliva tests appear to be a vehicle for her to sell me more supplements - they listed the precise supplement next to each result. I declined. I'm convinced that Enterolab and/or elimination diet are the way to go. I still need to get the selective IgA deficiency blood test, but I'm suffering doctor appointment overload right now ..... maybe next month. Good luck with your GI and let us know the outcome.

My PCP ran the IgA test the other day. It appears it was sent to Mayo Clinic and they don't run that test at their lab. Still waiting to hear results.... hoping that it will show that I will be able to get my lab tests done at Enterolab. I'm like you...I speak up too and I believe in this day and age we really HAVE TO. We know our bodies well, and strong believer in if your doctor isn't listening, it's time to find another doctor.

jgivens · Post by **jgivens** » Fri Feb 08, 2013 1:42 pm

Well, I have decided that discretion is the better part of valor here and I will go see the allergist. I will NOT submit to any skin or blood tests. I was asked by the scheduler if I wanted to schedule skin tests or a consultation. I told her that a consultation was all I wanted. I will go and tell the doctor why I am there--to get the IgA ordered (because I suspect the GI specialist is too chickensh** to do it!) and that is all. I will be very frank about my frustrations (because I know that I can be with this particular guy--or at least that has been my previous experience with him) and I my thought is that he will not want to treat me any more than I want him to do any worthless diagnostic tests on me. Hopefully by the time I see him next week I will have a better attitude and will be able to get into my "can't we all just get along" persona.

When I have finished seeing him, I will call the gastroenterologist's office back and tell them what I want and if he is unwilling to order Enterolabs for me, I will simply pay out of pocket but not without a lot of resentment!

In the meantime, I gotta say this is just not any fun. I had such gut pain yesterday that I could not stand up straight for about an hour. I had to take my 8-month-old Lab puppy to her first in a second round of obedience classes with a new instructor and wondered if I would make it through. Fortunately the pain subsided. I was feeling better two weeks ago with less fatigue. I know that I must be eating something that is not agreeing with me because I am continuing with spasms and the pain in my right hip and lower back woke me up twice in the night. Tylenol helps a little. For the life of me, I cannot figure it out, no matter how much I peruse my food journal. I do know that the pain hits about 3 or 4 in the afternoon if it is going to and I have an evening of all manner of pain ahead of me.

I am wondering how you are Leslie? Did stopping the NSAID make a difference? Inquiring minds want to know!

Carriagehouse · Post by **Carriagehouse** » Fri Feb 08, 2013 2:27 pm

Thanks for asking, Leah and Jane! I stopped the Meloxicam and started taking an Immodium before I eat anything. The D hasn't subsided, but the urgency has which is a huge relief. Had my post-op appt this morning and saw camera shots of the inside of my knee! Very surreal. Got lots going on in there and she said I will undoubtedly have a knee replacement in my future. Hopefully not anytime soon. Just heading in to my physical therapy now.

Jane, I think you have the right attitude. No sense in kicking the door down on your way in...save your energy in case you need it on the way out ;) Best of luck with getting the tests you want, and hopefully covered by insurance, too!

birdlover3 · Post by **birdlover3** » Fri Feb 08, 2013 2:47 pm

Jane,
I like your attitude girl! You go!

Your primary care doc can order your IgA test...mine did as mentioned and am waiting for results. Since he is close to my house, it's so much easier to see him rather than going to my GI doc (and I don't know him as well).

I too had stomach pains yesterday but I was attributing it to the Budesonide. For the 2+ years I had "D" leading up to my diagnosis, never had any cramping or discomfort of any kind.

You were diagnosed about the same time I was and have the same CC. I too will get the Enterolab done even if it's out of my own pocket, however my primary doc is willing to work with me as I had mentioned before (marvelous man). If insurance covers it, I will be tickled pink.

Scared about the IgA results though. If I can't have the Enterolab tests done, will be back at square one almost it will seem to me. But as others have said 'it is what it is' and we'll get through it. Yesterday I wouldn't have been as positive but am today :)

Keep in touch with what is happening. I'm curious to see what you find out. Barb

Deb · Post by **Deb** » Fri Feb 08, 2013 3:50 pm

Leslie, to give you hope, I tore my ACL a few years ago. The first year was pretty rough but I honestly forget, now, which knee it was. Healing does happen. Deb

Post by **tex** » Fri Feb 08, 2013 5:32 pm

Jane,

Maybe your allergist will order the EnteroLab tests for you. If he would be willing, it could open up a whole new area of interest/expertise for him by introducing him to the correct way to test for food sensitivities that are not due to IgE reactions.

Tex

jgivens · Post by **jgivens** » Sat Feb 09, 2013 8:39 pm

We can only hope, Tex. I am going in well armed and try to be as charming as I can under the circumstances.

Thanks to all of you for the encouragement. I will let you know on Thursday after I have seen this allergist.