GI appointment tomorrow...

[Courtney]

Hi all,

I haven't had time to post as much as I'd like to in the last week or so, but I've been keeping up and reading most of your posts, and I want you all to know how much I appreciate the effort you put into this family. If it weren't for this board, I think I would have given up hope when the Entocort didn't work, bc my GI presented it as the only option. Thank you for sharing your strength, humor, and inspiration.

I have a GI appointment tomorrow afternoon, and I think I am going to tell him I want to quit the Entocort. I've been on 9mg for 8 weeks, and I haven't seen any improvement. Maybe I'm one of those for whom it doesn't work? Tex, I've seen your posts saying you can increase the dosage for a short time, but I don't like being on steroids anyway, and I'm afraid to increase the dosage. I've had only mild side effects, but the fatigue has been pretty bad. Course, that could be because I average about 6 hours of sleep a night with the D and the pain.

So, wish me luck as I go to do battle with the medical establishment. I hope to be posting more often soon, as I have time. Hopefully, work will slow down a bit soon.

Courtney

[JLH]

Good luck. I've gotten much more feisty with my docs in my old age but they are really ticking me off no end.

Thanks for helping me keep my resolve not to go on Entocort, yet. I'm plugging away on the GF, CF and SF diet and praying there is no more to add. I have to test eggs and corn after this weekend.

We are co-hosts for our sailing club regatta party. I hope I can make it. The theme is Troll 2 AKA the best worst movie and it is. One of our members was in it. You can find it on You Tube. We have a group of college students doing the decorations for a class project so that should be great.

[tex]

Hi Courtney,

I have to admit that I agree that after 8 weeks, you should be seeing results. I've been trying to think of an example where someone finally achieved remission after staying on it for a longer period of time. I think there may be one or two, but I'm not sure of the details. Typically, it works within about 10 days to two weeks. As for the fatigue, remember that until the symptoms are controlled, MC can cause anywhere from mild to extreme fatigue. If the D and pain are still keeping you awake at night, though, that doesn't sound as though the budesonide is doing much, (if anything), to control the inflammation.

I do wish you the best of luck with your appointment. Do you have a plan in mind, (to replace the Entocort), or are you hoping that your GI doc has a plan B?

Tex

[Courtney]

Well, I saw my GI today, and I just can't figure him out. He was very nice at my first appointment, kinda cranky after my colonoscopy (when I demanded he actually speak to me about the surgery, as I had been promised), very patient in explaining all the results to me on the phone, okay at my follow-up, but today...

Today, he acted like it was somehow my fault that the Entocort hadn't worked. I even told him that I'd be willing to try it a little longer, but he agreed that I should have seen results pretty quickly. He actually acted concerned that I'd lost weight (I'm 5'5" and 112 pounds, not quite skeletal, but certainly very thin), and he had me jump on the table so he could poke and prod at my tummy, which was very tender, although I hadn't noticed that the pain was there even when it wasn't actively hurting, i.e. without poking at it.

When I tried to tell him that I'd discovered some information from this site, he totally blew it off. He doesn't seem to really know much about celiac or MC, because if he read even one book, he would see that some researchers have drawn a connection, and that it's actually fairly common to have both. I suspect the connection is in the gluten. He thinks food intolerances are completely bogus, except for the gluten sensitivity in celiac. I mentioned that many members had said it took several months, if not a year, GF, to go into remission, and he said that was crazy and it should be a matter of weeks.

So, he wants to call a couple of doctors he interned with at the Mayo clinic and see what they think, because he's "academically interested" in me bc I have celiac and MC. I didn't have the heart to tell him a bunch of other researchers had gotten there first, and I'm really not that interesting. He mentioned redoing the tests for Gluten antibodies to see if they showed I was still ingesting gluten. I had a really hard time with the bloodwork this summer, though. (I mean a really hard time. Over the course of two days, I was "stuck" 26 times all over my forearms bc my blood wouldn't come out even when they managed to get the needle into a vein. Is that a symptom? I have really low blood pressure.) So I don't want to go through that again. I'm thinking my best course of treatment may be to take matters into my own hands and do the Enterolab tests and try to treat myself that way.

Ah, well. It is pouring rain here, so I'm going to curl up and grade papers and try not to take the ire out on my students.

Courtney

[Courtney]

Sorry, I have to reply to my own post just to vent some more. My GI appt. has me really down. It just seems like I have enough to deal with with MC and celiac and hypothyroid, etc., without having to deal with jackass doctors as well. Seriously, where do they come off thinking that they have the right to treat people like crap? If it were just an isolated incident, I would shake it off, but when so many people have the same experiences with so many different doctors, it becomes clear that there's a major issue going on here. I know that doctors have problems, too, in that they are overbooked and overworked. But guess what? So is most everyone! And most of us are still required to treat the people we work with and for with common courtesy! Letters after your name do not give you the right to be mean, snide, or short with people, or to act like you matter and they don't. I have zero respect for doctors at this point, because they've lost it. And as for how "smart" they are...half the people in my graduating class from college went on to med school because they couldn't think of anything else to do...if you have the time and the money, they'll just about let anyone do it. It doesn't really require much in the way of extra intelligence, especially for those who never bother to keep up with research. Oh, I know there are some very brilliant ones...but usually, it's the very brilliant ones who actually know how much they don't know and are open to learning more. It's the average, the mediocre, who get on their high horses and are so incredibly impressed with themselves that they can't see past their own egos. I am tired of being made to feel worthless by the way they treat me.

I just feel like I was stomped on today.

[katinchatt]

Courtney,

You have every right to feel stomped on, you were! Him saying he would talk w/buds at Mayo is a cop-out in my opinion. It may be in your best interest to find another Dr. Research and print out everything you can, then walk in with the attitude that you are doing them a favor by allowing them to treat you with such a rare and indeed special disease. Put all of your history with symptoms, meds, everything in writing and have them read it, before you begin to talk. That's exactly what I did when I had my first appt. with my GI. I wanted him to know up front what he was dealing with. He's not what I had hoped for, as far as a Dr., but ASAP was scheduled for tests and biopsys. Now that you have your findings, perhaps a new Dr. can look at the "whole picture" and take it from there.

Stay strong!
Kat

[tex]

Hi Courtney,

I just returned from a long board meeting, and upon reading your posts, I'm very sorry to learn about how you were treated. Obviously, you have been the unfortunate victim of yet another "jerk" GI doctor, who blames his patients, when his pathetically-limited treatment program, fails to provide any relief. Those guys seem to be a dime a dozen, in the field of GI medicine. I suppose if I were a "one-treatment-fits-all" kind of doc, I would be frustrated, too, and I would be looking for someone to hang the blame on. As Carrie puts it, guys like that have a deity complex. Apparently, he must still be using "training wheels", if he feels obligated to "consult" with some of his old intern buddies, just to come up with a "plan B" to use as a treatment option for MC.

Your assessment of his IQ is probably on target, too, because typically, when a "jerk" is "intellectually challenged", he immediately tries to throw up a smoke screen, in an attempt to cover up his own ignorance, instead of just owning up to it. It's no crime to not know everything there is to know about a subject, and usually, the more you learn about it, the more you realize how much you do not know about it, but jerks don't realize that, so they become very defensive, when they feel cornered.

I find it interesting that, as you so aptly pointed out, the "jerks" at the lower echelons of the intellectual ladder, are frequently so arrogant, and pretentious, while those who "burn to learn", and who constantly strive to learn more, are modest, and sometimes actually seem to be embarrassed by the fact that they still have so much more to learn.

It takes all kinds, I suppose, and every specialty has it's share of bad apples, but if I live to be a hundred, I doubt that I will ever understand why such a disproportionate number of jerks, decide to become GI docs. I can't give you any medical advice, but if I were in your shoes, I would drop that jerk like a hot potato. You know a heck of a lot more about treating MC than he does - why waste your time and money on him?

Tex

[G'ma Mary]

Courtney;

Do you know the difference between an MD and God? God doesn't think he's an MD!!!

In all seriousness, I agree that you need a new doc, and one who will work with you. When I decided I needed a new GP (long before the MC), I made an appointment for my annual physical and, when he entered the room and asked me what he could do for me, I informed him that I needed a routine physical and was also "doctor shopping". I told him if I liked him, I'd be back, if not I would pay his bill and get test results from him and keep looking. He asked what I was looking for in a dr and I said I wanted someone to "be on my team". I told him I did not want anyone who would tell me what to do, but rather someone who would help me understand what they believed I should do in any given situation, then would support me in the decision I make for the situation.

He is still my dr, and I wouldn't leave him for the world!

My GI kinda needed me to set him on a path that I could live with, but he has come around and I like him a lot now. He manages to treat me as an adult who can think and who can make decisions about my own health care. He was not in favor of my trying to GF diet, but now that I did it anyway and have results from it, he supports me in both that and any other suggestions I've made to him.

I think we just need to let docs know that we really can think, and that we expect them to allow us to do so. Take your health history to someone new and get off on the right foot with letting them know you are no dummy, then if they don't treat you as you deserve, look again. I'm not even real sure you need a GI now - you can do like you said and get the EnteroLab tests and have a good GP support you!

Keep us posted on how it goes. Also, vent on us at any time - we all understand!

Love you;
G'ma Mary[/i]

[Courtney]

Thanks guys! I appreciate the boost--I definitely needed it after that appointment. Mary, I love that joke. I'm sure I'll be telling it a lot. I am fortunate in having a really great GP who is always courteous and gives his patients credit for having some knowledge of their own bodies and for being able to figure out things like, "When I eat X, it makes me sick." What I think is completely nuts is that in one breath this doc tells me he doesn't know much about MC, and in the next breath he tells me that a pretty large sampling of people who have it (i.e. members of this board) can't possibly know what makes it better.

I think I am going to try the Enterolab testing. I'm not sure what tests I need to order, though, bc I already know I'm sensitive to gluten and dairy, and I had all the genetic tests from the Prometheus labs in July. I also noticed that there's not a test for corn. Does anyone know if there's a way to figure that out, short of trial and error?

Thanks again

Love,

Courtney

[G'ma Mary]

Courtney;

Polly has been great at tweeking out those intolerances, but let me give it a try.

Work very hard at eliminating all corn from your diet - that's a tough one since corn thickener, corn syrup, etc seems to be in everything! Stay off it for several days (a week or more if possible), then add one corn product - you may just want to eat corn! See what happens. If you don't have a reaction right away, eat it every day or every other day and see if large amounts might be a problem.

That's the most difficult way to discover an intolerance, but it will work!

Good luck with working this out.

G'ma Mary

[tex]

What I think is completely nuts is that in one breath this doc tells me he doesn't know much about MC, and in the next breath he tells me that a pretty large sampling of people who have it (i.e. members of this board) can't possibly know what makes it better.

People who make statements such as that, "know" that if a brilliant scholar such as he/she can't figure something out, no one else can, either.

If you already know that you're intolerant to gluten, lactose, and soy, that doesn't leave much of a reason to have any testing done at Enterolab. Lactose intolerance is almost a sure thing, anytime enteritis is present, (from any cause), but lactose intolerance is usually transient, and the production of lactase enzyme will resume, after your small intestine heals. If you are intolerant to casein, (the protein in milk), though, then that intolerance would probably be permanent. Most of us are casein intolerant, due to the fact that parts of the amino acids chain of casein are very similar to the gluten chain of 33 amino acids which has been identified as the troublesome fraction of gluten that is resistant to metabolism in the human GI tract, thus resulting in our immune systems mistakenly reacting to casein, also.

Therefore, you might be interested in learning whether or not you are casein intolerant, since if you're not, you might be able to drink lactose-free milk now, and regular milk, after your small intestine heals sufficiently. Of course, that could also be determined by testing yourself with lactose-free milk or ice cream, (Breyers makes lactose-free ice cream, for example).

As far as I am aware, the method for determining corn intolerance that G'ma Mary described, is the only game in town, for corn, (and most other foods, for that matter).

Would you mind telling us what your gene test results were? Of course Prometheus only tests for celiac genes, (unless they have made changes to their program, recently), but we could at least add that information to our "Gene test database", if you are willing to allow it.

Thanks,
Tex

[Courtney]

Sure thing, Tex. I hope you are better at interpreting these results than I am. (I'm sure you are.)

Alleles Detected: DQ2 heterodimer (HLA DQA1*05/DQB1*02)

DQ Genotype: DQ2 heterozygous

Were those the genetic tests you had in mind?

Courtney

[tex]

Yep, those are the rest results I was referring to. If I'm not mistaken, you and I have the same genes. I believe they translate to this:

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0201
Serologic equivalent: HLA-DQ 1,2 (Subtype 5,2). The first one is connected with a non-celiac gluten sensitivity, while the second one is the most common celiac gene.

Thanks.

Tex