Went to new GI doc yesterday

[terre]

Here's the recap:

I first saw nurse practitioner and discussed what I should have been discussing with doctor. I was in that little waiting room for 2 hrs. and saw the doc approx. 15 minutes.

When he did come in, he said he was so glad I was an active participant and had done so much research.....thank you PP! This was before he ever spoke to me, so I guess NP clued him in.

He asked me if I had taken PPI's, antibiotics, NSAIDs, etc. before onset. Answer: No.

He said he wanted me to switch to Uceris (budesonide that treats the whole colon due to special coating?). Then he said he would give me samples....I found out later, the samples where to cover me while they are seeing if they can get the insurance company to pay on them. If insurance won't cover, the cost is usually around $800 per month....no way! I can't afford that, so I'm not sure I even want to try them. I'm taking 6mg Entocort (budesonide) and he gave me samples of 9mg Uceris.

He said he wants me to check out the FODMAP diet.

He wants me to have an Endoscopy to check for Celiac.....I'm the one that brought up the fact that I'm not eating gluten, so no matter what, the test would be negative (so much for him being glad I knew so much). He paused and then said to start eating gluten and they would schedule the test for 2 to 4 weeks. "IF" I do the test I would want it to be at least 4 weeks.

He saw where I was tested for C-diff in 2013 (negative) and said he wants a stool sample to check for Giardia, Ova and parasite examination. Then he wants a blood sample for Celiac disease antibody panel.

I told him I would like to get my weight to level off. He asked what I weighed and I told him.....he said "That's about right isn't it?" I was floored, I haven't weighed this little in 40 years or more. I have no fat reserves, just loose ugly skin....I have the body of an 80 year old (and I'm going to turn 60 in a few days)!

I said he spent about 15 minutes with me. I forgot to say that when he came into the room, he said he was sorry for my wait....said he liked to spend time with his patients and that I would get the same consideration. You could tell when he was ready to go....he kept rising up, but then I would have another question and he would sit back down.

As you can tell, I'm not totally thrilled with the appt. The only thing that made sense was the statement he made that we should check to see if there some other problem in addition to MC....which I'm sure there could be....anything is possible.

Could anyone weigh in.....I truly need your input, as I don't know what to do.

Thank you,
Terre

PS: Oh yeah, I gave him a copy of the report from the 2013 colonoscopy. He said he would love to have a look at the slides, because my report listed both CC and LC and he thinks it's one or the other, not both. I asked how many people he sees with MC and he said it's funny I asked because in the last month he's seen 4 cases.....like that was unusual. He said they don't have a specific med for this because so few people have it and it's not a priority.

[tex]

Uceris (budesonide that treats the whole colon due to special coating?)

Actually Uceris is targeted at UC. So unless I'm misinterpreting how it works, Uceris does not become activated until it is roughly half-way or more through the colon. It's benefit is minimal side effects because it cannot become activated in the small intestine (Entocort is activated in the ileum). That said, it still seems to show good benefits for MC patients. Why . . . I have no idea, because most MC patients show active inflammation in their terminal ileum, at least.

If you have been faithfully following a GF diet for a year or more, it will probably take from 4–6 months or longer for you to develop enough damage to the villi of your small intestine to show positive results on the crude celiac screening tests that are available. Some patients require a year or more. They develop clinical symptoms very early on in the challenge, but damage is slow to accumulate, so it takes forever and a day to get to the point at which a test result will become negative. They can suffer for a year, and still receive a false negative test result. Most physicians seem oblivious to that fact, and they don't seem concerned about all the suffering that patients have to go through in order to get a celiac diagnosis.

And most celiacs will not show a positive blood test result unless they have enough damage to qualify for a Marsh III level of damage, and anything less than a Marsh III level of small intestinal damage will not qualify for an official diagnosis of celiac disease. If you've been following a GF diet for a year or more, your chances of meeting those criteria in 4 weeks are mighty close to zero, IMO. However, if you have only been on a GF diet for a couple of months, then it's possible that a 4-week challenge might be sufficient (but remember that in most cases it is not).

Other than that, your new doc seems to be on the ball.

Tex

[Gabes-Apg]

mmmm I am wondering what is gained by trying to confirm the celiac?
if you are having symptoms, and havent been eating gluten for a while - what is achieved

my next thought - there are digestion issues in addition to MC that are not traceable by colonscopy etc
do some research on H-Pylori, SIBO . these are issues that mainstream are not pro-active about..

[TaiaK]

Terre

For what it's worth, last year around this time, my GI prescribed Budesonide and told me the cost may be prohibitive and it was-so the office suggested using a compound pharmacy locally and they were instrumental in helping me out. Cost was anywhere from $80-$110/ month. Funny thing is I got a letter from my insurance company saying they would not pay since it was a compounding pharmacy-I think that was the reasoning. Anyway, the pharmacist put an acid resistant coating on the capsule and said it was a delayed release. The other thing is they can't use the same dosing so instead of the 9 mg, 6 mg, 3 mg I had like 10mg, 7 mg, 5 mg, 2.5 or something like that. It was a nice alternative and they deliver via mail also-not sure about state lines and all that but you probably have something similar where you are.

As for celiac testing via endoscopy-I had it done with my colonoscopy and of course it was negative. I had declined the blood test previously. After genetic testing I find out I have 2 copies of a main celiac gene and came up positive on Enterolab for gluten so that is loud and clear for me. I never in a million years would have expected the gene part or any of this MC fiasco. I personally would skip the endoscopy.

Final note-sorry about your wait at the Dr. That is a pet peeve of mine for sure!

Taia

[terre]

Thank you all for posting! Tex, are you in agreement that you can't have both CC and LC?

That said, it still seems to show good benefits for MC patients.

Tex, were you referring to Entocort or Uceris?

I have been trying to be very diligent since January, there have been VERY few times that I have eaten something I shouldn't have. That is why I think that the Endoscopy will be negative unless I start eating gluten on purpose.

If y'all were in my shoes, is there any of the testing you would have done? I think we've ruled out blood work and endoscopy for Celiac....so that leaves stool culture for ova and parasite examination.

I still have the weight loss factor and the decision about Uceris.

BTW, how do you tell a doctor that you don't want to do certain testing? I never want to burn bridges.

Thanks,
Terre

[tex]

Thank you all for posting! Tex, are you in agreement that you can't have both CC and LC?

Everyone who has CC has LC, but not the other way around. IOW, the diagnostic criterion for CC is thickened collagen bands in the lamina propria of the mucosa of the colon. LC patients do not have any significant thickening of their collagen bands. But both types have increased lymphocyte infiltration into the lamina propria, which just happens to be the diagnostic criterion for LC.

Tex, were you referring to Entocort or Uceris?

Uceris. But both forms of budesonide show good benefits for MC patients.

BTW, how do you tell a doctor that you don't want to do certain testing? I never want to burn bridges.

Good question. The cleanout can be pretty hard on many of us. And depending on your insurance, it may be an expense you don't need at the moment (possibly due to other obligations ). Or maybe you would like to see if the diet is going to bring remission now that you have already invested several months into it. Doing a gluten challenge would require you to start over after the test. Maybe others can think of better excuses.

I agree, it's never a good idea to burn bridges unless a doctor is so bad that he or she is dangerous to be around.

Tex

[terre]

Thanks for your input. I took your book into the doctor's visit with me, but the doc never saw it, only the NP.....that may be the reason he made the statement about my research and being an active participant.

Thanks for all you do and for all the others that help!

Terre

[brandy]

Hi Terre,

It sounds like he is a decent person. Wait time at my GI doc #2 is typically several hours. She has patients that travel 4 or more hours from south Florida so she spends whatever time she needs to with each patient.

I can't remember your specific history but did you get a celiac test in 2013? Most of us test negative for celiac. A small percent test positive.

Not sure but of more value might be the celiac gene test. I can't remember the details put certain combinations of genes makes for more food sensitivities and at least you would know the severity of your personal situation.

It sounds like the NP kind of goes to bat for you. Perhaps at your next routine appointment advise the NP that you are still GF and in the 4 weeks that have passed you've seen more improvement and you are frightened of eating gluten and going backwards to the WD of 10 times per day, nocturnal D etc. Sometimes the tone you take means a lot in these kind of conversations. I'm not sure but I think there may be some studies out there that most of us test negative to celiac but respond to GF diet.

[terre]

Thanks for your post Brandy. I have not had a celiac test, but I have a gut feeling that it would come back negative. Not knowing a lot about celiac, I would think gluten would make a person physically sick (and not just WD) if they had celiac and consumed gluten.

I'm sure part of the problem is that I need to get to know the new doc and how the office operates. My next appt. is for the Endoscopy after I have eaten gluten for a month, so I may need to cancel that appt. and just schedule an office visit to talk to the doctor in person.

My husband has walked out of an appt. where they have left him in a small room. First he is impatient, second kind of claustrophobic, and third he feels like his time is important as he has taken time away from his job. Now, mind you if they checked on him to give him a status update or told him there had been an emergency, he would totally understand.

The doc was nice and I was glad he showed knowledge of MC. My first GI told me to eat plenty of fiber and even take a fiber supplement.....you know what that did to me! He did want me to take Entocort, but I wasn't ready for meds right off the bat. I was clueless at the time and went the fiber route. Then I found this forum....thank goodness!

Terre