New Collogenous Patient

[lsedels]

Sounds like how most gastro appointments go. I don't know why they are so afraid of gluten free diets. Like we are going to starve without that poison. GF is easy and with a 15-20% comorbidity rate of MC and celiac, it doesn't seem such a stretch. If he had the disease he'd be gluten free, I guarantee it.

Sorry to rant Larry, but it makes me crazy. It's negligent and the patients suffer. I can understand their issues with Dr. Fine's going rogue, but they also ignore the work of doctors Marsh and Fasano who are leading gastroenterologists.


http://www.healthnowmedical.com/blog/20 ... diagnosis/

http://www.healthnowmedical.com/blog/20 ... y-useless/

I hear ya. I will look over these links ... thank you. And like I said, i'm still working on my Mom to do the testing.

[Sheila]

I was listening to The People's Pharmacy on NPR. They were speaking with Dr. Lowdog, a quite famous physician and naturopath. She said interns receive about ONE week of nutrition training during their entire education. There is no excuse for a Gastro specialist to be so ignorant about nutrition. Sad.

I hope your Mom will agree to Enterolab. You must be a bit exasperated.

Sheila W

[lsedels]

Sounds like how most gastro appointments go. I don't know why they are so afraid of gluten free diets. Like we are going to starve without that poison. GF is easy and with a 15-20% comorbidity rate of MC and celiac, it doesn't seem such a stretch. If he had the disease he'd be gluten free, I guarantee it.

Sorry to rant Larry, but it makes me crazy. It's negligent and the patients suffer. I can understand their issues with Dr. Fine's going rogue, but they also ignore the work of doctors Marsh and Fasano who are leading gastroenterologists.


http://www.healthnowmedical.com/blog/20 ... diagnosis/

http://www.healthnowmedical.com/blog/20 ... y-useless/

Has anyone used the Cyrex Lab tests and if so, how do they compare to Enterolab?

[UkuleleLady]

Larry, you and your mom are in my thoughts.

I guess I posted that link which mentions Cyrex. I have no idea how they compare but in my opinion (and I believe many are with me on this) a stool test is superior as that is where the antibodies to food reside.

I haven't done Cyrex but I did do a blood IgG and IgE test with Meridian labs (ELISA testing). My gluten, gliadin and wheat scores were all low, not even near to moderate range...same with dairy.

My Enterolab test on the other hand showed my fecal anti-gliadin to be 89 and normal is less than 10. My anti-casein was 44, normal is less than 10.

My results are here, they're pretty bad overall. But I am so grateful that I can still eat so many things, and that my health is good. I just ran two miles and then did push ups and pull ups. I could not have done that without changing my diet based on my enterolab results. It was so worth it.

http://www.perskyfarms.com/phpBB2/viewt ... highlight=

[lsedels]

Larry, you and your mom are in my thoughts.

I guess I posted that link which mentions Cyrex. I have no idea how they compare but in my opinion (and I believe many are with me on this) a stool test is superior as that is where the antibodies to food reside.

I haven't done Cyrex but I did do a blood IgG and IgE test with Meridian labs (ELISA testing). My gluten, gliadin and wheat scores were all low, not even near to moderate range...same with dairy.

My Enterolab test on the other hand showed my fecal anti-gliadin to be 89 and normal is less than 10. My anti-casein was 44, normal is less than 10.

My results are here, they're pretty bad overall. But I am so grateful that I can still eat so many things, and that my health is good. I just ran two miles and then did push ups and pull ups. I could not have done that without changing my diet based on my enterolab results. It was so worth it.

http://www.perskyfarms.com/phpBB2/viewt ... highlight=

Thank you.

I'm glad to hear that you have a plan that you have executed on and it is working well for you. I'm still pushing for the Enterolab testing. Now, if only I could run 2 miles!

[MBombardier]

And I am still working on her to go through with the Enterolab test ... I have a sense that she will eventually agree to do it (although the fact that they cannot ship the test directly to NY also arouses some suspicion) in spite of what the doctors say about it.

If I recall correctly, there is a NY state law that residents cannot use an out-of-state lab. I think MA has the same law.

[lsedels]

And I am still working on her to go through with the Enterolab test ... I have a sense that she will eventually agree to do it (although the fact that they cannot ship the test directly to NY also arouses some suspicion) in spite of what the doctors say about it.

If I recall correctly, there is a NY state law that residents cannot use an out-of-state lab. I think MA has the same law.

I was aware that Enterolab won't ship to NY, but I didn't realize this was due to a NYS law - I thought it was due to Enterolab not having a business permit in NY.

[lsedels]

So today I took my Mom to see a "big" gastroenterologist affiliated with Mt. Sinai in NYC. We reviewed the entire case. His recommendations were:

1. Continue on the Uceris 9mg for another 2 months and then taper very slowly ... first once every other day for a month, then once every 2 days for a month, then once every 3 days for a month. The reason for this, btw, is that the pharma that makes Uceris won't come out with either a smaller dosage or a scored pill. He kind of expressed some disgust at that.

2. If, during the period of taper down, symptoms return and it's not just once or twice, start on Enterocort 9mg and call his office for how long to stay on it and taper down instructions (which will be different, because Enterocort comes in a 3mg size and is much easier to taper). Also, Enterocort has effect on the entire Colon vs. Uceris which only has effect in the descending colon.

3. If at any point after tapering from Uceris or Enterocort (should that become necessary), a relapse occurs (only 50% likely according to him) ... he will try mesalamine. He also said to use Bismuth.

4. I'm sorry to say once again we heard "eat whatever you want". This comes from a learned specialist (who was used by at least one other person on this board with success) who has many years of experience at a teaching hospital. When I mentioned Enterolab, he also (of course) rejected the idea ... saying that labs like this are funded by companies in the business to make money on gluten free diets. I can't say I didn't expect this cynicism.

In addition, he actually stated that for someone my Mom's age, it could actually be harmful to her to be on any kind of restricted diet ... be it gluten-free or not because they find that elderly people who are on these types of diets don't do well ... they end up not getting the nutrition that they need at that age.

So ... once again ... I am working on her to see if she'll do the Enterolab test anyway. My logic to her is why not have the information available in case she needs it (should the meds not work). But the way I see it right now, it looks like we are headed down the path of a medication-based course. It's just really too bad that the concept of this being food related doesn't have more of an objective medical base. That would enable me to have more evidence to persuade her. He even admitted that it's autoimmune. I will continue to try to persuade her otherwise, but I suspect that only if she relapses and has no medication options ... will she "fully" consider food-based triggers.

Thanks again for everyone's help. I'll update with any further developments. And I will continue to try to persuade her to do the Enterolab test.