Entocort doesn't work

Annecham · Post by **Annecham** » Sun Oct 14, 2012 9:53 am

I'm new here. 51 yr old female. MC diagnosed 6 months ago. Entocort isn't working! I "go" at least 6 times in the morning. Settles down for the day. But then flares up at night. Considering GF diet. Also headaches, flu like feeling, no energy etc. this sucks. I am a runner who can barely motivate anymore! Any suggestions?

Deb · Post by **Deb** » Sun Oct 14, 2012 11:10 am

Hi and welcome Annecham, You will surely get a lot of information here but the number one factor we've found with MC is that we can't tolerate gluten. It's a lot easier than most of us thought it would be to eliminate it, especially when you start feeling better. Dairy and soy are also a problem for many of us but most start with the gluten. The "feeling like crap" syndrome also goes hand in hand with this disease and will also get better as you heal. Read as much on this forum as you can and if you want a comprehensive view on it all get Tex's book (he's our moderator here) with a link at the upper right of this page. Deb

Post by **tex** » Sun Oct 14, 2012 11:12 am

Hi Anne,

EDIT: I see that Deb posted while I was still writing, so please forgive me for echoing most of the information that she posted. I agree with her 100%.

Welcome to the board. Your symptoms and your pattern of bathroom trips is very similar to mine, before I changed my diet, except that I also had nausea on many days.

When drugs don't work, it's because some of the foods in our diet are generating inflammation faster than the anti-inflammatory drugs can suppress the inflammation. The only way to achieve remission (short of taking a powerful immune system suppressant), is to remove the offending foods from our diet. And since these foods generate an autoimmune reaction, we have to remove all traces of those foods from our diet, because most of us continue to react to even tiny amounts of them. All but a few of us are sensitive to gluten and all dairy products, and at least half of us are sensitive to soy and all legumes. Some have additional food sensitivities, such as eggs, or yeast.

You can definitely get your life back, if you are willing make the necessary changes in your diet. Again, welcome aboard, and please feel free to ask anything. Incidentally, few members read the information forums such as this one — you will get many more responses if you post in the forum at the following link:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=2

Tex

Annecham · Post by **Annecham** » Sun Oct 14, 2012 11:51 am

Thanks everyone. Another question...have any of you been checked for Celiac? I was but it didn't show positive. I know GF is recommended for that disease. Thanks!

Post by **tex** » Sun Oct 14, 2012 1:34 pm

Anne wrote:Another question...have any of you been checked for Celiac? I was but it didn't show positive.

Yes, and some of us have it, but except for those individuals who have fully-developed celiac disease, we always test negative to the celiac blood tests currently in use, because of their extremely low sensitivity. Those tests will only detect mature celiac disease. That's why the average length of time from the onset of symptoms until a celiac diagnosis is determined is 9.7 years in this country. The tests simply aren't sensitive enough to detect the type or the stage of gluten sensitivity that we have. A negative result on a celiac blood test definitely does not rule out gluten sensitivity, nor does it even rule out celiac disease. Believe it or not, for every celiac who is diagnosed, approximately 20 go undiagnosed, according to the latest research statistics. The medical community needs to get it's act together and come up with a much more reliable testing program than the one they are now endorsing (the blood tests).

The only lab test that will accurately and reliably detect non-celiac gluten sensitivity is the stool test offered by EnteroLab, in Dallas TX, so that's where most of us do our testing. Unfortunately, most GI specialists follow antiquated rules and they refuse to recognize the problem (it's no hide off their back), and they refuse to change their ways and endorse stool testing.

With microscopic colitis, until more doctors wake up and realize that the key to remission lies in diet changes, most patients have a choice of following their doctors' recommendations and learning to live with the symptoms, or doing what we do, and getting their life back.

Tex

Annecham · Post by **Annecham** » Sun Oct 14, 2012 5:36 pm

Thanks for such an informative answer!!wow, I've learned so much already. Now I need to learn how to eat GF!

DebE13 · Post by **DebE13** » Sat Aug 30, 2014 8:31 pm

I've been tested twice for celiac with negative results. I may not have it but I am definitely sensitive to gluten.

Post by **tex** » Sat Aug 30, 2014 8:42 pm

Deb,

FWIW, I have a hunch that I do have celiac disease, but my doctors never tested me before I started the diet, and now that I've been in remission for 10 years, I'm not about to do a gluten challenge just to verify it. I never want to be that sick again.

Tex

JLH · Post by **JLH** » Sat Aug 30, 2014 9:28 pm

http://www.webmd.com/diet/slideshow-gluten-free-diet

Entocort didn't work for me even when I gave up all my known intolerances.

Post by **tex** » Sat Aug 30, 2014 9:53 pm

Deb and Joan,

FYI, this thread is almost 2 years old.

Tex

DebE13 · Post by **DebE13** » Sun Aug 31, 2014 5:13 am

Tex, if you have been GF for that long would you still test positive if you did a gluten challenge? Or would the damage have to reach a certain threshold again? Either way, with all you've been through I wouldn't do it either. Confirmation is great but not at the cost of being that sick again.

Deb · Post by **Deb** » Sun Aug 31, 2014 5:20 am

Tex, do you think a person could have celiac without the celiac gene? The other Deb

Post by **tex** » Sun Aug 31, 2014 10:19 am

DebE wrote:Tex, if you have been GF for that long would you still test positive if you did a gluten challenge? Or would the damage have to reach a certain threshold again?

Well, I tested positive to anti-gliadin antibodies at EnteroLab a couple of years ago, when I suspected cross-contamination problems, and the result was relatively high (62), but of course that wouldn't be high enough to trigger a positive result on a classic celiac blood test, and that was due to a cross-contamination problem with my diet that has been corrected. Research shows that in order to reliably receive a positive result on a celiac blood test, a patient has to have at least a level of small intestinal damage equivalent to a Marsh 3 level. That's a lot of damage, because it requires significant villus atrophy. Lower levels of damage will not usually trigger a positive test result.

That's why an "official" gluten challenge requires a period of time during which at least a certain minimal level of gluten is ingested every day, in order to promote sufficient damage to trigger a positive test result. Normally, the equivalent of a couple of slices of bread are ingested for at least 6 weeks, but a few doctors who don't understand celiac disease, nor the testing procedure limitations, mistakenly recommend only a couple of weeks of gluten in the diet, and of course that usually results in a false negative test result. And some patients require up to 6 months of eating gluten before the damage is extensive enough to trigger a positive test result. So the theory behind the gluten challenge is very inexact science, and it's often arbitrarily administered by many doctors, so the whole concept is rather ridiculous in it's overall execution.

Because of the intestinal damage limitation, once a GF diet is begun, there is only a window of opportunity of a few weeks during which a positive celiac blood test can reliably be obtained, because antibodies in the blood fade away relatively quickly, and the blood tests are notoriously insensitive. As with the stool tests, if the antibody level is extremely high when the GF diet is begun, then a positive blood test result is possible for a longer period of time (possibly for as long as several months), but if starting antibody levels are lower, then the window of opportunity rapidly narrows.

With the EnteroLab stool tests, anti-gliadin antibodies can be reliably detected for at least a year after gluten is removed from the diet, and in many cases (with above average antibody levels to begin with), the antibodies can be detected for at least 2 years after gluten has been completely removed from the diet.

Tex

Post by **tex** » Sun Aug 31, 2014 10:32 am

Deb wrote:Tex, do you think a person could have celiac without the celiac gene?

Definitely. Even the GI docs at the Mayo will admit that it's possible to develop celiac disease in the absence of either of the 2 known common celiac genes (DQ2 and DQ8). It's considered rare, but it does happen. I'm assuming that you're referring to classic celiac disease, where not only are there detectable antibodies in the blood, but small intestinal biopsies show at least a Marsh 3 level of damage.

A few doctors have begun to diagnose celiac disease based only on positive serology (without even checking for intestinal damage), but they are still a small minority. Most doctors still require the "gold standard" of verified extensive villus damage.

Tex

Deb · Post by **Deb** » Sun Aug 31, 2014 4:53 pm

Thanks Tex!