I cant believe it !!

[Gabes-Apg]

Most of u Guy's are medicine Free.. Only diet..

When I was first Dx'd and found this forum, there were;
- quite a few people that still did not have full management of symptoms even with entocort,
- there were some that had more issues than benefit when taking entocort
- and some that were having secondary health issues (osteoporosis etc) from long term use.

Given my age (40) and the strict customs laws that would not allow overseas purchase. I was super motivated to use diet/lifestyle changes as the main management tool to minimise MC issues as a good long term affordable option.

over 5 years later, I have read, researched, discussed and learnt alot about inflammation, cell health, methylation cycle etc - the 'Root Causes' of most if not all of my health issues
(Pyrrole, reduced kidney function, hormone issues, hypertension, AI skin condition, ligament issues, histamine/mast cell, hiatus hernia, fibromyalgia, dental issues, depression and anxiety )
Steroids will not help these issues, the right eating and lifestyle plan and fixing vital nutrient deficiencies/imbalances is fixing these issues..
in some aspects, MC is a symptom per say, it is not the root cause of health issues
I am on medication for some of the other issues, which I am now starting to being able to taper and reduce, as my diet and supplement protocol is correcting nutrient deficiencies/imbalances.

the current health system is not set up to support people with multiple complex issues. it does not look for root cause, nor does it encourage pro-active monitoring of things like Vit D3 levels etc. I have taken an approach of 'informed self care'

[tex]

When u do a calprotectin test to value the inflammation?.. What is ur result then?

I've never had a calprotectin test, either. That test is not commonly ordered in this country.

in some aspects, MC is a symptom per say, it is not the root cause of health issues

MC is the result of health issues and it's not even a real disease — it's a collection of symptoms caused by certain untreated health issues.

the current health system is not set up to support people with multiple complex issues. it does not look for root cause, nor does it encourage pro-active monitoring of things like Vit D3 levels etc. I have taken an approach of 'informed self care'

I totally agree with that. In the U. S. at least, despite claims to the contrary, we don't actually have a health care system. We have a "health repair" system. And IMO, the reason for that is because the government and the medical profession and the American public, all bow down and allow the insurance industry to dictate virtually all of the details of the so-called "health care" system. The insurance industry would rather pay $100,000 for surgery than to pay $100 for tests that could improve health and prevent the eventual need for surgery.

Tex

[Tor]

Regarding a provocation diet for Non Celiac Gluten Sensitivity (you react to gluten as if you were a celiac, but it can't be seen in biopsies nor in blood tests). I tried 18 months ago to get this test done, but I was told that no hospital offer this test anymore (blind food provocation, done in hospitals). They are expensive and timeconsuming. I follow the chat ("Nettprat") on NCF's homepage where professor Trond S. Halstensen has stated that it is nearly impossible to get the test done nowadays.

I would love to hear if you know of an institution offering the test.

I don't know anywhere to do a blinded NCGS test either, but reimbursement for extra costs don't depend on it beeing blinded in Norway. It is sufficient to do a provocation test under supervision of a GI specialist. The reimbursement must be re-evaluated every 3rd year, but repeated provocation test is not necessary. There are no specific guidelines as to how the test should be performed. My source is mainly Knut Lundin: http://gastroenterologen.no/2015/04/ikk ... sitivitet/

Reimbursement is one thing, but both my GI specialist and myself want to gather more information. The blood tests, family history and autoimmune diseases clearly points to gluten, but my gut reactions are much more explicit when it comes to dairy and coffee.

[dfpowell]

I had a calprotein test when I did a Digestive Stool Analysis with Genova, through my integrative MD. My result was 36 and anything under 50 is considered negative. I was not in remission from MC at the time of the test, I had active symptoms.

Therefore, for me the cal protein test did not predict MC or inflammation.

[Tor]

I had a calprotein test when I did a Digestive Stool Analysis with Genova, through my integrative MD. My result was 36 and anything under 50 is considered negative. I was not in remission from MC at the time of the test, I had active symptoms.

Therefore, for me the cal protein test did not predict MC or inflammation.

The medical consensus is that it is of little value in diagnosing MC. There are a lot of false negatives: http://journals.lww.com/eurojgh/Abstrac ... _in.9.aspx

I think calprotectin has been shown to be much more useful predicting classic IBD - and ruling out IBS. Actually my GI specialist wrote his PhD about calprotectin and it's use in classic IBD. He took two tests of me during his asessment two years ago. Both were between 100 and 200: Too low for IBD, too high for IBS.

[Lilja]

Regarding a provocation diet for Non Celiac Gluten Sensitivity (you react to gluten as if you were a celiac, but it can't be seen in biopsies nor in blood tests). I tried 18 months ago to get this test done, but I was told that no hospital offer this test anymore (blind food provocation, done in hospitals). They are expensive and timeconsuming. I follow the chat ("Nettprat") on NCF's homepage where professor Trond S. Halstensen has stated that it is nearly impossible to get the test done nowadays.

I would love to hear if you know of an institution offering the test.

I don't know anywhere to do a blinded NCGS test either, but reimbursement for extra costs don't depend on it beeing blinded in Norway. It is sufficient to do a provocation test under supervision of a GI specialist. The reimbursement must be re-evaluated every 3rd year, but repeated provocation test is not necessary. There are no specific guidelines as to how the test should be performed. My source is mainly Knut Lundin: http://gastroenterologen.no/2015/04/ikk ... sitivitet/

Reimbursement is one thing, but both my GI specialist and myself want to gather more information. The blood tests, family history and autoimmune diseases clearly points to gluten, but my gut reactions are much more explicit when it comes to dairy and coffee.

Thank you Tor, that's good news.

Lilia