NCGS is Real!

[JLH]

http://www.medicaldaily.com/gluten-sens ... out-323718

[Lilja]

Hi all,

One of the university hospitals where I live have an add in this month's Celiac Magazine, inviting volunteers to partcipate in a research project called "Gluten- and FODMAP provocation in Non Celiac Gluten Sensitivity".

Candidates who suspect they suffer from NCGS and have been on a gluten free diet for more than 6 months, and feel they have benefited from the diet, are invited to participate. Candidates who have been diagnozed with Celiac cannont attend.

The goal is to increase the knowledge about NCGS, and to find out what importance gluten and short chained carbohydrates have in NCGS, in order to enhance the assessment and the treatment of NCGS.

The candidates will undergo a lot of tests (gastroscopy, blood- and stool tests), during the test and will be exposed to gluten-rich energy bars, a FODMAP diet and placebo for 3 weeks. The test will last for a period of 2 months. The person who leads the research project is the head of the Gastrology Dept at the University Hospital.

I wonder if I should participate? I don't have Celiac, but I certainly have improved my MC through the gluten-free diet.

One of the things that worries me, are the gastroscopy tests, which might irritate the intestines.

What do you think? Too risky?

It's for a good cause, though

Lilia

[tex]

Apparently a lot of researchers don't believe the results that were published from the Australian study that concluded that NCGS does not exist.

Lilia,

Usually, people who have an existing IBD are disqualified from participating in such studies, but that will depend on the qualification rules that they have decided to use for the trial. The gastroscopy procedures (probably to be done twice, both before and after the study) would be enough to keep me from volunteering.

Tex

[Patricia]

Hi Lilia,

I admire your willingness to participate for a good cause but I would be REALLY worried about the gluten-rich energy bars. Exposing yourself to that might very well trigger a flare and make you suffer.

I had a gastroscopy last year and it wasn't bad at all. At least I can't remember anything thanks to the anesthesiologist. It did not irritate my intestines, but the gluten certainly would.

Love, Patricia

[Lilja]

Apparently a lot of researchers don't believe the results that were published from the Australian study that concluded that NCGS does not exist.

Lilia,

Usually, people who have an existing IBD are disqualified from participating in such studies, but that will depend on the qualification rules that they have decided to use for the trial. The gastroscopy procedures (probably to be done twice, both before and after the study) would be enough to keep me from volunteering.

Tex

Tex:
You are right, but are'nt all countries a bit like "Not invented here" (= we have to do it our own way, in order to trust the result) ?

And what if they should use another methodology and find that NGCS does exist?


Patricia:
Yes, the colonoscopy could cause a flare. I have contacted them by email with some questions. One of my intentions to participate is that I might have a much broader insight and understanding of my own disease, since my GP is more or less clueless. My diagnose is 5 years old, and maybe the tests reveal things we didn't know.

Lilia

[Patricia]

Patricia:
Yes, the colonoscopy could cause a flare. I have contacted them by email with some questions. One of my intentions to participate is that I might have a much broader insight and understanding of my own disease, since my GP is more or less clueless. My diagnose is 5 years old, and maybe the tests reveal things we didn't know.

Lilia

Hi Lilia,

I agree, a colonoscopy (and the preparation for it) could cause a flare. But in your first post you did not write colonoscopy, you wrote gastroscopy. I had both tests last year. The gastroscopy is an endoscopic exam of your esophagus, stomach, and the first part of your small intestine. They can choose to take biopsies from the small intestine (to diagnose or rule out celiac disease). There is no special prep for the gastroscopy aside from showing up fasting (if I remember correctly it was no food after midnight).
So the question is, would the study involve gastroscopies or colonoscopies? And for how long would you have to eat gluten?
And yes, it would certainly be interesting to find out more about your disease and receive test results that you might not have received so far. And the physicians conducting the study will be highly specialized physicians unlike your GP. The consultations with them might be very helpful, for you and for them (as they will be able to learn from you as well).

Love, Patricia

[tex]

And what if they should use another methodology and find that NGCS does exist?

I must be missing something in the translation, because it sounds as though you do not believe that NCGS exists.

I'm afraid that you will be very disappointed if you join a study just to learn more about your disease/condition. Other members here have participated in various studies over the years, but if any of them learned anything from the studies that was actually helpful for their own disease/condition, I don't recall reading about it.

If you decide to join the study, and they accept you, I hope it all goes well.

Tex

[Lilja]

Tex,
Of course I believe that NCGS exist, I thought you agreed with the Australian research, but I couldn't understand that either. A language misunderstanding, or an irony I missed (I always do, especially when it is written, and in a different language).

Patricia,
I know the difference between colonoscopy and gastroscopy, the study involves gastroscopy, I mix those two. Gastroscopy is harmless, of course.

Ok, then I only have to fear the gluten bars. I will have to think thoroughly.

Lilia