Interesting development

[Gabes-Apg]

I came across a published article today about Non-Coeliac Gluten intolerance (NCGI) being poorly diagnosed...

I could not get the full article as you have to be a 'health professional' to get access

AGW 2011, Brisbane: Initiation of a gluten free diet (GFD) without adequate exclusion of coeliac disease is “alarmingly” high, research suggests. “The importance of excluding coeliac disease cannot be underplayed,” Ms Jessica Biesiekierski from Monash University told the audience. Ms Biesiekierski previously led research co-authored by Professor Peter Gibson, proving the existence of non-coeliac gluten intolerance. The new study of about 130 patients who believed they had non-coeliac gluten intolerance (NCGI) found only 29% met the description for NCGI.

What is interesting is that only 9 months ago, one of the same researchers published the outcome that NCGI could exist. (excerpt below)

To go from 'could exist' and 9 months later say 29% of people in the study did have NCGI is a noteable development.....
admittedly their study was to prove that people think they are gluten intolerant may not be - so hence the 29% result, going forward, for the Gastro specialists to start acknowledging that NCGI exists is a milestone
(one small step for GI's, one giant leap for NCGI patients!!!!)

Am J Gastroenterol. 2011 Mar;106(3):508-14; quiz 515. Epub 2011 Jan 11.
Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial.
Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR.
SourceMonash University Department of Medicine and Gastroenterology, Box Hill Hospital, Box Hill, Victoria, Australia.

Abstract
OBJECTIVES: Despite increased prescription of a gluten-free diet for gastrointestinal symptoms in individuals who do not have celiac disease, there is minimal evidence that suggests that gluten is a trigger. The aims of this study were to determine whether gluten ingestion can induce symptoms in non-celiac individuals and to examine the mechanism.

METHODS: A double-blind, randomized, placebo-controlled rechallenge trial was undertaken in patients with irritable bowel syndrome in whom celiac disease was excluded and who were symptomatically controlled on a gluten-free diet. Participants received either gluten or placebo in the form of two bread slices plus one muffin per day with a gluten-free diet for up to 6 weeks. Symptoms were evaluated using a visual analog scale and markers of intestinal inflammation, injury, and immune activation were monitored.

RESULTS: A total of 34 patients (aged 29-59 years, 4 men) completed the study as per protocol. Overall, 56% had human leukocyte antigen (HLA)-DQ2 and/or HLA-DQ8. Adherence to diet and supplements was very high. Of 19 patients (68%) in the gluten group, 13 reported that symptoms were not adequately controlled compared with 6 of 15 (40%) on placebo (P=0.0001; generalized estimating equation). On a visual analog scale, patients were significantly worse with gluten within 1 week for overall symptoms (P=0.047), pain (P=0.016), bloating (P=0.031), satisfaction with stool consistency (P=0.024), and tiredness (P=0.001). Anti-gliadin antibodies were not induced. There were no significant changes in fecal lactoferrin, levels of celiac antibodies, highly sensitive C-reactive protein, or intestinal permeability. There were no differences in any end point in individuals with or without DQ2/DQ8.

CONCLUSIONS: "Non-celiac gluten intolerance" may exist, but no clues to the mechanism were elucidated

[Gabes-Apg]

An interview conducted in June 2011 with the same researcher (interview done in Finland)

10. What about gluten? You have shown in a recent trial that gluten really can cause gastrointestinal symptoms in IBS when FODMAP levels are controlled.

Definitely. We originally thought that fructans (FODMAPs) were the only ingredients in grains to trigger IBS symptoms in non-celiac patients. We were surprised that gluten really induced gut symptoms and fatigue seen in our double blinded, randomised, placebo controlled study. Now we are going to do even to re-examine this phenomenon with a new feeding trial (we provided all of the food for patients). We are analysing more specific and sensitive biomarkers to try and understand how these symptoms are being induced. I hope we can have the results early next year.

(red highlight is mine) This is progress for NCGI.

Full Interview at:
http://www.pronutritionist.net/intervie ... iekierski/

[tex]

The big question, though, is, "Why did the other 71% think that they were gluten-sensitive, but they were not, (according to the researchers). We have found just the opposite to be true. Most people who join this board are convinced that they are the exceptions who are not gluten-sensitive. Virtually no one here thinks that they are gluten-sensitive, when they are not. There's something wrong with this picture.

Note that the researchers only tested serum for IgA antibodies - they didn't test stool, (except for lactoferrin). The stool lactoferrin test is really a Crohn's and UC test - it doesn't work for MC or celiac sprue. Why on earth did they check that, but not check for IgA antibodies?

Thanks for the info.

Tex

[Gabes-Apg]

Tex
i was thinking along the same line, what were their benchmarks testing wise.

that is why i found the June 2011 interview comments interesting, there is some level of acknowledgement that it does occur, and maybe they will realise that current beliefs about testing protocols may not be adequate (well a gal can dream cant she??)

[sarkin]

I also wonder, why is it "alarming" when someone eats a GF diet, unless a doctor is persuaded it's medically necessary? The world is full of people eating and avoiding all sorts of foods, for the most ridiculous of reasons, and all a doctor will say is "try to eat vegetables." (My doctor said that to me, along with "really try to follow the diet" - yes, the GF diet I had just told her about, after I shared my Enterolab results... I wish I had been snippier when assuring her that I follow *my* diet 100%, and I doubt she eats more vegetables than I do.)

I really, really don't get why they find GF threatening. There is no negative outcome to eating a GF diet, for someone who "doesn't need to," except some inconvenience that's easily overcome. It's a zero-risk proposition. Many people eating the usual diet are far less attentive to healthy eating; they should be inveighing against dietary experiments that actually have the potential to do harm, and GF just doesn't.

Harumph, but yes - good find, Gabes. Interesting that they've gone from not admitting NCGI exists, to trying to restrict membership in that club as well. What's apparent is that they've misdefined 'celiac' for decades, and are getting it wronger instead of righter... so now they have two diagnoses that they want to make sure people have to really be sick as dogs to qualify for. Brilliant.

[MBombardier]

I have a young friend who calls chronic disease "the invisible illness". Maybe it's because my mother accused me at various times of being a hypochondriac, but I wonder... Since people only see what we want them to see, generally, doesn't it seem difficult for people to believe us when we discuss how really sick we are? Doesn't the mere possibility shut us up? I know it does me. I hate getting "the look" when I mention gut issues, so I don't. Maybe these doctors are so used (they think) to hypochondriacs jumping on every illness bandwagon based on the latest medicine commercial they have seen that they are cynical about people who are really quite sick but look normal?

[tex]

I really, really don't get why they find GF threatening.

IMO, the reason why they feel particularly threatened by this issue is because they know damn well that they don't know enough about the disease, (even though it's been a known issue for thousands of years), and they especially realize that they don't know how to properly diagnose the disease, and it frustrates them no end, because they recognize that they are shackled by the ignorance built into the system, and their outdated knowledgebase. They probably feel as though they're being run over by the "steamroller" of public opinion, (and for good reason - they are. ).

Tex

[sarkin]

Well, doctors don't like patients who fail to respond to their treatment plans, regardless of whether the plan is actually hopelessly flawed...

I think a lot of 'normal' people are sick, and just don't expect to feel good. We're on a vacation with a friend like that at the moment. She's been diagnosed with Crohn's in the past, but was undiagnosed years later, by another doctor. I would be willing to bet she had (has) MC, and is having a mysterious remission not unlike mine (also with the ?help? of Asacol). She described herself as unable to gain back the weight she lost, but later said she thinks she now weighs the right amount. And that is how I figured out that I have probably already said too much, so I went back to my new policy of keeping my mouth shut. (Not my strong suit!)

Before the terrifying onset of relentless D, I had low energy and aches and pains and just figured that's what it was like to inhabit a middle-aged body. I actually thought I had been low-energy for years, but when I got all perked up again, it did feel vaguely familiar

For a lot of people who are seriously under the weather, "not having horrible digestive symptoms" qualifies as "being just fine, thanks." Weirdly, I think we're lucky that things got as bad as they did, and we were roused from our low expectations of health to do something - anything - to stop the nightmare. At least, that's true for me. I worry about this friend, who has had a cancer scare this year (caught earlier, stage 0, well managed). She drinks no milk except half-and-half in coffee and yogurt (?), and would rather die than give up gluten - she has, of course, tested negative for celiac. (Right around the time I mentioned that those tests are often wrong, that's when I knew it was time to shut up.)

I do think people with any chronic disease experience their friends becoming weary of an honest answer to questions like "how are you?" My health has been about the biggest thing on my mind this year - but I also think lots of folks are giving this matter far too little thought. Maybe they think it's mentally healthy not to overthink these things, but underthinking is looking pretty risky to me (and far riskier than giving up gluten on a flier, on the off chance it helps, on a dare!)

I don't think most of those hypochondriacs are actually hypochondriacs, in other words. If they were properly diagnosed and treated, they wouldn't be bringing their Internet research to their physicians - the very people who failed to Dx/treat in the first place. Or, deciding the doc's not the only game in town, and trying alternative therapies that doctors like to dismiss and ridicule.

Oh, dear, I'm heading off on a tangent... It peeves me that doctors have set up celiac as virtually undiagnosable, with something like a 10% success rate - that's *their* failure, not the patient's! and now are heading down the same boneheaded path for NCGI.

[Zizzle]

I really, really don't get why they find GF threatening.

I've always understood this to be their fear of patients subsisting on the simple starches found in processed GF foods. Docs feel incapable of counseling patients towards a healthy diet, so they assume the patient will go on eating the same junk food, just in GF form, which means less fiber, less fortified grains, more fat, and less complex carbs. My doctor actually exclaimed, "Gosh, what do you eat?!?" When I rattled off some examples, she was satisfied that I would be A-OK, and simply reminded me to take a multi, D, calcium, and B vitamins, and I agreed.

[sarkin]

My doc also asked "what do you eat?" - and I believe, by the look I gave her when I started reciting, "meat, fish, vegetables, fruits, nuts..." she understood that I will not be looking to her for dietary advice any time soon. I maintained a very even tone, but I know my eyebrows were way up as I listed the *basic food groups* every schoolkid learns.

She started out telling me I can eat rice - and I told her, yes, but I rarely do, and I feel better when I don't. I don't see how anyone can argue with that. (Again, it's the old "Doc, it hurts when I do this...." joke, only the doctor gets the punchline wrong and keeps saying, "whatever you do, don't stop doing that!")

The idea that eating GF is about buying foods that have GF on the label is right up there with the genius idea that margarine can be made healthy by adding other stuff to it, and that that would be better than an actually healthy food at any health outcome whatsover. Oh, wait, I'm ranting again.

[Zizzle]

The idea that eating GF is about buying foods that have GF on the label is right up there with the genius idea that margarine can be made healthy by adding other stuff to it

Keep in mind that many people diagnosed with celiac or gluten intolerance are not as educated, aware and technologically literate as the folks we have here. Many may live in areas that lack a health food store or even a decent grocery store. They may not have a computer or internet access to learn about the diet and find support. They may also lack the income to afford healthy meats, vegetables and nuts, much less processed GF foods.

Indeed if the 97% of undiagnosed celiacs were diagnosed, it would be difficult to make the GF diet universally accessible for all of them.

[tex]

Indeed if the 97% of undiagnosed celiacs were diagnosed, it would be difficult to make the GF diet universally accessible for all of them.

If the demand for wheat would suddenly take a nose dive, in today's economy, the price would drop like a rocket. I'll guarantee that most farmers would respond immediately, by planting something other than wheat. The alternative foods would be there, (at a competitive, mass-production price), if there were a demand for them.

Tex

[sarkin]

Also, though not all newly diagnosed gluten-sensitive individuals have great resources or great education, presumably their doctors *do* have the education not to be counseling people to buy crap out of stupid packages.

I doubt the doctors are acting out of concern for the world food supply or economy, either. They're protecting defending their sacred fiefdom from the likes of us patients. But I am sure you are right, Tex, that if the demand for wheat dropped, farmers would plant something else!

If the demand for help with IBS were to drop, though... that seems like a real threat to some high-end mortgage payments out there, among the medical communities. (Maybe that's why they're "planting" NCGI?)

[Sharaine]

Interesting articles, Gabes, and comments from others, too.

I've got so much to learn and find myself overwhelmed between work and dealing with MC AND my brain issues. I'm grateful I do have the means to access the Internet to find you all and research materials. I'm also glad I can afford GF foods that are healthy. It's not easy, certainly takes out more money out of our budget.

Sara, I like your ranting.