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harma

I became a member of the Dutch Celiac Foundation after finding about I have CC and the relationship with gluten. In their magazine that appears a couple of times a year there was a feature about the gluten free hype down under. The tone of the whole article makes me consider to terminate my membership (but that is another issue). It start with telling that New Zealand is gluten free "Walhalla", because gluten free is present on almost every restaurant menu. The explanation they give, on a population of 4 million, there are only 10.000 real celiac patients (and after an optimal screening this could go up to 40.000) but 50.000 to 70.000 people actually eat gluten free. In this article these people are called pseudo-celiacs Twisted Evil

. They follow a gluten free diet because they think it is good for their IBS or other medical issues. The edical evidence to prove this is lacking and the alternative circuit is filling this hole. Than Australia follows, here about 1.000.000 eat gluten free. Most of these are people with in an imaginary diagnoses of celiac disease, put in their head by alternative therapists (yes gabes like your holistic therapists Confused

). After that mainstream medicine can't talk it out their heads anymore (again I am only quoting what the article is saying, this is not my opinion).

Concerning to this article most people down under are gluten free for "fun", the writers also see a positive side for the real celiacs, the supply of the gluten free product in supermarkets, health shops and restaurants.

So people living in Australia and New Sealand this is how the Dutch Celiac Foundation thinks about you!!

The article is written by the chairman of the medical advice committee of the Dutch Celiac Foundation. If this is the view of the Celiac foundation here I am really considering ending my membership. They only seem to represent the interests of diagnosed celiacs and HD (the real one). Like a world of we, the real gluten free people and them, the pseudo people.

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Rosie · Posted: Tue Mar 09, 2010 12:38 pm Post subject:

You would think that the CD groups would welcome the growing evidence that there are other forms of severe gluten intolerance besides CD. It's almost like they are jealously guarding their "turf", and that they are the only ones with "true" gluten intolerance. Oh well....... whatever

And the gluten-free "Walhalla" in New Zealand that you mention isn't what you might think, from my experience there on vacation last year. The restaurants I went to would have GF and DF next to menu items that could be made that way. However, what they seemed to do was just remove the offending food items and not replace them with anything else. For example, at one very nice restaurant my husband and I both ordered the same menu item, an herb-crusted fish dish. He got the fish with a fancy piece of garlic bread and mixed grilled veggies. I got a bare piece of fish with no bread (and no substitute) with some steamed broccoli. There was no attempt to substitute with GF bread, or put an alternative coating on the fish to make it more interesting, or prepare the veggies with olive oil instead of butter. And I got charged the same price....... Twisted Evil

Rosie
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Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison

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tex · Posted: Tue Mar 09, 2010 1:37 pm Post subject:

Harma,

I have a hunch that most "official" celiac organizations all over the world, have that same attitude. Many/most of the ones in this country certainly do. As Rosie pointed out, they become very defensive, and actually seem personally offended, that someone without a valid medical diagnosis of celiac disease, could be so "bold" as to "pretend" that they are sensitive to gluten, just like celiacs. I suppose it may be a matter of ego - they consider themselves "special", and they take offense when some "outsider" tries to "horn in" on their act. That is certainly the position of the celiac support chapters here in Texas, and I'll bet that attitude is pretty widespread. They have the attitude that they are "the official celiacs", and no impostors are welcome.

In their defense, that attitude is encouraged, (in fact, demanded), by the mainstream medical community, whose members also look down their noses at anyone "pretending" to be a celiac, without an official diagnosis. Few things upset a GI doc more, than a "wannabe celiac", who tests negative to the classic celiac blood tests, and small intestinal villus biopsies, but still claims to be sensitive to gluten. Their pathetically inadequate diagnostic tests are only capable of diagnosing someone in the final stages of the disease, and yet, the doctors who use those tests, continue to insist that they are the only way to "officially" diagnose gluten-sensitive enteropathy. The whole concept sucks, but I doubt that any significant progress toward resolving it, will come about anytime soon.

The celiac support groups want to maintain their "purity", and their "pedigree", but by doing so, they are missing an opportunity to grow to be a truly formidable lobbying group. By continuing their "snobbish" attitude, they are limited to represent only the "tip of the iceberg" - those with an official medical diagnosis of CD. They are outnumbered 100 to 1, by undiagnosed celiacs, and they are outnumbered about 300 to 1, by people who are gluten-sensitive, but test negative to the classic celiac blood tests, and/or biopsies to measure villus atrophy.

I have a hunch that some day, support groups for people who are gluten-sensitive, but who fail the diagnostic criteria for CD, (NCGS), will become popular, and when they do, their membership, (and their lobbying power), will dwarf the "old-fashioned", straight-laced "official" celiac support groups. That's just my opinion, of course.

Tex
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cowboy

Remember: Status and honoraria go to those who support the current guidelines.

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harma · Posted: Tue Mar 09, 2010 1:44 pm Post subject:

tex and rosie thanks for your reaction, yes what your both saying seems to be true. It was only a surprise for me to discover this. My view of the world is sometimes a bit naive. I have just sent them an email with my findings and have asked them if there are exclusively for diagnosed celiac disease patients and HD patient or that they have an open view to other gluten sensitivities. Let's wait and see what their reaction will be....

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angy · Posted: Tue Mar 09, 2010 3:35 pm Post subject:

That's mad that they think like that....so becAuse I don't have a celiac diagnosis doesn't mean I'm not sensitive to gluten...like a lot of us we get sick if we eat gluten foods...I sure do...for days on end I might add...the crazy thing is as I have said before... If they had a decent test for gluten sensitivity in the first place and detected this with people then they could prevent people from becoming full blown celiacs...in the first place...don't ya think :)
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Angy ;)

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Gabes-Apg · Posted: Tue Mar 09, 2010 3:50 pm Post subject:

mmmm I might try and find the article on line and post a comment to the writer.

as i have explained to about 5 or more doctors over the past 10 years. I am not celiac. i dont show up as a celiac or gluten intolerant on their blood test. I know for a fact that my body is much much happier if I dont eat gluten.
My digestion works properly, I sleep better, i dont have migraines and aches and pains.
I dont need a test to know that I am gluten intolerant

Interestingly to become a member of the celiac society in Australia i have to have a letter from a medical practitioner confirming gluten intolerance.
you have to be a member access to listings of food suppliers and restaurants etc.

and yes agreed, cafe/restaurant idea of gluten free is to just negate the offending item. Hence why my valentines dinner with TK was amazing as pretty much the whole menu was gluten free on the basis that proper substitutions had been done

quite a few restaurants/cafes/ pizza places that used to advertise Gluten Free items now have them on the menu as "low gluten" as they can not guarentee 100% that the storage, preparation, cooking is done to Gluten Free standards. One of these places would not allow me to bring my own cereal and milk for a work breakfast meeting, even though there would be 10 others paying for food items.
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Gabes Ryan

i like nonsense, it wakes up the braincells...dr seuss

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harma · Posted: Tue Mar 09, 2010 4:17 pm Post subject:

no it was a Dutch article in a dutch magazine of the dutch celiac foundation Gabes on celiac in New Zealand and Australia

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Polly · Posted: Wed Mar 10, 2010 6:48 am Post subject:

Harma,

You did exactly what I was going to suggest - you wrote to them to set them straight. Good for you!! Celiac disease (and its associated statistics) are only the tip of the gluten sensitivity iceberg, as we all well know. Perhaps you could refer them to Dr. Fine's paper titled "Early Diagnosis of Gluten Sensitivity : Before the Villi are Gone" on his website at www.finerhealth.com. (Click on "Microscopic Colitis" and then click on "new essay" on the left hand side of the page).

There are many folks who do not have a specific sensitivity but are increasingly choosing to avoid wheat. After all, grains are not high in nutritional value like other foods (fruits, veggies, etc.) That's why they are fortified with supplemental vitamins. And we have been overexposed to wheat - it is thrown into so many processed foods. Ridiculous! So I say, the more GF options, the better! And three cheers for down under!

Love,

Polly
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Blessed are they who can laugh at themselves, for they shall never cease to be amused.

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tex · Posted: Wed Mar 10, 2010 1:23 pm Post subject:

harma · Posted: Fri Mar 12, 2010 1:13 pm Post subject:

Today I got a reaction on my email to the Dutch Celiac Foundation about the article in a Dutch Magazine of the Dutch Celiac foundations I had sent earlier this week. First I was surprised to got an answer to quick and second also a little surprised by the content of the message. He (the writer of the article) is very well aware of the relationship between CC and CD. He says "here" (I guess that is his practice) we have 98 CC patients from with 50 have CD. Every CC patient is checked for CD too. Also he mentions he has published an article on MC and CD.

It was the writer of the article who replied to me email. And he is not just somebody, he is the supervisor of the GI department of the VU University medical Center in Amsterdam. Even, he offered me some help to get my tested for celiac disease if this is not done yet.

So hospitals are aware here of relationship CC - CD. I am going to write him back, thank him for the kind offer and his message and probably will also mention the research of Dr Fine (if he is interested)

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IDontGiveA · Posted: Fri Mar 12, 2010 8:43 pm Post subject:

I do not mean to hijack this thread, but I find the different attitudes about CD in different places in the world interesting. I am not familiar with any official organizations here in Brazil, however gluten has been a popular subject in the media lately (talk shows, local news) showcasing people who are not celiacs but choose to avoid gluten anyway. There is not much in the way of GF restaurants or specific foods, however every industrial food product is required by law to be labeled if it contains gluten. Could be because the staples here (beans,rice,cassava,meat) are GF anyway...

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kscolorado · Posted: Tue Mar 16, 2010 5:38 pm Post subject:

I've found this thread very interesting. There are many people benefiting from gluten free diets that are not celiac. I have a friend who has cancer that's oncologist has him gluten free and I heard of a MS patient as well who is benefiting from the diet. Also the many non celiac people on this forum that have found it helpful for MC. Snobby celiac's are so funny, like its a special club or something! I actually have an official diagnoses of Celiac from Dr. Lewey but because my intestines were mostly healed when we did a biopsy (I did the diet before testing) he and I decided to only put gluten intolerance on my medical records so that I can have better chances of life insurance (need to get some someday!) ect. He trusts me to stay gluten free for life so he didn't think I had to have the official label on my records to keep me honest. Whether its called celiac, non celiac gluten intolerance or whatever shouldn't make a difference if removing gluten helps someone lead a normal life.
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Kathy

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Gabes-Apg · Posted: Tue Mar 16, 2010 6:35 pm Post subject:

to me, an intolerance is an intolerance.

namely where there is a reaction that is dehibiltating (either chronic diarrhea or asthma up to the level of anaphylaxic shock) enduring MC flares for long periods of time or recurring flares hasa myraid of long term health issues
and this would be same for people that keep having asthmatic reactions
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Gabes Ryan

i like nonsense, it wakes up the braincells...dr seuss

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Stanz · Posted: Tue Mar 16, 2010 7:03 pm Post subject:

mayhue1 · Posted: Wed Mar 17, 2010 4:41 pm Post subject:

I went into a small speciality grocery store/pharmacy in my home town. This was before I got the results from Dr. Fine's lab. I was just looking to see what they had, and how expensive it was. When checking out- the lady asked me if I had CD? I told her no- but probably GI. Boy did I get a dirty look! Now I know why.

And the funny thing is, we both have to live gluten free. Why does her diagnosis of CD make her more special?

Colleen

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