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Gluten Free Expo

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Over the weekend we attended a gluten free expo which also offered a series of short "seminars". THE featured speaker was Dr. Rodney Ford who is well-known in the celiac medical world. He describes himself as a pediatric allergist and he specializes in diagnosing celiac children, but he has vast knowledge of celiac disease. I wish he could have spoken for longer than 30 minutes.

The salient points of his presentation (I couldn't take notes because the room was SRO) were that he believes in New Zealand that the incidence of celiac disease (that is, disease identifiable by intestinal biopsy) is probably as high as one in forty, and that gluten intolerance may be as high as one in ten, which is an astounding number. It probably accounts for the very large turnout and the quality of the foods on offer and number of exhibitors from our city (400,000). Which would mean 40,000 gluten intolerants if Dr. Ford is correct, and 10,000 celiacs. (It was also heartening to me to find the number of food providers who were eliminating soy and potato starch from their products :)

Dr. Ford believes that the only two blood tests which need to be run for a celiac diagnosis are the tTG and the DGP (deaminated gliadin peptide), which appears to be a relatively new test. He explained the history of celiac testing, and believes that it is monetarily driven. He spoke quite disparagingly of the "gold standard" biopsy, believing it to be an unnecessary test if your blood work is positive. It is only the "gold standard", he believes, because it was initially the only test they had (blood testing being a very recent event--last 20 years). He gave an example of three children from one family with similar symptoms who came to him for help when dismissed by other pediatricians. All three children had digestive problems and all had positive tTG tests; all three had endoscopies. He told us ahead of time that only one of the children was diagnosed celiac, and asked us to guess which one. No, you could not tell by looking at them (he showed pictures). The only difference in the diagnosed celiac child besides the positive biopsy, was that she had the highest tTG score. He is a strong proponent of not waiting for further damage; take them off gluten now before other problems develop.

At least this is what I think he said :unsure: At times it was quite noisy and hard to hear because this was just a partitioned off area, not a separate room.


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

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In Sweden they did a screening of 12-year olds, and lo and behold 3% of them had positive ttg antibodies. That would be 1 in 33 I think.

gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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