Gluten Free Society Gene Test For Non-Celiac Gluten Sensitivity?

[carolynmay]

Dear all,

I am contemplating getting this test done. From what I have been told by my practitioner (here in the UK), it is supposed to tell you if you have sensitivity to non-gluten grains gluten - ie. the glutens in corn (zein) and rice (oryzenin), for example. The gluten free society, which appears to provide this tes, argues it is sensitivity to the glutens in these other grains which may prevent healing in celiacs on a traditional gluten free diet.

I just wondered if anyone has done this test, or has any thoughts on it? I am struggling to find any real evidence of how the test works, but am basically very keen to find out if it is really safe for me to eat rice or not. Corn I can probably live without.

I did a year on the Specific Carbohydrate Diet, which has definitely helped healing, but I am keen to expand my foods back now, especially as I think I am developing salicylate and amine sensitivities through the restricted diet.

The other thing I wonder is whether it would just show that - yes, I have another gene which may cause sensitivity to the non-gluten grains - or may not. Because of course around 30 - 40% of the population apparently have at least one of the celiac genes, but it doesn't necessarily mean they go on to develop celiac disease.

Thank you so much for any knowledge / thoughts on this.

Best wishes,

Carolyn

[IrishHeart]

Can you tell us how the test works?

What lab it is run through?

That sort of thing?

Give us a link to it maybe so we can see what it claims to do?

[carolynmay]

Can you tell us how the test works?

What lab it is run through?

That sort of thing?

Give us a link to it maybe so we can see what it claims to do?

Hi there - see the below:

Open Original Shared Link

The information on the site is frankly minimal. If you watch the video it claims that all grains contain gluten (true - ie. zein, oryzenin, avenin etc as well as the "gluten" grains). The implication is that in years to come celiacs will be told to avoid ALL grains, but from what I can see (and I am not a member of the site so can't see all detail), does not appear to provide any evidence that "non-gluten" grain proteins damage the gut.

My practitioner here tells me that the test shows if you also have DQ1 or DQ3, which are apparently associated with sensitivity to glutens from other grains.

I have emailed the gluten free society to ask for details about this - will post if I receive anything. I just wondered if anyone knew anything about this in the meantime.

Best wishes,

Carolyn

[carolynmay]

Can't seem to get the link to show fully. Trying again:

Open Original Shared Link

or with gaps so that it hopefully all shows!

http: //www.(Company Name Removed - They Spammed This Forum and are Banned) /genetic-testing-for-gluten-sensitivity/

[kareng]

This is that " dr" Osborne's site that wants $69 to help you with his theory that all grains are bad.

I don't think much of someone that won't explain the test unless you pay your money.

[dilettantesteph]

That site has all sorts of misinformation on it. I wouldn't trust it either.

I don't think that genes responsible for other grain intolerances have been identified. I don't think that it has been shown to be genetic.

[IrishHeart]

Here is some of what the "ad" says:

" Most of the research regarding gluten is directly linked to celiac disease, and most of the research on celiac disease focuses only on 3 grains (wheat, barley, rye) and sometimes a fourth (oats). There are a number of studies that have linked the gluten in corn to adverse reactions! But wait, there is more… Almost half of the people diagnosed with celiac disease do not get better on a traditionally defined gluten free diet! So the big question is…Why?! The answer – The traditionally defined Gluten Free Diet is not really gluten free."

I see glaring holes in much of what is said on the site, but here are just 2:

Where are these "studies" that link gluten in corn to adverse reactions ? You mean people with corn allergies or intolerances?

"Half the people" do not get better?! Really? Where does that "statistic" come from?!! I have never seen anything in published data to support that claim. I would want proof before I sent anyone money for a test kit.

I have never seen any information that discusses genetic testing for other grains. If anyone finds some, I'd be interested in reading it.

Hon, if this IS the case, and you feel as if gluten in all grains is keeping you from healing, then just take them out and see what happens. If you feel better, then there is your answer. Save yourself the money.

[carolynmay]

Thank you both very much for your replies. I am very unsure about this I have to say.

I went completely grain-free for over a year until recently, and it is very clear from endocsopies that it did actually help a lot with healing (after 5 years of a traditional gluten-free diet beforehand really didn't).

I am desperate to expand my menu though as it is so incredibly restrictive and I think also causing other issues such as salicylate and amine intolerances through over-dependence on fruit and vegetables.

So I would really like to add in white rice, but am now made very nervous by these claims that actually all cereal glutens / prolamins could be damaging. So was trying to find a way if I could check whether white rice is damaging to me or not.

Sorry if all this sounds ridiculous!

No reply from the gluten free society on the test information by the way..

My current feeling is that I will allow back in tapioca and tapioca flour on a semi-regular basis, and perhaps soaked white rice from time to time.

Best wishes, Carolyn

[Kamma]

What about seed or legume flours? Quinoa, chick pea flour, pea flour and so on?

Also, have you tried just regular quinoa? It forms a huge part of what I am eating. It also is only one of two 'vegetables' that contains a full complement of amino acids (protein).

[Skylark]

Gads, that kook again. Don't waste your time or money on anything from Gluten Free Society. There is not a test that could magically tell you whether you can't tolerate rice. They are trying to make you afraid of a very safe grain to try to con you out of money, and are getting close to succeeding.

Rice contains prolamin storage proteins, but not gliadin, the protein in wheat/rye/barley/oats that gives us trouble. There are a lot of people who advocate grain-free diets but admit that white rice isn't much of a problem. You could also add sweet potatoes if you want some super-healthy starch.

I don't actually think there is a such thing as over-dependence on fruits and vegetables. Humans couldn't have survived before agriculture. There is evidence that lacking certain protective gut bacteria contributes to food intolerances. Perhaps you need more probiotics?

I found this study about fish oil and salicylate intolerance too, in case it helps.

Open Original Shared Link

[IrishHeart]

There is evidence that lacking certain protective gut bacteria contributes to food intolerances. Perhaps you need more probiotics?

Oh, thank you for saying this, Sky! I feel like sometimes I am the lone voice crying in the wilderness about probiotics.

And for telling it like it is. Always refreshing.

I wonder---would another source of Omega 3 EFAs work as well --if someone cannot tolerate fish oil?

[11475]

I am desperate to expand my menu though as it is so incredibly restrictive and I think also causing other issues such as salicylate and amine intolerances through over-dependence on fruit and vegetables.

So I would really like to add in white rice, but am now made very nervous by these claims that actually all cereal glutens / prolamins could be damaging. So was trying to find a way if I could check whether white rice is damaging to me or not.

Sorry if all this sounds ridiculous!

My current feeling is that I will allow back in tapioca and tapioca flour on a semi-regular basis, and perhaps soaked white rice from time to time.

Hi Carolyn,

It absolutely does not sound ridiculous. I just wanted to say that I have big problems with salicylates (and amines, glutamates etc) too, but that the general consensus for sal-sensitive folks is that the best type of rice, or the one least likely to cause problems, is white sushi rice.

Rice may just be a problem for you regardless of type, but since you mention salicylate sensitivity, please do consider trialling white sushi rice when you feel ready to add in some rice.

I would agree that it's possibly not an over-dependence on fruits and vegetables, but if someone has problems with salicylates, then fruits and vegetables certainly are an issue for that person.

Best of luck to you!

[domesticactivist]

Yes, probiotics! Our family does GAPS which is similar to SCD and includes more naturally probiotic foods as well as therepeutic probiotics. We like GutPro Probiotic Powder.

As for whether you have a reaction to rice or not, of course it's possible. But that would be separate from celiac disease.

If you want to know what genes you have, order the celiac screening test from Kimball Genetics division of Labcorp. They are reputable. They test both HLA-DQ alpha and beta. They send a report that just tells your risk based on DQ2 and DQ8 however if you call the genetic councilor they will send you the actual report which tells you the details of the full findings, and will discuss it with you over the phone. With that you could also determine if you have DQ1 or DQ3. I had to do a bit of research to interpret my kids' information, but wiki and some of the folks here (shout out to Skylark!) were very helpful with that.

There are ELISA tests that you can order from BioTek - they will test for IgG, IgE, and IgA reactions to a while list of foods. However, the validity and interpretation of these tests is somewhat controversial.

I doubt there is any testing out there that is going to give you better info about whether you can eat rice than eating rice and monitoring your reaction (if any) closely. Even on the GAPS diet, which excludes all grains and starchy vegetables, it is recommended that after a couple years and a lot of healing you can consider carefully introducing things like quinoa, buckwheat, and rice slowly and cautiously. They should never again become the basis of your diet, but they can be tested.

[carolynmay]

Thank you all so much - your replies are incredibly informative. I shall start taking fish oil again - I do think that helps, and also look into which probiotics are going to be best (I am based in the UK so cannot get hold of all the same products here unfortunately). Interesting too about the Labcorp test.

Thank you all again - I really appreciate it.

By the way, the gluten free society did reply and suggested I book a telephone appointment with Peter Osborne. I have asked if this would be free or not, given that all I wanted was to find out about one of their tests! Will let you know what they say!

Best wishes, Carolyn

[IrishHeart]

Thank you all so much - your replies are incredibly informative. I shall start taking fish oil again - I do think that helps, and also look into which probiotics are going to be best (I am based in the UK so cannot get hold of all the same products here unfortunately). Interesting too about the Labcorp test.

Thank you all again - I really appreciate it.

By the way, the gluten free society did reply and suggested I book a telephone appointment with Peter Osborne. I have asked if this would be free or not, given that all I wanted was to find out about one of their tests! Will let you know what they say!

Best wishes, Carolyn

Good plan!

oh, if the phone call with him is FREE, I shall be very surprised.

Keep us posted!

[kareng]

Thank you all so much - your replies are incredibly informative. I shall start taking fish oil again - I do think that helps, and also look into which probiotics are going to be best (I am based in the UK so cannot get hold of all the same products here unfortunately). Interesting too about the Labcorp test.

Thank you all again - I really appreciate it.

By the way, the gluten free society did reply and suggested I book a telephone appointment with Peter Osborne. I have asked if this would be free or not, given that all I wanted was to find out about one of their tests! Will let you know what they say!

Best wishes, Carolyn

How much would it cost? Is he located near you?