Visit the Microscopic Colitis Foundation Website
http://celiacresearchproject.com/
This is a very brief survey a student is doing - thought I would pass it along in case anyone wanted to participate.
Mary Beth
Celiac/Gluten Intolerance and Colic Research Questionnaire
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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MaggieRedwings
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Almost surely not, but since those choices weren't properly worded, (genetic tests are not usually blood tests - they're cheek swab tests), so I answered that one affirmatively.Connie wrote:and is the cheek swab test from Enterolab considered to be "Celiac Blood Panel: genetic test"?
And, she totally overlooked stool tests, to boot.
My grandmother always reminded me that I was a colicky baby.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I've done a search for a way to contact her and sent an email to what could be her, not sure if it is, but it hasn't bounced back yet, had to guess on her email provider because the "free email address" wasn't free - so....
This is what I wrote:
-----------------------------------------
Are you the Jacquelyn Askew who posted this: http://celiacresearchproject.com/ ?
We are discussing this on a website here: http://www.perskyfarms.com/phpBB2/viewt ... 9024#79024 and some of us feel that if your research will truly be helpful, you likely are not going to get what you want if you don't change your questionnaire.
If you are not this person, forgive the intrusion, I got this email address by Googling your name.
---------------------------------------------
Maybe we can help Jacquelyn come up with a questionnaire that would be more precise? So how would we re-word this last question?
If yes, which test was administered? (check only one, as the highest degree of testing)
Celiac Blood Panel: antibody test
Celiac Blood Panel: genetic test
Endoscopy
And maybe add "don't know" about colic?
Just trying to encourage any young, smart minds that might be the ones who find the answers.
This is what I wrote:
-----------------------------------------
Are you the Jacquelyn Askew who posted this: http://celiacresearchproject.com/ ?
We are discussing this on a website here: http://www.perskyfarms.com/phpBB2/viewt ... 9024#79024 and some of us feel that if your research will truly be helpful, you likely are not going to get what you want if you don't change your questionnaire.
If you are not this person, forgive the intrusion, I got this email address by Googling your name.
---------------------------------------------
Maybe we can help Jacquelyn come up with a questionnaire that would be more precise? So how would we re-word this last question?
If yes, which test was administered? (check only one, as the highest degree of testing)
Celiac Blood Panel: antibody test
Celiac Blood Panel: genetic test
Endoscopy
And maybe add "don't know" about colic?
Just trying to encourage any young, smart minds that might be the ones who find the answers.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Here was the original email sent out by our local CSA
Could I ask for your assistance?
I am a student conducting a research study on celiac and its possible correlation to colic. I would like to ask you to share this information with ROCK. If you would announce it in one of your meetings or better yet just send this link: http://celiacresearchproject.com/ to them via e-mail/website. This anonymous brief questionnaire could potentially lead to much earlier diagnosis in individuals all over the world. Your assistance and that of your participants would be most valuable in this study. I will be collecting data for several months but obviously would appreciate your prompt assistance.
Thank you in advance.
Could I ask for your assistance?
Jacquelyn Askew [Askew.Jacquelyn@sfcs.net]
Mary Beth
Could I ask for your assistance?
I am a student conducting a research study on celiac and its possible correlation to colic. I would like to ask you to share this information with ROCK. If you would announce it in one of your meetings or better yet just send this link: http://celiacresearchproject.com/ to them via e-mail/website. This anonymous brief questionnaire could potentially lead to much earlier diagnosis in individuals all over the world. Your assistance and that of your participants would be most valuable in this study. I will be collecting data for several months but obviously would appreciate your prompt assistance.
Thank you in advance.
Could I ask for your assistance?
Jacquelyn Askew [Askew.Jacquelyn@sfcs.net]
Mary Beth
Connie,
If course, trying to second guess someone is tricky, since we really don't know exactly what she is trying to establish, but if I were doing the survey, instead of this:
Celiac Blood Panel: antibody test
Celiac Blood Panel: genetic test
Endoscopy
I would use these selections, in this order:
Gene test for HLA-DQ2, or HLA-DQ8 genes
Classic celiac blood test for either anti-gliadin antibodies, or anti-tissue transglutaminase antibodies
Stool test for anti-gliadin antibodies, or anti-tissue transglutaminase antibodies
Upper Endoscopy with biopsies of small intestine
Tex
If course, trying to second guess someone is tricky, since we really don't know exactly what she is trying to establish, but if I were doing the survey, instead of this:
Celiac Blood Panel: antibody test
Celiac Blood Panel: genetic test
Endoscopy
I would use these selections, in this order:
Gene test for HLA-DQ2, or HLA-DQ8 genes
Classic celiac blood test for either anti-gliadin antibodies, or anti-tissue transglutaminase antibodies
Stool test for anti-gliadin antibodies, or anti-tissue transglutaminase antibodies
Upper Endoscopy with biopsies of small intestine
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Does this
MaryBeth,
I attempted to email her at the link you provided, bounced back.
Does this
test also include the cheek swab test that most of us have used to identify GS, via Enterolab, or does her questionnaire not even take the lesser genes into consideration? Because I think there should be also be a category for people who have tested GS.Gene test for HLA-DQ2, or HLA-DQ8 genes
MaryBeth,
I attempted to email her at the link you provided, bounced back.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Yes,
Those are the two most common celiac genes. I'm afraid to mention the non-celiac genes, because very few people recognize those as legitimate.
Tex
Those are the two most common celiac genes. I'm afraid to mention the non-celiac genes, because very few people recognize those as legitimate.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Dear Tex,
I am not sure that I have really fully understood my gene test scores and hope you can tell me if I have it right.
Enterolab results were:
HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)
So, from what I can tell I have the serological equivalent of one that is "HLA-DQ2" and another that is "HLA-DQ3".
If this is correct, it looks like the HLA-DQ2 is definitely celiac predisposing. But is HLA-DQ3? I assume it is based on the enterolab interpretation I was given below:
All best, Ant
I am not sure that I have really fully understood my gene test scores and hope you can tell me if I have it right.
Enterolab results were:
HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)
So, from what I can tell I have the serological equivalent of one that is "HLA-DQ2" and another that is "HLA-DQ3".
If this is correct, it looks like the HLA-DQ2 is definitely celiac predisposing. But is HLA-DQ3? I assume it is based on the enterolab interpretation I was given below:
The comment about parents and children is also interesting. I think it might suggest that my brother and sister also have a high likelihood of at least one celiac/gluten sensitivity gene.Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have two copies of the main genes that predispose to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Having two copies of a gluten sensitive or celiac gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.
All best, Ant
Hi Ant,
The HLA-DQB1*0302 gene is otherwise known as the HLA-DQ8 gene, the second-most common celiac gene. Therefore, as Dr. Fine pointed out, you do indeed have two copies of celiac genes.
People who have one celiac gene, are known as heterozygous, and people who have two copies of the same celiac gene, are referred to as homozygous. (This would be an arrangement such as DQ2/DQ2, or DQ8/DQ8). I'm not sure what you would call someone with a copy of both genes, (or if that arrangement even has a name), but since DQ2 is associated with a much higher risk of developing celiac disease, that means that you have a greater risk of developing celiac disease than someone who is heterozygous DQ2, (one DQ2 gene), or someone who is homozygous DQ8, (two copies of DQ8). The only people with a greater risk of developing celiac disease than you, would be someone with a homozygous DQ2 arrangement.
Considering your osteoporosis issue, IMO, there is little question that you are a celac, (though you might not be diagnosable by classic celiac diagnosis criteria).
Both of your parents each have to each have at least one celiac gene, (at the very minimum). You're right about your brother and sister. According to my calculations, if your parents both have only one celiac gene each, then your brother and sister each have at least a 75% chance of having a celiac gene. If either one of your parents happens to have two celiac genes, then there is a 100% chance that all their offspring will have at least one celiac gene, and a 75% chance that their offspring will each have two celiac genes.
My best,
Tex
The HLA-DQB1*0302 gene is otherwise known as the HLA-DQ8 gene, the second-most common celiac gene. Therefore, as Dr. Fine pointed out, you do indeed have two copies of celiac genes.
People who have one celiac gene, are known as heterozygous, and people who have two copies of the same celiac gene, are referred to as homozygous. (This would be an arrangement such as DQ2/DQ2, or DQ8/DQ8). I'm not sure what you would call someone with a copy of both genes, (or if that arrangement even has a name), but since DQ2 is associated with a much higher risk of developing celiac disease, that means that you have a greater risk of developing celiac disease than someone who is heterozygous DQ2, (one DQ2 gene), or someone who is homozygous DQ8, (two copies of DQ8). The only people with a greater risk of developing celiac disease than you, would be someone with a homozygous DQ2 arrangement.
Considering your osteoporosis issue, IMO, there is little question that you are a celac, (though you might not be diagnosable by classic celiac diagnosis criteria).
Both of your parents each have to each have at least one celiac gene, (at the very minimum). You're right about your brother and sister. According to my calculations, if your parents both have only one celiac gene each, then your brother and sister each have at least a 75% chance of having a celiac gene. If either one of your parents happens to have two celiac genes, then there is a 100% chance that all their offspring will have at least one celiac gene, and a 75% chance that their offspring will each have two celiac genes.
My best,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Dear Tex
Many thanks. I have got the picture now (Type DQ2/DQ8). I googled this and everywhere I looked it says "high risk of celiac" (why my GI doc did not suggest a GF diet beats me).
Coincidentally I took a flight to the UK yesterday and sat next to a young french women. She was a stranger and we did not speak until the stewardess said to both of us we had ordered gluten free meals! We talked and talked for the next 4 hours, comparing notes. In addition to D, we had had, mild arthritis in figures and nees, weight loss, balance issues and fatigue all in common. Of course we also talked of the social issues of eating with friends etc. And the fact that for some years her doctor(s) told her the problem was IBS and "in her head". She had only been dx celiac (via positive blood test) and GF for 10 month, but had multiple food intolerance including dairy and vanilla. Also she could not handle fiber. From all this it is sooooo obvious that MC and Celiac are related illnesses.
I was able to tell her about the paleo diet and passed on Dr. Cordain's the website.
Best, Ant
Many thanks. I have got the picture now (Type DQ2/DQ8). I googled this and everywhere I looked it says "high risk of celiac" (why my GI doc did not suggest a GF diet beats me).
Coincidentally I took a flight to the UK yesterday and sat next to a young french women. She was a stranger and we did not speak until the stewardess said to both of us we had ordered gluten free meals! We talked and talked for the next 4 hours, comparing notes. In addition to D, we had had, mild arthritis in figures and nees, weight loss, balance issues and fatigue all in common. Of course we also talked of the social issues of eating with friends etc. And the fact that for some years her doctor(s) told her the problem was IBS and "in her head". She had only been dx celiac (via positive blood test) and GF for 10 month, but had multiple food intolerance including dairy and vanilla. Also she could not handle fiber. From all this it is sooooo obvious that MC and Celiac are related illnesses.
I was able to tell her about the paleo diet and passed on Dr. Cordain's the website.
Best, Ant