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Hello to all of you,
I have been doing relatively well since starting Entocort on September 15th. I decided to go for the Enterolab testing. I wanted all the food sensitivity panels plus the gene panel for gluten sensitivity. To give credit where credit is due, a nurse at Enterolab called me and we discussed my 6 weeks on Prednisone followed by the Entocort. I was advised to wait because it would be 'a waste of you money'. They felt the corticosteroids would mask the sensitivities. They did encourage me to continue with the gene testing.
Just got the results today and here it is:
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive 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 may be more severe.
I was surprised that I had 2 copies of the gene, but I'll bet some of you veterans are thinking "yup, this is no surprise". So here's another data point for the trend. And am I EVER glad I went ahead and went gluten free several weeks ago, after reading so much information on this site from all of you. Can't thank you enough for sharing your wisdom.
Finally I may have one more practitioner to add to the list. I want to have one more appt to be sure. I had an appointment with the nurse practitioner for my gastro doc last Wednesday. She started telling me that many, many people with LC have food sensitivities that show up after the diagnosis but she really believes it shows up 'because' we've been eating those foods all our lives. I told her I was gluten free and we had a good discussion. I could not have been more pleased. I gave her the name of this website and Enterolab.
Okay, I'm writing a book here.
take care, everyone.
Carol
My Enterolab results will be no surprise to most of you.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
But what were the actual test results, and do you mind if we add them to our database?
Here are my gene test results, for example, so your results would look similar, (but not the same, of course). I have one celiac gene, and one non-celiac gene that predisposes to gluten-sensitivity.
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5).
It's good to hear that you've been doing so well.
Tex
Here are my gene test results, for example, so your results would look similar, (but not the same, of course). I have one celiac gene, and one non-celiac gene that predisposes to gluten-sensitivity.
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5).
It's good to hear that you've been doing so well.
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.
When I did my test, not very long ago, they told me the prednisone I had been taking was no problem. The prednisone I had been taking for 2 months would not upset the results of the test.
I didn't do the gene tests. I am not going to tell my kids they should go GF, because no one will listen to me. They will have to find out for themselves.
I didn't do the gene tests. I am not going to tell my kids they should go GF, because no one will listen to me. They will have to find out for themselves.
Carol,
Good for you - I can see how this would strengthen your resolve and confirm that you're heading in the right direction. I was shocked to have 2 DQ2 genes (including that same celiac 0201 that Tex and many others share). Isn't it funny how even though we had already 'proven' to ourselves that gluten was not our friend... it's still kind of shocking to see it in black and white?
I hope you'll post the details of which genes they are - for some reason, I find this endlessly fascinating.
Sara
Good for you - I can see how this would strengthen your resolve and confirm that you're heading in the right direction. I was shocked to have 2 DQ2 genes (including that same celiac 0201 that Tex and many others share). Isn't it funny how even though we had already 'proven' to ourselves that gluten was not our friend... it's still kind of shocking to see it in black and white?
I hope you'll post the details of which genes they are - for some reason, I find this endlessly fascinating.
Sara
Tex, and all, here are the molecular analysis results, since you asked (and I don't mind if you add them to the data base. I'm all for sharing so we can see the trends). To be frank I had not had time to look up these results and just read the interpretation.
Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
Since I'm here, what else should I be aware of now that I know this? Is a large number of us who are gluten sensitive also sensitive to soy or corn? I'm still dairy free, just because I have a feeling it would make problems for me if I eat it.
I'm still going to wait until I can get off the Entocort before I have the food panels run. I really want the results to be as clean as possible.
thanks,
Carol
Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
Since I'm here, what else should I be aware of now that I know this? Is a large number of us who are gluten sensitive also sensitive to soy or corn? I'm still dairy free, just because I have a feeling it would make problems for me if I eat it.
I'm still going to wait until I can get off the Entocort before I have the food panels run. I really want the results to be as clean as possible.
thanks,
Carol
Carol,
Looking at the data, that seems to be a somewhat common gene pattern among members here. Some members with those genes have a large number of food sensitivities, while others seem to have only one or two.
At least half of us seem to be sensitive to soy, but only a small percentage, (probably less than 10%), are sensitive to corn.
Thanks - I've added your results to the list.
Tex
Looking at the data, that seems to be a somewhat common gene pattern among members here. Some members with those genes have a large number of food sensitivities, while others seem to have only one or two.
At least half of us seem to be sensitive to soy, but only a small percentage, (probably less than 10%), are sensitive to corn.
Thanks - I've added your results to the list.
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.
Carol,
Whenever I 'had a feeling' a food wasn't right for me, I wished in retrospect I had listened to my instincts. The downside to avoiding dairy isn't as bad as the downside to eating it, if you are reactive. If your Enterolab results come back negative, you might try adding it on a test basis, to see whether you react (since it's possible your antibody levels will drop below the threshold for a positive result by the time you test, but might rise again if/when dairy is reintroduced). My level for dairy was still high, three months after I had last eaten any (except for one unfortunate incident!) - but that is not certain to be the case for you.
More of us seem to be sensitive to soy than to corn.
I hope this helps, and thank you for sharing your results. It's fascinating to try to put these puzzle pieces together...
--Sara
Whenever I 'had a feeling' a food wasn't right for me, I wished in retrospect I had listened to my instincts. The downside to avoiding dairy isn't as bad as the downside to eating it, if you are reactive. If your Enterolab results come back negative, you might try adding it on a test basis, to see whether you react (since it's possible your antibody levels will drop below the threshold for a positive result by the time you test, but might rise again if/when dairy is reintroduced). My level for dairy was still high, three months after I had last eaten any (except for one unfortunate incident!) - but that is not certain to be the case for you.
More of us seem to be sensitive to soy than to corn.
I hope this helps, and thank you for sharing your results. It's fascinating to try to put these puzzle pieces together...
--Sara
We don't know, since we don't have a definitive test for corn and/or rice. Very, very few are sensitive to rice - probably less than 1 or 2%.
Tex
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.
Maybe, but you're probably sensitive to it now. I had to avoid corn when I was reacting, but it no longer bothered me after I was in remission for a while.Lesley wrote:So if it's not definitive does that mean I might not be sensitive to it?
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 was able to eat rice for four years after being dx'd. Then this summer, after being off Entocort for three months, I suddenly began reacting to it. I also began reacting to quinoa. I'm presently able to eat corn and almond flour. I hadn't eaten corn for the first three years I had MC, and suspect that's why I can eat it now - because it didn't get through my "leaky gut" and cause a reaction.
Gloria
Gloria
You never know what you can do until you have to do it.