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I finally got my results back from Enterolab, it took 2 1/2 weeks, about what they said.
I just did the gluten sensitivity test:
Fecal Anti-gliadin IgA: 89 Units
So there is no doubt that I'm sensitive to gluten. I originally had some doubts, since my diarrhea went away when I eliminated all the suppements and herbal remedies I was taking and continued a regular diet containing lots of wheat products. I had discovered that I was dairy intolerant about 5 years previously, and Tex told me that he would be very suprised if I wasn't also gluten-intolerant since they usually go together. However, this site made me realize that there are some people who are sensitive to gluten who don't have diarrhea, so I decided to eliminate it from my diet about 4 weeks ago just before I sent off my sample to Enterolab. As I have posted earlier, I have felt a lot better, as my asthma has gotten much better, leg cramps have subsided, and soreness in hands has decreased. I will say that I haven't noticed much difference in my digestion since going gluten-free. I have reduced from 2 to 3 BM per day to more like 1 to 2, and sometimes they are a bit loose, but no diarrhea. But the huge turn-around was when I eliminated the supplements.
I find it somewhat puzzling that the two times in the past that I had severe diarrhea, they were resolved not by eliminating gluten but by eliminating dairy the first time and some unknown irritant in my supplements the second time.
I have a question concerning the value of further testing. Right now I feel pretty good. My digestion is probably 95% normal, my old energy is back and lots of other symptoms have disappeared just with the diet. Would it worth while to test for other food sensitivities such as soy? Enterolab keeps the sample for about a month, so I could get other tests without sending in another sample and paying extra shipping. Also, would getting the genetic testing add any useful information? It seems to me that gene testing is most valuable if you have lots of trouble getting stabilized and need to see if the genetic profile means that you need to explore lots of avenues for food sensitivity. I seem to have a milder case than many here, and have been able to rather quickly stabilize just with diet. Some of this was just plain luck, as I was diagnosed with LC after just 2 months of problems, rather than dealing for years with misdiagnosis and doctors who weren't much help while symptoms kept getting worse and damage occuring.
Rosie
Enterolab results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Enterolab results
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Eventually, you might want to test for the other sensitivities. If cost is an issue for you, I suppose the more important test/s to do next would be those for the soy, eggs, and yeast since you already know about the gluten and dairy casein. Since your stool specimen is already at the lab, you could go ahead and do those antibody tests within their time frame to save the mail charges as you mentioned, and postpone the genetic studies until some point in time when you might feel you need it. Since the latter just requires a cheek swab, you'd have to send in that specimen anyway, and of course, your genes are going to be changing.
In the early days I probably would've thought, "Why not wait a while?," but now, having seen that so many of us with M.C. have mutliple sensitivities, and that we tend to have continued imperfections (ha!) in our B.M.'s without getting off of them, it just seems like a good thing to do to go ahead and get those over with from the start.
You might want to try to get a doc's order for the gene testing as they do the gene testing just like any other lab, that is unless you don't want insurance poking their noses into your private pay lab results. If you don't mind that, you should, with your history and your doctor's order, be able to get the gene tests done through EL. Their charge is about half, maybe less than half, the last time I checked, than the more famous labs that are used often for diagnosing or ruling out celiac disease. The benefit of their lab is that they will tell you the other genes you might have if one or both of the HLA pair you have happens to be other than the DQ 2 or DQ8 genes, which are the main genes for classical celiac disease. Tex is sort of collecting our genetic profiles, and we are therefore, able to look at the manifestations in terms of which food sensitivities we have as well as our disease, in general, to see if the genotype makes any difference in our population. However, if you can't do that at this time or ever, that's fine.
Some may want to know what genes they have as if oneor both is/are DQ2 or 8, then they know to watch for celiac disease in their children or other close family members.
Good luck! However it turns out, other than eggs, I haven't missed soy very much since being off of gluten and dairy, and have gotten used to not have eggs by now, so the hardest part is probably behind you.
Yours, Luce
In the early days I probably would've thought, "Why not wait a while?," but now, having seen that so many of us with M.C. have mutliple sensitivities, and that we tend to have continued imperfections (ha!) in our B.M.'s without getting off of them, it just seems like a good thing to do to go ahead and get those over with from the start.
You might want to try to get a doc's order for the gene testing as they do the gene testing just like any other lab, that is unless you don't want insurance poking their noses into your private pay lab results. If you don't mind that, you should, with your history and your doctor's order, be able to get the gene tests done through EL. Their charge is about half, maybe less than half, the last time I checked, than the more famous labs that are used often for diagnosing or ruling out celiac disease. The benefit of their lab is that they will tell you the other genes you might have if one or both of the HLA pair you have happens to be other than the DQ 2 or DQ8 genes, which are the main genes for classical celiac disease. Tex is sort of collecting our genetic profiles, and we are therefore, able to look at the manifestations in terms of which food sensitivities we have as well as our disease, in general, to see if the genotype makes any difference in our population. However, if you can't do that at this time or ever, that's fine.
Some may want to know what genes they have as if oneor both is/are DQ2 or 8, then they know to watch for celiac disease in their children or other close family members.
Good luck! However it turns out, other than eggs, I haven't missed soy very much since being off of gluten and dairy, and have gotten used to not have eggs by now, so the hardest part is probably behind you.
Yours, Luce
Rosie,
The immune system tends to focus on the most prominent "perceived" problem, at any given time. Perhaps you are more sensitive to casein, than gluten. Or, you might be one of many who are sensitive to gluten, but you were asymptomatic.
As to whether to consider other tests, it will take a while on the GF diet, for your body to reach equilibrium. If you have other food intolerances, they should show up relatively soon, once the effects of the gluten are out of your system, (IOW, as the anti-gliadin antibodies diminish). It's possible, though, that it could take as long as a year or more, but I wouldn't think that should be likely, in view of your seemingly low reactivity to it, at this point. Once the anti-gliadin antibodies fade away, then if you are intolerant to any other food proteins, they should begin to cause your immune system to accelerate the production of antibodies, and symptoms should become evident. If that doesn't happen, then you are "home free". If you would rather know "right now", then those other Enterolab tests will answer those questions, immediately. In a way, it's a shame that Enterolab is becoming so popular, because until just recently, they used to keep samples for about a year, which was very helpful, for those of us who might decide to get additional tests further into our treatment program, if a glitch in our progress happened to appear.
The gene test results are, (IMO), very interesting, but certainly not essential, in your treatment program. I consider that test to be money well spent, but that's probably because, like many others, I'm curious about what makes things "tick". As Luce mentioned, if you are interested in that sort of information, the gene test offered by Enterolab is the best bargain out there, by far, when compared with the competition.
Thanks for posting that result. Do you mind if I add it to our test result list?
Tex
The immune system tends to focus on the most prominent "perceived" problem, at any given time. Perhaps you are more sensitive to casein, than gluten. Or, you might be one of many who are sensitive to gluten, but you were asymptomatic.
As to whether to consider other tests, it will take a while on the GF diet, for your body to reach equilibrium. If you have other food intolerances, they should show up relatively soon, once the effects of the gluten are out of your system, (IOW, as the anti-gliadin antibodies diminish). It's possible, though, that it could take as long as a year or more, but I wouldn't think that should be likely, in view of your seemingly low reactivity to it, at this point. Once the anti-gliadin antibodies fade away, then if you are intolerant to any other food proteins, they should begin to cause your immune system to accelerate the production of antibodies, and symptoms should become evident. If that doesn't happen, then you are "home free". If you would rather know "right now", then those other Enterolab tests will answer those questions, immediately. In a way, it's a shame that Enterolab is becoming so popular, because until just recently, they used to keep samples for about a year, which was very helpful, for those of us who might decide to get additional tests further into our treatment program, if a glitch in our progress happened to appear.
The gene test results are, (IMO), very interesting, but certainly not essential, in your treatment program. I consider that test to be money well spent, but that's probably because, like many others, I'm curious about what makes things "tick". As Luce mentioned, if you are interested in that sort of information, the gene test offered by Enterolab is the best bargain out there, by far, when compared with the competition.
Thanks for posting that result. Do you mind if I add it to our test result list?
Luce, I have to admit that you've got my curiosity aroused there. IOW, I don't understand what you're saying. While it's certainly true that our genes can be altered, due to various "traumatic" events, is there any reason to suspect that the specific genes involved with gluten sensitivity are likely to appear, or disappear, (after all, we're born with those genes, and theoretically, they are always there, whether they are "triggered", or not)?Luce wrote:and of course, your genes are going to be changing
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.
Rosie,
My son's IgA was 166 and he never had diarrhea. Gluten can take it's toll in many ways, not just diarrhea. I initially didn't have diarrhea either - I had peripheral neuropathy/parasthesis for a year and half before diarrhea developed. I also had joint pain before D started. My point is, just because you don't have diarrhea now, doesn't mean it wouldn't develop at some point - continuing gluten can cause additional damage. I often wonder how my health would be today if the 15 doctors I saw about my strange symptoms were smart enough to figure out I had a gluten problem before D started.
Mary Beth
My son's IgA was 166 and he never had diarrhea. Gluten can take it's toll in many ways, not just diarrhea. I initially didn't have diarrhea either - I had peripheral neuropathy/parasthesis for a year and half before diarrhea developed. I also had joint pain before D started. My point is, just because you don't have diarrhea now, doesn't mean it wouldn't develop at some point - continuing gluten can cause additional damage. I often wonder how my health would be today if the 15 doctors I saw about my strange symptoms were smart enough to figure out I had a gluten problem before D started.
Mary Beth
Amen to that.Mary Beth wrote:I often wonder how my health would be today if the 15 doctors I saw about my strange symptoms were smart enough to figure out I had a gluten problem before D started.
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.
Sure Tex, you can post my result in the "Results List". From your comments Im thinking that I might just keep on the gluten-free, dairy-free diet and see what happens. As you say, if I manage to stay stable long-term, then I should be home free. If other sensitivities develop, then I'll deal with them and based on the general experiences here, I know where to look next.....soy, eggs and yeast.
My next step is to inform my son and daughter so they can be aware of this. As far as I know, I'm the only one in my immediate family with these problems, but since I didn't develop problems until my 50's, it's good for them to know what to look for. My daughter-in-law and two grandkids have CD, so they already are gluten free. Most of my daughter-in-law's family including mother, sister and several aunts have CD. And since I have a gluten sensitivity, it may be that I have passed on the relevant genes to my son, who passed them on to my grandkids. As for the gene testing, the alleles are so common in the general population that I'm not sure how useful it would be to know. Interestingly, my daughter-in-law hasn't gotten either of her two kids tested because she doesn't see the point. Since she has CD, the kids will have the gene too. They have both been gluten-free from birth, and she is positive that both kids have CD based on their responses to accidental exposure. Her 3 year old son (my grandson) in particular seems to be extremely sensitive. Play dough has been one of her biggest headaches, because it's so popular for kids to play with in day care, pre-school, friend's homes, etc. It's made with flour, oil and water, and crumbs get everwhere. And small kids are always putting their fingers in their mouth. This little boy is also extremely small for his age, even on a gluten-free diet.
Luce, thanks for your comments. Who knows, I might go ahead and decide to get tested after all for the other food sensitivities, as if they are going to be a problem I might be able to avoid dealing with a "flare" later on.
Mary Beth, even though you had a real rough patch due to doctors fumbling around, it sounds like it at least you were able to get your son on the right gluten-free track before he had to go through hell like you did.
I think that we all have come out of this experience with a much better appreciation of good health, and much more sympathy and patience for people with poorly-diagnosed health issues.
Rosie
My next step is to inform my son and daughter so they can be aware of this. As far as I know, I'm the only one in my immediate family with these problems, but since I didn't develop problems until my 50's, it's good for them to know what to look for. My daughter-in-law and two grandkids have CD, so they already are gluten free. Most of my daughter-in-law's family including mother, sister and several aunts have CD. And since I have a gluten sensitivity, it may be that I have passed on the relevant genes to my son, who passed them on to my grandkids. As for the gene testing, the alleles are so common in the general population that I'm not sure how useful it would be to know. Interestingly, my daughter-in-law hasn't gotten either of her two kids tested because she doesn't see the point. Since she has CD, the kids will have the gene too. They have both been gluten-free from birth, and she is positive that both kids have CD based on their responses to accidental exposure. Her 3 year old son (my grandson) in particular seems to be extremely sensitive. Play dough has been one of her biggest headaches, because it's so popular for kids to play with in day care, pre-school, friend's homes, etc. It's made with flour, oil and water, and crumbs get everwhere. And small kids are always putting their fingers in their mouth. This little boy is also extremely small for his age, even on a gluten-free diet.
Luce, thanks for your comments. Who knows, I might go ahead and decide to get tested after all for the other food sensitivities, as if they are going to be a problem I might be able to avoid dealing with a "flare" later on.
Mary Beth, even though you had a real rough patch due to doctors fumbling around, it sounds like it at least you were able to get your son on the right gluten-free track before he had to go through hell like you did.
I think that we all have come out of this experience with a much better appreciation of good health, and much more sympathy and patience for people with poorly-diagnosed health issues.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
No problem. I'm glad to see that it was a typo, because I'm a loooooooong way from being an expert on genetics, and when I read that, I was afraid that I was totally lost. 
Thanks,
Tex
Thanks,
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.