I am approaching a one year mark of finding this board, not eating gluten and Enterolab testing.
My results were high as follows:
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 510 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 129 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score 1433 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 33 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0604
I have quit eating gluten but not casein and except for some occasional indigestion/acid reflux and, once in a while, a bit of uneasiness in my stomach I am doing well with the LC. My plan was to retest after a year to see what has happened with my casein count and fecal fat score. Enterolab recommended a retest because of the high fat result, however, I forgot to stop my fish oil before the testing and think that probably contributed to it.
I am wondering, though, rather than spending the money for a retest here, if I wouldn't be better served over
the long haul with MRT testing. Can I assume my fecal fat readings are better? If I am still eating casein, do you think my levels for that have gotten worse and should I be worried? I'd appreciate your feedback. TIA. Deb
Your thoughts please...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Deb,
Are you taking Entocort or any other anti-inflammatory med? Are you in remission? Not knowing the answers to those important questions makes it difficult to formulate a helpful response. The impression I get by reading your post is that you are in remission from D, and your only significant symptoms are occasional reflux and/or stomach upset, so I'll base my response on that.
You have double DQ1 genes, so it's very likely that your test results were accurate. If you are not taking Entocort, and you are in remission while still eating dairy products, you may be asymptomatic, at least to casein, (and possibly other food-sensitivities). IOW, you may not be showing any significant clinical symptoms, even though the casein might be causing intestinal damage. I'm not saying that's what's happening, I'm just mentioning it as a possibility, since you seem to be able to eat casein, without any symptoms, other than occasional reflux/stomach distress. IMO, the dairy products are probably the source of your reflux/stomach issues but the problem might just be due to lactose, (not casein - IOW, you may be asymptomatic to casein). The reason I say this is because I don't believe that it's possible to be asymptomatic to lactose intolerance, (but I could be wrong about that).
I don't understand why you want to do the MRT testing. If it's because you are not in remission, and/or you suspect that your reflux/stomach symptoms are caused by food-sensitivities, IMO the dairy products are almost surely the culprit.
While fish oil might skew the test results to some extent, it can only skew them if the fish oil is not being absorbed, so that in itself would indicate a malabsorption problem, IMO. Your fecal fat score was very high, which suggests a lot of small intestinal damage. Without a celiac gene, it's very unlikely that you could have classic celiac disease, but since it's possible for casein to cause the same type of villus atrophy as gluten, casein, (or some other protein), might possibly be the source of your small intestinal damage/malabsorption issues. Did you by chance have an upper endoscopy with biopsies, to check for villus damage? That level of fecal fat score would probably be associated with at least a Marsh score of 1, (possibly 2), but obviously that's just a guess, since I have no way of knowing the actual level.
Frankly, I doubt that your fecal fat score would have improved significantly, if you are still eating dairy products, but again, that's just a guess.
Sorry I can't be more helpful, but obviously, these are uncharted waters.
Tex
Are you taking Entocort or any other anti-inflammatory med? Are you in remission? Not knowing the answers to those important questions makes it difficult to formulate a helpful response. The impression I get by reading your post is that you are in remission from D, and your only significant symptoms are occasional reflux and/or stomach upset, so I'll base my response on that.
You have double DQ1 genes, so it's very likely that your test results were accurate. If you are not taking Entocort, and you are in remission while still eating dairy products, you may be asymptomatic, at least to casein, (and possibly other food-sensitivities). IOW, you may not be showing any significant clinical symptoms, even though the casein might be causing intestinal damage. I'm not saying that's what's happening, I'm just mentioning it as a possibility, since you seem to be able to eat casein, without any symptoms, other than occasional reflux/stomach distress. IMO, the dairy products are probably the source of your reflux/stomach issues but the problem might just be due to lactose, (not casein - IOW, you may be asymptomatic to casein). The reason I say this is because I don't believe that it's possible to be asymptomatic to lactose intolerance, (but I could be wrong about that).
I don't understand why you want to do the MRT testing. If it's because you are not in remission, and/or you suspect that your reflux/stomach symptoms are caused by food-sensitivities, IMO the dairy products are almost surely the culprit.
While fish oil might skew the test results to some extent, it can only skew them if the fish oil is not being absorbed, so that in itself would indicate a malabsorption problem, IMO. Your fecal fat score was very high, which suggests a lot of small intestinal damage. Without a celiac gene, it's very unlikely that you could have classic celiac disease, but since it's possible for casein to cause the same type of villus atrophy as gluten, casein, (or some other protein), might possibly be the source of your small intestinal damage/malabsorption issues. Did you by chance have an upper endoscopy with biopsies, to check for villus damage? That level of fecal fat score would probably be associated with at least a Marsh score of 1, (possibly 2), but obviously that's just a guess, since I have no way of knowing the actual level.
Frankly, I doubt that your fecal fat score would have improved significantly, if you are still eating dairy products, but again, that's just a guess.
Sorry I can't be more helpful, but obviously, these are uncharted waters.
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.
Thanks for the response, Tex.
Yes, I am in remission (after 4-6 weeks of no gluten) and do not and have not taken any drugs to get there.
I have had lactose issues in the past but I think they have improved. Last summer I had some ice cream
and reacted quickly and strongly...bloating especially. I've tried it (ice cream) intermittently and recently had an actual full bowl of it with no apparent reaction. I haven't drunk milk for years as it never settled well with me but have always eaten cheese.
My reasoning about doing the MRT testing is mostly curiousity about foods that are probably the best for me and perhaps maintain better health by trying to avoid foods that test negatively.
I have never had an endoscopy.
Your response makes me think the Enterolab one might be better for me at this time.
Deb
Yes, I am in remission (after 4-6 weeks of no gluten) and do not and have not taken any drugs to get there.
I have had lactose issues in the past but I think they have improved. Last summer I had some ice cream
and reacted quickly and strongly...bloating especially. I've tried it (ice cream) intermittently and recently had an actual full bowl of it with no apparent reaction. I haven't drunk milk for years as it never settled well with me but have always eaten cheese.
My reasoning about doing the MRT testing is mostly curiousity about foods that are probably the best for me and perhaps maintain better health by trying to avoid foods that test negatively.
I have never had an endoscopy.
Your response makes me think the Enterolab one might be better for me at this time.
Deb
Well, there's certainly nothing wrong with your reasons for trying the MRT testing, either. They sound like perfectly good reasons to me.
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.
Hi Deb!
Welcome to the double DQ1 club. As Tex said, this gene pattern is usually associated with multiple food sensitivities (as Gloria and I and a few others can heartily attest). I am a huge proponent of the MRT, since it can be especially valuable for us double DQ1ers to know the (often) large numbers of foods to which we react. You have probably heard me say before that without that test I never would have suspected sensitivities to carrot, celery, yellow squash, vanilla, almonds, avocado, mango, etc.
That said, I am also a big fan of the full Enterolab testing. Unfortunately, with your gene pattern, there is a good chance that you may also be sensitive to soy, yeast, eggs, etc. It might make the most sense to eliminate all of the food sensitivities that can be determined by Enterolab first. That may be all that is needed to get you into longterm remission. Then, if problems develop again, you might try the MRT.
Good luck, and keep us posted.
Hugs,
Polly
Welcome to the double DQ1 club. As Tex said, this gene pattern is usually associated with multiple food sensitivities (as Gloria and I and a few others can heartily attest). I am a huge proponent of the MRT, since it can be especially valuable for us double DQ1ers to know the (often) large numbers of foods to which we react. You have probably heard me say before that without that test I never would have suspected sensitivities to carrot, celery, yellow squash, vanilla, almonds, avocado, mango, etc.
That said, I am also a big fan of the full Enterolab testing. Unfortunately, with your gene pattern, there is a good chance that you may also be sensitive to soy, yeast, eggs, etc. It might make the most sense to eliminate all of the food sensitivities that can be determined by Enterolab first. That may be all that is needed to get you into longterm remission. Then, if problems develop again, you might try the MRT.
Good luck, and keep us posted.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I'm bumping this post and hope you can help me think this through. I decided to redo the Enterolab tests. Last time I did not do eggs or soy. My main motivation was because I was really concerned about my fat absorption level and my casein level, though I have continued to eat dairy.
My results from last year.
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 510 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 129 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score 1433 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 33 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0604
My results this year.
A) Gluten/Antigenic Food Sensitivity Stool Panel Limited
Fecal Anti-gliadin IgA 31 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 16 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 44 Units (Normal Range is less than 10 Units)
Add Fat Malabsorption Stool Test (Fecal Fat) to panel A+C, A, B, or C at a discounted price
Quantitative Microscopic Fecal Fat Score 485 Units (Normal Range is less than 300 Units)
Gluten went from 510 to 31.
Casein went from 33 to 16
Fat malabsorption went from 1433 to 485.
No baseline for eggs or soy. I don't seem to have any negative effects from either at this time.
It was wishful thinking on my part but I really hoped my casein level would improve and it did significantly....but why? I continue to eat cheese and use cream when cooking. I was under the impression that casein caused its own set of problems, perhaps independent from gluten. Maybe not????
I'm happy my fat absorption has improved so much. I mentioned previously that my hair color is getting darker and I suspected it was because I'm absorbing nutrients better. All in all, I THINK I'm happy! Your thoughts???
My results from last year.
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 510 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 129 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score 1433 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 33 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0604
My results this year.
A) Gluten/Antigenic Food Sensitivity Stool Panel Limited
Fecal Anti-gliadin IgA 31 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 16 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 44 Units (Normal Range is less than 10 Units)
Add Fat Malabsorption Stool Test (Fecal Fat) to panel A+C, A, B, or C at a discounted price
Quantitative Microscopic Fecal Fat Score 485 Units (Normal Range is less than 300 Units)
Gluten went from 510 to 31.
Casein went from 33 to 16
Fat malabsorption went from 1433 to 485.
No baseline for eggs or soy. I don't seem to have any negative effects from either at this time.
It was wishful thinking on my part but I really hoped my casein level would improve and it did significantly....but why? I continue to eat cheese and use cream when cooking. I was under the impression that casein caused its own set of problems, perhaps independent from gluten. Maybe not????
I'm happy my fat absorption has improved so much. I mentioned previously that my hair color is getting darker and I suspected it was because I'm absorbing nutrients better. All in all, I THINK I'm happy! Your thoughts???
Deb, I doubt that you can make any comparisons of values between different tests, unless those tests were done with kits from the same lot number, (which isn't likely). With ELISA tests, each batch of test kits is calibrated against a standard control medium, in order to obtain an accurate positive/negative threshold level. That means that the actual numbers cannot be correlated with results from any other lot of tests. Only the pass/fail threshold has any meaning. That caveat doesn't apply to the fat malabsorption test, because that's a completely different type of test. IOW, I believe that it may be valid to compare the fat malabsorption scores, (assuming that you ate roughly the same amount of fat prior to taking both samples).
Look at it this way, anti-gliadin antibodies have a half life of roughly 21 days. That means that if you started with a value of 510, (actually we have no idea what that number was when you adopeted the diet, because you tested it almost a year ago), and you were only following the GF diet for 6 weeks, then your relative anti-gliadin antibody level should have decayed to around 395, (based on a starting value of 510). This year's result was 31, which is only 7.8% of 395, which gives you an idea of the difference in the relative sensitivity of those two ELISA test kit lots. That implies that if you converted the casein result from this year, (by dividing it by 7.8%), that result of 16 would be equivalent to a result of 205, if this year's test kit had the same sensitivity as last year's test. That implies that your casein test result increased by a factor of over 6, compared with last year.
Please don't assume that this math is chiseled in stone, because it includes a lot of assumptions, so it won't hold up to scientific scrutiny, but it can serve to give you a ballpark figure, if you're trying to compare test results from two different lots of ELISA test kits.
It's pretty clear that if you are having no symptoms from the foods that showed those positive test results, you're simply asymptomatic to them. IOW, the reactions within your immune system are ongoing, but you're not experiencing any clinical symptoms, because of them. Don't ask me why. Many celiacs are asymptomatic to gluten. With some asymptomatic cases, the villi of the small intestine are almost totally destroyed, which has to cause a major malabsorption problem, and yet those individuals appear to have no clinical symptoms.
Tex
Look at it this way, anti-gliadin antibodies have a half life of roughly 21 days. That means that if you started with a value of 510, (actually we have no idea what that number was when you adopeted the diet, because you tested it almost a year ago), and you were only following the GF diet for 6 weeks, then your relative anti-gliadin antibody level should have decayed to around 395, (based on a starting value of 510). This year's result was 31, which is only 7.8% of 395, which gives you an idea of the difference in the relative sensitivity of those two ELISA test kit lots. That implies that if you converted the casein result from this year, (by dividing it by 7.8%), that result of 16 would be equivalent to a result of 205, if this year's test kit had the same sensitivity as last year's test. That implies that your casein test result increased by a factor of over 6, compared with last year.
Please don't assume that this math is chiseled in stone, because it includes a lot of assumptions, so it won't hold up to scientific scrutiny, but it can serve to give you a ballpark figure, if you're trying to compare test results from two different lots of ELISA test kits.
It's pretty clear that if you are having no symptoms from the foods that showed those positive test results, you're simply asymptomatic to them. IOW, the reactions within your immune system are ongoing, but you're not experiencing any clinical symptoms, because of them. Don't ask me why.
Many celiacs are asymptomatic to gluten. With some asymptomatic cases, the villi of the small intestine are almost totally destroyed, which has to cause a major malabsorption problem, and yet those individuals appear to have no clinical symptoms.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.
Well, I guess I will just continue on the course I'm on and hope things remain stable and if not, I know what to look at. Thanks, Tex!Hi Deb,
I really don't have much to add. Tex' comments make sense to me. You did have an extremely high gluten antibody level initially, and I am wondering if that caused enough damage to the villi that other foods leaked through and stimulated antibody formation. Perhaps with the villi now healing, the other foods are no longer as much of a problem??? The good news is that you have improved clinically.
But keep in mind that you are at very high risk for multiple food intolerances, given your double DQ1 gene pattern.
Hugs,
Polly
I really don't have much to add. Tex' comments make sense to me. You did have an extremely high gluten antibody level initially, and I am wondering if that caused enough damage to the villi that other foods leaked through and stimulated antibody formation. Perhaps with the villi now healing, the other foods are no longer as much of a problem??? The good news is that you have improved clinically.
But keep in mind that you are at very high risk for multiple food intolerances, given your double DQ1 gene pattern.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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MBombardier
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Deb, our fat malabsorption numbers were just about the same. None of the things I tested at Enterolab showed that I was sensitive to anything. However, based on my celiac gene and my family history, I suspect that the fat malabsorption number means that I was an asymptomatic celiac for many years. The first reaction I had to gluten was about three weeks after I removed it from my diet on the basis of what I read on Dr. Fine's site.-o.
Casein was the same way. I was asymptomatic (only reacting a little now and then to the lactose, I thought) until I had taken it out of my diet for a little while. Then whamm-o.
Casein was the same way. I was asymptomatic (only reacting a little now and then to the lactose, I thought) until I had taken it out of my diet for a little while. Then whamm-o.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss, I think that's what I'm afraid of....if I eliminate some of these foods they will start causing me problems if I ever eat them again. I'm encouraged by my fat absorption improvement and hopeful that's a sign I'm not causing further damage. I will be watching your journey though because I know we have several issues in common. Deb
Deb,
I had a similar experience - that a month-long gluten-free experiment, followed by a little gluten, really made me spectacularly ill. I don't believe, however, that eating gluten prior to that "month off" was benign. I have had so many minor annoyances improve or disappear since being ultra-convinced that gluten intolerance isn't in my head, including things I thought were minor but now believe were the tip of some scary iceberg (fingers crossed that they will continue to improve, even if they don't reverse entirely).
I think that's why celiac disease, and gluten sensitivity of all kinds, winds up being diagnosed so infrequently. It looks like a rash, it looks like a headache, it looks like fatigue (so you think you should sleep better, exercise more, take some supplement...), it looks like 'normal' aches and pains of middle age... I truly wish I had given up gluten pre-MC... let's say 20 years ago. I am sure my health will be better in old age if I keep my dietary program true, but I believe I will never have the full health I could have enjoyed, if I had not incurred gluten damage.
(That sounds a tad grim - I'm actually rather hopeful, generally!)
I had a similar experience - that a month-long gluten-free experiment, followed by a little gluten, really made me spectacularly ill. I don't believe, however, that eating gluten prior to that "month off" was benign. I have had so many minor annoyances improve or disappear since being ultra-convinced that gluten intolerance isn't in my head, including things I thought were minor but now believe were the tip of some scary iceberg (fingers crossed that they will continue to improve, even if they don't reverse entirely).
I think that's why celiac disease, and gluten sensitivity of all kinds, winds up being diagnosed so infrequently. It looks like a rash, it looks like a headache, it looks like fatigue (so you think you should sleep better, exercise more, take some supplement...), it looks like 'normal' aches and pains of middle age... I truly wish I had given up gluten pre-MC... let's say 20 years ago. I am sure my health will be better in old age if I keep my dietary program true, but I believe I will never have the full health I could have enjoyed, if I had not incurred gluten damage.
(That sounds a tad grim - I'm actually rather hopeful, generally!)
I agree with you Sara. I think I would have led a healthier life if I had made the gluten connection a long time ago. I have no intention of ever eating gluten again. What I'm waffling on is the dairy (and I guess soy and eggs that I just learned about). I haven't convinced myself it is a problem especially in light of the fact my absorption level has improved significantly.