Visit the Microscopic Colitis Foundation Website
I haven't been around here very much lately because I have been spending more time at the celiac website. Tex helped me interpret my endoscopy results and I don't have MC, though I thought I did.
I just got back my test results from enterolab and I am shocked and really unsure about what to do. I was so sure I had a gluten problem.
So here are my results:
C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal Anti-ovalbumin (chicken egg) IgA: 2 Units
Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA: 6 Units
Fecal Anti-soy IgA: 9 Units
Gluten Sensitivity Stool Test
Fecal Anti-gliadin IgA: 6 Units
Cow's Milk Protein Sensitivity Stool Test
Fecal Anti-casein (cow's milk) IgA: 8 Units
I have had all the typical symptoms of gluten intolerance. Poor growth as a child, late puberty, nausea, stomach problems, frequent pooping, anxiety, depression, weight loss, fatigue, weakness, insomnia.
My blood and biopsy tests came back negative. I was so sure I have gluten intolerance. What do I do now? I have been eating gluten free for a month and have noticed feeling better. I have been sick for the last few days which I attribute to geting cc from taco bell.
My 21 month old daughter tested positive for gluten sensitivity (18 units).
I am beside myself. What do I do? Tex, if you are around I could really use some advice. I was hanging on to the gluten sensitivity thing because if that isn't my problem then I don't have anything else to try. There is nothing else I can do. I know I can make IgA because my blood test indicated that I could make IgA. Should I just keep eating gluten free and see? I had been gluten free for 3 weeks when I did the testing. Could I still have a wheat allergy and not be gluten sensitive? I don't know what to do.
I really need some help with my enterolab results.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
I certainly don't have the broad based knowledge that Tex has, but I'll put in my 2 cents, for what it's worth. I had the severe diarrhea, fatigue, etc. for several months. When I had my colonoscopy, the GI asked if I was taking fish oil as it can sometimes cause diarrhea. I said yes, but that I had been taking them long before I had any symptoms so that wasn't it. But that got me thinking about all the supplements and herbal remedies I was taking, and I decided to just quit them all (except the multi-vitamin and calcium). This was several weeks before I got the results back from the colonoscopy and learned that I had LC, so it was just dumb luck that I focused on the supplements rather than gluten. Within just a few days the diarrhea improved tremendously, and now a month later, I feel about 95% back to normal. The debilitating fatigue has lifted and I feel pretty good. So just maybe there are other factors that can sensitize besides the common ones. I did decide to do a test of going gluten free to see if I would improve more, but I can't say that I notice much of a difference after 5 days. However, the Enterolab test will tell the tale, although I just now received their sample container and will mail it back shortly, so don't have the results. But don't give up in dispair! I can appreciate that you were counting on gluten being the problem and that if you eliminated it from your diet all would be well. Now you are back to the beginning. I'll bet others here will have some suggestions based on their experiences too!
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
NMM,
Wow! Your post couldn't have surprised me any more, if you had told me that I was going to be shipped to the moon, first thing tomorrow morning.
I'm not sure what to make of all that. My first guess would have been that you are IgA deficient, but you preempted that guess with your last paragraph. I gather that you did not get the gene test. That might be interesting information to see, in view of your other test results, and the fact that your daughter tested positive to gluten sensitivity.
Yes and no.
Here are my thoughts: The tests used by Enterolab are very specific. They do not, for example, test for antibodies to rye, barley, oats, or wheat "in total". What they test for is one tiny fraction of wheat protein, that has been shown to be problematic in the vast majority of people with gluten sensitivity. IOW, they test for antibodies to a specific gliadin peptide, that is known to cause a reaction in most people who are gluten sensitive. At least, I think that this is the case. Their tests are proprietary, so no one outside of the lab knows the exact mechanisms by which they work. I do know for a fact that their gluten sensitivity stool test for fecal anti-gliadin IgA, is specific to wheat, and will not detect any sensitivities to rye, barley, oats, etc. In fact, there are no tests for antibodies to any of the proteins in rye, barley, nor oats, and that includes the blood tests - none of them will detect antibodies to rye, barley, or oats.
It is simply assumed that anyone who is sensitive to certain gliadins in wheat gluten, will also be sensitive to certain peptides in rye, barley, and/or oats, because of their amino acid sequence similarities to the problematic peptides, (amino acid sequences), in wheat gluten. There are several gliadin peptides that have been "discovered", and shown to trigger gluten sensitive enteropathy, in individuals who are susceptible, (I can site references if you are interested), and it is suspected/known that there are probably many more as-yet-undiscovered peptides which can trigger reactions. Not only are there additional problematic gliadin peptides waiting to be discovered, but there are almost certainly many glutenin peptides which trigger reactions in susceptible individuals. Gluten is composed of gliadin fractions, and glutenin fractions, both of which are vital to the bread-making industry, but as far as I am aware, so far at least, only a few of the gliadins have been investigated and defined, in relation to gluten sensitive enteropathy. The glutenins are largely un-researched, from a digestive system sensitivity perspective.
I am guessing, (and this is an educated guess, not just a WAEG ), that the enteroloab test for anti-gliadin antibodies, only tests for antibodies to one specific gliadin peptide, (presumably the most common one). That implies that if you are one of those rare individuals who happen to be intolerant to other reactive gliadins, or glutenins, but not that one specific peptide on which their test is based, then you would get a negative test result, while still being intolerant to other wheat peptides.
The reason why the tests are done this way, is because antibody testing is very specific, and each protein fraction would require a completely different test, (if it were desired to test for them), which would, for all practical purposes, result in a very expensive test, if one tried to test for 2, or 3, or more of the different protein fractions present. In wheat alone, for example, there are probably dozens of peptides which can cause a reaction in susceptible individuals, and most of them are still unidentified. Because of that, for each type of food, the peptide which is most likely to cause a reaction in most susceptible individuals, is the one selected as the basis of the test for that particular food.
I hope I haven't just confused the issue here, and if I have, then please ask me to clarify this, based on specific questions that you have about it. That same caveat applies to the other tests as well. For example, the fecal anti-ovalbumin, (chicken egg), test, only tests for one specific peptide in the egg white. It does not test for any of the less significant protein fractions in the albumin, nor does it test for any of the protein fractions in the yolk. This works for most people, because most people are going to be intolerant to the main protein fraction in the albumin, if they are intolerant to eggs in general.
Remember that I'm not a doctor, and much/most of this is just my opinion, based on the available facts.
Tex
Wow! Your post couldn't have surprised me any more, if you had told me that I was going to be shipped to the moon, first thing tomorrow morning.
I'm not sure what to make of all that. My first guess would have been that you are IgA deficient, but you preempted that guess with your last paragraph. I gather that you did not get the gene test. That might be interesting information to see, in view of your other test results, and the fact that your daughter tested positive to gluten sensitivity.
no-more-muffins wrote:Could I still have a wheat allergy and not be gluten sensitive?
Yes and no.
Here are my thoughts: The tests used by Enterolab are very specific. They do not, for example, test for antibodies to rye, barley, oats, or wheat "in total". What they test for is one tiny fraction of wheat protein, that has been shown to be problematic in the vast majority of people with gluten sensitivity. IOW, they test for antibodies to a specific gliadin peptide, that is known to cause a reaction in most people who are gluten sensitive. At least, I think that this is the case. Their tests are proprietary, so no one outside of the lab knows the exact mechanisms by which they work. I do know for a fact that their gluten sensitivity stool test for fecal anti-gliadin IgA, is specific to wheat, and will not detect any sensitivities to rye, barley, oats, etc. In fact, there are no tests for antibodies to any of the proteins in rye, barley, nor oats, and that includes the blood tests - none of them will detect antibodies to rye, barley, or oats.
It is simply assumed that anyone who is sensitive to certain gliadins in wheat gluten, will also be sensitive to certain peptides in rye, barley, and/or oats, because of their amino acid sequence similarities to the problematic peptides, (amino acid sequences), in wheat gluten. There are several gliadin peptides that have been "discovered", and shown to trigger gluten sensitive enteropathy, in individuals who are susceptible, (I can site references if you are interested), and it is suspected/known that there are probably many more as-yet-undiscovered peptides which can trigger reactions. Not only are there additional problematic gliadin peptides waiting to be discovered, but there are almost certainly many glutenin peptides which trigger reactions in susceptible individuals. Gluten is composed of gliadin fractions, and glutenin fractions, both of which are vital to the bread-making industry, but as far as I am aware, so far at least, only a few of the gliadins have been investigated and defined, in relation to gluten sensitive enteropathy. The glutenins are largely un-researched, from a digestive system sensitivity perspective.
I am guessing, (and this is an educated guess, not just a WAEG
), that the enteroloab test for anti-gliadin antibodies, only tests for antibodies to one specific gliadin peptide, (presumably the most common one). That implies that if you are one of those rare individuals who happen to be intolerant to other reactive gliadins, or glutenins, but not that one specific peptide on which their test is based, then you would get a negative test result, while still being intolerant to other wheat peptides.The reason why the tests are done this way, is because antibody testing is very specific, and each protein fraction would require a completely different test, (if it were desired to test for them), which would, for all practical purposes, result in a very expensive test, if one tried to test for 2, or 3, or more of the different protein fractions present. In wheat alone, for example, there are probably dozens of peptides which can cause a reaction in susceptible individuals, and most of them are still unidentified. Because of that, for each type of food, the peptide which is most likely to cause a reaction in most susceptible individuals, is the one selected as the basis of the test for that particular food.
I hope I haven't just confused the issue here, and if I have, then please ask me to clarify this, based on specific questions that you have about it. That same caveat applies to the other tests as well. For example, the fecal anti-ovalbumin, (chicken egg), test, only tests for one specific peptide in the egg white. It does not test for any of the less significant protein fractions in the albumin, nor does it test for any of the protein fractions in the yolk. This works for most people, because most people are going to be intolerant to the main protein fraction in the albumin, if they are intolerant to eggs in general.
The big question is, "How do you feel on the GF diet?" If you are feeling better, as you indicated, then that's pretty strong evidence that you may be gluten sensitive, (bearing in mind that it can take several months to a year or more for the diet to completely eliminate your symptoms). Otherwise, as Rosie said, something else might be going on. If I were in your shoes, and the GF diet helps, then I believe that I would consider myself to be a very unique individual, who may be gluten sensitive, even though all the tests are negative. You might e-mail Dr. Fine, and ask for his opinion on this, but I believe that he will tell you that if you feel noticeably better by avoiding gluten, then you are gluten-sensitive, and you should avoid it, regardless of what the test results show. The ultimate test for gluten sensitivity, is whether or not you feel better by excluding it from your diet. That test is always 100% reliable. If the diet doesn't seem to bring any benefits, then you may need to look at the possibility of a small intestinal bacterial overgrowth, (SIBO), Candida overgrowth, or even possibly parasites.no-more-muffins wrote:I don't know what to do.
Remember that I'm not a doctor, and much/most of this is just my opinion, based on the available facts.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
I just got off the phone with the people at enterolab and they suggested that even though I may not be IgA deficient I could just be a low producer of IgA. I am searching for my test results that have the ranges. The person I talked to said she had never, ever heard of anyone who had a 0 on their ttG test, and that could indicate a low IgA. I'll be back to report when I find out more.
NMM
You had a zero on an anti-tissue transglutaminase test? I agree, that's probably impossible for anyone who is capable of normal IgA production. Everyone shows some atibodies in that test, (assuming they produce IgA normally, that is). That could mean that none of your test results are valid.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Yes, my ttG was a big fat 0. I think I must be IgA deficient. The range of normal is 68-378. Mine was 115. Even though it is in the normal range I just think that something is strange. She said it is very suspicious that ttG would be 0, and that I may just never, ever produce enough IgA to get a positive result on the test. Since my baby is positive, I have been doing better without gluten and my results seem wonky, the only thing I can do is keep trying the diet and eliminate the casein and soy. My numbers were 8 and 9 and if my IgA is low it those are probably a problem too.
Do you think that is the right course? Can I say FRUSTRATING???
Do you think that is the right course? Can I say FRUSTRATING???
NMM
I believe that's what I would do, if I were in your shoes. The GF diet is a healthy diet, so there's no reason not to follow it. Some people say that you should not limit your diet if you don't have to, but to them I point out that Celiacs have the last laugh - they live longer than the general population. That has to be because of a healthier diet. Also, if you are going to raise a daughter on a GF diet, it will be easier if you eat that way yourself. If you can persuade the rest of the household to go GF, your battle against cross-contamination will be won, because there won't be any gluten around to do any cross-contaminating.no-more-muffins wrote:Do you think that is the right course? Can I say FRUSTRATING???
Non-celiac gluten sensitivity is frustrating enough as it is, but when the tests don't even work correctly - yep, that's mighty frustrating, no doubt about it.
We have at least one other member who is IgA deficient, I believe, Lyn. IgA deficiency is inherited, by the way. It can be inherited as either a dominant or a recessive trait.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Tex, I forgot to say that your explanation of the other proteins made perfect sense and that could be the explanation as well. Thanks for taking the time to explain that. I was really hoping for a clear cut answer with the enterolab testing, but again, I am disappointed.
I'd like to get my other kids tested as well. I am thinking that I might do the total IgA and antigliadin blood tests with them. Our insurance will pay for that plus, if I have IgA problems they might too. If those come back normal I will probably do the enterolab testing with them. I think we are going to probably have to be gluten free at our house.
Mary Beth, what were your dairy and gluten results? (Was your soy result 9 as well?) I see that you are intolerant to gluten and casein as well. I had never really thought much about soy. My symptoms weren't totally gone with 1 month of GF eating but I my nausea had gotten much better, I noticed more energy and I wasn't nearly as anxious. Since my Taco Bell incident I have been very nauseated, anxious, had a decreased appetite, more frequent BMs more tired and have had difficulty sleeping. I am trying to think about my diet and see if I had been not eating much soy at all. I have been eating mostly whole foods so it is very possible that I really wasn't eating much soy. I attribute the sickness to Taco Bell, but I didn't get sick until the next day so I suppose it could have been from something else. I did eat 1 chip (which I spat out) that had been fried in contaminated oil. I suppose that would be enough to make me sick for 3 days.
I'd like to get my other kids tested as well. I am thinking that I might do the total IgA and antigliadin blood tests with them. Our insurance will pay for that plus, if I have IgA problems they might too. If those come back normal I will probably do the enterolab testing with them. I think we are going to probably have to be gluten free at our house.
Mary Beth, what were your dairy and gluten results? (Was your soy result 9 as well?) I see that you are intolerant to gluten and casein as well. I had never really thought much about soy. My symptoms weren't totally gone with 1 month of GF eating but I my nausea had gotten much better, I noticed more energy and I wasn't nearly as anxious. Since my Taco Bell incident I have been very nauseated, anxious, had a decreased appetite, more frequent BMs more tired and have had difficulty sleeping. I am trying to think about my diet and see if I had been not eating much soy at all. I have been eating mostly whole foods so it is very possible that I really wasn't eating much soy. I attribute the sickness to Taco Bell, but I didn't get sick until the next day so I suppose it could have been from something else. I did eat 1 chip (which I spat out) that had been fried in contaminated oil. I suppose that would be enough to make me sick for 3 days.
NMM,
My gluten was 18, soy 9 and dairy 10 - none were very high, but I was very symptomatic. Initially I noticed a big improvement when I first went GF but after a period of time I got worse, and figured it was soy - I did the test anyway, just see what my level was, but I knew soy was making me worse. Dairy didn't affect D, but it gave me headaches.
Soy is in everyhting - just read the labels. I recently discovered that my problem with soy is most likely lecithin and not soy protein, so that may be why my level was only 9 - Enterolab didn't test for soy lecithin.
It took a few months for my intolerances to unfold. It seemed that once I deleted something, I felt better for a while, but then became aware of another problem.
MB
My gluten was 18, soy 9 and dairy 10 - none were very high, but I was very symptomatic. Initially I noticed a big improvement when I first went GF but after a period of time I got worse, and figured it was soy - I did the test anyway, just see what my level was, but I knew soy was making me worse. Dairy didn't affect D, but it gave me headaches.
Soy is in everyhting - just read the labels. I recently discovered that my problem with soy is most likely lecithin and not soy protein, so that may be why my level was only 9 - Enterolab didn't test for soy lecithin.
It took a few months for my intolerances to unfold. It seemed that once I deleted something, I felt better for a while, but then became aware of another problem.
MB
Tex did well remembering I have low IgA. Our lab range is different, but if I were to convert it to your range my level would be about 5. I also have low IgG. As a result I get diagnosed with CVID - Common Variable Immune Deficiency.
The IgA you have quoted is clearly within the normal range for your lab, so I'd be suprised if that was the problem. If you do get a blood test, get a full immunoglobulin test - IgA, IgG, IgM, especially.
Have you considered the possibility there was a real problem with the test? They might be able to re-run it for you to double check. If a score of 0 is unbelievable, why believe it? Tests do go wrong sometimes. Labs normally do their own QA to pick up obvious errors, but some get through. If the person you spoke to was thorough she would already have it back to the lab for retesting.
If the GF diet helps, then stick to it. It takes time to get used to avoiding it, and time to work out how to tell you have been glutened (or caseined).
Good luck
Lyn
The IgA you have quoted is clearly within the normal range for your lab, so I'd be suprised if that was the problem. If you do get a blood test, get a full immunoglobulin test - IgA, IgG, IgM, especially.
Have you considered the possibility there was a real problem with the test? They might be able to re-run it for you to double check. If a score of 0 is unbelievable, why believe it? Tests do go wrong sometimes. Labs normally do their own QA to pick up obvious errors, but some get through. If the person you spoke to was thorough she would already have it back to the lab for retesting.
If the GF diet helps, then stick to it. It takes time to get used to avoiding it, and time to work out how to tell you have been glutened (or caseined).
Good luck
Lyn
I think I would ask for a re-do of the tests if the result was unheard of. Might be best to try to get through to Dr. Fine himself. Enterolab does make mistakes just as does any other lab, even though their stool tests are more sensitive. I think they admit to an error rate of about 5 %.
Most labs will try to correct an error if they make one. This just happens from time to time.
Can't blame you for being frustrated.
Are you perhaps lactose intolerant? That's not all that uncommon for a true celiac or for many of us on this site, most likely. I used to get two reactions after any dairy before I removed casein, the first within a couple of hours for the lactose, and the second 24 hours later.
By the way, I noticed that you apparently think you would get a reaction shortly after ingesting an allergen. Actually, it's usually a much longer period of time, like a day or even two for some people with a sensitivity. If you notice a reaction the next day, it just may be that that's the transit time for food through your gut, and that's the time it will take for you to notice any food reactions. After you figure out your transit time, it gets much easier to count back however many hours it was, and remember what you had to eat at that time.
I would be inclined to think you had some other problem other than gluten sensitivity if it weren't for the fact that your daughter tested positive. I suppose it could be just an unlikely coincidence. Have you been checked extensively for things that might cause you to have these symptoms?
Yours, Luce
Most labs will try to correct an error if they make one. This just happens from time to time.
Can't blame you for being frustrated.
Are you perhaps lactose intolerant? That's not all that uncommon for a true celiac or for many of us on this site, most likely. I used to get two reactions after any dairy before I removed casein, the first within a couple of hours for the lactose, and the second 24 hours later.
By the way, I noticed that you apparently think you would get a reaction shortly after ingesting an allergen. Actually, it's usually a much longer period of time, like a day or even two for some people with a sensitivity. If you notice a reaction the next day, it just may be that that's the transit time for food through your gut, and that's the time it will take for you to notice any food reactions. After you figure out your transit time, it gets much easier to count back however many hours it was, and remember what you had to eat at that time.
I would be inclined to think you had some other problem other than gluten sensitivity if it weren't for the fact that your daughter tested positive. I suppose it could be just an unlikely coincidence. Have you been checked extensively for things that might cause you to have these symptoms?
Yours, Luce
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
I haven't been checked for any other intolerances yet.
My total IgA blood test was done back in June. I have been GF for a month now so my ttG wouldn't be accurate anyway. I guess I could do a total IgA again to see how that came out.
How would I go about contacting Dr. Fine? I would like to email him with my specific results because I think they are strange and I could use his advice.
Thanks for all your responses.
I am pretty sure my sickness over the last few days has been from getting glutened. That was the only thing that I had eliminated and then possibly got contaminated with.
My total IgA blood test was done back in June. I have been GF for a month now so my ttG wouldn't be accurate anyway. I guess I could do a total IgA again to see how that came out.
How would I go about contacting Dr. Fine? I would like to email him with my specific results because I think they are strange and I could use his advice.
Thanks for all your responses.
I am pretty sure my sickness over the last few days has been from getting glutened. That was the only thing that I had eliminated and then possibly got contaminated with.
NMM
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
I feel your frustration no more muffins. Modern testing may not be able to help you with your unique situation. If you are responding so well to the gluten free diet then I would listen to your body. I went gluten free before my testing so I messed everything up and the gluten free challenge made me horribly miserable. I believe I am a true celiac (will get Dr. Lewey's opinion soon) but will never test positive on any blood test now (will never try to challenge again) and luckily my enterolab results gave me enough validation especially the gene test with the two main genes. If I were you, I would do the gene test because if you carry any of the genes for celiac or gluten intolerance, and the fact that your daughter was positive with enterolab results added with your positive dietary response, then that would be answer enough for me. Also getting glutened over the cc is telling you that your body does not like gluten for some reason being allergy, gluten sensitivity, celiac, mc whatever the reason, your body likes being gluten free. keep us posted!
Kathy
Try reaching Dr. Fine at info@intestinalhealth.org