I finally broke down and ordered the Enterolab A+C tests. The results are not in on the 11 foods, but the 4 main foods results came back as follows:
Fecal Anti-gliadin IgA 180 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 56 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 35 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 31 Units (Normal Range is less than 10 Units)
Fat Malabsorption Stool Test (Fecal Fat)
Quantitative Microscopic Fecal Fat Score 293 Units (Normal Range is less than 300 Units)
I knowingly ate all 4 foods before the test, because I wanted to know if I was sensitive to the foods, but I have been on a 98-99% strict gluten free, dairy free, egg free diet for several years. I looked back at other folks' results and these numbers seem a little high. Is something off here, or do I just need to be more careful in my diet? Note: I have been tested every way possible for celiac (blood test, genetic test and scope) and despite having kids with celiac, I do not have it. I have, however, tested positive (skin prick) for eggs.
Enterolab "Big 4" numbers seem high
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Hi Fern,
IMO, the reason why those numbers are relatively high is because of this:
According to Dr. Fine, the longer we are exposed to foods that cause us to produce antibodies, the higher those antibody levels climb. IOW, your numbers are relatively high because you have been reacting to those foods for years, and your diet has allowed them to either continue to remain high, or continue to climb.
IMO, you have to be much more careful with your diet, in order to bring those numbers down. Please don't feel like the Lone Ranger, because we all have to be extremely vigilant in order to prevent our diet from being cross-contaminated with traces of foods that cause us to react. A few years ago, because I was beginning to have some symptoms again, I sent a sample to EnteroLab and discovered that my suspicions were on target — my food was being cross-contaminated because someone else in the house was using flour when preparing their own food. My anti-gliadin antibody level was already up to 62, even though I thought that I was avoiding gluten.
Gluten is everywhere, and we have to always be on our toes in order to avoid it.
Have you ever been tested to see if you have a celiac gene? Without a celiac gene, it's almost impossible to develop celiac disease (complete with villus atrophy), but that's sort of a moot point, because non-celiac gluten sensitivity can cause all of the same symptoms (other than total villus atrophy). EnteroLab offers a gene test based on DNA material collected on a cheek swab. The last time I checked, the test was 150 bucks, less than half the cost of similar tests offered by other labs. They use the test developed by the Red Cross, so it is absolutely reliable.
If you have a celiac gene, then the absence of diagnostic markers simply means that the disease just hasn't yet fully developed. The problem with the celiac diagnostic criteria is that celiac disease can only be officially diagnosed after it is fully developed. The existing diagnostic criteria will not allow diagnosis at any other stage of development, unfortunately. That's why the average length of time from the first onset of symptoms, until an official diagnosis of celiac disease is confirmed, is still 9.7 years in this country, according to the latest published statistics. IOW, the celiac testing methods leave a lot to be desired, to say the least.
Tex
IMO, the reason why those numbers are relatively high is because of this:
With only 98–99 % compliance, your antibody levels never had a chance to decline very far before another exposure boosted them higher again. Most food antibodies have a half-life of approximately 6 days, so antibody levels to those foods decline relatively rapidly (and as you can see, your test results reflect that (your antibody levels were much lower for casein, egg, and soy, compared with gluten). However, anti-gliadin antibodies (due to gluten) have a half-life of about 120 days. That means that it takes a very long time for those antibody levels to decline. All it takes is an occasional tiny dose of gluten to kick the numbers higher, and with a less-than-100 % compliance diet, they never had much time to decay before another re-exposure occurred.but I have been on a 98-99% strict gluten free, dairy free, egg free diet for several years
According to Dr. Fine, the longer we are exposed to foods that cause us to produce antibodies, the higher those antibody levels climb. IOW, your numbers are relatively high because you have been reacting to those foods for years, and your diet has allowed them to either continue to remain high, or continue to climb.
IMO, you have to be much more careful with your diet, in order to bring those numbers down. Please don't feel like the Lone Ranger, because we all have to be extremely vigilant in order to prevent our diet from being cross-contaminated with traces of foods that cause us to react. A few years ago, because I was beginning to have some symptoms again, I sent a sample to EnteroLab and discovered that my suspicions were on target — my food was being cross-contaminated because someone else in the house was using flour when preparing their own food. My anti-gliadin antibody level was already up to 62, even though I thought that I was avoiding gluten.
Gluten is everywhere, and we have to always be on our toes in order to avoid it.Have you ever been tested to see if you have a celiac gene? Without a celiac gene, it's almost impossible to develop celiac disease (complete with villus atrophy), but that's sort of a moot point, because non-celiac gluten sensitivity can cause all of the same symptoms (other than total villus atrophy). EnteroLab offers a gene test based on DNA material collected on a cheek swab. The last time I checked, the test was 150 bucks, less than half the cost of similar tests offered by other labs. They use the test developed by the Red Cross, so it is absolutely reliable.
If you have a celiac gene, then the absence of diagnostic markers simply means that the disease just hasn't yet fully developed. The problem with the celiac diagnostic criteria is that celiac disease can only be officially diagnosed after it is fully developed. The existing diagnostic criteria will not allow diagnosis at any other stage of development, unfortunately. That's why the average length of time from the first onset of symptoms, until an official diagnosis of celiac disease is confirmed, is still 9.7 years in this country, according to the latest published statistics. IOW, the celiac testing methods leave a lot to be desired, to say the least.
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 thorough response, Tex. You are always so generous with your time on this forum! 
I have been tested for the celiac gene - twice. All four of my kids are perfect genetic storms for Type 1 diabetes and celiac. One of them has 4 autoimmune diseases. I keep a gluten free household and have believed for years that gluten is the root of all evil. But, since I have never noticed a reaction from it (other than an acne breakout), I have not been vigilant about what others serve me.
Honestly, when my first son was diagnosed with celiac, I thought I had found the reason behind my D. I was amazed that the blood test showed nothing, and pursued the genetic testing by way of an NIH diabetes study. That determined that the diabetes gene that I carry is not the same one that is the celiac gene. When I had the colonoscopy in the Fall that resulted in my MC diagnosis, the GI doc was certain I had celiac and ordered the genetic test and the blood test as well as doing an endoscopy. All negative. I just knew that this test would be negative, too, so I was blown away at the high number. Not more being polite for me! I well demand a new salad if mine comes with croutons (and cheese)!
Soy was really the only thing on the list that I occasionally ate. Back to the basics for me.
Especially since I just got the second half of the testing. Is there an opposite to IGA deficient? Could I be IGA PROficient? It would be nice to be proficient at something….
Should I post that in a new message or here?
I have been tested for the celiac gene - twice. All four of my kids are perfect genetic storms for Type 1 diabetes and celiac. One of them has 4 autoimmune diseases. I keep a gluten free household and have believed for years that gluten is the root of all evil. But, since I have never noticed a reaction from it (other than an acne breakout), I have not been vigilant about what others serve me.
Honestly, when my first son was diagnosed with celiac, I thought I had found the reason behind my D. I was amazed that the blood test showed nothing, and pursued the genetic testing by way of an NIH diabetes study. That determined that the diabetes gene that I carry is not the same one that is the celiac gene. When I had the colonoscopy in the Fall that resulted in my MC diagnosis, the GI doc was certain I had celiac and ordered the genetic test and the blood test as well as doing an endoscopy. All negative. I just knew that this test would be negative, too, so I was blown away at the high number. Not more being polite for me! I well demand a new salad if mine comes with croutons (and cheese)!
Soy was really the only thing on the list that I occasionally ate. Back to the basics for me.
Especially since I just got the second half of the testing. Is there an opposite to IGA deficient? Could I be IGA PROficient? It would be nice to be proficient at something….
Should I post that in a new message or here?
So you're saying that you don't have either the DQ2 or DQ8 gene. Remember that doctors don't have the gene connection for celiac disease completely figured out. If we add up all the numbers, we find that a small percentage of people apparently have an undocumented celiac gene, because they develop celiac disease even though they do not have either of the common celiac genes (DQ2 and DQ8). Likewise, there are an increasing number of doctors (open-minded doctors) who recognize the problems with the celiac diagnostic criteria, and who are willing to diagnose celiac disease based on a positive response to a gluten-free diet (even in the absence of positive serology and/or villous atrophy).
It's also possible that you may have developed a tolerance for gluten. Many celiacs are asymptomatic, but apparently they develop antibodies to gluten, so the potential for digestive system damage is intact. I can tolerate casein, for example, and eating any and all dairy products causes no noticeable digestive symptoms. But I produce antibodies to casein, so I totally avoid all dairy products, and doing so seems to eliminate the osteoarthritis symptoms that I had been having.
I suppose it's possible to produce excess amounts of immunoglobulin A. Have you ever had the blood test to rule out selective IgA deficiency? Your actual test result numbers for IgA1 and IgA2 might be above the normal range. I've never heard of anyone who produces excess IgA, but since there is such a thing as a normal range for each of those, then it's certainly at least theoretically possible that one might produce amounts above those ranges.
You're very welcome.
Tex
It's also possible that you may have developed a tolerance for gluten. Many celiacs are asymptomatic, but apparently they develop antibodies to gluten, so the potential for digestive system damage is intact. I can tolerate casein, for example, and eating any and all dairy products causes no noticeable digestive symptoms. But I produce antibodies to casein, so I totally avoid all dairy products, and doing so seems to eliminate the osteoarthritis symptoms that I had been having.
I suppose it's possible to produce excess amounts of immunoglobulin A. Have you ever had the blood test to rule out selective IgA deficiency? Your actual test result numbers for IgA1 and IgA2 might be above the normal range. I've never heard of anyone who produces excess IgA, but since there is such a thing as a normal range for each of those, then it's certainly at least theoretically possible that one might produce amounts above those ranges.
You're very welcome.
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 believe you are right, Tex. My understanding is that current research for diabetes is focusing on a constellation of genes rather than just one or two. I'm sure celiac is the same. There are probably more combinations than they have discovered thus far. From now on I will claim celiac status and be vigilant about what I put in my mouth.
That is interesting about the dairy. After I started "Eat to Live", I noticed that any dairy intake resulted in bone pain in my thighs. I usually get bone pain just before I get the flu, so I would think I was getting sick and be surprised when I didn't. I finally put 2 and 2 together and realized that dairy was the cause. I avoid it like the plague.
When I went for skin prick allergy testing several years ago, I reacted to just about everything and ended up getting an epipen in the office. But interestingly, when I was doing "Eat to Live" religiously, I did not have environmental allergies. I wonder if it was all the folate and phyto nutrients that made my immune system calm down? Anyway, my immune system seems to be like a dog that crosses the line from protective to aggressive.
That is interesting about the dairy. After I started "Eat to Live", I noticed that any dairy intake resulted in bone pain in my thighs. I usually get bone pain just before I get the flu, so I would think I was getting sick and be surprised when I didn't. I finally put 2 and 2 together and realized that dairy was the cause. I avoid it like the plague.
When I went for skin prick allergy testing several years ago, I reacted to just about everything and ended up getting an epipen in the office. But interestingly, when I was doing "Eat to Live" religiously, I did not have environmental allergies. I wonder if it was all the folate and phyto nutrients that made my immune system calm down? Anyway, my immune system seems to be like a dog that crosses the line from protective to aggressive.
I have peripheral neuropathy, caused by (IMO) too many years of untreated gluten sensitivity. Because of my symptoms (balance problems, gait issues, no reflexes in my ankles and minimal reflexes in my knees, loss of ability to feel pain in my feet, etc., I was diagnosed almost 5 years ago with Parkinson's disease. I couldn't convince the neurologist that my symptoms were caused by gluten damage, because neurological damage as a result of gluten sensitivity (which is well documented in the literature) wasn't even on his radar. He gave me some samples of Metanx, which I have been taking ever since. After taking it for almost a year, my symptoms had improved sufficiently that a second neurologist (who also had never heard of gluten causing peripheral neuropathy), agreed with me that I did not have Parkinson's (but she couldn't explain my symptoms, because she wasn't aware of gluten-induced peripheral neuropathy).
As you are probably well aware, peripheral neuropathy is a common side effect of diabetes, and Metanx is prescribed to treat the condition. Metanx is a combination of the active forms of vitamins B-12, B-9, and B-6. IOW, the folic acid in Metanx is in the active form of L-methylfolate, the B-6 is in the active form of pyridoxal 5′-phosphate, and the B-12 is in the active form of methylcobalamin. This supplies the vitamins in a form that the body can use even in cases where the body's ability to convert vitamins into the active form is compromised). And yes, in addition to treating peripheral neuropathy and endothelial dysfunction (which is a vascular problem associated with inflammation-based syndromes), Metanx also seems to reduce common environmental allergy symptoms.
The immune system switching that occurs when the immune system goes from protective to aggressive, is controlled by the vitamin D receptor issues that were discussed in the thread at the following link, in case you missed it. It's a long thread (4 pages), but it contains a lot of good information about the way that the immune system shifts gears (and why it sometimes fails to shift gears when it should).
Paging Tex - re mast cells
Tex
As you are probably well aware, peripheral neuropathy is a common side effect of diabetes, and Metanx is prescribed to treat the condition. Metanx is a combination of the active forms of vitamins B-12, B-9, and B-6. IOW, the folic acid in Metanx is in the active form of L-methylfolate, the B-6 is in the active form of pyridoxal 5′-phosphate, and the B-12 is in the active form of methylcobalamin. This supplies the vitamins in a form that the body can use even in cases where the body's ability to convert vitamins into the active form is compromised). And yes, in addition to treating peripheral neuropathy and endothelial dysfunction (which is a vascular problem associated with inflammation-based syndromes), Metanx also seems to reduce common environmental allergy symptoms.
The immune system switching that occurs when the immune system goes from protective to aggressive, is controlled by the vitamin D receptor issues that were discussed in the thread at the following link, in case you missed it. It's a long thread (4 pages), but it contains a lot of good information about the way that the immune system shifts gears (and why it sometimes fails to shift gears when it should).
Paging Tex - re mast cells
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.