Hi all! Long time; no write. Busy with snow clean-up here, and we sure hope its over for awhile. I wanted to share Jackson's (3 1/2) test results with you all. We are sad but not surprised, and of course grateful that we've been eating gluten, dairy & soy free for 2 years...
These are my questions: Since I am a double DLQ, but Jackson has one "celiac + gluten sensitive" gene & one "non-celiac + gluten-sensitive" gene, does that mean that my husband contributed the celiac gene?
Jackson's number Anti-Gliadan was much much higher than mine, but the other numbers are comparable. I know that the actual numbers aren't supposed to be of significance...
As for me, with the exception of a couple of bad months, my symptoms have been mostly controlled through avoiding not only gluten, soy & dairy, but also my other allergens (lettuce, celery, broccoli, squash, peas, corn, orange, watermelon, hazelnut, mustard). Being 9 months post-partum and my periods having returned, I'm excited to be feeling pretty well! That was not the case after my first son's birth & my menstrual cycle's returning. That event seemed to be a HUGE trigger, and each month the GI symptoms were near unbearabe. This time, I think strict diet is the key.
Incidentally, I did try a piece of yogurt cheese last week as a test & felt awful (gut felt bound; constipated), so it was great to see a clear connection! No thanks, dairy!
Here's Jackson's information. Tex, feel free to add it to the database. Any thoughts welcome...
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA: 80 Units
Fecal Anti-tissue Transglutaminase IgA: 32 Units
Quantitative Microscopic Fecal Fat Score: Less than 300 Units
Fecal Anti-casein (cow's milk) IgA: 13 Units
HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0502
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)
C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal Anti-ovalbumin (chicken egg) IgA: 7 Units
Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA: 7 Units
Fecal Anti-soy IgA: 18 Units
Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.
Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one 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 a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.
Interpretation of Fecal Anti-ovalbumin (chicken egg) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation of Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation of Fecal Anti-soy IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
My son's Enteolab results & an update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My son's Enteolab results & an update
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Hi Kimberley,
Hmmmmm. That is bad news, but more than that - you've got me puzzled. How did he test positive, if he's been eating GF, CF, SF, for 2 years? It's not impossible for gluten antibodies to show up in a stool test, 2 years after being eliminated from the diet, but casein and soy antibodies should dissipate fairly rapidly.
I'm certainly no geneticist, but if I remember my course work correctly, yes, he would have had to receive that celiac gene from his father, since you don't have a copy of it. I see that his genes happen to be identical to mine.
It's good to hear that you have your symptoms under control, again. Thanks, I'll add these results to the database.
Tex
Hmmmmm. That is bad news, but more than that - you've got me puzzled. How did he test positive, if he's been eating GF, CF, SF, for 2 years? It's not impossible for gluten antibodies to show up in a stool test, 2 years after being eliminated from the diet, but casein and soy antibodies should dissipate fairly rapidly.
I'm certainly no geneticist, but if I remember my course work correctly, yes, he would have had to receive that celiac gene from his father, since you don't have a copy of it. I see that his genes happen to be identical to mine.
It's good to hear that you have your symptoms under control, again. Thanks, I'll add these results to the database.
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 don't know, Tex. And his gluten antibodies are really high, right? Let me think. He did get glutened at school (one serving animal crackers) several months ago.
As for dairy & soy, it's possible that he could have gotten a stray trace here and there, but not in our day to day household foods...
What do you think, then?
As for dairy & soy, it's possible that he could have gotten a stray trace here and there, but not in our day to day household foods...
What do you think, then?
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Well, once we are sensitized to a food item, and we cut it out of our diet, for a while, a re-exposure tends to result in a very high buildup of antibodies, because the immune system sentinels are all standing around on guard, just waiting for something like that to happen, and when it does happen, the immune system really "pounces" on it. So, the animal crackers could explain the high level of gliadin antibodies.
As far as I'm aware, casein and soy antibodies only persist at elevated levels for a few weeks, so exposure to them had to occur fairly recently, (IOW, within a few weeks prior to the time the sample was obtained). Maybe they are more persistent than I realize, though - there's not a lot of published information available on "immunokinetics", (I'm not sure whether or not that's even a word, but I'm referring to the kinetics of immunological events, such as the decay rate of antibodies). Could his vitamins be the source of soy or casein?
This just goes to show, once again, how difficult it is to totally avoid all traces of our intolerances, because they are so ubiquitous in our food supply.
Tex
P. S. Anytime you want to delete your own post, all you have to do is to click on the little "X" in the upper, right-hand corner of your posted message, and then confirm that selection, in the subsequent pop-up window.
As far as I'm aware, casein and soy antibodies only persist at elevated levels for a few weeks, so exposure to them had to occur fairly recently, (IOW, within a few weeks prior to the time the sample was obtained). Maybe they are more persistent than I realize, though - there's not a lot of published information available on "immunokinetics", (I'm not sure whether or not that's even a word, but I'm referring to the kinetics of immunological events, such as the decay rate of antibodies). Could his vitamins be the source of soy or casein?
This just goes to show, once again, how difficult it is to totally avoid all traces of our intolerances, because they are so ubiquitous in our food supply.
Tex
P. S. Anytime you want to delete your own post, all you have to do is to click on the little "X" in the upper, right-hand corner of your posted message, and then confirm that selection, in the subsequent pop-up window.
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 Kim,
Interesting results. I'm sure it is helpful to have the actual documentation.
My repeat Enterolab gluten antibody test was even higher after a year of GF, so I know that gluten can take quite a while to diminish. Like Tex, however, I am thinking that there must be some source of exposure to the intolerances.
Is Jackson (love the name) in a child care setting? Are there times during the day where you can't supervise what he eats?
Here's an idea
. Could you post a sample day or two of menus? That way everyone could make suggestions as to possible sources of contaminants.
Love,
Polly
Interesting results. I'm sure it is helpful to have the actual documentation.
My repeat Enterolab gluten antibody test was even higher after a year of GF, so I know that gluten can take quite a while to diminish. Like Tex, however, I am thinking that there must be some source of exposure to the intolerances.
Is Jackson (love the name) in a child care setting? Are there times during the day where you can't supervise what he eats?
Here's an idea
. Could you post a sample day or two of menus? That way everyone could make suggestions as to possible sources of contaminants.Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi. Jackson (thanks, Polly!) does go to preschool 3 days per week. But, when any gluten sneaks in (once), they're quick to tell me. This is usually during a party situation, which is rare. He's pretty good about asking if something has gluten, though every once in awhile, he tries to sneak something in.
Since I share his allergies, most of what we have here is (to my knowledge) ok.
Typical day:
Breakfast: Rice Krispies (I DID just notice that his Amazon Kids cereal had soy in it, but he ate this only a few days -- & after EL test)
Coconut milk
flaxseeds & blueberries
Lunch: Homemade bread (Pamela's)
Applegate Farms turkey
Glutino pretzels (hmmm, need to check that label for soy)
or Almond Thin crackers (plain) or Snap Peas
banana or apple
sprouted sunflower seeds (bought in bulk; no oils added that I remember reading)
Snack: Homemade bagel (Pamela's mix)
Almond butter
Raspberry jam
or flat fruit bar (either from Trader Joe's or one other with no allergens listed)
Dinner: Well-controlled GF (soup, rice pasta, eggs, etc.)
Snack: Brownie (Namaste); Tempt Dessert (ice cream-like); other GF/DF/SF cookie
Thanks for your help. I mentioned the Amazon kids cereal above. He's not chosen this one in a looong time, but last week, he wanted it for a few days in a row. Bad, smelly poops for several days, and then I noticed the soy oil. Since removing it, poops are better!!
Since I share his allergies, most of what we have here is (to my knowledge) ok.
Typical day:
Breakfast: Rice Krispies (I DID just notice that his Amazon Kids cereal had soy in it, but he ate this only a few days -- & after EL test)
Coconut milk
flaxseeds & blueberries
Lunch: Homemade bread (Pamela's)
Applegate Farms turkey
Glutino pretzels (hmmm, need to check that label for soy)
or Almond Thin crackers (plain) or Snap Peas
banana or apple
sprouted sunflower seeds (bought in bulk; no oils added that I remember reading)
Snack: Homemade bagel (Pamela's mix)
Almond butter
Raspberry jam
or flat fruit bar (either from Trader Joe's or one other with no allergens listed)
Dinner: Well-controlled GF (soup, rice pasta, eggs, etc.)
Snack: Brownie (Namaste); Tempt Dessert (ice cream-like); other GF/DF/SF cookie
Thanks for your help. I mentioned the Amazon kids cereal above. He's not chosen this one in a looong time, but last week, he wanted it for a few days in a row. Bad, smelly poops for several days, and then I noticed the soy oil. Since removing it, poops are better!!
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Hiya Kim,
Thanks for posting sample meals. I admire moms so much who have to do this kind of individualizing.....with everything else going on with kids, you have to be super human to plan, shop, and cook appropriate foods, not to mention trying to keep them safe in public. It probably doesn't even help much that you are on a restricted diet - he most likely wants the kinds of foods that kiddies like.
At first glance all appears to be OK at home. But I can't help but keep thinking about the day care setting. I'm sure they are careful, but I think it must be nearly impossible to prevent all glutening, just like it is so difficult to prevent the spread of communicable disease in that setting. Oh, I know that centers promote frequent handwashing and wash all of the toys down each day, but STILL it is so difficult to control the habits of 3 year olds. You said there is gluten rarely. Does this mean they serve only GF snacks to all of the kids, for Jackson's benefit? And what about the dairy and soy? It seems that the most common snack in day care centers is goldfish, in my experience! Do the other kids have one snack and Jackson is given his own safe snack to eat? If the others are eating everything, those crumbs are going to be everywhere, and those glutened hands will be touching everything, no matter how diligent the staff is with cleaning up.
Just a thought......have you had a chance to observe some sessions to see the routines?
Jackson sounds like a sweetie - it always melts my heart when little ones are aware of their intolerances and advocate for themselves!
Love,
Polly
Thanks for posting sample meals. I admire moms so much who have to do this kind of individualizing.....with everything else going on with kids, you have to be super human to plan, shop, and cook appropriate foods, not to mention trying to keep them safe in public. It probably doesn't even help much that you are on a restricted diet - he most likely wants the kinds of foods that kiddies like.
At first glance all appears to be OK at home. But I can't help but keep thinking about the day care setting. I'm sure they are careful, but I think it must be nearly impossible to prevent all glutening, just like it is so difficult to prevent the spread of communicable disease in that setting. Oh, I know that centers promote frequent handwashing and wash all of the toys down each day, but STILL it is so difficult to control the habits of 3 year olds. You said there is gluten rarely. Does this mean they serve only GF snacks to all of the kids, for Jackson's benefit? And what about the dairy and soy? It seems that the most common snack in day care centers is goldfish, in my experience! Do the other kids have one snack and Jackson is given his own safe snack to eat? If the others are eating everything, those crumbs are going to be everywhere, and those glutened hands will be touching everything, no matter how diligent the staff is with cleaning up.
Just a thought......have you had a chance to observe some sessions to see the routines?
Jackson sounds like a sweetie - it always melts my heart when little ones are aware of their intolerances and advocate for themselves!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Kim,
What about Play Doh at Day Care? Kelloggs rice krispies are not GF.
Tex and Polly,
I have some questions abut the reintroduction of casein. Why is it that some babies are allergic to dairy and they "grow out of it" by their adolescence and have no signs of allergy? How does that adaptation occur? Or is it that one is still truly allergic (evident by antibody production) but somehow not symptomatic?
As you know I am doing some work with food sensitivity now (not allergy, but sensitivities). In some cases people can regain oral tolerance of foods after abstaining from them for a peiod of time (not always, but sometimes). I am wondering if after a period of gut healing off of gluten and dairy, if one might be able to better tolerate casein. I say this partially because my son was reactive to both gluten and casein per EL and it has now been 11 months. He has normal BMs. When he gets glutened he definitley has a reaction, but when he has had a dairy indiscretion, he doesn't seem symptomatic. I know that many celiacs can't initially tolerate dairy and it is believed to be a lactose problem, but I am starting to wonder if casein might be better tolerated once the tight junctions have healed. What are your thoughts?
Also, how did Dr. Fine come up with the cutoff levels to determine if one needs to be off of gluten, casein etc? He always puts his disclaimer on there to say you could be reactive at any level.
Mary Beth
What about Play Doh at Day Care? Kelloggs rice krispies are not GF.
Tex and Polly,
I have some questions abut the reintroduction of casein. Why is it that some babies are allergic to dairy and they "grow out of it" by their adolescence and have no signs of allergy? How does that adaptation occur? Or is it that one is still truly allergic (evident by antibody production) but somehow not symptomatic?
As you know I am doing some work with food sensitivity now (not allergy, but sensitivities). In some cases people can regain oral tolerance of foods after abstaining from them for a peiod of time (not always, but sometimes). I am wondering if after a period of gut healing off of gluten and dairy, if one might be able to better tolerate casein. I say this partially because my son was reactive to both gluten and casein per EL and it has now been 11 months. He has normal BMs. When he gets glutened he definitley has a reaction, but when he has had a dairy indiscretion, he doesn't seem symptomatic. I know that many celiacs can't initially tolerate dairy and it is believed to be a lactose problem, but I am starting to wonder if casein might be better tolerated once the tight junctions have healed. What are your thoughts?
Also, how did Dr. Fine come up with the cutoff levels to determine if one needs to be off of gluten, casein etc? He always puts his disclaimer on there to say you could be reactive at any level.
Mary Beth
Thanks for your words, Polly. I go to J's preschool often, yes. The kids always bring their own lunches and snacks, so J gets what I pack. Thankfully, he usually does like the typical meals I create. Right now, we're enjoying kale/sausage/potato soup since it's so cold! Tonight I made up some lentil/pumpkin patties with breadcrumbs and eggs. At first, I'd intended them to be a finger food for the baby (and they are welcomed by him, certainly), but J loves them too... Every now and then, he doesn't care for something I make...
So, they'll have a parties once a month or so, and that's where there may be a greater chance of J getting illegals. This is the instance during which he was glutened this fall. Up until this recent test result, I've not had the teachers be diligent about dairy & soy b/c I didn't know for sure. If there's a chance to volunteer to bake, I usually grab up the 'cookie' or 'muffin' slot &" fill it with GF, so that J can at least eat some of what the others are having. He does LOVE cheese, and at school parties was the one time I allowed it (before getting EL test back). Will have to think of something special to have for him when they do that again...and they *always* do cheese :(
As for "Rice Krispies", we use Erewhon brand. We call most every cereal "Rice Krispies" (lol), so that's where that came from! Jackson calls Rice Chex "Rice Krispies" too. I think I'll pick up some Chex b/c he likes those too...
Interesting thoughts on lactose/dairy. I notice that of all of my intolerances, dairy is one that is sometimes ok; sometimes not...
I do so miss cheese....it would be nice! But, after my trial serving last week, I'm definitely not healed yet! Great for your son, mb!
So, they'll have a parties once a month or so, and that's where there may be a greater chance of J getting illegals. This is the instance during which he was glutened this fall. Up until this recent test result, I've not had the teachers be diligent about dairy & soy b/c I didn't know for sure. If there's a chance to volunteer to bake, I usually grab up the 'cookie' or 'muffin' slot &" fill it with GF, so that J can at least eat some of what the others are having. He does LOVE cheese, and at school parties was the one time I allowed it (before getting EL test back). Will have to think of something special to have for him when they do that again...and they *always* do cheese :(
As for "Rice Krispies", we use Erewhon brand. We call most every cereal "Rice Krispies" (lol), so that's where that came from! Jackson calls Rice Chex "Rice Krispies" too. I think I'll pick up some Chex b/c he likes those too...
Interesting thoughts on lactose/dairy. I notice that of all of my intolerances, dairy is one that is sometimes ok; sometimes not...
I do so miss cheese....it would be nice! But, after my trial serving last week, I'm definitely not healed yet! Great for your son, mb!
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Hi Kimberley-
My daughter is also working on the GF/CF/SF diet & had to stop using the Pamela's mixes because they contain dairy. I found some very good bread recipes on the Karina's kitchen site (sandwich bread & focaccia are favorites).
Also all varieties of the Glutino pretzels seem to have soy-the EnerG brand (I think) are OK, but we can only find them in small pricey bags. Suggest you double check the Almond Thins label too-think I stopped buying them due to dairy or soy.
Snacks seem to be the most difficult part of this diet for her.
Wish you well...it surely is a challenge.
Sue
My daughter is also working on the GF/CF/SF diet & had to stop using the Pamela's mixes because they contain dairy. I found some very good bread recipes on the Karina's kitchen site (sandwich bread & focaccia are favorites).
Also all varieties of the Glutino pretzels seem to have soy-the EnerG brand (I think) are OK, but we can only find them in small pricey bags. Suggest you double check the Almond Thins label too-think I stopped buying them due to dairy or soy.
Snacks seem to be the most difficult part of this diet for her.
Wish you well...it surely is a challenge.
Sue
Mary Beth,
Those are some tough questions, and I'm hoping that someone who actually knows what he or she is doing, will come along to answer them, because I sure don't know the answers.
I've heard the same thing about outgrowing gluten-sensitive enteropathy, but I've also read about later attempts to reintroduce gluten into the diet, which seemed successful at first, but eventually resulted in reestablishment of the disease, as the immune system slowly began to produce antibodies, again. From what I can gather, this is also a frequent outcome when celiacs attempt to add oats to their diet. They seem to be successful, initially, but eventually, the body begins to produce antibodies against the avenin, resulting in a reaction, in many cases.
I have a hunch that if an allergen is totally avoided for a long enough period of time, (IOW, until the antibodies actually decay to zero), the immune system may forget about that allergen, and have to relearn everything about it, if it's reintroduced, a process that can take quite some time.
I never had a stool test for casein, because there was no doubt that I was sensitive to it, (both lactose and casein, as determined by selective dietary testing, when I was reacting), and yet I can tolerate dairy products now, without any problems. The only way that I can explain it, is to rationalize that when my gut was hypersensitive, and my immune system was at high alert, it mistakenly identified similar peptides in casein's amino acid chain, as an alpha gliadin peptide, or possibly one of the as-yet-undescribed glutenin peptides that are suspected to also cause gluten-sensitive enteropthy. Perhaps once the antibody production levels recede to a very low level, the immune system is far less likely to make a mistaken identification.
Consider the wild turkey, for example. Their vision, (and hearing), is normally far more acute than the vision of any human. And yet, when their hormones begin to flow, you can call a wily old gobbler in to a pitiful-looking plastic decoy, that looks somewhat like a hen turkey, and they will strut around, and perform for that plastic decoy, as if it were the real thing, never doubting it's integrity. I've recorded videos of gobblers even rubbing against that lifeless piece of plastic, and seemingly taking forever, before they eventually figure out that something is not quite right.
That could never happen, if they weren't blinded by hormones. Maybe something similar happens in the immune system, when it is fully engaged.
I'm thinking that somewhere on the net, I read an article describing how they determined those thresholds for a positive test result. I believe that they were confirmed by actual biopsy results, if I recall correctly, but I'm not positive about that.
One of the reasons why he uses that disclaimer, is because of an unpublicized limitation for the tests. (It's not a secret, it's just not advertised). Each test is very specific. IOW, the antigliadin test only tests for antibodies to the alpha gliadin sequence in the amino acid chain, for wheat gluten. The test provides absolutely no information on any of the other gliadin peptides, nor does it provide any information on any of the glutenin sequences in gluten, to which celiacs almost certainly react. Generally speaking, that information is redundant for most of us, because if we react to any of them, we almost certainly react to the alpha gliadin. In the real world, however, there probably are a few exceptions, IOW, there probably are a few people who possibly might not react to the alpha gliadin peptide, (thus yielding a negative test result), but they do react to one of the others, or to one of the glutenin peptides, (again, yielding a negative test result, because their test does not cover that possibility).
Likewise, the gliadin test provides absolutely no information on reactions to any hordein peptides, (barley), secalin peptides, (rye), or avenin peptides, (oats). The reason I happen to know that, is because I called them when I was doing an oat challenge, to see if a stool test might confirm my results, and they gave me the basic details on how those tests work.
Additionally, the egg test only tests for the primary protein in the albumen, (white), of the egg. The minor proteins are not tested, nor are any of the proteins in the egg yolk. You can deduce how the other tests were developed, to target the single protein in each particular food, that is most likely to cause a reaction.
Anyway, that's why certain individuals might still react to a food, even after a negative test result, (not even considering the fact that some individuals are unable to produce IgA antibodies in normal quantities.)
Tex
Those are some tough questions, and I'm hoping that someone who actually knows what he or she is doing, will come along to answer them, because I sure don't know the answers.
I've heard the same thing about outgrowing gluten-sensitive enteropathy, but I've also read about later attempts to reintroduce gluten into the diet, which seemed successful at first, but eventually resulted in reestablishment of the disease, as the immune system slowly began to produce antibodies, again. From what I can gather, this is also a frequent outcome when celiacs attempt to add oats to their diet. They seem to be successful, initially, but eventually, the body begins to produce antibodies against the avenin, resulting in a reaction, in many cases.
I have a hunch that if an allergen is totally avoided for a long enough period of time, (IOW, until the antibodies actually decay to zero), the immune system may forget about that allergen, and have to relearn everything about it, if it's reintroduced, a process that can take quite some time.
I never had a stool test for casein, because there was no doubt that I was sensitive to it, (both lactose and casein, as determined by selective dietary testing, when I was reacting), and yet I can tolerate dairy products now, without any problems. The only way that I can explain it, is to rationalize that when my gut was hypersensitive, and my immune system was at high alert, it mistakenly identified similar peptides in casein's amino acid chain, as an alpha gliadin peptide, or possibly one of the as-yet-undescribed glutenin peptides that are suspected to also cause gluten-sensitive enteropthy. Perhaps once the antibody production levels recede to a very low level, the immune system is far less likely to make a mistaken identification.
Consider the wild turkey, for example. Their vision, (and hearing), is normally far more acute than the vision of any human. And yet, when their hormones begin to flow, you can call a wily old gobbler in to a pitiful-looking plastic decoy, that looks somewhat like a hen turkey, and they will strut around, and perform for that plastic decoy, as if it were the real thing, never doubting it's integrity. I've recorded videos of gobblers even rubbing against that lifeless piece of plastic, and seemingly taking forever, before they eventually figure out that something is not quite right.
That could never happen, if they weren't blinded by hormones. Maybe something similar happens in the immune system, when it is fully engaged.I'm thinking that somewhere on the net, I read an article describing how they determined those thresholds for a positive test result. I believe that they were confirmed by actual biopsy results, if I recall correctly, but I'm not positive about that.
One of the reasons why he uses that disclaimer, is because of an unpublicized limitation for the tests. (It's not a secret, it's just not advertised). Each test is very specific. IOW, the antigliadin test only tests for antibodies to the alpha gliadin sequence in the amino acid chain, for wheat gluten. The test provides absolutely no information on any of the other gliadin peptides, nor does it provide any information on any of the glutenin sequences in gluten, to which celiacs almost certainly react. Generally speaking, that information is redundant for most of us, because if we react to any of them, we almost certainly react to the alpha gliadin. In the real world, however, there probably are a few exceptions, IOW, there probably are a few people who possibly might not react to the alpha gliadin peptide, (thus yielding a negative test result), but they do react to one of the others, or to one of the glutenin peptides, (again, yielding a negative test result, because their test does not cover that possibility).
Likewise, the gliadin test provides absolutely no information on reactions to any hordein peptides, (barley), secalin peptides, (rye), or avenin peptides, (oats). The reason I happen to know that, is because I called them when I was doing an oat challenge, to see if a stool test might confirm my results, and they gave me the basic details on how those tests work.
Additionally, the egg test only tests for the primary protein in the albumen, (white), of the egg. The minor proteins are not tested, nor are any of the proteins in the egg yolk. You can deduce how the other tests were developed, to target the single protein in each particular food, that is most likely to cause a reaction.
Anyway, that's why certain individuals might still react to a food, even after a negative test result, (not even considering the fact that some individuals are unable to produce IgA antibodies in normal quantities.)
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 tips, Sue. I do see where Almond Thins have dairy. Shoot!! Any crackers you've found that are passable? Suppose I better get baking. Grr... I can't throw these out yet though--not until we have a substitute. They are his favorite! And he's doing well right now -- with no gas, D or C, so I think I can transition him off slowly.
Also, the soy lecithin in Glutino pretzels--yes. Another shoot. I've read mixed info. on whether the soy lecithin causes a response, but I can certainly see where that's probable since it's soy, after all.
Our Pamela's Bread Mix (newer formulation) does not list soy or dairy, but does have the standard "Also processed in a facility with dairy, etc..." The All-Purpose baking mix does have dairy, I know. This mix is a different package with ingredients (Sorghum flour, Tapioca flour, White Rice flour, Sweet Rice Flour, Brown Rice Flour, Evap. Cane Sugar, Chicory Root, Millet Flour, Molasses, Hone, Rice Bran, Sea Salt, Xanthum Gum, Yeast).
J's symptoms are pretty good right now. I think we'll transition to EnerG pretzels as I can find them (they are harder to come upon, I remember), and will look for another cracker...
Thanks for the tips!!
Also, the soy lecithin in Glutino pretzels--yes. Another shoot. I've read mixed info. on whether the soy lecithin causes a response, but I can certainly see where that's probable since it's soy, after all.
Our Pamela's Bread Mix (newer formulation) does not list soy or dairy, but does have the standard "Also processed in a facility with dairy, etc..." The All-Purpose baking mix does have dairy, I know. This mix is a different package with ingredients (Sorghum flour, Tapioca flour, White Rice flour, Sweet Rice Flour, Brown Rice Flour, Evap. Cane Sugar, Chicory Root, Millet Flour, Molasses, Hone, Rice Bran, Sea Salt, Xanthum Gum, Yeast).
J's symptoms are pretty good right now. I think we'll transition to EnerG pretzels as I can find them (they are harder to come upon, I remember), and will look for another cracker...
Thanks for the tips!!
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Kimberley,
Regarding the Pamela's bread mix, be aware that some of us react to tapioca flour.
For crackers, I've always liked these, and my local health food store carries them:
http://www.edwardandsons.com/es_shop_snaps.itml
You have to carefully read the ingredient lists, because some flavors contain soy, and one or two contain dairy products, but the safe ones are very good crackers.
You might find something else of interest in their product line at their main page:
http://www.edwardandsons.com/
For example, there are a couple of GF cheese sauce mixes, farther down the page here, provided that yeast, tapioca flour, and/or green lentil flour are not a problem:
http://www.edwardandsons.com/reo_shop_chreese.itml
Tex
Regarding the Pamela's bread mix, be aware that some of us react to tapioca flour.
For crackers, I've always liked these, and my local health food store carries them:
http://www.edwardandsons.com/es_shop_snaps.itml
You have to carefully read the ingredient lists, because some flavors contain soy, and one or two contain dairy products, but the safe ones are very good crackers.
You might find something else of interest in their product line at their main page:
http://www.edwardandsons.com/
For example, there are a couple of GF cheese sauce mixes, farther down the page here, provided that yeast, tapioca flour, and/or green lentil flour are not a problem:
http://www.edwardandsons.com/reo_shop_chreese.itml
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.
Kimberley-
Found an interesting quinoa cracker recipe on http://www.nourishingmeals.com/ if you want to try making your own. Other cracker baking ideas on www.glutenfreegoddess
I've been buying the Glutino brand-original flavor. They are much like Ritz in regard to flavor-but do carry that familiar warning of possible cross-contamination. Sure hope you come up with some decent snack options for your little one.
Thanks, Tex-I will have to look for the Edwards crackers-not sure they are available around here.
I've never been big on buying convenience foods, but it does get a bit overwhelming when everything seems off limits! Eliminating gluten seems so easy after 3 years.. I have adjusted to no dairy and soy gradually. Now we are attempting to add all refined sugars to the mix.....aggghhhhh. Time for a personal chef!
Sue
PS-Checked out the label on some EnerG pretzels today & they had soy too :(
Found an interesting quinoa cracker recipe on http://www.nourishingmeals.com/ if you want to try making your own. Other cracker baking ideas on www.glutenfreegoddess
I've been buying the Glutino brand-original flavor. They are much like Ritz in regard to flavor-but do carry that familiar warning of possible cross-contamination. Sure hope you come up with some decent snack options for your little one.
Thanks, Tex-I will have to look for the Edwards crackers-not sure they are available around here.
I've never been big on buying convenience foods, but it does get a bit overwhelming when everything seems off limits! Eliminating gluten seems so easy after 3 years.. I have adjusted to no dairy and soy gradually. Now we are attempting to add all refined sugars to the mix.....aggghhhhh. Time for a personal chef!
Sue
PS-Checked out the label on some EnerG pretzels today & they had soy too :(